Karlstad University StudiesISSN 1403-8099

ISBN 91-7063-038-0

Faculty of Social and Life Sciences Department of Nursing

DISSertatIoN

Karlstad University Studies2006:7

Maria Larsson

eating problems in patients with head and neck cancer

treated with radiotherapy

Needs, problems and support during the trajectory of careM

aria Larsson Eating problem

s in patients with head and neck cancer treated w

ith radiotherapy

eating problems in patients with head and neck cancer

treated with radiotherapy

Head and neck cancer is a physically and emotionally devastating disease. these cancer forms have a profound impact on the most fundamental activities of the patients’ daily life such as the ability to speak, breath, eat and drink, and socialize. even though treat-ment of head and neck cancer differs worldwide, the majority of patients are treated with radiotherapy or surgery, either as single modality or in combination. Sometimes brachytherapy or chemotherapy are given as well. therefore, multidisciplinary care is needed that requires coordinated interventions of several different health care profes-sionals during the trajectory of care. there is a lack of studies exploring the occurrence of eating problems in head and neck cancer patients treated with radiotherapy, and these patients’ nutritional situation over a longer period of time, from diagnosis, during treat-ment, and throughout the rehabilitation period. Furthermore, few studies have focused on these patients’ own experiences of having eating problems and few studies identify adequate nursing interventions to deal with these problems during the trajectory of care. this thesis is an attempt to contribute to the knowledge and understanding of these patients’ experiences, situation and needs in daily life regarding these issues during the whole trajectory of care. I hope that the findings of this thesis will contribute to the development of a high quality of care for this vulnerable group of patients.

Karlstad University Studies

2006:7

Maria Larsson

Eating problems in patients with head and neck cancer

treated with radiotherapy

Needs, problems and support during the trajectory of care

Maria Larsson. Eating problems in patients with head and neck cancer treated with radiotherapy – needs, problems and support during the trajectory of care.

Dissertation

Karlstad University Studies 2006:7ISSN 1403-8099ISBN 91-7063-038-0

© The author

Distribution:Karlstad UniversityFaculty of Social and Life Sciences Department of NursingSE-651 88 KARLSTAD SWEDEN+46 54-700 10 00

www.kau.se

Printed at: Universitetstryckeriet, Karlstad 2006

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Abstract

Eating problems in patients with head and neck cancer treated with radiotherapy: Needs, problems and support during the trajectory of care Aim: The overall aim of this thesis was to acquire knowledge about daily life with focus on eating problems during the trajectory of care for patients with head and neck cancer treated with radiotherapy. Method: The data in study I were gained from medical and nursing records of 50 patients. Documented parameters of eating problems, their causes and consequences, and undertaken interventions were collected retrospectively before treatment, during radiotherapy, and one, six, and twelve months after completion of treatment, using a study-specific audit instrument. Data were analysed with descriptive and inferential non-parametric statistics. In study II eight patients were interviewed during the radiotherapy treatment period with focus on experiences of eating problems. In study III nine patients were interviewed six to twelve weeks after treatment with the focus on experiences of daily life during the trajectory of care having eating problems. In study IV twelve patients were interviewed about their conceptions of the significance of a supportive nursing care clinic during the whole trajectory of care. Data were analysed with interpretative phenomenology (II, III) and phenomenography (IV). Findings: The four studies showed that being a patient in the trajectory of care often meant that life was disturbed and threatened. This was partly due to the eating problems and their consequences, which could occur during the whole trajectory of care (I, III, IV) but was experienced as most intense during radiotherapy (II) and the nearest weeks after completion of radiotherapy (III). The disturbances and threats experienced due to eating problems could affect the whole person as they were physical (I-IV), psychological, social and existential (II, III). The experiences of eating problems due to the tumour and its treatment and the experience of having cancer per se were strongly connected and together they disturbed and threatened the patients’ daily life. The other part that disturbed the patients’ life was the waiting in suspense. A long and trying waiting in uncertainty was experienced due to lack of knowledge and support, practical as well as emotional. This was most pronounced during pauses in radiotherapy (III) and after completion of the treatment when the lack of support from the health care was obvious (I, III). The patients were then most often left to their own devices. In order to endure, they needed both inner strength, described as own coping strategies, and strength from outside, described as support from family, friends and health care professionals (II, III). The nurse clinic was found to give a hand to hold during the whole trajectory of care (IV). It could meet these patients’ needs of knowledge, care and support, both concerning practical measures related to the eating problems and other side-effects of the treatment, and concerning their emotional needs. In addition the nurse clinic could support the relatives in their worries and anxiety (IV). Conclusion: This thesis showed the necessity of continuous assessments, interventions and evaluations of these patients’ problems, as well as the patients’ great needs of information and support throughout the trajectory of care. A supportive nursing care clinic can contribute to head and neck cancer patients’ health and well-being. Keywords: head and neck cancer patients, radiotherapy, eating problems, nutrition, support, trajectory of care, nurse clinic.

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Svensk sammanfattning

Ätproblem hos patienter med cancer i huvud- och halsområdet som strålbehandlas: Behov, problem och stöd i vårdkedjan Syfte: Avhandlingens övergripande syfte var att erhålla kunskap om dagligt liv med fokus på ätproblem i vårdkedjan hos patienter med cancer i huvud- och halsområdet före, under och efter behandling. Metod: Datamaterialet i studie I hämtades från medicinska och omvårdnadsjournaler för 50 patienter. Uppgifter om dokumenterade ätproblem, dess orsaker och konsekvenser samt genomförda interventioner samlades in retrospektivt före och under strålbehandlingen samt en, sex och tolv månader efter avslutad behandling med hjälp av ett studiespecifikt instrument. Datamaterialet analyserades med deskriptiv och analytisk statistik. I studie II intervjuades åtta patienter under pågående strålbehandling med fokus på upplevelser av ätproblem. I studie III intervjuades nio patienter sex till tolv veckor efter avslutad behandling med fokus på upplevelser av ätproblem i det dagliga livet genom vårdkedjan. I studie IV intervjuades tolv patienter om deras uppfattningar av en sjuksköterskemottagnings betydelse genom hela vårdkedjan. Intervjuerna analyserades med tolkande fenomenologi (II, III) och fenomenografi (IV). Resultat: De fyra studierna visade att vara patient i vårdkedjan ofta betydde att livet var stört och hotat. Detta berodde delvis på ätproblemen och dess konsekvenser. Dessa kunde förekomma i hela vårdkedjan (I, III, IV) men var mest intensiva under strålbehandlingen (II) och de närmaste veckorna efter avslutad strålbehandling (III). De störningar och hot som upplevdes på grund av ätproblemen påverkade ofta hela personen eftersom de var fysiska (I-IV), psykiska, sociala och existentiella (II, III). Upplevelserna av att ha ätproblem på grund av cancern och dess behandling och upplevelsen av att ha cancer i sig var starkt sammanbundna och störde och hotade patienternas dagliga liv. Den andra delen som störde patienternas liv var väntan i ovisshet. Patienterna upplevde en lång, påfrestande och osäker väntan på grund av bristande kunskaper och stöd, praktiskt så väl som emotionellt. Detta var mest uttalat under pauser i behandlingen (III) och efter avslutad behandling när bristen på stöd från hälso- och sjukvården var uppenbar (I, III). Patienterna var då oftast lämnade att klara sig själva. För att härda ut behövde de både en inre styrka, beskriven som egna copingstrategier, och en yttre styrka, beskriven som stöd från familj, vänner och hälso- och sjukvårdspersonal (II, III). Sjuksköterskemottagningen visade sig vara en trygghet och en säkerhet i genom hela vårdkedjan (IV). Mottagningen kunde möta patienternas behov av kunskap, omsorg och stöd både med avseende på praktiska problem relaterade till ätproblem och andra biverkningar av behandlingen samt deras emotionella behov. Sjuksköterske-mottagningen kunde också stödja de anhöriga i deras oro och ångest (IV). Konklusion: Avhandlingen visade på nödvändigheten av en kontinuerlig bedömning, behandling och utvärdering av dessa patienters problem, samt på deras stora behov av information och stöd i hela vårdkedjan. En sjuksköterskemottagning kan bidra till huvud- och halscancer patienters hälsa och välbefinnande. Nyckelord: huvud- och halscancer patienter, strålbehandling, ätproblem, nutrition, stöd, vårdkedja, sjuksköterskemottagning.

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Sometimes it is not what it is said or done, but the very

presence of the nurse that counts.

“Piglet sidled up to Pooh from behind. ‘Pooh’ he

whispered. ‘Yes, Piglet?’ ‘Nothing’ said Piglet, taking

Pooh’s paw. ‘I just wanted to be sure of you’.”

(Milne 1957, The World of Pooh, p.261)

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Table of contents

Abstract 3

Svensk sammanfattning 4

Table of contents 6

Original papers 8

Introduction 9

Background 10

Eating and eating problems 10 Head and neck cancer 10 Treatment and their side-effects 12 Eating problems in patients with head and neck cancer 14 Organisation and content in the trajectory of care 15 Nurse-led clinics as a way to increase quality of care 16 The trajectory of care from the patients’ perspective 17

Rationale for the study 20

General and specific aims 21

Methods 22

Methodological framework 22 Design 23 Care context 24 Regular care (study I-IV) 24 The supportive nursing care clinic (study IV) 25

Material and participants 26 Data collection 28 Audit instrument (study I) 28 Interviews (study II-IV) 29

Procedure (study I-IV) 29 Data analysis 31 Statistical analyses (study I) 31 Phenomenology (study II, III) 31 Phenomenography (study IV) 33

Reliability, validity and trustworthiness 34 Study I 34 Study II-IV 35

Ethical considerations 36

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Main findings 37

Occurrence of eating problems and their causes (study I) 37 Consequences of eating problems (study I) 38 Medical treatment and nursing care (study I) 39 Lived experiences of eating problems during radiotherapy (study II) 40 Lived experiences of daily life during the trajectory of care having eating problems (study III) 41 The significance of a supportive nursing care clinic (study IV) 44

Comprehensive understanding of the findings 46

Being a patient during the trajectory of care 46

Discussion 48

Eating problems, causes and treatment during the trajectory of care 48 Consequences of eating problems in daily life 50 The patients’ need of support during the trajectory of care 53 The significance of a supportive nursing care clinic 54

Methodological considerations 56

Reliability and validity of the quantitative chart review 56 Trustworthiness of the qualitative interview studies 57

Conclusions 60

Future research 62

Acknowledgements 63

References 64

Appendix 1 85

Audit instrument (study I) 85

Studies I-IV

8

Original papers

This thesis is based on the following papers which will be referred to in the text

by their Roman numerals:

I. Larsson, M., Hedelin, B., Johansson, I., & Athlin, E. (2005). Eating

problems and weight loss for patients with head and neck cancer: A chart review from diagnosis until one year after treatment. Cancer Nursing 29(6), 425-435.

II. Larsson, M., Hedelin, B., & Athlin, E. (2003). Lived experiences of

eating problems for patients with head and neck cancer during radiotherapy. Journal of Clinical Nursing 12(4), 562-570.

III. Larsson, M., Hedelin, B., & Athlin, E. Needing a hand to hold: Lived experiences during the trajectory of care for patients with head and neck cancer treated with radiotherapy (re-submitted).

IV. Larsson, M., Hedelin, B., & Athlin, E. A supportive nursing care

clinic: Conceptions of patients with head and neck cancer European Journal of Oncology Nursing. (accepted for publication).

Reprints were made with kind permission from the publishers.

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Introduction

Head and neck cancer is a physically and emotionally devastating disease, which has a profound impact on the most fundamental activities of the patients’ daily life such as the ability to speak, breath, eat and drink, and socialize (Langius, Björvell & Lind, 1993; Long, D'Antonio, Robinson et al., 1996; Wells, 1998a). Unlike other forms of cancer the disease and side-effects of treatment cannot be hidden as tumours of the head and neck affect the most visible area of the body. The care and treatment of these patients is complex as multimodality treatment is common. Multidisciplinary care is needed which requires coordinated interventions of several different health care professionals during the trajectory of care. In my work as an oncology nurse I have met these patients and seen how the side-effects of radiotherapy has been superimposed on existing eating problems and caused new problems resulting in significant morbidity and suffering. In a review of the scientific literature I found numerous studies describing the side effects of radiotherapy to the head and neck, in particular physical effects (Larsson, 1999). However, few studies were found which identify adequate nursing interventions to deal with these problems. In addition, few studies focused on head and neck cancer patients’ own experiences of the problems, which the disease and its treatment entail, in a trajectory perspective. The main part of this thesis therefore consists of patients’ subjective descriptions of their problems and needs during the trajectory of care; before, during and after completion of treatment. The thesis has mainly been performed in a qualitative approach, since I believe that nursing research aiming at understanding patients’ experiences in their daily life has a potential to identify adequate interventions that can meet the patients’ individual needs. However, I have also used a quantitative method in one part of the thesis, since I regard nursing knowledge to concern both what is individual and unique and what is general. We need various methods for different kinds of questions and problems in order to obtain necessary knowledge to develop nursing care. Thus, my perspective on nursing research is complementary. I hope that the findings of this thesis will contribute to the development of a high quality of care for this vulnerable group of patients.

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Background

Eating and eating problems

Eating is essential for life as it provides nourishment and energy. To get enough and adequate food is therefore critical to our physiologic wellbeing, but what, when, and how we eat also contribute to our social, cultural, and psychological quality of life (Barr & Schumacher, 2003). In many ways, eating special kinds of food defines who we are, our social and cultural identity (Ilmonen, 1990; Lupton, 1994; Sidenvall, 2003) and is entwined with our sense of self and identity (Barr & Schumacher, 2003; Chiva, 1997). It has also social and cultural aspects and is one way of creating and expressing relationships between people (Lupton, 1994). Food is thus more than a source of nutrition. Eating may be viewed as a complex process or activity and the consumed amount of food and nutritional status may be viewed as its outcome (Axelsson, 1988; Westergren, 2003; Whitney, Cataldo & Rolfes, 2002). Eating as a process can be understood as a series of integrated and interacting components which may be grouped as handling food on the plate, transporting food into the mouth, and manipulating food in the mouth and swallowing (Athlin, Norberg, Axelsson et al., 1989) or as ingestion, deglutition and energy to eat (Westergren, Unosson, Ohlsson et al., 2002). In Sweden the nursing research concerning eating problems mainly has been conducted in the care of the elderly, focusing on geriatric care (Sidenvall, 1995), municipal care (Christensson, 2002), patients with stroke (Axelsson, 1988; Jacobsson, 2000; Westergren, 2001) and patients suffering from dementia and Parkinson’s disease (Athlin, 1988). Eating problems are in these studies described in various ways; as problems that has a negative impact on the preparation and intake of food and/or beverages, or as chewing and/or swallowing difficulties. Consequently, no uniform definition exists.

