· Web viewTonsil: 60%, Tongue: 30% Glottis: 10% Treatment: RT+CT: 90% RT: 10% Time since treatment (weeks) 0-12: 90% 13-24: 0% 25-36: 10% Semi-structured interviews (face-to …

The impact of home enteral feeding on the daily lives of people with head and neck cancer: A

metasynthesis of qualitative studies

Thomas A, Sowerbutts AM and Burden ST

Address for correspondence

Abigayil Thomas - Advanced Home Enteral Feeding Dietitian

Wirral Community Health and Care NHS Foundation Trust, Victoria Central Health Centre, Mill

Lane, Wallasey, Wirral, CH44 5UF

0151 604 7271

[email protected]

Key words

Home enteral feeding

Head and neck cancer

Feeding tube

Daily life

Impact

Authors’ contribution

A Thomas: lead author; undertook systematic review

AM Sowerbutts: supported with searches, data extraction, data synthesis, GRADE-CERQual

assessment, drafting and proof reading

S Burden: academic supervisor, proof reading and advised on methods

Conflict of interest statement and sources of funding

The author has identified no conflicts of interest. This systematic review was funded by The

Collaboration for Leadership in Applied Health and Care.

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mailto:[email protected]

Abstract

Introduction:

Home enteral feeding (HEF) may have a wider impact on peoples’ daily lives beyond influencing

their nutritional and clinical status. This metasynthesis aimed to determine the impact of HEF on

peoples’ daily lives.

Methods:

Qualitative studies were included with adults, diagnosed with head and neck cancer who had

finished their cancer treatment, with a feeding tube in place. Medline, PubMed and Cinahl were

searched (August 2009 to August 2019). Thematic synthesis was conducted to interpret findings

from the included studies. The ‘Confidence in the Evidence from Reviews of Qualitative research’

(GRADE-CERQual) approach was used to assess the level of confidence associated with each

review finding.

Results:

Seven qualitative studies met the eligibility criteria. Four overarching themes were identified. ‘Loss

of life as they once knew it’ encompassed loss of normality. ‘Developing personal coping strategies

works towards restoring a sense of normality’ encapsulated active adjustment and acceptance of the

feeding tube. ‘Navigating the hurdles when transitioning back to eating’ comprised the trials and

tribulations of returning to oral intake. Overall participants recognised that they could not have

managed without the feeding tube and this is encapsulated in ‘Feeding tube valued’.

Conclusion:

In many cases, initial feelings of change and loss as a result of HEF were replaced with

empowerment, adaptation and acceptance following a period of adjustment. Despite the challenges

associated with HEF, participants acknowledged its purpose as being functional as well as

reassuring. Future research should explore barriers and facilitators to self-management and patient

empowerment amongst those receiving HEF.

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Introduction

Malnutrition is a major concern in people with head and neck cancer, with up to 80% suffering

significant weight loss during treatment(1-2). Enteral feeding is often indicated if they are unable to

meet their nutritional requirements orally(3). It can reduce weight loss both during and after

treatment for head and neck cancer, reduce treatment interruptions and nutrition-related hospital

admissions(4-5). Enteral feeding is often used in these patients to support longer-term nutritional

requirements in the community setting(6-9).

Despite the potential for home enteral feeding (HEF) to positively impact on patients’ nutritional

and clinical status, living with HEF can constitute an additional burden(10-12). Quantitative studies

have found that people with head and neck cancer on HEF report poorer quality of life compared to

those who have never had HEF or those who have had a feeding tube removed(13-17). Furthermore,

previous quantitative studies have found that HEF can negatively impact on social eating(18), social

functioning(13-14), daily activities(19, 13-14) and relationships(14). There is however a lack of agreement

between quantitative studies on the extent to which HEF impacts on peoples’ daily lives. For

example, one cohort study(15) found that HEF did not impact on socialising, whereas two cross-

sectional studies identified that 22-44% of participants found HEF to negatively impact on their

family or social life(14,19).

As the impact of HEF can vary day-to-day and week-to-week restricting participants’ responses to a

single answer on a questionnaire can be difficult to interpret and of limited value(20). Having set

questions with pre-defined options may have missed some aspects of the HEF experience(21).