Head and neck cancer

Tumours of the head and neck are rather infrequent and constitute about 2.5% of all newly diagnosed malignancies in Sweden each year. Approximately 1100 patients are annually diagnosed with head and neck cancer, but the incidence is slowly increasing. Cancers of the head and neck are mainly locoregional diseases at diagnosis and distant metastases are unusual (Masters & Brockstein, 2003; Zackrisson, Mercke, Strander et al., 2003). Most patients are between 55 and 69 years old and about two thirds are men (SBU, 2003; The National Board of Health and Welfare, 2005). Main risk factors for cancer of the head and neck are tobacco smoking and excessive alcohol consumption (Rosenquist, Wennerberg, Schildt et al., 2005), and combined use has an multiplicative effect on the risk of developing head and neck cancer. Also Epstein-Barr virus (Spitz, 1994) and human papilloma virus play an important role in the development of

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head and neck cancer (Gillison, 2004; Hansson, Rosenquist, Antonsson et al., 2005). The term ‘head and neck cancer’ does not refer to a single entity, but rather to a diverse spectrum of malignancies that arise from the epithelial lining of the upper part of the aerodigestive tract. Head and neck cancer is usually divided in four subgroups: a) oral cavity cancer: including cancer of the oral tongue, floor of mouth, gingiva, hard palate and bucca, b) pharyngeal cancer: including cancer of the hypopharynx, nasopharynx, and oropharynx, c) laryngeal cancer, and d) other cancers: including lips, salivary glands, nasal cavity, paranasal sinuses, and tumour colli (e.g. neck metastasis with unknown primary tumour) (cf. Hammerlid, 1997; Petruson, 2005). Most common newly diagnosed tumours in Sweden 2003 were tumours in the oral cavity (28%) followed by pharyngeal cancer (23%). The most common single sites were the larynx (18%) and lip (16%). The incidence of laryngeal cancer has decreased during the last decade and tongue and tonsil cancer has increased (The National Board of Health and Welfare, 2005). More than 90% are squamous cell carcinomas. Other tumour types found are adenoid cystic carcinoma, adenocarcinoma and mucoepidermoid carcinoma (Sanderson & Ironside, 2002). The tumour, node, metastasis staging system (TNM), developed and maintained by the International Union Against Cancer (UICC), divides cancers of the head and neck into four stages (Sobin & Wittekind, 2002). Stage I and II are considered early stages and comprise T1 and T2 cancers with no nodal or distant metastasis. Stage III and IV are considered late or advanced stages and comprise T3 and T4 cancers as well as all tumours with nodal and/or distant metastasis. The prognosis is related to the stage at diagnosis, and many patients with head and neck cancer are diagnosed with an advanced stage (III-IV). This is probably due to vague symptoms similar to symptoms that occur in non-malignant conditions, resulting in both patients’ and doctors’ delay. These symptoms include hoarse voice, sore throat and difficulties in swallowing, ulcers in the oral cavity, nasal congestion, earache and swollen lymph nodes in the neck (Carr, 2005). Some tumours however give distinct early symptoms like hoarseness in laryngeal cancer, or pain and ulcers that do not heal in the oral cavity, and are thus often diagnosed at an early stage (I-II) (Amir, Kwan, Landes et al., 1999; Carvalho, Pintos, Schlecht et al., 2002; Tromp, Brouha, Hordijk et al., 2005; Vernham & Crowther, 1994). Therefore, the survival rates differ between the subgroups of head and neck cancer as some tumours are more likely to be discovered at an early stage and thus have a better prognosis. Laryngeal and lip cancer have the highest five-year overall survival (65-90%), and cancer in nasopharynx and hypopharynx the lowest (30-45%) (Argiris & Eng, 2003; Örebro University Hospital, 2006). The overall five-year survival in Sweden is 50-60% (Talbäck, Stenbeck, Rosen et al., 2003).

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Treatment and their side-effects

Even though treatment of patients with head and neck cancer differs worldwide (Rosenthal & Ang, 2004), the majority are treated with external beam radiotherapy or surgery, either as single modality or in combination. Sometimes brachytherapy (interstitial radiotherapy) or chemotherapy are given as well (Rose-Ped, Bellm, Trotti et al., 2002; Zackrisson et al., 2003). In external radiotherapy the radiation source is placed outside the patient and in brachytherapy it is placed in or onto the tumour (Ding, Newman & Raben, 2005; Weiss Behrend, 2005). The choice of treatment modality depends on anatomical location, tumour stage, the patients’ health status and preferences (Masters & Brockstein, 2003). The goal of therapy is to cure all patients except patients with distant metastatic disease, where the aim often is to palliate loco-regional symptoms. However, because local uncontrolled tumour growth is important to avoid, these cases are many times treated aggressively (SBU, 1996). Since the focus of this thesis has been on patients treated with radiotherapy, the treatment modalities surgery and chemotherapy are only described briefly. When surgery is part of the treatment, it can be performed before radiation (postoperative radiotherapy) or after radiation (preoperative radiotherapy). Internationally the most common combination is postoperative radiotherapy (Carr, 2005; SBU, 1996; Wennerberg, 1995). In an early stage of cancer there is often a good chance of complete tumour ablation and morbidity is minimal. However, functional and cosmetic disabilities are common after resection of large tumours (List & Bilir, 2004), but the possibilities of performing reconstructive surgery have significantly improved in recent years (Sabri, 2003). For some patients the treatment may also include neck-dissection, where lymph nodes from the neck are removed. The side-effects of surgery are wound infections, fistulas, xerostomia due to removal of salivary glands and damaged nerves or misalignment of remaining structures leading to pain in the shoulder and arm (Chaplin & Morton, 1999), the neck and jaw (Sist, Miner & Lema, 1999), and in the mouth and throat (Carr, 2005). Damaged nerves after surgery also lead to functional impairment such as difficulties to chew and swallow (Chua, Reddy, Lee et al., 1999). The resection in itself may also lead to chew and swallowing difficulties due to the removal of tissue. The more extensive the surgery is, the worse the functional impairments in general are (Langius, Björvell & Lind, 1994; Sabri, 2003). Since the face is difficult to conceal, both the patients’ self-esteem and body image may be negatively affected after an extensive surgery (Vickery, Latchford, Hewison et al., 2003). Chemotherapy is becoming more common in the management of both locoregional and distant advanced head and neck cancer (Bernier, Domenge, Ozsahin et al., 2004; Cooper, Pajak, Forastiere et al., 2004; Lamont & Vokes, 2001). Common side-effects are nausea and vomiting, diarrhoea, mucositis, swallowing difficulties due to pain, and fatigue. In addition, chemotherapy also suppresses the bone marrow (List & Bilir, 2004; Trotti, 2000). When given

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concomitantly with radiotherapy, the risks for severe side-effects are increased (Cooper et al., 2004). As already mentioned above, external beam radiotherapy plays an essential role in the treatment of head and neck cancer. The major advantage of radiotherapy compared to surgery is the possibility of organ preservation and thus better cosmetic and functional outcome (Mendelhall, Parsons, Buatti et al., 1995; Zackrisson et al., 2003). The objective of radiotherapy is to deliver a defined radiation dose to a specific volume with the intent to kill tumour cells while minimizing radiation of surrounding healthy tissue. The unit of dose delivery is gray (Gy), which is defined as the absorbed dose of radiation by the tissue (1 Gy = 1 J/kg) (Dunne-Daly, 1999; Möller, Ceberg, Einhorn et al., 2003). The prescribed radiation dose is based on primary tumour site, histology and whether radiotherapy will be used alone or in combination with other modalities. The total dose of radiation is divided into fractions and the dominating schedule (conventional fractionation) has been a daily dose of 1.8-2 Gy five days per week up to 66-70 Gy (Reizenstein, 2004; Zackrisson et al., 2003). To improve loco-regional control altered ways of fractionation has been developed. These include hyperfractionation (two or more fractions/day with the maintenance of overall treatment time) and accelerated fractionation (shortening of overall treatment time) or a combination of these, accelerated hyperfractionation (Nguyen & Ang, 2002; Zackrisson et al., 2003). Brachytherapy may be used as a boost after external radiotherapy or alone in appropriate cases and in local recurrences (Glatzel, Buntzel, Schroder et al., 2002; Möller et al., 2003). The duration of brachytherapy treatment is measured in days instead of weeks (Quon & Harrison, 2002). In spite of careful planning and modern technique, radiotherapy inevitably involves side-effects due to exposure of surrounding normal tissue (Dunne-Daly, 1999; Stone, Coleman, Anscher et al., 2003). The intensity of the side-effects depends on the delivered dose, treated volume, used technique, if combined treatment is used or not and individual factors such as age, sex, smoking habits and nutritional status (Porock, 2002). Side-effects of radiotherapy are commonly classified as acute, consequential late or late effects, depending on the time of appearance of symptoms. Acute side-effects usually develop during treatment and are seen in tissues with rapidly proliferating cells. Consequential late side-effects appear later and are caused by persistent acute side-effects. Late side-effects, which develop months or years after treatment, are seen in tissues with a slower turnover of cells. While acute side-effects usually are reversible, late side-effects most often are not (Dörr & Hendry, 2001; Stone et al., 2003). Common acute side-effects of radiotherapy are dermatitis, mucositis, xerostomia, changes in viscosity of saliva and taste changes. Bacterial or fungal infections may occur secondary to mucositis (Brown & Wingard, 2004). Late side-effects includes trismus, fibrosis, atrophy, vascular damage, xerostomia and osteoradionecrosis (Stone et al., 2003; Strohl, 1995; Vissink, Jansma, Spijkervet et al., 2003). Another common side-effect of

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radiotherapy to the head and neck area is fatigue, which has been shown to occur both during (Duncan, Epstein, Tu et al., 2005) and one month after treatment (Rose & Yates, 2001). The side-effects of brachytherapy are the same as for external radiotherapy, but less extensive (Mazeron, Noel & Simon, 2002). In addition, the implant procedure causes pain (Edwards, 2000). Research shows that newer ways of fractionation (i.e., hyperfractionation with or without acceleration) increase acute side-effects compared to conventional fractionation, while late side-effects may be decreased (Trotti, 2000; Zackrisson et al., 2003). However, severe acute side-effects, for example confluent mucositis with non-healing ulcers and xerostomia, may develop into chronic side-effects (consequential late), and remain for a long period after completion of treatment or never disappear (Cooper, Fu, Marks et al., 1995; Mossman, Shatzman & Chencharick, 1982; Parsons, 1994; Shih, Miaskowski, Dodd et al., 2003; Trotti, 2000). When the treatment is combined (radiotherapy ± surgery ± chemotherapy), it may be difficult to determine which treatment is causing a particular side-effect, but presumably the side-effects become worsened.

Eating problems in patients with head and neck cancer

Research shows that tumour location and side-effects of treatment has a negative impact on eating in patients with head and neck cancer. These patients have often eating problems and compromised nutritional status already before treatment if the tumour is located in the oral cavity, pharynx or larynx region (Chencharick & Mossman, 1983; Lees, 1999; Wilson, Herman & Chubon, 1991). Surgery may result in difficulties with chewing, difficulties in transporting food in the mouth, swallowing (Harvey, 2000; Langius, Björvell & Lind, 1993; List & Bilir, 2004), and persistent pain (Gritz, Carmack, de Moore et al., 1999; Whale, Lyne & Papanikolaou, 2001). Due to the side-effects of radiotherapy patients commonly experience mouth dryness, changed viscosity of the saliva, taste changes, swelling, pain in the mouth and throat, swallowing difficulties, and loss of appetite. These side-effects further compromise oral health and nutritional status since they are superimposed on existing eating problems and cause new problems, resulting in significant morbidity and risk for inadequate nutriment intake (Ganley, 1995; Langius, Björvell & Lind, 1993; Rose & Yates, 2001; Rose-Ped et al., 2002; Wilson, Herman, & Chubon, 1991). Furthermore, emotional stress and existential crisis caused by the cancer diagnosis may have a negative impact on eating (Capra, Ferguson & Ried, 2001; Cunningham & Bell, 2000; Gatson Grindel, Whitmer & Barsevick, 1996) and increased secretion of cytokines caused by the tumour may contribute to loss of appetite (Cunningham & Bell, 2000; Heber & Tchekmedyian, 1999; Hessov, 2001). The consequences of eating problems and subsequent progressive malnutrition in cancer patients are well documented and include weight loss, impaired immune function, reduced resistance to disease, increased morbidity and mortality and increased complications and side-effects of cancer treatment (Cunningham &

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Bell, 2000; Gallager-Allered, Coble Voss, Finn et al., 1996; Inui, 2002; Lees, 1999). Nursing research on eating problems in patients with head and neck cancer treated with radiotherapy is scarce and the studies performed are often lacking definition and precision with respect to eating problems (Langius, Björvell & Lind, 1993; Rose & Yates, 2001; Rose-Ped et al., 2002; Wilson, Herman & Chubon, 1991). Some studies have measured eating ability by means of categorization of food consistency (Beeken & Calman, 1994; Gritz et al., 1999). Other studies have investigated eating problems indirectly by describing eating strategies related to side-effects of radiotherapy and symptoms of these (Wilson, Herman & Chubon, 1991) or the incidence of causative factors contributing to malnutrition, i.e. symptoms of side-effects of treatment (Lees, 1999). There is a tendency to consider both chewing and swallowing difficulties and symptoms of injured mucosa, such as pain, taste changes and mouth dryness, as eating problems. Hence, there is confusion in the literature regarding the definition of eating problem and what its causes are. In this thesis eating problems are considered to be chewing and/or swallowing difficulties. Symptoms interfering with eating which are caused by side-effects of treatment and/or tumour location are considered to be causes of eating problems.

Organisation and content in the trajectory of care

The trajectory of care for patients with head and neck cancer is complex. It involves multidisciplinary care at different levels, a number of diagnostic examinations and often treatment at different clinics because multimodality treatment is common for this group of patients (Sharp, Lewin, Hellborg et al., 2002; van Wersch, de Boer, van der Does et al., 1997; Whale, 1998). The majority of the patients are treated with radiotherapy on an out-patient basis (SBU, 2003), five days per week for up to 6 or 7 weeks (Rose-Ped et al., 2002; Zackrisson et al., 2003). In the US and in great parts of Europe the radiotherapy treatment is carried out by radiation therapy technologists (Shepard & Frankel Kelvin, 1999), whereas radiotherapy in Sweden is carried out by specialist nurses (SBU, 2003; Wengström & Häggmark, 1998). The significant development and advances in new techniques of delivering treatment have not been matched by progress of the supportive care of radiotherapy patients (Shepard & Frankel Kelvin, 1999; Wells, 1998b). In northern Europe including Sweden the shortage of both radiotherapy technologists and specialist nurses has lead to an emphasis on the technical aspects of the treatment, rather than on the more human aspects of caring for the patients (SBU, 2003; Wells, 2003; Wengström & Häggmark, 1998). In Sweden the treatment time scheduled for each patient is approximately 20 minutes on each occasion. During this time the nurse is expected to both carry out the radiotherapy and attend to the patient’s needs and problems (Weiss Behrend, 2005; Wengström & Häggmark, 1998). There is an agreement that

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nursing care in radiotherapy should focus on education, counselling, assessment, and direct care of side-effects (Shepard & Frankel Kelvin, 1999; Wells, 1998b). However, the limited time scheduled for each patient diminishes the possibility to create a nurse-patient relationship and perform high quality nursing care during radiotherapy (Wengström & Häggmark, 1998). Further, this lack of time also makes it difficult to follow up patients once treatment is over (Hinds & Moyer, 1997; Wengström & Häggmark, 1998). The patients’ contacts with the health care system in Sweden during the follow-up period usually consist of revisits to physicians according to local and regional care plans, mainly with the focus to evaluate the treatment and monitor the disease (Lind et al., 2001; Reizenstein, 2001; SBU, 2003). Since treatment of these patients requires multidisciplinary care the patients meet many different clinicians during the trajectory of care: general practitioners, physicians in otorhinolaryngology and oncology, oromaxillofacial and plastic surgeons, dentists, different nurse specialists, dieticians, dental hygienists and speech therapists. This leads to many transitions for the patients as they move along the trajectory of care (Sharp et al., 2002; van Wersch et al., 1997; Whale, 1998). In Sweden the development of subspecialties and centralisation of oncology care has led to fragmentation and difficulties in continuity and coordination of care, which also affect the information to the patients negatively (Barrbrink & Bonair, 2003; SBU, 2003). Many studies have illuminated that continuity of care contributes to patients’ perception of quality of care (Athlin, Furåker, Jansson et al., 1993; Boman, Björvell, Langius et al., 1999; Mitchell Beddar & Aikin, 1994) and lack of continuity has been shown to be a source of distress and discomfort (Barrbrink & Bonair, 2003; van Wersch et al., 1997). Other studies have highlighted the significant role information also plays with regard to the quality of care (Haggerty, Reid, Freeman et al., 2003; Mitchell Beddar & Aikin, 1994; Sharp, Laurell, Tiblom et al., 2004).

Nurse-led clinics as a way to increase quality of care

There is a growing body of literature describing nurse-led clinics in cancer care as a way to increase continuity and quality of care. Traditional follow-up of patients has usually been found only to have resources for monitoring the disease and the side-effects of treatment (Steinberg & Rose, 1996). The foundation for developing nurse-led clinics is argued to be the nurses’ holistic approach. This approach makes it possible to both identify patients’ needs and attend to broader aspects of the disease and treatment that may impact on the patient’s well-being and functioning in daily life (Corner, 2003; Loftus & Weston, 2001; Moore, Corner, Haviland et al., 2002). Nurse-led initiatives have been developed in cancer care for various groups of patients during treatment and/or follow-up. The initiatives have been evaluated by means of quantitative methods mainly regarding outcomes such as satisfaction with care (Faithfull, Corner, Meyer et al., 2001; Moore et al., 2002), side-effects of treatment (Norcross Weintraub & Hagopian, 1990), symptom distress (Faithfull et al.,

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2001), quality of life (Faithfull et al., 2001; Moore et al., 2002; Petruson, Silander & Hammerlid, 2003), and survival/safety of care (Moore et al., 2002). The findings often show that the care provided in such clinics is both holistic and safe (Cox & Wilson, 2003) but in studies concerning patients treated with radiotherapy they are mainly restricted to the treatment period (Campbell, German & Lane, 1999; Loftus & Weston, 2001). In Sweden evaluation studies of nurse-led initiatives have mainly been performed on patients with breast cancer. Accordingly, Wengström et al. (1999) found in a randomized study that a nursing intervention during radiotherapy aimed at enhancing self-care had a positive effect on subjective distress; Koinberg et al. (2002) came to the conclusion that check-up visits to a specialist nurse after surgery gave security and confidence. The only study found on patients with head and neck cancer was a randomized study, which evaluated the effect of a psychosocial support programme with a nurse and a dietician during and after radiotherapy. The outcome measure was quality of life and no difference between the intervention and control group was found (Petruson, Silander & Hammerlid, 2003). Thus, there is a lack of studies focusing on nurse-led clinics, which act as a complement to regular care, aimed at supporting patients with head and neck cancer during the whole trajectory of care. In addition, only few studies are found describing patients’ experiences of such services by means of qualitative methods.

The trajectory of care from the patients’ perspective

There is no doubt that patients’ experiences of cancer and its treatment is frequently associated with an increase in distress and difficulties with coping, since the diagnosis of cancer often is accompanied by fear and uncertainty (Grahn & Johnson, 1990; Halldórsdóttir & Hamrin, 1996; O'Connor, Wicker & Germino, 1990). However, to suffer from head and neck cancer also implies specific experiences of loss or impairment of fundamental functions, such as eating, drinking and socializing. For the individual patient with head and neck cancer planning for and preparation of the treatment, as well as the treatment itself, is often complicated, time-consuming, and demanding, since the patients have to go through a series of procedures before treatment can start (Colyer, 2003; Sharp et al., 2004; Sharp et al., 2002; van Wersch et al., 1997; Whale, 1998). In general the diagnostic procedure involves the patient in both a clinical examination and an endoscopic examination as well as palpation under general anaesthesia, when also biopsies are taken for histological examination. Often radiological investigations are included in the diagnostic procedure (Feber, 2000; Reizenstein, 2004; Sharp et al., 2002). When all information is available, the final treatment decision is usually made in a conference where the patients meet many different categories of health care professionals (Lind, Lewin, Lundgren et al., 2001; Reizenstein, 2004; Sanderson & Ironside, 2002).

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The planning of treatment that follows includes a new lengthy series of unfamiliar procedures in a high-tech environment, which in itself can be stressful and appear frightening for patients (Barnard & Sandelowski, 2001). The first step in the process is to create an immobilisation mask or shell to ensure that the patient’s head is in a fixed position that can be reproduced during treatment. Wearing the mask has been shown to be a very strenuous event (Rose & Yates, 2001), but since even small changes of position may be devastating due to the closeness of radiosensitive structures in the head and neck area the importance of this step can not be overstated (Edwards, 2000). During this stage the patients also have a dental assessment and extraction of teeth with poor prognosis in order to avoid osteoradionecrosis (Notani, Yamazaki, Kitada et al., 2003). The next step in the process is taking a series of X-rays with the patient lying in the same position as during treatment, wearing the mask. With the X-ray images as a basis, the physician then designs the optimal arrangement of radiotherapy beams. The complexity of this process implies that even if there are no delays, the length of time required for completing the planning of the radiotherapy is usually several days. Thereafter the treatment is simulated in an X-ray machine to check and verify the proposed treatment plan. The simulation is a team-work between specialist nurses or radiation therapy technologists, physicians and physicists, and requires that the patient remain still in treatment position usually between 30 and 60 minutes. The focus of this session is on technical accuracy (Colyer, 2003; Wells, 2003). During the treatment period the patients visit the radiotherapy department once or twice per day for up to six or seven weeks (Rose-Ped et al., 2002; Zackrisson et al., 2003). Since the radiotherapy generally is delivered on an out-patient basis, the patients have daily travels to the hospital or stay at a patient hotel when available (Rose-Ped et al., 2002; SBU, 2003; Wells, 2003). Travelling to and from the hospital has been found to be trying and a common cause of distress for cancer patients (Payne, Jarrett & Jeffs, 2000; Rose & Yates, 2001). During the radiotherapy sessions the patients are then left alone in the treatment room, monitored by the staff via a camera. Throughout the treatment period the patients have regular contacts with the radiotherapy nurses, but the short meetings with the nurses in combination with the high-tech environment may obstruct the creation of a therapeutical relationship (Wells, 1998a). This in turn can make it difficult for the patients to express their problems and concerns and supportive care is often only initiated when a problem has become evident (Faithfull, 1999). Studies have shown that the cessation of radiotherapy treatment is associated with emotional stress and uncertainty in the patients (Rose & Yates, 2001; Sherman, Simonton, Adams et al., 2000; Wells, 1998a). Moreover, research shows that depressive symptoms are common among these patients during the whole trajectory of care (de Graeff, de Leeuw, Ros et al., 2000b; de Leeuw, de Graeff, Ros et al., 2000; Hammerlid, Silander, Hörnestam et al., 2001). The

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disease and its treatment have been found to impact on the patients’ quality of life negatively for months and years after treatment (Bjordal, Ahlner-Elmqvist, Hammerlid et al., 2001; Bjordal, Kaasa, & Mastekaasa, 1994; de Graeff, de Leeuw, Ros et al., 2000a; Gritz et al., 1999; Langius, 1997) and many patients live with an anxiety-provoking threat of recurrence of the disease (Rose & Yates, 2001). The growing body of quality of life literature concerning cancer patients has attempted to measure changes over time in physical and psychosocial functioning as well as in general wellbeing. This research shows that head and neck cancer and its treatment have a negative impact on eating and quality of life for months and years after treatment (Bjordal et al., 2001; Bjordal, Kaasa & Mastekaasa, 1994; de Graeff et al., 2000a; Gritz et al., 1999; Hammerlid et al., 2001; Langius, 1997; Rose & Yates, 2001). However, the data in these studies are mainly collected by questionnaires and tend to focus on symptom distress. Since fixed questions may not capture the uniqueness of the patients’ experiences or their total life situation, there is a risk of overlooking important issues which patients might express in another way if they were encouraged to give open-ended replies (Wells, 1998a; Whale, Lyne & Papanikolaou, 2001).

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Rationale for the study

As shown by the literature review there is a lack of studies exploring the occurrence of eating problems in head and neck cancer patients and these patients’ nutritional situation over a longer period of time, from diagnosis, during treatment, and throughout the rehabilitation period. Furthermore, few studies have focused on these patients’ own experiences of having eating problems. Hence, there is a need of studies of head and neck cancer patients’ lived experiences of eating problems applying a trajectory perspective. There is also a need of studies describing patients’ experiences of nurse-clinics, which act as a complement to the regular care. This thesis is an attempt to contribute to the knowledge and understanding of head and neck cancer patients’ experiences, situation and needs in daily life regarding these issues during the whole trajectory of care.

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General and specific aims

The overall aim of this thesis was to acquire knowledge about daily life with focus on eating problems during the trajectory of care for patients with head and neck cancer treated with radiotherapy. The specific aims were as follows:

- to examine the occurrence and treatment of eating problems, their causes and consequences during the trajectory of care for patients with head and neck cancer treated with radiotherapy (Study I)

- to acquire a deeper understanding of head and neck cancer patients’

lived experiences of eating problems in daily life during radiotherapy (Study II) and during the whole trajectory of care (Study III)

- to describe how head and neck cancer patients with eating problems

conceived the significance of a supportive nursing care clinic before, during and after completion of radiotherapy (Study IV)

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Methods

Methodological framework

This thesis comprises four studies using methods from both the positivistic and naturalistic paradigm. A certain paradigm relates to a general perspective on the world, which in its extension shapes the way scientists carry out research (Monti & Tingen, 1999). Paradigms are characterized by their ontological (concept of reality) and epistemological (concept of knowledge) assumptions. Another important component in a scientific paradigm is the concept of Man, which is dependent on a given concept of reality and gives rise to a given concept of knowledge. These assumptions then give rise to an assumption about the appropriate methodology to apply in order to obtain knowledge (Barbosa da Silva, 2002; Barbosa da Silva & Wahlberg, 1994). Nursing research has during the last century utilized both the positivistic and the naturalistic paradigm, which represent two fundamentally opposed ontological and epistemological views. Positivism is based on the assumption that what is known can be verified through the senses. The ontological assumption is that there is only one objective reality, which exists independent of human observation and this can be validated through the senses (Polit & Beck, 2004). Positivism can also be described as reductionistic, since parts rather than the whole of the phenomena under study are examined. The method associated with positivism is the scientific method that uses deductive reasoning and focuses on experiment, control, objectivity, precise measurement, and quantification of data. Thus, quantitative methods, in which numerical data are used to quantify or measure phenomena, are necessary if the research is conducted within the positivistic paradigm (Carr, 1994; Monti & Tingen, 1999; Polit & Beck, 2004). Within the naturalistic paradigm it is acknowledged that reality has multiple meanings and that knowledge can be obtained in other ways than through our senses. The ontological assumptions are that the reality is complex, multiple, and dependent on its context. Reality is not a fixed entity but a construction of the individuals and thus many realities are possible (Polit & Beck, 2004). Within the naturalistic paradigm the entirety of the phenomenon under study, is emphasized. The focus is on human experience and as reality and human experience are variable, multiple ways of obtaining the knowledge may be acknowledged. In addition to knowledge expressed in language or obtained through observation, tacit and intuitive knowledge are recognized (Monti & Tingen, 1999). Therefore qualitative methods, applying an inductive process, where the findings are described in words, are preferred within the naturalistic paradigm (Carr, 1994; Polit & Beck, 2004).

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The two different ontological perspectives have strong implications for whether quantitative or qualitative methods are to be used in the acquisition of knowledge within an inquiry (Polit & Beck, 2004). Additionally, as mentioned before, the way Man is regarded is also a determining factor for the method to be used. If human beings are partly like and partly different from other beings, then both paradigms and both kinds of methods are necessary and complementary (Barbosa da Silva, 2002). Heidegger (1962) advocates a complementary view on the basis that no explanation is possible without understanding and understanding precedes explanation in all scientific work. Meleis (1997) argues that only one paradigm is not possible, or even acceptable, in nursing science as this science deals with human beings and complex health/illness situations. As nursing also is a practice-oriented discipline, it needs knowledge that mirrors the complexity and multidimensionality of the reality in which nursing takes place (Corner, 1991; Meleis, 1997). Monti and Tingen (1999) claimed that using multiple paradigms and downplaying their differences offer a possibility for nursing research to recognize the differences inherent in opposing world views. They emphasized the benefit that each offers and the way the paradigms complement each other. Thus, nursing research requires various types of knowledge and methods in order to answer different questions depending on their nature. Qualitative and quantitative methods offer knowledge of equal importance and weight, and when combined they provide a richer description of the phenomena under study (Foss & Ellefsen, 2002). Qualitative methods can further develop findings derived from quantitative studies and vice versa. Therefore the studies in this thesis were carried out using both qualitative and quantitative methods.

Design

The overall design in this thesis was descriptive and explorative. In order to elucidate and describe different aspects of the research issue, triangulation has been used (Thurmond, 2001; Williamson, 2005). Triangulation can refer to data triangulation, investigator triangulation, theory triangulation, and method triangulation (Carr, 1994; Cowman, 1993; Denzin, 1989). In this thesis method triangulation was carried out both as within-method triangulation, since the qualitative studies involved both interpretative phenomenology and phenomenography, and as between-method triangulation, since both quantitative and qualitative data were collected and analyzed. The methods complement each other, providing detailed descriptions and deep understanding, which would not be possible using one method alone (Corner, 1991; Risjord, Dunbar & Moloney, 2002). In study I a quantitative retrospective chart review was made of the documentation of patients with head and neck cancer, from diagnosis until one year after completion of treatment. Study II, III and IV were conducted with

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qualitative methods (interpretative phenomenology and phenomenography). In study II and IV patients with head and neck cancer treated with radiotherapy were interviewed twice and in study III interviews were carried out once. For an overview of the design of the thesis, see Table 1. Table 1. Overview of the design, data collection, and data analysis in study I-IV.

Study Design Data collection Data analysis I Retrospective

chart review Study-specific audit instrument

Descriptive statistics and inferential statistics

II Explorative, descriptive

Qualitative interviews x 2

Interpretative phenomenology

III Explorative, descriptive

Qualitative interviews x 1

Interpretative phenomenology

IV Explorative, descriptive

Qualitative interviews x 2

Phenomenography

Care context

The patients in study I-IV were treated with radiotherapy at two different hospitals in the same region in Sweden. All patients in study I-IV received care as described under the heading Regular care. The patients in study IV received care at the supportive nursing care clinic described on page 25 as a complement to the care outlined in the care plan.

Regular care (study I-IV)

Study I, and IV were performed at a county hospital in Sweden, study III at a regional university hospital, and study II at both hospitals. At both hospitals the care and treatment of head and neck cancer followed mainly the same care plan (Reizenstein, 2001, 2004). This meant that after examination and diagnosis, treatment decisions were made at the weekly head and neck cancer conference at the university hospital. The patients were usually treated on an out-patient basis and if needed, due to long travel distances, they could stay at the patient hotel during the treatment period. The radiotherapy lasted usually between five and seven weeks. During the radiotherapy treatment period the patients had an appointment with a physician every second week and also when needed. All patients were offered appointments with a dietician and a dental hygienist. The patients in study II and III, who were treated at the university hospital, were also offered to meet a psychosocial counsellor in connection with the treatment decision conference. The radiotherapy treatment was carried out by nurses with special education in radiotherapy. The nursing care during the treatment session was restricted to the scheduled 15-20 minutes on each occasion and performed by the nurses who also carried out the radiotherapy. Nutritional status was

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assessed according to a checklist in the beginning of the radiotherapy (university hospital). Nursing care needs were assessed once a week and when necessary according to a standardized nursing care plan. At the university hospital the care plan covered ability to swallow, skin status and anxiety, and at the county hospital it covered skin status, nausea, pain in the mouth, oral health status, and fatigue. After treatment, referrals were made to the dental hygienist in the patients’ home districts. The first revisit to the physician was said to take place approximately four to six weeks after radiotherapy. Patients who were judged to be tumour-free were then followed up at the hospital in their home municipality every three to four months during the first two years and thereafter every six months for three years. No contacts with nurses at the radiotherapy department were scheduled after completion of the treatment.