Knowing how often a HEF issue occurs or knowing whether an issue is ‘very much’ or ‘a bit’ of a

problem, as reported in the quantitative studies, does not provide an understanding of why

participants perceive this as a problem or what this problem means to participants.

Use of qualitative methodology facilitates an in-depth exploration of the impact of HEF by allowing

participants to provide open and detailed responses on their entire HEF experience(22). Participants

have greater freedom in their responses to discuss areas of importance to them(23). Investigating the

daily impact of HEF amongst people with head and neck cancer would aid clinicians in supporting

an ever-growing cohort of people by facilitating holistic, individualised and patient-centred care(24-

25). Additionally, having a greater appreciation of the impact of HEF would facilitate the

development of coping strategies and initiatives to better support this patient group.

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The current evidence-base lacks a systematic review that focuses on qualitative literature.

Therefore, we have conducted a metasynthesis of qualitative studies, and aimed to determine what

impact HEF has on the daily lives of adults following treatment for head and neck cancer.

Methods

The systematic review protocol was registered on the PROSPERO database on 14th November 2017

(Registration Number: CRD42017079632), although the inclusion criteria have since been amended

to solely include qualitative studies. As discussed above, qualitative studies were felt to provide a

richer, more patient-centred understanding of the lived HEF experience(22). This systematic review

is reported in line with the Preferred Reporting Items for Systematic Reviews and Meta-analyses

(PRISMA) guidelines(26).

Searches

The PICO framework was used to determine a comprehensive search strategy (Figure-1)(27). Full

search strategies are in the supplementary material. Inclusion criteria were adults, with a diagnosis

of head and neck cancer who received curative or palliative treatment, with a feeding tube in place

during and following their cancer treatment, and utilising a qualitative study design. Studies were

excluded if they did not meet the inclusion criteria, were dated prior to August 2009 or were not

reported in English. Studies including participants receiving HEF and oral nutrition were included if

findings related to those receiving HEF could be identified.

Changes in clinical practice and advancements in technologies associated with enteral feeding over

time meant that it was appropriate to exclude studies more than ten years old(3, 28). The impact of

HEF may be specific to people with head and neck cancer due to the specificity of cancer treatment

and subsequent side-effects(29). Studies were therefore restricted to those including people with this

diagnosis. Studies including people receiving palliative care were included to reflect clinical

practice.

Databases searched included Medline (via the Ovid platform), PubMed and Cinahl (via the

Healthcare Databases Advanced Search platform). Date ranges for each of the searches comprised

August 2009 to August 2019. Reference and citation lists were also searched. No limits were placed

on publication status.

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Study selection and data extraction

Two researchers independently screened studies based on their title and abstract. Full articles were

then accessed for studies deemed eligible based on title and abstract screening. Full articles were

independently reviewed by two researchers to assess eligibility. The researchers were not blinded.

Data extraction was initially undertaken by a single researcher (AT) and the data was tabulated

(Table-2 supplementary material). The second researcher (AMS) checked data extraction tables by

cross-referencing with data in the original studies. Data extraction tables were piloted.

The outcome of interest was the experience or impact of HEF, and impact included physical,

psychological or social impact. Experience or impact indicators were not specified a priori. This

was because there is not a gold-standard measurement to determine impact or experience in this

patient group.

Data synthesis

The metasynthesis aimed to analyse and interpret the findings of the included studies to generate further insights(30). Firstly, the following data were extracted: participant quotations (first-order interpretations), the authors’ interpretations of findings (second-order interpretations), and descriptive information on the research context(31). Analysis of first-order and second-order interpretations across all eligible studies resulted in the generation of new sub-themes and overarching themes (third-order interpretations)(31).

A constant comparison technique was used to develop third-order interpretations with each study being analysed in turn(31). Moving through subsequent

studies and comparing to previously analysed studies, similar first-order and second-order

constructs were grouped together to generate new sub-themes (third-order interpretations)(31). New

or divergent data was also added to the data analysis table. Overarching themes linked similar sub-

themes together. Despite this, contrasting accounts were viewed with equal importance to accounts

which showed similarities(30). The data synthesis table is provided in the supplementary material

(Table-3).