The supportive nursing care clinic (study IV)

Study IV was performed at a supportive nursing care clinic, which was established in the autumn 2001 at the county hospital. The clinic was a complement to the regular care and participation was voluntary. The focus of the care at this clinic was the patients’ needs of nutritional care, symptom control, and social and emotional support. The patients attended the clinic regularly throughout the trajectory of care, i.e. before and during treatment and during one year after completion of treatment. The principal aim was to improve the patients’ nutritional status and give support in their daily life. The care was organised according to the principles of the primary nursing model including comprehensive, individualized and continuous nursing care through a nurse with knowledge and authority (Manthey, 1992; Sellick, Russel & Beckmann, 2003). Two specialist nurses worked at the clinic. They were skilled in nutritional as well as oncology care and had vast experience of this group of patients and their specific problems. The patients met the same nurse each visit at the clinic to the utmost possible extent. The time scheduled for each contact was 30 minutes but it could also be adjusted to individual needs. The patients had access to the clinic every second day except holidays. Most patients met a nurse from the clinic in conjunction with receiving the diagnosis. Before the treatment period started the patients were contacted by the nurse approximately every second week. During radiotherapy they visited the clinic once or twice a week. After the treatment period contacts were initially made by the nurses once a week and when necessary and then gradually less frequently. The nurses worked in close cooperation with the specialist physicians responsible for the patients’ care. When needed, contacts with other healthcare professionals were arranged as well. At every contact the patients’ nutritional status were assessed and they were provided with individually adjusted oral and written information and advice concerning nutritional issues. When necessary the patients were offered to meet a dietician for further assessment and advice. If enteral nutrition was prescribed the nurses were responsible for adequate administration, education and support during the trajectory of care. Emotional and social support was also offered to the patients and their families.

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Material and participants

The material and participants in this thesis consisted of four different samples from either of the two hospitals, the county hospital or the university hospital. The material in study I consisted of patient records and the participants in study II-IV consisted of three different groups of patients (Table 2). The general inclusion criteria were primary head and neck cancer treated with external radiotherapy with or without surgery, and expected or experienced eating problems due to side-effects of radiotherapy (study I-IV). In order to meet these criteria the patients whose records were reviewed (study I) were to have received a dose of radiation ≥ 50 Gy, or 40.8 Gy (accelerated hyper-fractionation) and brachytherapy. The patients in study II-IV were planned for or had received a dose of radiation ≥ 50 Gy. Patients who received chemotherapy as part of their treatment were excluded. Patients with early stage cancer of the larynx (T1) were also excluded, because such tumours entail small radiation fields and these patients were not expected to have eating problems due to side-effects of treatment. None of the participating patients in study I-III were cared for at the supportive nursing care clinic. In study I records were retrospectively reviewed of 50 consecutive patients treated at the county hospital from 1 July, 1998 to 30 June, 2001. Access to potential records was obtained through the treatment registry at the hospital. The review included all medical and nursing records at the departments of oncology and otorhinolaryngology from the point of diagnosis until one year after completion of treatment. In order to achieve as broad and varied description as possible of the phenomenon under study, the patients in study II-IV were chosen to represent different categories of sex, age and civil status. In study III differences in treatment modality and nutritional support were added as inclusion criteria, and in study IV employment, travel distance to the nurse clinic, tumour location, treatment modality, and enteral nutritional treatment or not, were added. Access to potential informants was initiated with the support from the radiation therapy nurse (study II), the physician responsible for the medical care and the head nurse at the radiotherapy department (study III), and one of the nurses at the supportive nursing care clinic (study IV). Patients who met the inclusion criteria were provided with a standard letter, explaining the purpose and procedure of the study. Patients who were willing to participate were contacted by the author (ML), given verbal information and an appointment was made for the interview. The number of participants who agreed or disagreed to participate in study II-IV are shown in Table 2.

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Table 2. Material/participants in study I-IV.

Study Material/participants Non-agreement

I 50 patients’ medical

and nursing records

-

II 8 patients 3 patients

III 9 patients 5 patients

IV 12 patients 0 patients

The sample size in study I decreased between the occasion for data collection at the end of radiotherapy and one year after completion of treatment due to death or recurrence of the disease. Before treatment, during and at the end of radiotherapy all 50 patients were eligible for audit, but one month after treatment three patients had died leaving 47 patients to follow-up. After six months another six patients had died and for one patient the disease had recurred, leaving 40 patients eligible for audit. After twelve months 32 patients were eligible, since another three patients had died and in five patients the disease had recurred. There were no significant differences between the patients who were lost because of death or recurrence of the disease, and the patients who were followed for twelve months regarding sex, age, tumour location, tumour stage, and treatment modality including type of fractionation. Demographic data for the patients in the chart review (study I) and the interview studies (study II-IV) are shown in Table 3. Table 3. Demographic characteristics of patients in study I-IV.

Study I Study II Study III Study IV

N=50 N=8 N=9 N=12

Sex

Men 34 6 7 7

Women 16 2 2 5

Age

Median 66 60 70 59

Range 40-87 43-74 52-86 45-80

Civil status

Single 21 2 3 2

In partnership 29 6 6 10

Employment

Working 15 4 4 7

Not working 35 4 5 5

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The clinical data of the patients in the chart review (study I) and the interview studies (study II-IV) are shown in Table 4. Table 4. Tumour locations and oncology treatment of study participants.

Study I Study II Study III Study IV N=50 N=8 N=9 N=12 Location Naso-, oro-, and hypopharynx 23 4 4 4 Oral cavity 18 3 5 8 Larynx 6 Nasal cavity and paranasal sinuses 3 Tumour colli 1 Treatment Conventional fractionation 19 4 1 4 Conventional fractionation and surgery

3 1 1 2

Accelerated hyperfractionation 18 2 2 1 Accelerated hyperfractionation and surgery

3 1 5 3

Accelerated hyperfractionation and brachytherapy

7 2

Conventionally fractionated radiotherapy meant a daily dose of 2.0 Gy given five days per week. Accelerated hyperfractionated radiotherapy meant two fractions of 1.7 Gy per day given five days per week. The brachytherapy dose ranged from 20-35 Gy.

Data collection

Audit instrument (study I)

The data collection in study I was carried out in 2002 using a study specific- audit instrument. The instrument was developed with the purpose to audit the documented care of patients with head and neck cancer treated with radiotherapy. The procedure for developing instruments varies. Methods commonly used to get a starting point are focus groups, key informants, observations or scientific research (Mishel, 1998; Streiner & Norman, 1995). The different parameters which the instrument in this study consists of were chosen after a review of the scientific literature in the area and the authors’ clinical experience. The content and structure were discussed and decided in a group of four nurses with special knowledge in oncology, eating and nutrition. The instrument was then scrutinized by three physicians specialized in the fields of nutrition and oncology. The audit instrument was constructed in such a way that the issues were arranged as a checklist capturing demographic and clinical data, documented eating problems and causes of eating problems related to tumour and/or its

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treatment, oral health problems, different stages of ability to eat and elimination problems, their consequences i.e. nutritional status changes and undertaken nutritional interventions. In order to follow the patients through the trajectory of care, the care context at the different occasions of measurements was also audited. Most parameters such as eating problems, causes to eating problems and interventions were noted as present/not present in the documentation and were thus dichotomized and measured by a nominal scale. Weight and radiation dose were measured by a ratio scale and the actual values were noted. Some dichotomized parameters had more than one alternative if they were found in the documentation, i.e. oral health were noted when documented as either normal oral mucosa, mucositis, or fungal infection. For a comprehensive overview of the structure and content of the audit instrument, see Appendix 1.

Interviews (study II-IV)

In study II-IV qualitative interviews were carried out by the author (ML) in 2000 (study II) and between 2003 and 2005 (study III, IV). The interviews were undertaken in an open dialogue (Kvale, 1996). This meant that the interviews were performed as a conversation guided by the specific research issue in the different studies. The purpose of qualitative interviews is, to gain descriptions of the informants’ experiences that can be used to interpret the meaning of the phenomenon under study (Dahlberg, Drew & Nyström, 2001; Kvale, 1996). Qualitative interviews are focused on certain themes and an interview guide with a few entry questions is used rather than a rigid schedule of questions. The researcher (ML) also used follow-up questions and asked for examples and clarifications in order to further illuminate the phenomenon and achieve as rich descriptions as possible (cf. Kvale, 1996; Streubert Speziale & Carpenter, 2003).

Procedure (study I-IV)

In order to get as rich understanding as possible of the patients’ experiences and needs during the whole trajectory of care, data were collected at different points of time. The whole trajectory of care was covered from diagnosis until one year after completion of the treatment, as illustrated in Figure 1. Study pre-RT during RT end of RT 1 month 3 months 6 months 1 year

I x

II x x

III x x

IV xx

Figure 1. Illustration of covered parts of the trajectory of care in study I-IV.

RT=radiotherapy.

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The data in study I were collected before treatment, each week during radiotherapy and at the follow-up visits to physicians one, six, and twelve months after completion of treatment. The pre-treatment period was decided to be the period from the first visit to the otologist until start of radiotherapy. The data collection was made by the author (ML) and two specialist nurses. The interviews in study II took place in connection with a treatment session in a room close to the radiotherapy unit, in study III in a conference room close to the oncology clinic in connection with a scheduled appointment with the physician and in study IV in a room close to the supportive nursing care clinic or in the home of the informants. The interviews were performed by the author (ML) and lasted between 40 and 70 minutes. They were tape- or digitally recorded and transcribed verbatim. In study II the interviews focused on the patients’ experiences of eating problems. The interview started with a broad question: “Please, could you tell me about the eating problems you have experienced during this period?”. By means of follow-up questions the phenomenon of ‘having eating problems’ was further elucidated. Six patients were interviewed twice, with approximately three weeks between the interviews, in order to capture any changes in the experiences of eating problems during the period of treatment. The first interview was performed after two to three weeks of radiotherapy and the second interview took place after approximately five weeks of radiotherapy. Two informants were interviewed only once after about five weeks of treatment due to practical reasons. In study III interviews were undertaken once with nine patients after completion of radiotherapy. Seven of them were interviewed six to eight weeks after completed treatment. Two informants were interviewed after twelve weeks due to pain and difficulties to speak. The interviews covered experiences of daily life during the trajectory of care with focus on eating problems, with four major topics: Eating problems owing to illness and treatment, Information and education received in order to cope with daily life having these problems, Contacts and continuity in the health care system, and Social and emotional support. The topics were written on a paper and showed to the informant during the interview in order to enable focus. The interviews started with a broad question: “Please, tell me about the problems and concerns you have experienced during this period.” The different topics were then focused on when appropriate. In study IV twelve patients were interviewed. They had been cared for at the supportive nursing care clinic during the whole trajectory of care. The interviews focused on the conceived significance of the nurse clinic, from diagnosis until the occasion for the interview, with emphasis on three themes: Information and education, Contacts with the health care system, and Support with eating and nutrition. Also in this study the three themes were written on a

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paper and showed to the informants during the interview in order to enable focus. The interviews were opened with two broad questions: “What problems and concerns have you experienced during this period?” and ”What significance has the nurse clinic had for you?” The different themes were introduced when appropriate. The interviews were performed twice with eight patients. Four patients were only interviewed once due to death or practical reasons. The first interview was performed one and a half to three months after completed treatment and the second interview approximately six months after completion of treatment.

Data analysis

Statistical analyses (study I)

The Statistical Package for Social Sciences (SPSS), version 11.5 for Windows, was used for data analyses. Descriptive statistics were presented as frequencies and percentages in variables at nominal level and as arithmetic means, standard deviation and range for variables at ratio scale. Inferential statistics with non-parametric tests were performed with Kruskal-Wallis test, Mann-Whitney U-test, Chi-squared test and Fisher’s exact test. Kruskal-Wallis test and Mann-Whitney-U test were used to test differences in percentage of weight loss for significance between patients concerning sex, tumour location, tumour stage, treatment modality, type of fractionation, eating problems and/or causes of eating problems pre-treatment or not, and treatment with enteral nutrition. These tests were also performed on a sub-sample of 20 patients, who were possible to follow during the trajectory. Chi-square test and Fisher’s exact test were used when appropriate to test differences for significance between patients treated with enteral nutrition or not concerning sex, tumour location, tumour stage, treatment modality, type of fractionation and, eating problems and/or causes of eating problems pre-treatment or not. Statistical significance level was assumed at P ≤ 0.05. Inter-rater reliability was calculated as per cent agreement and Cohen’s kappa (Altman, 1991).

Phenomenology (study II, III)

A phenomenological approach was chosen in study II and III since a deeper understanding of head and neck cancer patients lived experiences of eating problems and daily life during the trajectory of care was sought. Phenomenology has its roots in philosophy and is both a philosophical theory and a research method. Phenomenology, as used in nursing research, is concerned with understanding the meaning people give to their everyday experiences, to gain a deeper understanding of patients’ own perspectives on ill-health, suffering and nursing care (Hedelin & Strandmark, 2001; Jasper, 1994; Jonsén, Athlin,& Suhr, 2000; Oiler, 1982). The goal is to produce a description of the phenomenon under study, being as accurate as possible and without giving it meanings which are not supported by the lived experiences as told by the informants (Benner, 1994). The perspective taken was interpretative

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phenomenology (cf. Benner, 1994; Heidegger, 1962; Leonard, 1994). According to Heidegger (1962), the human experience is an interpretative process that takes place in a social-historical context which can be expressed as conscious awareness through language. In interpretative phenomenology it is assumed that the researcher has a preliminary understanding of the phenomenon under study. The understanding acts as a background when interpreting the phenomenon as it is not possible for the researcher to escape his or her taken for granted background or stance (Benner, 1994; Leonard, 1994). The analysis of data in these studies (II, III) were inspired by Colaizzi (1978). He argues that preconceptions are necessary to initiate a research project as they provide the questions to be researched. Moreover, like Heidegger (1962) he considers it not possible to avoid personal knowledge completely and that interpretation always occurs when analysing data. The point of departure in these studies was therefore to use and benefit from the pre-understanding in order to understand other people’s life-world. However, in order to be open-minded and see the informants’ experiences as they were lived and not being obscured by our own pre-understanding we continually challenged our self-awareness and used critical reflection throughout the whole research process (cf. Dahlberg & Dahlberg, 2004; Dahlberg, Drew & Nyström, 2001; Nyström & Dahlberg, 2001). The data analysis was based on Colaizzi’s (1978) method. 1. Each informant’s verbatim transcript was read several times to acquire a

sense of the whole. 2. Significant statements pertinent to the experiences of the phenomenon

studied were extracted from each interview. These were then contrasted and compared in order to identify similarities and differences.

3. Meanings were formulated from the significant statements. Creative insight was needed at this step to move from what was given in the data to discover and illuminate hidden meanings.

4. Formulated meanings were organized into themes. At this step a comparison was made between transcripts and themes in order to validate the themes.

5. The themes were integrated in an exhaustive description of the phenomenon.

6. The essential structure (fundamental structure) of the phenomenon was formulated through the researchers’ reflection and creative insight.

7. Descriptions of themes were supported by quotations to further validate the findings.

In study III all steps (1-7) were followed. In study II the analysis did not involve the search for the essential structure (step 6) and the findings were presented by the exhaustive description of the phenomenon (step 5) supported by quotations. According to Collaizzi (1978) a final step can be to return to the

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informants for their validation of the findings. This step was not carried out in these studies. The analysis was an interpretative process where the researchers moved back and forth between parts and the whole of the interviews, and between the steps of data analysis. The transcribed interviews were read by all three authors in order to get a sense of the whole. Thereafter significant statements were agreed upon and meanings formulated. Discussions were held in the research group in all steps of analysis with the purpose of validating the findings. Analysis consisted to a large extent of writing and rewriting. Writing the themes, comparing with the transcripts and rewriting, constituted a continuous process over time. Step by step a picture emerged of what it is like being a patient with head and neck cancer in the trajectory of care.