The researchers recognised that third-order interpretations were influenced by both the first-order

and second-order constructs available to them, as well as their own underlying assumptions,

perspectives and experiences(32). AT generated the sub-themes and overarching themes, which

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AMS checked against data from the original studies. AT and AMS then discussed and agreed the

sub-themes and overarching themes.

GRADE-CerQual

The ‘Confidence in the Evidence from Reviews of Qualitative research’ (GRADE-CERQual)

approach was used to assess the level of confidence associated with each finding from the

metasynthesis(33). GRADE-CERQual provides a transparent and structured method for reviewing

findings from metasyntheses, and has undergone rigorous testing and refining through a consensus

approach(33). Methodological limitations were assessed using the CASP critical appraisal tool for

qualitative studies as this is the tool suggested in the GRADE-CERQual literature(34). Full GRADE-

CERQual methods are described elsewhere(33-38). AT and AMS conducted the GRADE-CERQual

assessment (supplementary material Tables 4-9).

Results

Study Characteristics

Seven qualitative studies met the eligibility criteria (Figure-2)(39-45). Many studies lacked member

checking(39-40,43,45), method triangulation(39-44), multiple coders(39,45), or a detailed description of data

analysis(40,42,43,45) . The completed CASP tool can be found in the supplementary material (Table-4).

Study characteristics are provided in Table-2 (supplementary material). Four studies were located in

Britain(39,42,44-45), and the remaining studies were based in Sweden(41,43) or Canada(40). Five were

single-centre studies(39-43). The number of included participants ranged from 6 to 135. Participants in

all studies had finished treatment for head and neck cancer. Five studies utilised qualitative

interviews(40-44), one study undertook a focus group(39), and one study undertook observations and

semi-structured interviews(45). A range of methodologies were drawn upon: Thematic Analysis(42),

Ethnography(45), Inductive Qualitative Content Analysis(41) and Interpretative Phenomenological

Analysis(44). Three studies did not specify the methodology used(39-40, 43).

Overarching Themes

Four overarching themes were identified: ‘Loss of life as they once knew it’, ‘Developing personal

coping strategies works towards restoring a sense of normality’, ‘Navigating the hurdles when

transitioning back to eating’ and ‘Feeding tube valued’. Each overarching theme and sub-theme will

now be described.

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Loss of life as they once knew it

Admitting defeat

Participants initially struggled to accept the feeding tube. Many participants reluctantly used it as a

last resort when side-effects of the treatment made eating unbearable or when they became

concerned with weight loss. Participants now saw eating as a relentless battle or chore(39-45): ‘You’ve

taken away the pleasure aspect of food. Food then just becomes fuel and not a leisure or pleasure

activity’(H)(39). In some cases, the initiation of tube feeding lead to feelings of failure as using the

feeding tube was seen as an admission of defeat(40,42,43,45):

‘...And then I finally gave in and consented to have the tube placed in. I got to the point

where I couldn’t eat liquids…and certainly not solid foods, that was out of the

question’(003)(40).

Confined by the feeding tube

Some participants felt physically trapped due to the time taken for feeding and tube maintenance(40-

44): ‘There is work with it. It’s not a plug-in, play operation’(004)(40). Some lived in constant fear of

accidentally damaging the feeding tube. As a result participants set self-imposed restrictions on

activities deemed potentially hazardous including physical work, taking public transport and

exercise(41-42,44). These participants struggled to see life beyond the feeding tube and could never

fully forget its presence: ‘I'm always aware that the [NG] tube is there, you know and what could

happen…while I'm asleep I could actually pull the tube straight out…’(M6)(42).

Some physically confined themselves and limited daily activities in case they experienced feed

related side-effects: ‘I’ve kept certain people away from the house because of being sick…so I

didn’t want people to see me’(Connor)(44).

Distancing of relationships

Prior to their illness mealtimes were seen as a way of developing and maintaining relationships(39,44-

45). This was disrupted by HEF(39,44-45). Many felt that they could not integrate with others at meal

times as a result of difficulties with eating or because they struggled watching others eat(39,44-45). This

lead to them feeling emotionally distanced from others: ‘Very difficult to get a girlfriend…so much

relationship building revolves around eating and drinking…the idea of having sexual encounters

with a new person is an obstacle’(H)(39).

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Relationships could be strained if family or friends did not understand the challenges participants

faced when eating(44):

‘People say, do you want another one, and I say, no, I’m alright thanks. Are you sure? And

you say, yeah. And I am. People can’t understand you don’t need to have a load’(Frank)(44).

Additionally, some participants saw the feeding tube as a physical barrier hindering relationships

and intimacy(39,42,44): ‘He couldn't cuddle me [Husband]’(F1)(42).

Perceived social stigma

Some participants felt the feeding tube highlighted their sense of being different and made them feel

marginalised(39-40,42,44). Some were anxious about receiving negative reactions as they felt other

people would perceive their feeding tube as not normal. In some cases, anxiety and embarrassment

about others’ perceptions prevented them from undertaking usual daily activities(39-42,44):

‘I went shopping once, and a little one, he were about three, “Oh look mummy, that lady's

got a worm out of her mouth, out of her nose and she's got a hole in her neck”…It were

upsetting, I couldn't wait to get home’(F1)(42).

Developing personal coping strategies works towards restoring a sense of normality

Restoring a sense of agency

Here participants actively made decisions and took positive steps to regain control over the feeding

tube and feeding regimen. Being empowered meant they were able to successfully fit HEF around

their daily lives and no longer felt confined by HEF.

Firstly, participants adjusted the method of feed administration to facilitate integration of the

feeding regimen into their daily life(40,42-44): ‘I preferred to have the syringe because it was a lot

faster. I could feed myself within 10 minutes and be done’(013)(40). Einarsson et al (2019) described

how the feeding backpack gave greater freedom by enabling one participant to feed when out of the

home.

Secondly, some actively adjusted their hobbies, socialising patterns or mealtime habits around HEF

so they could partake in these activities(39-40,44-45):

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‘Like my wife's thing with me when she has breakfast, I have two bottles of feed. And then

we both have lunch in the afternoon. And then when she has dinner, I have two bottles of

feed. So I'm living with her like a normal person…’(Nicholas)(44).

Thirdly, some participants described taking the decision to opt for a G-tube rather than a nasogastric

feeding tube. The discreet nature of G-tubes enabled participants to feel more confident in

undertaking their usual daily activities and socialising(40-42): ‘It didn’t bother me at all. As I said, it

wasn’t visible at all unless you wear a tight shirt or whatever’(014)(40).

Finally, participants took active steps to achieve what they felt was the appropriate level of support

from family, friends and the public(39-40,42,44). Support gave many participants additional confidence

and feelings of security, empowering them to socialise and conduct daily activities(39-40,44).

Contrastingly, being able to manage HEF independently was important for some participants to

cope with the perceived burden of HEF: ‘I could have had [support ], but I didn't, you know, I just

did it on my own, I just wanted some time on me own to work it out’(M5)(42).

Acceptance

Participants became accustomed to the feeding tube over time and in many cases came to see the

feeding tube and its associated challenges as their new, accepted normal(40-41,44): ‘It’s part of

me’(Francesca; Lilian; Frank)(44). Creating this new normal was important for participants and

enabled them to cope better with HEF(42,44): ‘I wanted it done [G-tube]…and then I could start living

again…I go to the cafe now, to t'pub, play bingo’(F1)(42).

Navigating the hurdles when transitioning back to eating

Learning to eat again

The transition back to oral eating was a gradual process and involved participants having to learn to

eat again(39-40,42-43). Many were anxious as they could not know for certain which foods they would

tolerate before trying them. Learning to eat again was therefore seen as a daunting process of

experimentation:

‘That’s the way I feel yes, [trial and error]. You just, try this and if it won’t work, it won’t

work. And 80% of the foods you try at first do not work so, you just don’t give up…’(007)(40).