Phenomenography (study IV)

In order to acquire a description of patients’ conceptions of the significance of a supportive nursing care clinic, a qualitative study with a phenomenographic approach was carried out in study IV (Marton, 1981; Marton & Booth, 1997; Uljens, 1989, 1993). Within phenomenography it is assumed that whatever phenomenon or situation people encounter, it is possible to identify the limited number of qualitatively different and logically interrelated ways in which this is experienced, conceived or understood (Marton & Booth, 1997). According to Marton the words experience, conception and perception are synonyms (Marton, 1996). The conceptions vary not only between persons but also within the same person over time, because different aspects of a phenomenon are conceived within a framework of an entirety in relation to a given context (Barnard, McCosker, & Gerber, 1999; Bowden, 1995; Uljens, 1989, 1993). The purpose of phenomenographic studies is to find and describe the variation of conceptions in terms of the different aspects that define the phenomenon under study (Marton, 1981, 1994; Marton & Booth, 1997; Uljens, 1989, 1993). A central, theoretical concept in phenomenography is “the second order perspective”. This perspective deals with how something is experienced by a person, how it is conceived to be, rather than what it really is, which is considered in “the first order perspective”. The second order perspective has to be explicitly adopted from formulating the research question throughout the data collection and analyses, i.e. trying to see the phenomenon through the informants’ eyes. The researcher has to step back consciously from his or her own experience of the phenomenon during the whole research process. Attention is directed to similarities and differences in individual statements, and the content is used to cluster the conceptions into clearly defined categories (Barnard, McCosker & Gerber, 1999; Marton & Booth, 1997). The categories may be hierarchically, horizontally or vertically interrelated, describing the variety and level of the conceptions. In phenomenographic research the entire result is called the outcome space which is composed of the combined

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categories (Barnard, McCosker & Gerber, 1999; Bowden, 1995; Marton, 1988; Uljens, 1989). The data analysis, which was carried out according to the phenomenographic method, involved seven steps inspired by Hyrkäs et al. (2003): 1. Reading of the entire material in order to obtain an overall picture 2. Selection of the comments of interest for the research tasks 3. Comparison of the comments with the content of the interviews 4. Formation of pools of meanings by grouping the comments 5. Comparison of the similarities and differences of the pool of meanings and

further testing of emerging categories by comparing them with the entire data

6. Naming of the categories 7. Generation of descriptions of categories and their interrelationships The analysis was carried out as a continuous movement back and forth between the parts and the whole of the interviews, and between the steps of analysis.

Reliability, validity and trustworthiness

Triangulation was used in this thesis by means of a combination of quantitative (study I) and qualitative methods (study II-IV) and the use of different sources of data, i.e. patient records (study I) and interviews (study II-IV). The combination of quantitative methods and qualitative methods strengthens the trustworthiness of the research findings as they complement each others’ strengths and weaknesses and provide a richer and deeper understanding of the area under study (Carr, 1994; Corner, 1991; Foss & Ellefsen, 2002; Polit & Beck, 2004; Thurmond, 2001).

Study I

The quality of quantitative studies is assessed through the criterion reliability, which is the degree of consistency or precision that an instrument measures an attribute, and the criterion validity, which is the degree to which an instrument measures what it is supposed to measure (Polit & Beck, 2004; Streiner & Norman, 1995). The reliability of the audit instrument was focused on equivalence and determined regarding inter-rater reliability. An observer-agreement test was performed as follows: The first author and a second observer examined independently of each other 15 (30%) of the total number of records. Nine items covering problems related to eating (pain, difficulties in chewing and swallowing, lack of appetite, nausea, taste changes, mouth dryness, thick and ropy saliva, constipation and diarrhoea) were chosen because documentation of these items existed in the patients’ records. In order to make it possible to use SPSS for calculations, the result of the audit of these items was summarized

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into an index. Inter-rater reliability was calculated on that index as per cent agreement (96%) and Cohen’s kappa (0.82). Face and content validity of the instrument (Streiner & Norman, 1995) were established by means of a literature review and a further examination by experts in the fields of clinical nutrition and radiation oncology.

Study II-IV

The criteria and methods used to assess quantitative data are based on measurements and can thus not meaningfully be applied to qualitative data (Polit & Beck, 2004; Streubert Speziale & Carpenter, 2003). The quality of qualitative studies is instead often judged with regard to trustworthiness. The scientific criteria commonly used for its judgement are credibility, fittingness (or transferability) and auditability (or dependability) (Beck, 1993; Sandelowski, 1986). Credibility refers to the truth value of the findings or the believability of the data. Fittingness is the extent to which the findings of a study “fit” or can be transferred to contexts outside the study situation. Auditability refers to the consistency of data or stability of data over time (Beck, 1993; Polit & Beck, 2004; Sandelowski, 1986). In order to achieve credibility, self-awareness and critical reflection were used in order to identify pre-conceptions of the various phenomena under study and as far as possible ‘set them aside’ prior to and throughout the data collection and data analysis (cf. Dahlberg, Drew & Nyström, 2001; Nyström & Dahlberg, 2001). The use of a second interview in study II and IV further enhanced the credibility of the findings, since the repeated interviews made it possible to further develop the trusting relationship between the interviewer and the informant. The second interview was also used to elucidate obscure parts and validate the preliminary findings form the first interview (Beck, 1993; Horsburgh, 2003; Krefting, 1991; Sandelowski, 1986). The interviewer did not return to the informants for validation of the findings in study III, but made instead summaries both during and at the end of each interview for the informants’ clarification and verification. The use of quotations to illustrate the themes (study II and III) and descriptive categories (study IV) was also meant to contribute to the credibility (Beck, 1993; Benner, 1994; Sjöström & Dahlgren, 2002). Sandelowski (1986) states that the fittingness of a study depends to a large extent on its degree of credibility. Thus, strategies used to determine credibility also enhanced fittingness. Furthermore, fittingness was ensured by the fact that all informants (study II-IV) experienced eating problems due to illness and/or radiotherapy and they showed a positive and open-minded attitude towards the interview and the purpose of the study. The purposeful sampling resulted in a range of informants who are representative for the population as a whole (Beck, 1993; Sandelowski, 1986). It seemed easy for them to express their experiences and conceptions in a relaxed atmosphere and the interviews

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provided rich data with both depth and varied statements. The authors also strived to describe the study settings and provide thick descriptions in order to enable the reader to judge whether the findings “fit” outside the study context. To enhance auditability the steps of analysis were followed as closely as possible (Sandelowski, 1986). The authors have strived for clarity throughout the research process in order to make the decision trail visible (Koch, 1994), for example by using quotations. Furthermore, the research group co-operated during data analysis and repeatedly compared transcripts and the emerging themes and descriptive categories respectively, by coding and recoding the data (Beck, 1993; Bowden, 1995; Krefting, 1991; Marton & Booth, 1997; Sandelowski, 1986; Uljens, 1989).

Ethical considerations

All studies were carried out in accordance with ethical principles and guidelines as outlined in Ethical guidelines for nursing research in the Nordic Countries (Northern Nurses' Federation, 2003). Ethical considerations were applied regarding voluntariness, confidentiality and integrity. Permission to audit patient records in study I was given by the chief physicians responsible for the departments of oncology and otorhinolaryngology where the study was performed. The collected material was coded and kept separated from the treatment registry lists. Permission to carry out study II-IV was given by the chief physicians at the oncology departments where the respective studies were performed. Access to potential informants was initiated with support of the nurses responsible for the direct care of each individual patient. The patients were provided with a letter explaining the purpose and nature of the study. Patients who were willing to participate were then contacted by the author (ML) and given verbal information. The informants were also informed that they were free to decline participation at any time during the interviews and that their care would not be affected whether they participated or not. Furthermore, they were not asked to give their written consent in order to make it easier to decline participation. The researchers conducting study I-IV did not participate in the care of the informants. Study II was approved by the Committee on Research Ethics, Karlstad University, Sweden. Study I, III and IV were approved by the Committee on Research Ethics of the County Council of Örebro, Sweden.

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Main findings

The main findings from the quantitative study (I) describe the occurrence and treatment of eating problems, their causes and consequences as documented in the patients’ records during the trajectory of care. The findings from the qualitative studies illuminate what it means to be a patient suffering from eating problems due to head and neck cancer and its treatment during different periods in the trajectory of care (II, III) and how a supportive nursing care clinic can be conceived (IV).

Occurrence of eating problems and their causes (study I)

The eating problems, causes of eating problems and oral health problems found are presented in Table 5.

Table 5. Documented eating problems, their causes, and oral health problems during

the trajectory of care (frequencies and %). Baseline

(N=50)

3rd

week

(N=50)

End of RT†

(N=50)

1 month

(N=47)

6 months

(N=40)

12 months

(N=32)

Eating Problems and Causes* n (%) n (%) n (%) n (%) n (%) n (%)

Chewing and/or

swallowing difficulties

11 (22)

24 (48)

21 (42)

20 (43)

12 (30)

7 (22)

Pain 11 (22) 34 (68) 36 (72) 25 (53) 19 (48) 9 (28)

Loss of appetite 1 (2) 3 (6) 2 (4) 1 (2) 4 (10) 5 (16)

Nausea 0 (0) 12 (24) 9 (18) 4 (8) 2 (5) 0 (0)

Taste changes 0 (0) 5 (10) 7 (14) 3 (6) 3 (8) 3 (9)

Mouth dryness 1 (2) 15 (30) 22 (44) 13 (28) 17 (43) 17 (53)

Thick and ropy saliva 1 (2) 17 (34) 26 (52) 14 (30) 7 (18) 5 (16)

Undefined eating problems 9 (18) 14 (28) 22 (44) 16 (34) 12 (30) 11 (34)

Oral health problems:

Mucositis 1 (2) 34 (68) 38 (76) 26 (55) 8 (20) 5 (16)

Fungal infection 1 (2) 10 (20) 3 (6) 3 (6) 3 (8) 1 (3)

Normal status 0 (0) 0 (0) 0 (0) 7 (15) 10 (25) 7 (22)

No documentation 48 (96) 10 (20) 12 (24) 5 (11) 12 (30) 8 (25)

*A combination of eating problems and different causes and oral health problems could occur. †RT(radiotherapy). The proportion of patients with documented eating problems and/or causes of eating problems were large during the whole trajectory of care. Before radiotherapy the proportion was 44% (n=22). Of the six patients treated with

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surgery before radiotherapy eating problems and/or causes of eating problems were found in three patients. After three weeks of radiotherapy the proportion of patients with eating problems and/or causes to eating problems increased to 80% (n=40), and at the end of radiotherapy it was found for all (n=50) patients. After treatment the proportions were 94% (n=44), 85% (n=34), and 88% (n=28) after one, six and twelve months respectively. Difficulties with chewing and/or swallowing and pain became more frequent during radiotherapy and was found at the end of radiotherapy for 42% (n=21) and 72% (n=36) respectively. Mouth dryness and changed saliva were rare before radiotherapy but existed at the end of radiotherapy for 44% (n=22) and 52% (n=26) respectively. During the year after radiotherapy mouth dryness gradually became more frequent while pain and difficulties in chewing and/or swallowing continued to be common. Oral health problems (mucositis and fungal infection) were documented for the majority of the patients after three weeks of radiotherapy. Mucositis remained common after one month and occurred in 55% (n=26) of the patients records. Further analysis showed that for the majority of the patients a combination of eating problems and/or causes of eating problems was found on the same occasion for audit except before treatment. During radiotherapy an audit week by week revealed that two or more eating problems and/or causes of eating problems were documented for 94% (n=47) of the patients. After treatment the proportions were 70% (n=33), 65% (n=26), and 66% (n=21) after one, six and twelve months respectively.

Consequences of eating problems (study I)

The patients’ ability to eat, which was found through documentation of dietary consistency, was decreased during the radiotherapy treatment period. It was necessary to adjust and modify the food’s consistency or not even possible to eat for 64% (n=32) at the end of radiotherapy. After treatment the records revealed that 35% (n=14) still had a diet with changed consistency six months after radiotherapy or required enteral feeding. Due to missing data of weight, especially before treatment but also later in the trajectory, the percentage of weight loss could be followed only for 20 patients (40%). The mean percentage of weight loss for these patients was 5% after three weeks of radiotherapy, 8% at the end and 17% one year after treatment. No significant differences in percentage of weight loss were found with reference to sex, tumour stage or eating problems present before treatment or not (Mann-Whitney U-test) or tumour location (Kruskal-Wallis test). Regarding type of fractionation, a significant difference was found the third week of radiotherapy. The patients treated with hyperfractionated radiotherapy had a significantly higher percentage of weight loss compared to the patients treated with conventional fractionation (p=0.01, Mann-Whitney U-test).

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Also other parameters important to the assessment of eating problems and nutritional status were lacking in the documentation. The patients’ height was missing for 86% of the patients, precluding the use of Body Mass Index and usual weight was missing for 90%. In addition, the documentation of laboratory values such as serum albumin and electrolytes were inconsistent during treatment and follow-ups, and could therefore not be used for assessment of nutritional status. Elimination problems were documented for 10% (n=5) during radiotherapy and very seldom during the other audit occasions.

Medical treatment and nursing care (study I)

After three weeks of radiotherapy 26% (n=13) of the patients were treated with enteral nutrition and at the end of radiotherapy the proportion increased to 42% (n=21). During follow-up the proportions were 26% (n=12), 10% (n=4) and 9% (n=3) after one, six and twelve months respectively. The patients (n=22) with documented eating problems and/or causes of eating problems before treatment were significantly more often treated with enteral nutrition than those who had no documented problems or causes (n=28) (p=0.03, Chi-squared test). Also patients with pharyngeal cancer (n=23) were more often treated with enteral nutrition during radiotherapy than patients with cancer in other sites (p=0.024, Fisher’s exact test) and three of the six patients treated with surgery received enteral nutrition during the radiotherapy treatment. Parenteral nutrition was prescribed only for a few patients during radiotherapy and one month after completion of the treatment. Prescriptions of dietary supplements were found for 34% (n=17) of the patients during radiotherapy. During the follow-up period, such prescriptions were very rare. The majority of the patients were prescribed analgesics (96%, n=48), antifungals (88%, n=44) and mouth rinses (70%, n=35) in order to counteract the side-effects during the radiotherapy treatment period. Also antiemetic drugs (30%, n=15), expectorants (34%, n=17), and saliva substitutes (44%, n=22) were prescribed. One month after radiotherapy, prescriptions of analgesics were recorded for 51% (n=24) and antifungals for 40% (n=19). Six and twelve months after treatment, analgesics were prescribed for 22% (n=9) and 22% (n=7) respectively. Few other prescriptions of pharmaceuticals were found. Recordings of mouth rinses, expectorants, and saliva substitutes were rare after treatment. During the radiotherapy period information about medical treatment and side-effects was recorded for 70% (n=35). Of these 28% (n=14) received information more than once. Dietary advice was documented for 28% (n=14) of the patients and information about enteral nutrition for 26% (n=13). Of the patients admitted to hospital during treatment (n=24) information and advice regarding mouth care was documented for 14 (58%). Documentation regarding dietary modifications and food recording occurred only for a few. Practical support with mouth care was noted for nine patients. After treatment,

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documentation about information and support regarding these issues was very rare.

Lived experiences of eating problems during radiotherapy (study II)

This study which focused on the patients’ experiences of eating problems during the radiotherapy treatment revealed four main themes. Two themes captured the experiences of the eating problems and their causes per se; ‘Ability to chew and swallow’ and ‘Will and desire to eat’, one captured the consequences of these problems in daily life; ‘The way of life is disturbed’ and one described how the eating consequences could be endured; ‘Trying to see the end – to survive’. The main themes ‘Ability to chew and swallow’ and ‘Will and desire to eat’, were interrelated, describing that the experiences of eating problems consisted of two dimensions, one physical and one emotional. Within these main themes three themes were identified; ‘Experiences of change in saliva quantity and consistency’, ‘Experiences of narrowness and pain’ and ‘Experiences of taste changes and nausea’. The findings showed that the eating problems were related to experiences such as mouth dryness, swelling, narrowness and pain in the mouth and throat, which made it hard to chew and swallow. The saliva also could be described as increased in quantity and more viscous than usual, which also affected eating negatively as it was nauseating. The patients described a reluctance to eat due to loss of appetite, nausea, pain, changes in saliva consistency and taste as well as fear of choking and pain. A circular and reciprocal relationship was found between the two main themes implying that physical problems, like dryness, narrowness and pain, diminished the will and desire to eat, and the decreased will and desire to eat made it harder to overcome the physical difficulties in chewing and swallowing. The problems experienced were described as a continuing process over time, which worsened with the accumulated dose of radiation. The third main theme ‘‘The way of life is disturbed’, captured four themes; ‘Loss of the meal – loss of togetherness’, ‘Paralysing tiredness’, ‘Life itself is threatened’ and ‘The image of self is changed – shame waits round the corner’. These findings showed that the eating problems led to losses and threats on different levels in daily life. As the eating problems grew worse during the radiotherapy treatment the patients experienced an aggravated tiredness, which strongly limited their ability to perform their everyday tasks. Their self image could be affected during treatment owing to difficulties to talk in an articulate way and abnormal eating behaviour, such as eating mashed food, which gave rise to feelings of shame and reluctance to eat in front of other people. The inability to join meals was experienced as a loss of togetherness and sociability, since the meal was seen as a unifying ritual. The awareness of the necessity to eat in order to manage daily life but not being able to do so, gave rise to feelings that life itself was threatened, not only by the cancer but also by insufficient nutrition. Since symptoms such as pain, sticky salvia and narrowness were constantly present,

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the patients were reminded all the time of their illness and of life being threatened. The fourth main theme ‘Trying to see the end – to survive’ consisted of two themes; ‘Moving between hope and despair’ and ‘To endure the situation’. These findings showed how hard the patients struggled to get through the treatment and how they continuously moved between hope and despair. The worse the eating problems became, the stronger their doubt grew about the success of the treatment. However, as they got nearer the end of the treatment their belief in the future grew stronger. In order to feel hope and meaning in the situation and to endure an inner strength was needed, and they told about different strategies used. Some tried to accept their suffering as a part of the treatment, as something unavoidable, or persuade themselves to endure, and some tried to deny the problems. Others tried to handle the problems they faced by positive thinking. The patients’ deep insight about the necessity to eat in order to survive was an obvious source of strength. This insight helped them to fight their eating problems and try to eat in spite of all the difficulties. Strength also came from outside by means of support from family, friends and hospital staff. In different ways they could motivate the patients in their vacillation between hope and despair. This support was experienced as important and could be both emotionally and practically related. It could be having someone to share feelings and thoughts with, or someone giving assistance concerning food preparation, or motivating the patient to eat. Adequate information given by the health care professionals about the side-effects of treatment and their consequences in daily life was also a source of strength as it made the patients feel safe and secure, which helped them to endure during the radiotherapy treatment.

Lived experiences of daily life during the trajectory of care having eating problems (study III)

This study focused on the patients’ experiences of daily life during the trajectory of care with focus on eating problems. The study revealed that the experience of having eating problems was shadowed by the experience of having and being treated for cancer. The two experiences were strongly connected. Therefore, in order to correctly render the informants’ experiences, the findings cover both these experiences. The trajectory of care for these patients was a demanding process characterised by a series of ups and downs. Three interrelated themes emerged which describe these experiences: ‘Disruption of daily life’, ‘Waiting in suspense’, and ‘Left to one’s own devices’. These three themes interacted and influenced each other in a complex and compound whole and were all present during the whole trajectory of care, but to various extents and degrees during different periods. From these themes the essential structure ‘Needing a hand to hold’ emerged.

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The theme ‘Disruption of daily life’ described the patients’ experiences of how their daily life for various reasons was disrupted during the whole trajectory of care. From the informants’ first suspicion of cancer until start of treatment, the most salient feature of the experience was the fear of cancer, which provoked thoughts of life and death. During the period of radiotherapy the daily treatments, side-effects and eating problems dominated and temporarily more or less repressed these thoughts. The radiotherapy itself caused disruption of daily life as the patients had to visit the radiotherapy department once or twice a day. The highly technical environment and having the face covered with a mask, and the head and shoulders fixated during the treatment was often experienced as trying. Staying at the patient hotel because of long distance to home led to a separation from families and friends that could be trying. After completion of treatment, both ongoing side-effects and fear of recurrence of cancer contributed to the disruption. The eating problems were a huge part of the patients’ experiences of disruption. Some patients experienced eating problems already before treatment due to pain and narrowness caused by the tumour, resulting in swallowing difficulties. The cancer diagnosis further added negatively on eating as the anxiety made the informants lose their appetite. During the period of radiotherapy the informants’ ability and wish to eat were gradually reduced as the side-effects worsened over time. Abnormal eating behaviour, difficulties in performing adequate oral hygiene, and changed appearance due to weight loss or other side-effects could lead to social withdrawal. After completion of the treatment the patients expected daily life to return to what it used to be. However, both the side-effects and the eating problems were at their peak, and even grew worse for some of the patients, which made them feel miserable and fragile for some further weeks. When the treatment was finished there was time left to reflect on life and the future, which opened up for suppressed feelings of fear of cancer and existential questions could again be brought to the surface. In order to cope with the situation the patients used different strategies during the trajectory of care. Some just resigned themselves and accepted the side-effects of the treatment and the eating problems as something unavoidable. Others showed fighting spirit including determination and positive thinking. Yet other patients compared themselves with others who were in worse circumstances. Some tried to hold on to their usual life as much as possible. Doing ‘normal’ things drew the attention away from thoughts about the cancer and the side-effects of its treatment. The theme; ‘Waiting in suspense’ described how the patients’ experienced a waiting during the trajectory of care, which was filled with uncertainties and questions. The pre-treatment period was often experienced as a long waiting filled with a fear that the cancer was growing and life was somehow on hold. All the extensive treatment preparations were hard to understand and the patients wished the treatment to start promptly. During the radiotherapy period

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the waiting for the treatment to end grew gradually stronger as the side-effects and other disruptions of daily life increased. After completion of treatment there was a new waiting for being able to function and eat as usual. The informants longed for sensing the taste of certain food items again and the enjoyment of eating. Such experiences were hard to put up with, since they tended to continue for a longer time than the informants were prepared for. They waited for things to be as usual again, vacillated between hope and despair, without knowing how long the waiting would be. This uncertainty drained the informants’ strength. The theme ‘Left to one’s own devices’ described experiences of being left alone that were present more or less during the whole trajectory of care. The patients often experienced that they were not prepared and had insufficient or inadequate information regarding how to handle their questions and problems. Before the radiotherapy the patients were informed that the treatment was tough and strenuous. They could briefly be told about the side-effects of the radiotherapy and the importance of gaining some weight, but not about how or why this was important. Most of the patients experienced the radiotherapy treatment period as partly safe and secure, since they had daily contacts with health care professionals. This meant that they were in the hands of experts and felt that the cancer was actively fought. However, in spite of daily contacts with professionals during the treatment period, most patients experienced that they could not ask all their questions since the time was too short. Sometimes the health care professionals also set unreachable goals, which provoked anxiety and despair in the patients and sometimes contradictory information was given. The experiences of being left on one’s own was especially evident during pauses in the treatment and when the treatment period was finished. The patients then often struggled to cope with the problems they faced without active support from the health care system. Continuous contacts could be provided after treatment with a dental hygienist or a psychosocial counsellor, which could make the patient more safe and secure. However, such experts gave only information and advice in their own specialty area and did not take the patients’ total situation into account. During the period of radiotherapy fellow patients were appreciated, as they could offer support and encouragement. This could also be given by family and friends to some extent. However, they could not fully support the patients as they lacked knowledge about how to meet the problems with regard to eating and other side-effects of the radiotherapy. Sometimes the family could also be a burden when they needed the patients to comfort their own worries and anxiety about the cancer. The essential structure ‘Needing a hand to hold’ showed that the patients due to all their problems during the trajectory of care, needed a continuous contact with a competent and knowledgeable health care professional, who was familiar with the disruption of daily life that head and neck cancer and its treatment entail.

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They needed a person who could support and guide them through the different phases during the trajectory of care.

The significance of a supportive nursing care clinic (study IV)

This study focused on the patients’ conceptions of the significance of a supportive nursing care clinic before, during and after completion of radiotherapy. The findings were described in one main category: ‘A source of safety and security’. This main category was composed of three horizontally structured descriptive categories: ‘Knowledge and practical advice’, ‘Coordination and control’, and ‘Commitment and concern’. The nurse clinic was conceived and understood as a source of safety and security during the whole trajectory of care. The underlying conceptions of the main category had two dimensions; a person-related dimension describing attributes and behaviour of the nurses who provided the care, and an organisation-related dimension describing how the care was planned and conducted. The person-related dimension illuminated how trust and confidence was mediated by the nurses since they were experienced as accountable, skilled and competent. Their emphasis on the patients’ multitude of needs, physical as well as emotional, further contributed to this dimension. The organisation-related dimension focused on continuity and easy access to care whenever it was needed throughout the trajectory of care, from diagnosis up to and including the rehabilitation period. The significance of the nurse clinic varied depending on where in the trajectory the patients were, what needs and problems they experienced, and how severe these were experienced by the individual patient. The clinic was especially important before and after completion of treatment. When no other regular contacts in the health care system existed the nurse clinic offered a sense of stability and control. The nurses at the clinic were seen as the primary source of knowledge and practical advice regarding nutritional issues during the whole trajectory of care. The patients conceived the nurse to be the person who helped to prevent malnutrition. For most patients the contact with the nurse was crucial as she could give them practical advice of how to handle different eating problems. This was especially essential for the patients treated with enteral nutrition. The support provided by the nurses gave rise to a sense of control and certainty and helped the patients to cope with the situation. This was especially important when the patients faced transitions in the trajectory of care. One of the most valuable aspects of the nurse clinic was the continuity in contact over time with the same nurse. This facilitated the creation of a trustful relationship, which made it possible for the patients to expose vulnerabilities, worries and concerns without losing dignity or pride. According to the patients the nurses kept the sometimes fragmentised and divided care together through

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coordination of the care. Contact with the nurse clinic decreased feelings of frustration and uncertainty and feelings of abandonment. The empathy and understanding, which the nurses showed the patients, comforted the patients’ feelings of despair and led to a sense of well-being. The extent of the patients’ need for confirmation and emotional support from the nurse clinic varied. Their needs could depend both on how threatening they experienced the illness and treatment side-effects to be, and on the strength of the patients’ social networks. However, it was obvious that the more threatened the patient felt the greater the need of support was. In spite of the extent of support needed, all patients appreciated the compassion, concern, respect and kindness the nurses mediated to them. The commitment shown by the nurses gave fortitude and strength to endure.

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Comprehensive understanding of the findings

The comprehensive understanding is based on an interpretation of the four studies constituting this thesis (Figure 2). Each study has its own perspective, but taken together they deepened the understanding of the findings.

Being a patient during the trajectory of care

The four studies showed that being a patient in the trajectory of care often meant that life was disturbed and threatened. This was partly due to the eating problems and their consequences, which occurred during the whole trajectory of care (I, III, IV) but was experienced as most intense during radiotherapy (II) and the nearest weeks after completion of radiotherapy (III). The disturbances and threats experienced due to eating problems affected the whole person as they were physical (I-IV), psychological, social and existential (II, III). The experiences of eating problems due to the tumour and its treatment and the experience of having cancer per se were strongly connected and together they disturbed and threatened the informants’ daily life. The other part that disturbed the patients’ life was the waiting in suspense. The patients experienced a long and trying waiting in uncertainty due to lack of knowledge and support, practical as well as emotional. This was most pronounced during pauses in radiotherapy (III) and after completion of the treatment when the lack of support from the health care was obvious (I, III). The patients were then left to their own devices. In order to endure, they needed both inner strength, described as own coping strategies, and strength from outside, described as support from family, friends and health care professionals (II, III). The nurse clinic was found to give a hand to hold during the whole trajectory of care (IV). The nurses at the clinic could meet these patients’ needs of knowledge, care and support, both concerning practical measures related to the eating problems and other side-effects of the treatment, and concerning their emotional needs. In addition the nurse clinic could support the relatives in their worries and anxiety (IV).

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Life is disturbed and threatened

Having cancer

Being a patient with eating problems

Will and desire to eat

Loss of togetherness

Changed self image

Ability to chew and swallow

Weight loss

Tiredness

Waiting in suspenseLeft to one’s own devices

Strength from inside

Strength from outside

The nurse clinic – A hand to hold

T r a j e c t o r y o f c a r e

Life is disturbed and threatened

Having cancer

Being a patient with eating problems

Will and desire to eat

Loss of togetherness

Changed self image

Ability to chew and swallow

Weight loss

Tiredness

Waiting in suspenseLeft to one’s own devices

Strength from inside

Strength from outside

The nurse clinic – A hand to hold

T r a j e c t o r y o f c a r e

Figure 2. Comprehensive understanding of the findings (study I-IV).

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Discussion

The main purpose of this thesis was to acquire knowledge about head and neck cancer patients’ daily life with focus on eating problems during the trajectory of care. In order to obtain a comprehensive understanding, data were collected during different periods in the trajectory of care and gathered by a chart review of medical and nursing documentation and by qualitative interviews with patients, who had experiences of the phenomena under study. This brought data from both an outside and an inside perspective, which could add to the understanding and validate the findings.

Eating problems, causes and treatment during the trajectory of care

The audit of the documentation (I) revealed that eating problems were common during the whole trajectory of care. Even before start of the radiotherapy eating problems or causes of eating problems were found for nearly half of the patients. These findings are in line with other studies showing that patients often have symptoms such as oropharyngeal pain, mouth dryness and difficulties in chewing before the onset of radiotherapy (Duncan et al., 2005; Fisher, Scott, Scarantino et al., 2003). Previous research has also shown that severe eating problems occur during radiotherapy to the head and neck area and become aggravated with accumulated dose of radiation (Langius, Björvell & Lind, 1993; Rose-Ped et al., 2002; Wilson, Herman & Chubon, 1991; Öhrn, Sjödén, Wahlin et al., 2001). Although the severity of the eating problems and their causes were unfeasible to assess in the documentation, the high proportion of patients, and the great number of eating problems and causes of eating problems found in the records during treatment in study I, support these findings. The interview studies (II, III) further confirmed what was found in the documentation study. Eating problems were experienced before (III), during (II, III) as well as after completion (III) of the radiotherapy treatment. Furthermore, eating problems were experienced as a continuing process over time, which worsened during the radiotherapy period (II, III). The chart review revealed that a majority of the patients had a combination of two or more eating problems and/or causes at the same occasion for audit during the whole trajectory of care except before treatment. Thus, even though there might be a discrepancy between the eating problems and causes that existed in reality and those found in the documentation (cf. Ehnfors & Smedby, 1993; Ehrenberg & Ehnfors, 2001), a great complexity was demonstrated. Eating problems and their causes could therefore be seen as a symptom cluster in which a particular symptom may act as catalyst for the occurrence of other symptoms (Armstrong, 2003; Dodd, Miaskowski & Lee, 2004). Thus, the occurrence of several concurrent eating problems and causes to eating problems may be multiplicative in nature and cause a more extensive impairment in functional status than expected (Dodd, Miaskowski & Paul, 2001). The complexity of eating problems found in this study (I) may also