Home enteral feeding as a barrier

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Some recognised that having the feeding tube meant their nutritional requirements were met so

made them less motivated to progress with oral intake(39-40,44-45). They had become dependent on the

feeding tube: ‘Although I want to eat, I want to eat normally and I would love to be able to eat I feel

like I am tending to rely on the PEG and used the PEG as a, rather than and force to eat

normally…’(A)(39).

Patterson et al (2015) described the struggles participants faced when trying to fit eating around the

enteral feed. If not well timed the combination of food and enteral feed could lead to bloating(45).

Feeding tube valued

Feeding tube is a lifeline

Many participants felt the feeding tube was a necessity as it had kept them alive(39-40,42): ‘Well it

saved my life … but think it was absolutely marvellous really’(E)(39). For others the feeding tube was

a support mechanism and provided much-needed security and reassurance(39-40,42). Participants

gained comfort knowing that the feeding tube was there should they come to need the tube: ‘Gives

you hope already, right? It’s like a security blanket. Your ace in the hole sort of thing that if all

goes sour, I still have my life support system here’(004)(40).

Regaining control over body weight and treatment side effects

Here tube feeding had taken the pressure off eating, and was seen by some participants as a positive

step in taking back control of their nutritional status and treatment-related side effects(39-43):

‘My tongue was so sensitive it was like eating raw chillies…my gums were all white, my

tongue was white, anything that touched it, it was just stinging…I thought “no I'm not gonna

do this anymore, I'm gonna do what xxxx said and use the tube”’(M4)(42).

Internal conflict

Many participants described tube feeding as being both a positive and a negative experience, but

overall they recognised that they could not have managed without the feeding tube(40,42,44): ‘My

initial reaction was, no (laughs), but I thought about it and, probably a blessing in disguise, right?

Anyone who goes through that needs to have the tube’(015)(40).

Divergent Data

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A further concept found by Ehrsson et al (2015) was how the feeding tube can reduce participants’

self-esteem due to them perceiving the feeding tube as malodorous and unhygienic.

Williams et al (2018) found additional ways in which participants coped with HEF. Firstly,

participants compared themselves to others in a worse situation: ‘Without being disrespectful I don't

know how an older person might've coped with it’(M2). Secondly, participants hoped they would

not need to use the feeding tube: ‘Dr X advised that at least 80% of patients do have to use it

[gastrostomy], I thought I may be in the lucky 20% but I wasn't’(M1)(42).

GRADE-CERQual assessment

Overall there was moderate confidence in most of the review findings (Table-1). ‘Admitting defeat’

and ‘Regaining control over body weight or treatment side effects’ were assigned low-to-moderate

confidence due to methodological limitations of the studies contributing to these review findings.

There was high confidence in the sub-theme ‘Internal conflict’.

Discussion

Discussion of review findings

Many participants initially felt they had lost control over their daily lives as their lives were now

defined by HEF. Mourning the loss of one’s previous life and self when coping with change has

been previously identified in the literature(46-51). We found HEF initially imposed considerable

restrictions which lead to a perceived loss of freedom and independence. Feeling confined by

limited horizons is mirrored in the literature on living with long-term conditions(46-48). As we found,

during the initial stages of coping with change patients tend to focus on how they are different to

others and perceived societal norms, and this can give rise to feelings of exclusion and

marginalisation(46-47). Acknowledgement and understanding of the emotional vulnerability of

patients during the initiation of HEF is fundamental to ameliorate feelings of defeat, fear, isolation

and embarrassment.

Despite HEF initially causing considerable disruption, many undergo a journey of adjusting to HEF

by actively making decisions and taking positive steps to regain control over their daily lives.

Adaptation encompassed the transition to a state in which their life was no longer dominated by

HEF. In accordance with our findings, the wider literature on living with a long-term condition also

recognises the importance of finding ways to enable participation and inclusion through integrating

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with others and continuing to engage in valued activities(46-48,52,53). This may involve negotiating new

ways of participating according to current circumstances and abilities(46-47).

Enabling patients to feel empowered to make these positive steps is crucial(46). Support networks can

be reassuring and provide much-needed feelings of worth, security and self-esteem, which are

fundamental in harnessing the confidence to make positive changes(46-48,53). Furthermore, possessing

certain personality traits such as optimism, resilience, a solution-based mentality or high residual

self-esteem have all been found to encourage adjustment to change(54-55). Understanding barriers and

facilitators to the development of coping strategies is fundamental to support patients adjusting to

HEF.