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partly explain the sometimes vague formulations in the patient records such as ‘inability to eat enough’, which in the data collection were defined as ‘undefined eating problems’. In these cases it was impossible to decide if the note concerned problems to chew and swallow or was related to a cause to eating problems such as nausea or dry mouth. As a thorough and systematic assessment is the first step in order to find an adequate intervention (Athlin, 1988; Dodd, Janson, Facione et al., 2001; Jacobsson, Axelsson, Wenngren et al., 1996; Sidenvall & Ek, 1993), the sometimes vague documentation of eating problems in this study is worth to be noticed (I). The interview studies (II, III) contributed to the understanding of the complexity of eating problems found in the chart review (I), since the patients told about a wide range of causes. The findings of these studies also gave a new and deeper understanding of the phenomenon through the revelation of the circular and reciprocal relationship between eating problems of physical nature and eating problems related to the will and desire to eat (II). The findings further highlight the necessity of having a holistic view on eating problems and of focusing on the patients’ multitude of needs instead of viewing them as a range of problems that can be treated one by one (Dodd, Cho, Cooper et al., 2005; Haworth & Dluhy, 2001). A striking finding was that the experiences of having eating problems and the experience of having cancer could not be separated (II, III). This finding is already well known from previous studies on patients with various cancer diseases (Boman, 1998; Forsberg, 1996; Ideström, Milsom, Andersson-Ellström et al., 2006; Wengström, 2000). Again the necessity is emphasized for psychosocial interventions in addition to interventions addressing physiological symptoms. Using both perspectives in approaching eating problems may increase the effectiveness of the care and the possibility to find appropriate interventions that meet the individual patient’s needs. Eating problems should be seen as a complex phenomenon in a specific context including the individual patient’s life situation (cf. Westergren, 2001). It is well known that patients often suffer from side-effects due to radiotherapy treatment for a considerable period of time because severe acute side-effects may become chronic and late side-effects can develop months or years after treatment (Bjordal et al., 2001; Bjordal, Kaasa & Mastekaasa, 1994; de Graeff et al., 2000a; Dörr & Hendry, 2001; Stone et al., 2003). However, research on their long-term effects on patients’ ability to eat is scarce (Beeken & Calman, 1994; Rose-Ped et al., 2002). The chart review (I) showed that the frequency of eating problems and different causes remained high and a majority of the patients still had eating problems/causes of eating problems after one year, and that the major causes to eating problems changed (I). During treatment pain was most common followed by mouth dryness and changes of amount and consistency of saliva, and after one year mouth dryness was most frequent. This finding is in accordance with research on side-effects of radiotherapy to the head and neck area, which show that after a year the acute mucosal reactions has subsided and late side-effects such as fibrosis and xerostomia have developed

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(Dörr & Hendry, 2001; Stone et al., 2003; Vissink et al., 2003). Hence, due to these complications on the mucosa and salivary glands it is logical that the patients continue to have eating problems over a long period of time. The frequency of documented pain and prescribed analgesics did not correspond to each other at the occasion for measurement after six months (I). The reason for this is not possible to know from the documentation (I) but research has shown that patients’ general aversion to taking drugs or inappropriate pain assessment are possible causes for an inadequate amount of prescriptions (Whale, Lyne & Papanikolaou, 2001). The patients who had documented eating problems and/or causes of eating problems before treatment (44%) were significantly more often treated with enteral nutrition (I). One explanation might be that these patients suffered more from severe eating problems during radiotherapy than the other patients. This finding highlights the need to screen patients for eating problems before commencing radiotherapy in order to identify patients at nutritional risk and make nutritional interventions on time possible (cf. Lees, 1999). Additionally, even if the sample size was small, it is worth noting that three of the six patients who were treated with postoperative radiotherapy received enteral nutrition during the radiotherapy treatment period. This draws attention to the fact that patients treated with surgery is a group with potential risk for malnutrition.

Consequences of eating problems in daily life

In this thesis eating problems and causes to eating problems were found to have consequences for the patients’ daily life. The problems affected the patients during the whole trajectory of care (I, III, IV) and comprised the whole person as they were physical (I-IV), psychological, social, and existential (II, III). Previous studies have shown that patients with head and neck cancer often have dietary problems and are nutritionally compromised when commencing radiotherapy (Bassett & Dobie, 1983; Chencharick & Mossman, 1983; Lees, 1999). In study I it was not possible to assess the patients’ nutritional status before radiotherapy as several important parameters were missing in the documentation. However, since eating problems and causes to eating problems occurred before radiotherapy (I, III) it is probable that some of the patients in this thesis had impaired nutritional status already before start of radiotherapy. The chart review indicated that patients started to lose weight early during treatment (I). Weight is considered an easy and available nutritional parameter to obtain and assess serially, and percentage of weight loss is judged to be an important predictor for malnutrition (Ottery, 1994). In spite of that, weight was not followed on a regular basis during the trajectory of care according to the documentation. Involuntary 5% weight loss in less than one month without stabilization or beginning weight gain has been shown to be a reliable criterion for malnutrition in head and neck cancer patients (Hammerlid, Wirblad, Sandin et al., 1998; Inui, 2002). Some authors consider a weight loss of 1-2% in one

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week as significant, and a sign of compromised nutritional status (Beaver, Matheny, Roberts et al., 2001; Nitenberg & Raynard, 2000; Ottery, 1992, 1995). For the sub-sample of 20 patients, where percentage of weight loss was possible to calculate from start of radiotherapy until one year after treatment, the figures were alarming. The mean percentage of weight loss was considerable already after three weeks of radiotherapy and it continued to worsen after treatment. Even though eating ability and dietary consistency was not consistently recorded in this study, inability to eat most probably contributed to why the patients began to lose weight and then failed to regain lost weight (cf. Beeken & Calman, 1994; Wilson, Herman & Chubon, 1991). A contributing reason may also be co-morbidities compromising nutritional status unknown to the authors. As already mentioned, nutritional interventions to meet the weight loss were scarce according to the documentation (I). This supports the finding in study III, which showed that the patients often felt that they were left to themselves, especially after treatment, in handling their nutritional problems. One explanation could be according to Wells (1998a) that problems caused by radiotherapy to the head and neck, most often described as side-effects, are largely accepted as part of the treatment by both patients and staff. Hence, eating problems and subsequent weight loss might be viewed as inevitable and even normal. Also, when using patient records as a source of data, it must be kept in mind that documented care does not always reflect the care given (Donabedian, 1988; Ehnfors & Smedby, 1993; Ehrenberg & Ehnfors, 2001; Nordström & Gardulf, 1996). This might be a reason for why nursing interventions such as patient education and support were not more frequently documented during treatment. However, deficiencies in knowledge in the field of nutrition, both concerning assessment and proper interventions, might be a reason as well (Kowanko, Simon & Wood, 1999; Perry, 1997). It is of utmost importance to prevent weight loss and maintain adequate protein status, since it is often impossible to “catch up” once these problems have occurred (Beaver et al., 2001; Ottery, 1992). When nutritional risk or deficit is identified on screening it is important to carry out sequential reassessments after intervention on a regular basis in order to be effective (McMahon, Decker & Ottery, 1998; Ottery, 1992, 1995). The patients in this thesis experienced a gradually aggravating tiredness during the radiotherapy (II, III). After completion of the treatment, ongoing side-effects and eating problems made them more and more exhausted (III). Fatigue has been found to be a common symptom in patients with head and neck cancer (Bansal, Mohanti, Shah et al., 2004; Faithfull, 1998; Rose & Yates, 2001), which may have many explanations (Ahlberg, Ekman & Gaston-Johansson, 2005). Studies have shown that compromised nutritional status often leads to weakness and troublesome tiredness (Capra, Ferguson & Ried, 2001; Rose-Ped et al., 2002) and therefore it is likely that inadequate nutritional intake contributed to the exhaustion and psychosocial distress experienced by the

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patients. As lack of energy may in turn lead to insufficient amount of food eaten (cf. Jacobsson, Axelsson, Norberg et al., 1997; Westergren, Ohlsson & Rahm Hallberg, 2001) it is suggested that screening for fatigue could be a part of the nutritional care of patients with head and neck cancer. Previous research has described eating as an activity that enables social interaction (Barr & Schumacher, 2003; Batty, 2000). This was also illuminated in this thesis as the inability to eat and join meals meant a loss of togetherness and resulted in feelings of social isolation (II, III). Furthermore, the eating problems experienced by the patients led to changed eating behaviour that made the patients feel embarrassed and ashamed (II, III). As a consequence they avoided company at mealtimes as well as in general. As everyone has a need for connectedness and person-to-person contact, such an isolation is for most people very uncomfortable (Halldórsdóttir & Hamrin, 1996) and seriously affects wellbeing and quality of life. Since eating is connected with life, survival and hope for life (Barr & Schumacher, 2003; Sidenvall, 1995, 1999), it has also an existential dimension. This thesis supported the presence of this dimension by showing how eating problems may lead to existential questions and experiences of life being threatened by the inability to eat enough (II, III). Thus, the consequences of eating problems are far-reaching and embracing body, mind and soul, which highlight a need for a holistic approach in the care of these patients. It is already known that nutritional interventions must be initiated early in order to be successful (Beaver et al., 2001; Bloch, 2000; Capra, Ferguson & Ried, 2001; Ottery, 1995; Piquet, Ozsahin, Larpin et al., 2002). Thus, there is a need to assess head and neck cancer patients’ nutritional status and risk for malnutrition before the treatment starts in order make nutritional interventions on time possible. In addition, the findings of this study stress the need for reviewing the patients continuously after completion of treatment. As patients with eating problems due to radiotherapy also have to cope with the diagnosis of cancer and the effects of eating problems on their daily life, it is essential that the provided care focuses on the multitude of needs. For these patients, treated on an out-patient basis and meeting several different health-care professionals, it is vital that the care is carefully documented and guidelines provided to ensure that adequate information about the patients’ nutritional problems is not overlooked. It must be noted that the patients’ care was documented in both medical and nursing records during treatment. However, as the care after treatment only consisted of follow-up visits to physicians, nursing documentation was rare and only occurred for patients admitted to hospital. There is also a possibility that the patients received care for their cancer or other illnesses from other health care providers, such as general practitioners or district nurses. We do not know whether the patients received care from them for nutritional problems, as only the oncology and otorhinolaryngology records were audited in the chart review (I). However, if they did receive care from

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other health care professionals it is even more alarming that the patients continued to lose weight to such an extent as they did.

The patients’ need of support during the trajectory of care

As in a great amount of other studies on cancer patients (Ashbury, Findlay, Reynolds et al., 1998; de Leeuw et al., 2000; Johansson, Berglund, Glimelius et al., 1999; Sægrov & Halding, 2004; Sanson-Fisher, Girgis, Boyes et al., 2000) this study revealed that the patients suffered from a diversity of problems. In spite of the complexity of the problems they often were left to themselves to cope with the situation during the trajectory of care. The need for nutritional support was evident throughout the trajectory of care as side-effects of the treatment occurred, which impeded oral intake both during (I, II, III) and for a considerable period of time after treatment (I, III). Some patients even had problems to eat before the radiotherapy most probably due to surgery or the tumour itself (I, III). The findings stress the need of continuously adjusted information and support regarding nutritional issues (cf. Gritz et al., 1999; Rose & Yates, 2001). Even though the patients often felt confident during the radiotherapy treatment when they had the radiotherapy personnel near at hand (II, III), they often experienced insufficient information and a lack of time for questions about symptoms and worries about the future (III). An explanation to this could be the limited time scheduled for each patient, which diminished the possibility to create a nurse-patient relationship and perform high quality nursing care including assessment, implementation and evaluation during radiotherapy (Hinds & Moyer, 1997; Wells, 1998b; Wengström & Häggmark, 1998). Another explanation might be the patients’ reluctance to ask for help, feeling that others are more in need of care and attention (Wells, 1998a). Studies have also shown that many patients are reluctant to ask questions and report symptoms due to fear that something might be wrong (Moore & Chamberlain, 2004; Pennery & Mallet, 2000). Our finding is in line with other studies showing that patients receiving radiotherapy are lacking adequate information (Grahn, 1993; McNamara, 1999; Skalla, Bakitas, Furstenberg et al., 2004). As individualized, repeated and timely information regarding treatment and its side-effects are essential for patients’ experiences, control and certainty in their situation, and as knowledge about treatment and side effects forms a foundation for effective coping strategies (Pålsson & Norberg, 1995; Ring & Danielson, 1997; Skalla et al., 2004; Wells, 1998b) this finding should be seriously taken into consideration. The deficiencies concerning information to the patients found in this thesis (I, II, III) can be explained by the fact that the treatment and care were fragmentized and these patients met several different health care professionals during the trajectory of care (cf. Pålsson & Norberg, 1995; Sægrov & Halding, 2004; Sanson-Fisher et al., 2000). As adequate information plays a significant role in high quality care (Haggerty et al., 2003; Semple &

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McGowan, 2002; Skalla et al., 2004) the organisation of the care for these patients should be changed towards a better continuity in the trajectory of care. A striking finding was that the eating problems, their causes and consequences often were at their peak when the radiotherapy was finished and for some weeks afterwards (I, III), when the support of health care professionals was no longer easily accessible. This fact reinforces the need of a continuous support of the patients by means of education regarding symptom management for a considerable period of time after treatment (cf. Chua et al., 1999; Gritz et al., 1999). The thesis also illuminated the need of emotional and psychosocial support during the stressful periods of waiting that was experienced before (III), during (II, III) and after completion of the treatment (III). The waiting was hard and demanding to endure, filled with anxiety and uncertainty about the future, and the need for help with problems in daily life was obvious. These waiting periods drained a lot of the patients’ strength, both physically and mentally, which has also been found in other studies of cancer patients (Nelson, 1996; Pålsson & Norberg, 1995; Sægrov & Halding, 2004; Sherman et al., 2000). Support has been shown to make the period of waiting for cancer patients less stressful (O'Connor, Wicker & Germino, 1990; Pålsson & Norberg, 1995) but was yet often lacking. When the treatment was finished, the patients’ experiences were two-folded consisting of feelings of accomplishment and relief, and of anxiety and insecurity (III), which has also been found in other studies (Kelly, 1999; van der Molen, Griffiths & Landsdown, 2004; Wells, 1998a). This put the light on the necessity to build up a better support system for these patients throughout the trajectory of care that incorporates both regular contacts and easy accessibility. To meet the multitude of the patients’ needs, the care provided must be comprehensive and incorporate practical, psychosocial and emotional support.

The significance of a supportive nursing care clinic

As a way to meet the patients’ needs nurse clinics have started to evolve. Studies evaluating such services have found that this way of organising the care is experienced as safe, leads to more timely interventions and enhances continuity of care and thus improves quality of care (Campbell, German & Lane, 1999; Faithfull et al., 2001; Koinberg, Holmberg & Fridlund, 2002; Moore et al., 2002). The nurse clinic in this study was a complement to the regular care and follow-ups and the nurses worked in close collaboration with the physicians responsible for the patients’ medical care. Previous research has described quality nursing care seen from oncology patients’ perspective as characterized by theoretical knowledge, technical skill, continuity, attentiveness, coordination of care, individualized care, commitment and concern, and that the outcomes of such care enhance well-being and fortitude (Attree, 2001; Halldórsdóttir & Hamrin, 1997; Radwin, 2000; Radwin, Farquhar, Knowles et al., 2005). This was confirmed in our study (IV) in which the care was built up on the principles of the primary nursing model including comprehensive,

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individualized and continuous nursing care through a nurse with knowledge and authority (Manthey, 1992; Sellick, Russel & Beckmann, 2003). The care received from the nurse clinic resulted in confidence and a sense of wellbeing as the patients experienced the nurses as accountable, skilled and competent, and as their multitude of needs, physical as well as emotional, were emphasized. In Meleis’s transition theory (Meleis, 1997; Meleis, Sawyer, Im et al., 2000; Meleis & Trangenstein, 1994; Schumacher & Meleis, 1994) it is described how people undergo transitions in an ongoing process when moving between health and illness states. Meleis and Trangenstein (1994) propose a definition of nursing care as ‘facilitating transitions to enhance a sense of wellbeing’ (p. 257). The nurses’ task will be to facilitate transitions between phases of the illness trajectory and different care levels providing coordination and continuity of care, thus maximizing well-being (Meleis & Trangenstein, 1994). Meleis argues that nurses deal with transitions that take the biological, psychological, sociological and cultural aspects into account and provide a care comprising the patients’ total life situation. To regard the trajectory of care as a transition, puts the focus not only on the physical experience, but also the psychological, social and spiritual dimension of experiences (Meleis, 1997; Meleis et al., 2000; Meleis & Trangenstein, 1994; Schumacher & Meleis, 1994). Nurses should be competent to provide a care that focuses on the patients’ multitude of needs rather than on a single immediate need generated by treatment and side effects. This study has given further arguments for supportive nurse clinics as a means to reach high quality of care as the clinic in this study was shown to provide ample time, continuity and comprehensiveness of care, which led to an individually adjusted care throughout the trajectory of care.

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Methodological considerations

Method triangulation, or the increasingly used term ‘mixed methods’ (Thurmond, 2001; Williamson, 2005), has been used in this thesis. Although there is an ongoing debate regarding the appropriateness of this strategy, and some researchers argue that the paradigms that underpin the different methodologies are incompatible on a fundamental level, a combination of quantitative and qualitative studies has been increasingly used in nursing research during the last decade. Method triangulation has been described as a form of comparative analysis in which each analysis can give more understanding of the topic under study (Patton, 2002). Quantitative studies are often strong with regard to generalizability, but they lose the context that illustrates the meaning of the experience of the individual, which qualitative research provides (Polit & Beck, 2004). Where quantitative research demonstrates cause-effect relation between variables, qualitative research provides the opportunity to get a deeper understanding of the reasons behind. Furthermore, qualitative data can illuminate the sometimes complex processes that a positive result, or the absence of it, depends on (Grypdonck, 2006; Risjord, Dunbar & Moloney, 2002). Qualitative research can also provide the foundation for developing interventions that address the multitude of factors that are necessary in the specific, context-related situation (Gamel, Grypdonck, Hengeveld et al., 2001; van Meijel, Gamel, van Swieten-Duijfjes et al., 2004). The findings from each study in this thesis – a descriptive quantitative method in study I, interpretative phenomenology in study II-III, and phenomenography in study IV – have been brought together and interpreted as a wholeness. This gave a deeper and more comprehensive understanding of the phenomena under study, i.e. ‘occurrence and experiences of eating problems and their consequences in the trajectory of care’. Several methodological considerations need to be addressed in order to evaluate the strengths and weaknesses of each study in the thesis. In the quantitative study (I), its validity and reliability needs to be scrutinized with regard to possibilities to generalize the findings and how well founded the conclusions are. In the qualitative studies (II-IV) the trustworthiness, i.e. the credibility, fittingness and auditability of the findings, needs to be addressed. Accordingly, in the following sections the reliability and validity of the quantitative chart review (I) will be discussed as well as the trustworthiness of the qualitative studies (II-IV).

Reliability and validity of the quantitative chart review

The data collection in study I was made using patient records, which means that documentation of past events constituted the database. Therefore, measurement errors concerning both poor reliability and validity were possible at several points. These errors may have occurred during the carers’ assessment

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of the patients’ problems and status, and/or documentation of collected data. Errors may also have occurred during the researchers’ extraction and interpretation of data (Aaronson & Burman, 1994; Donabedian, 1988; Trotti, 2000). To ensure validity and reliability in this study several actions were taken. When developing the audit instrument, scientific literature in the area as well as experts in clinical nutrition and radiation oncology contributed to the content. This means that the audit instrument was built on what experts consider important. The reliability was studied by means of an observer agreement test with a very good result (cf. Cohen, 1968; Landis & Koch, 1977). The possibilities to generalize the findings are limited since the sample size decreased due to death or recurrence of the disease between the different occasions for data collection and only 32 of the original 50 patients were left after one year. As in many other studies using documentation as a data base (Ehnfors & Smedby, 1993; Ehrenberg & Ehnfors, 2001; Trotti, 2000), the documentation was inconsistent during the trajectory of care, which stresses the need to view the findings with caution. Nevertheless, since there was a clear pattern and trends could be followed in the documentation (cf. Polit & Beck, 2004) with regard to eating problems, weight loss, medical treatment, and nursing care, some areas for development and quality improvements of the care were identified (cf. Griffiths & Hutchings, 1999). Regarding weight loss there were no significant differences between the patients who were lost due to missing data, death or recurrence of the disease regarding sex, age, tumour location, tumour stage, and treatment modality including type of fractionation. Therefore, in spite of the small number of patients (n=20) for whom it was possible to calculate percentage of weight loss during the whole trajectory of care, the finding of the progressive weight loss after treatment can be considered to have some degree of generalizability. Attention should be taken with regard to the fact that the patients were not weighed with the same scale during the trajectory of care. However, the weight losses that occurred were so conspicuous that this might be overlooked.

Trustworthiness of the qualitative interview studies

In the qualitative studies (II-IV) considerations must be taken into account in relation to researcher credibility, which refers to the researchers’ personal or professional pre-understanding that may have affected the data collection, analysis or interpretation in a positive or negative way (Nyström & Dahlberg, 2001; Sandelowski, 1986). The starting point in this thesis was that it is not possible to completely leave out the researchers’ pre-understanding during any part of the research process. The authors’ belief is that some amount of pre-understanding is desirable in order to understand other peoples’ experiences. However, to be able to discover something new it was necessary to be aware of the existing

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preconceptions and “bridle” them (cf. Dahlberg & Dahlberg, 2004). This was carried out by means of a continuous challenge of our self-awareness and by using critical reflection throughout the whole process of inquiry. The goal was to produce as accurate as possible a description of the phenomena under study, without giving it meanings that were not supported by the experiences as told by the informants (cf. Benner, 1994; Heidegger, 1962). The truth value of a qualitative study can be both threatened and enhanced by the relationship established between the researcher and the informant (Sandelowski, 1986). The interviews in this study were carried out in a supportive but not therapeutic manner and the interviewer (ML) strived to be open and flexible. Whether the findings of these studies can be transferred to other groups or contexts (fittingness) also needs to be discussed. The intention was to describe the informants’ experiences by means of a phenomenological (II, III) and phenomenographic (IV) method in order to enhance our understanding of the phenomena under study. Benner (1994) has argued with regard to phenomenology that ‘the other’ can never be completely understood because human beings cannot be fully explicated. Likewise, Marton and Booth (1997) have claimed with regard to phenomenography that human experiences can never be described in its entirety; that there is no complete, final description of any phenomenon and that descriptions are always driven by the aims of the research. The sample size in our studies (II-IV) was chosen in order to achieve a profound understanding of the meaning hidden in the phenomenon under study and to capture various lived experiences to enhance both depth and variations in the findings (cf. Holloway & Wheeler, 1996; Streubert Speziale & Carpenter, 2003). Because of this nature of qualitative studies, we do not claim to have captured all possible various experiences or conceptions of the research issues under study. However, since the informants were chosen purposefully to be as different as possible, the findings can be assumed to fit other contexts as well (cf. Beck, 1993; Bowden, 1995; Sandelowski, 1986). There is of course the possibility that if informants from other oncology departments with other routines had been included, their experiences might have provided other dimensions of the phenomenon. Applicability value is anyhow considered to have been achieved since the findings demonstrate areas of improvement in clinical settings and raise questions for future research (cf. Benner, 1994). Interviews constitute informants’ recollection of the past and therefore there is a risk of bias owing to false or incomplete memory. Therefore, in order to provide as valid and reliable data as possible, the interviewer (ML) strived to vary the focus of the informants’ reflections on the research question. In order to further enhance credibility and auditability, interviews were performed twice (II, IV) and summaries were made during the interviews for clarification and verification by the informants (II-IV). Furthermore, in order to focus the interviews and keep the informants on track the topics of the interview was

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written on a paper and showed to the informant during the interview (III, IV). This measure appeared to help the informants to reflect upon their experiences and facilitated their verbalisation. A limitation in study IV was that all patients attended the same nurse clinic with only two specialist nurses employed. However, similarities in our findings with findings from other studies strengthen the credibility (Koinberg, Holmberg & Fridlund, 2002; Moore et al., 2002; Pålsson & Norberg, 1995). The study would have yet gained methodological advantages if the patients had attended different nurse clinics. The lack of almost no negative experiences of the nurse clinic may be explained by the fact that attending the clinic was voluntary. Consequently, the informants had probably a positive opinion about the care provided from the beginning. Patients with a negative attitude beforehand might have changed the findings.

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Conclusions

• Eating problems/causes to eating problems were common among the patients before radiotherapy treatment and at the end they were documented for every patient. For a majority of the patients eating problems and their causes were also found after one year. Patients started to lose weight early during radiotherapy treatment and the weight loss continued during the year after treatment. Therefore, assessment, treatment and evaluation of eating problems and their causes should be carried out before treatment and thereafter continuously during the whole trajectory of care before, during and after radiotherapy treatment.

• Eating problems have a physical and an emotional dimension, which show a circular and reciprocal relationship, as decreased ability to chew and swallow causes diminished will and desire to eat, and decreased will and desire to eat make it harder to overcome physical difficulties in chewing and swallowing. This demonstrates the necessity of considering eating problems in a broad perspective in which psychosocial interventions are included in addition to interventions addressing physical symptoms.

• The consequences of eating problems comprise the whole person as they are physical, psychological, social, and existential. Therefore, the care of patients with head and neck cancer experiencing eating problems needs to focus on the individuality and wholeness of each patient, and the care must focus on the patients’ multitude of needs.

• The multidisciplinary and fragmentised care entailed distressing periods of waiting during the trajectory of care, which drained the patients of their strength. During these periods of waiting the patients were often left to handle their problems themselves, without support from the health-care system. The patients’ needs of information and support must be anticipated and assessed continuously throughout the trajectory of care. It is vital that health care professionals recognise that the completion of treatment represents the beginning of a new uncertain period for many patients.

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• Since documentation is essential for communicating patient status and responses to given care, accurate and thorough documentation is necessary to ensure that adequate information about the patients’ nutritional problems can be transferred during the trajectory of care.

• The supportive nursing care clinic could meet head and neck cancer patients’ needs of safety and security, knowledge, care and support both concerning practical measures related to the disease and its treatment, and emotional needs during the whole trajectory of care. The clinic was especially important before and after completion of treatment when no other regular contacts in the health care system existed. It is concluded that this way of organising the care can contribute to these patients’ health and well-being.

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Future research

Future studies are needed that further explore the period after completion of radiotherapy, both the nearest months but also in a longer perspective after some or several years. A prospective study would render the possibility to address the severity of problems as well as a possibility to gain more complete data. In addition, intervention studies are needed to provide optimal clinical guidelines for nursing care of patients treated with radiotherapy for head and neck cancer. Also more qualitative studies of nurse clinics are essential in order to verify and deepen the findings of this study. This should be carried out with a purposeful sampling of nurse clinics in addition to a purposeful sampling of patients. Furthermore, evaluative, experimental studies comparing regular care and supportive nursing care clinics would be valuable to acquire a more comprehensive view of the significance of this way of organizing the care for this specific group of patients. Future studies are also needed to elucidate the situation of head and neck cancer patients treated with chemotherapy, brachytherapy, and surgery.

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Acknowledgements

I wish to express my sincere gratitude to the patients, who so generously shared their experiences. Associate professor Elsy Athlin, my excellent main supervisor, for sharing your knowledge and wisdom with me and for showing me the way. Thank you for believing in me from the start, your enthusiasm, endless support and commitment, your constructive criticism and for making the writing of a thesis such an exciting and joyful event. Birgitta Hedelin, PhD, my supervisor, for commitment, careful guidance and for sharing your knowledge in qualitative methods, for always seeing new possible interpretations and for challenging my thoughts. Inger Johansson, PhD, my supervisor, for your interest and support, constructive suggestions and especially for your patience with me regarding the statistics. Jeanette Palm and Ellinor Larsen for excellent and patient language revisions. Annelie Ekberg-Andersson for invaluable help with the references. Camilla Paulsson and Tomas Ljunggren for help with the computer and in making the figures. Britt-Inger Thäng for all kinds of administrative help. Lena Wollarz, Siw Jansson, Ann-Britt Pettersson, and Kerstin Kruse, for their contribution to the data collection. Johan Reizenstein, for valuable help in data collection and discussions regarding head and neck cancer and its treatment. Bengt Gustavsson, for statistical help. My fellow PhD students, Fia, Mona, Carina, Reidun, Kaisa, Ingrid, Bente, Monica, Mia, Catarina, Kristina, and Patrice for their friendship over the years and for their interest and valuable comments at the seminars. Kaisa Bjuresäter and Siv Andersson, for being my friends and the best nurses and role models there are. Cecilia Olsson for friendship, encouragement and support. My mother Gunnel, for always supporting me, for all practical help with the children and housekeeping during the years and especially during the final phase of this work. I would not have made it without you. My father Gunnar for believing in me and for teaching me that nothing is as enjoyable as gardening. My husband Roger, for your endless patience during these years, for your unlimited love, and for sharing my dreams. I love you. To our beloved children Sarah, Agnes and Henrik for making me remember what life really is about. For financial support, the County Council of Värmland, Sweden; the Swedish Association of Health Professionals; and Karlstad University.

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Örebro University Hospital. (2006). Head and neck cancer registry. Retrieved 060202

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Appendix 1

Audit instrument (study I)

Demographic and clinical data These variables included sex, age, marital status, working status, tumour location, tumour type, tumour stage (TNM-system), and treatment description. Eating problems and their causes These variables included eating problems and causes related to disease or treatment and were organized as a check-list and dichotomized as present/not present in the documentation. When appropriate, a combination was noted. Eating problems were defined as chewing and/or swallowing difficulties (Norberg, Athlin, & Winblad, 1987) e.g. recorded as “disability to eat normal food”. Causes of eating problems were defined as pain, loss of appetite, nausea, taste changes, mouth dryness and thick and ropy saliva. When the documentation was unclear and it was not evident whether it was referring to eating problems per se or a cause of eating problems e.g. “inability to eat enough” this was noted as undefined eating problems. Oral health problems This variable was dichotomized as present/not present in the documentation. When present the following alternatives were noted; normal oral mucosa, mucositis, or fungal infection and. When appropriate, a combination was noted. When not present the alternative no documentation was noted. Ability to eat This variable was caught by documentation of dietary consistency, which illuminates the patients’ ability to eat. The variable was dichotomized as present/not present and noted when present as either: normal diet, purées, liquidised diet, or inability to eat.

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Elimination problems This variable was dichotomized as present/not present. When present the alternatives constipation and diarrhoea were noted. Variables related to nutritional changes These variables included: height (for the purpose of calculating BMI), usual and pre-treatment weight, weight changes, and laboratory values of serum albumin, haemoglobin, and electrolytes. Height and weight was noted as actual values. Percentage weight change compared to pre-treatment weight was calculated at each occasion of measurement. The laboratory values were dichotomized and noted as taken/not taken. Audited nutritional interventions These variables included dietary supplements, enteral nutrition (EN), total parenteral nutrition (TPN) and prescribed pharmaceuticals such as mouth rinses, analgesics and antifungals, which were dichotomized and noted as prescribed/not prescribed. Dietary advice, information and education according to adjustments of food consistency and mouth care were noted as yes/no. Food recording and calculation of energy requirements were noted as present/not present as was also the case with support from the nursing staff at meals and with mouth care. Other information It was also noted as yes/no whether oral or written information was given according to treatment and side-effects, and accomplished treatments. Context of care This variable had three alternatives: home, patient hotel or hospital ward.

Karlstad University StudiesISSN 1403-8099

ISBN 91-7063-038-0

Faculty of Social and Life Sciences Department of Nursing

DISSertatIoN

Karlstad University Studies2006:7

Maria Larsson

eating problems in patients with head and neck cancer

treated with radiotherapy

Needs, problems and support during the trajectory of care

Maria Larsson E

ating problems in patients w

ith head and neck cancer treated with radiotherapy

eating problems in patients with head and neck cancer

treated with radiotherapy

Head and neck cancer is a physically and emotionally devastating disease. these cancer forms have a profound impact on the most fundamental activities of the patients’ daily life such as the ability to speak, breath, eat and drink, and socialize. even though treat-ment of head and neck cancer differs worldwide, the majority of patients are treated with radiotherapy or surgery, either as single modality or in combination. Sometimes brachytherapy or chemotherapy are given as well. therefore, multidisciplinary care is needed that requires coordinated interventions of several different health care profes-sionals during the trajectory of care. there is a lack of studies exploring the occurrence of eating problems in head and neck cancer patients treated with radiotherapy, and these patients’ nutritional situation over a longer period of time, from diagnosis, during treat-ment, and throughout the rehabilitation period. Furthermore, few studies have focused on these patients’ own experiences of having eating problems and few studies identify adequate nursing interventions to deal with these problems during the trajectory of care. this thesis is an attempt to contribute to the knowledge and understanding of these patients’ experiences, situation and needs in daily life regarding these issues during the whole trajectory of care. I hope that the findings of this thesis will contribute to the development of a high quality of care for this vulnerable group of patients.