We found that many participants coped better with the changes associated with HEF if they felt that

they had created a new, accepted normal. Being in acceptance with life and oneself was a key

coping mechanism. The desire for restoring a sense of normality is well-recognised in the literature

on those coping with change(46-47,52,53). In line with our findings, seeing the change become routine

and part of daily life can encourage acceptance(46,56). Reaching acceptance of one’s current

circumstances is crucial as this can increase an individual’s perceived quality of life(57-60).

Acknowledging and supporting patients during their journey to acceptance can therefore enable

them to cope better with the life changes associated with HEF.

The benefits of HEF amongst people with a diagnosis of head and neck cancer have been reported

previously and include reducing weight loss, treatment interruptions and nutrition-related hospital

admissions(4-5). However, we found HEF to have positive implications beyond influencing

participants’ nutritional and clinical status. HEF provided much-needed reassurance and security at

a time of substantial uncertainty and difficulties around eating. Furthermore, participants felt

empowered as HEF had enabled them to regain control over their body weight and nutritional

provision. Despite its perceived burden, overall participants viewed HEF as saving their life and

something that they could not have lived without. This finding is also reported in the wider

literature on enteral feeding(12,19,61-63). When making the decision around feeding tube placement, it is

important that patients are aware of the emotional benefits of HEF so that they can make a fully

informed decision.

As we found, feeding tube dependency has also been reported in previous literature(64-66). Setting

expectations and encouraging patients to progress with oral intake as soon as able may reduce their

reliance on the feeding tube. However, additional methods to facilitate tube weaning in this patient

group is an area that requires further exploration.

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Confidence in the evidence

The review findings are likely to be a reasonable representation of the phenomenon of interest as

there was moderate confidence in most of the findings(33). Confidence was mainly downgraded due

to methodological limitations of the included studies(34). Many studies did not draw upon member

checking(39-40,43,45), method triangulation(39-44) or multiple coders(39,45), or lacked a detailed description

of data analysis(40,42,43,45) (supplementary material table-4). Only Thomas et al (2019) had considered

researcher influence and showed evidence of reflexivity. Data adequacy was of concern for Ehrsson

et al (2015) and Einarsson et al (2019) as semi-structured interviews were not audio-recorded, data

saturation was not discussed and there were limited participant quotations(37).

Relevance was of concern for Patterson et al (2015) and Einarsson et al (2019) as their primary

focus comprised swallowing and eating respectively(38). Mayre-Chilton et al (2011) may have

inadvertently included more highly functioning patients as seven participants withdrew due to being

too unwell to attend the focus group. Additionally, many studies excluded those with a palliative

diagnosis which is not reflective of clinical practice(40,41-43,45).

Appraisal of the metasynthesis

Eligibility criteria were pre-defined, unambiguous and well-justified. Searches were comprehensive

through searching multiple databases, reference lists and citations, and placing no limits on

publication status. Hand-searching of journals and contacting key authors may have however

increased retrieval of additional studies(67-68).

Further strengths comprised the utilisation of two researchers throughout screening, data extraction,

data synthesis and the GRADE-CERQual assessment. The researchers were not blinded, although

there is no consensus on whether this is necessary(69). Synthesis methods were appropriate based on

the type of studies that were included, and an audit trail for the generation of third-order

interpretations is provided (supplementary material). Overall, multiple steps were put in place to

enhance rigour and increase the robustness of the methodology used in this metasynthesis(35,70).

Conclusion

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Living with HEF has practical, social and emotional implications amongst people with a diagnosis

of head and neck cancer. When supporting these patients, a ‘biopsychosocial’ approach is therefore

needed to facilitate holistic, patient-centred care(46). Appreciating the challenges faced and advising

on coping mechanisms can support patients in their adaptation to create a new, accepted normal.

Practical advice on how to adjust feeding around daily activities and socialising can restore

inclusion and participation, which in turn encourages empowerment and increased freedom.

Many steps were taken to promote rigorous methods in the metasynthesis, however caution should

be taken for the review findings associated with low-to-moderate confidence. Future research

should explore barriers and facilitators to self-management and patient empowerment amongst

those receiving HEF.

Transparency declaration

The lead author affirms that this manuscript is an honest, accurate, and transparent account of the

study being reported. The reporting of this work is compliant with PRISMA guidelines. The lead

author affirms that no important aspects of the study have been omitted and that any discrepancies

from the study as planned have been explained.

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Tables and Figures

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Figure-2: PRISMA flowchart

Figure-1: PICo framework used to determine the search strategy

P (Population):

- Adults, people with head and neck cancer, people who are tube fed

I (Phenomenon of Interest):

-The impact of home enteral feeding in this participant group which may include physical,

psychological or social impact

Co (Context):

- Any country and any healthcare setting (acute or community based)

- Finished cancer treatment

- Studies more than 10 years old not included (earlier than August 2009)

- Only studies in the English language included

- Published and unpublished studies included

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1234

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(Liberati et al., 2009)

Studies included in qualitative synthesis

(n = 7)

Full-text articles excluded (n = 14)

Reasons:

Wrong intervention n = 6

Wrong study design n = 7

Wrong patient population n = 1

Full-text articles assessed for eligibility

(n = 21)

Records excluded(n = 4711)

Records screened by abstract(n = 4732)

Records after duplicates removed(n = 4732)

Additional records identified through other sources

(n = 3)

Records identified through database searching

(n = 6081)

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Table-1: GRADE-CERQual evidence profile

Summary of Review Finding

Studies contributing to the review finding

Methodological limitations

Coherence Adequacy Relevance GRADE-CERQual assessment of confidence in the evidence


Admitting defeat

EhrssonEinarssonKwongMayre-ChiltonPattersonThomasWilliams

Moderate-to- serious concerns

No or very minor concerns

Minor concerns Minor concerns Low-to-moderate confidence


EhrssonEinarssonKwongThomasWilliams

Moderate concerns No or very minor concerns

Minor concerns Minor concerns Moderate confidence


Mayre-ChiltonPattersonThomasWilliams




EhrssonKwongMayre-ChiltonThomasWilliams



Developing personal coping strategies works towards restoring a sense of normality


EinarssonKwongMayre-ChiltonPattersonThomasWilliams



Acceptance EhrssonKwongThomas



1265

WilliamsNavigating the hurdles when transitioning back to eating


EinarssonKwongMayre-ChiltonWilliams




KwongMayre-ChiltonPattersonThomas



Feeding tube valuedFeeding tube is a lifeline

KwongMayre-ChiltonWilliams



Regaining control over body weight or treatment side effects

EhrssonEinarssonKwongMayre-ChiltonWilliams

Moderate-to-serious concerns


Minor concerns Minor concerns Low-to- moderate confidence

Internal conflict

KwongThomasWilliams

Minor concerns No or very minor concerns

Minor concerns Minor concerns High confidence

126612671268126912701271127212731274127512761277127812791280

Supplementary material

Search strategies

Search terms for Medline:

((artificial feeding (text term)) OR (artificial hydration (text term)) OR (enteral nutrition (MeSH)) OR (gastrointestinal intubation (MeSH)) OR (percutaneous feeding (text term)) OR (gastrostomy (MeSH)) OR (peg (text term)) OR (stomach tube (text term)) OR (artificial nutrition (text term)) OR (tube (text term)) OR (enteric feeding (text term)) OR (feeding tube (text term)) OR (gastroenteral (text term)) OR (gastrointestinal endoscopy (MeSH)) OR (nasoenteral tube (text term)) OR (nasojejunal tube (text term)) OR (gastric feeding (text term)) OR (ng (text term)) OR (rig (text term)) OR (home enteral feeding (text tem)) OR (home enteral nutrition (text term)) OR (tube feeding (text term)) OR (percutaneous endoscopic gastrostomy (text term)) OR (balloon gastrostomy (text term)) OR (nasogastric feeding (text term)))

AND

((head and neck cancer (text term)) OR (head and neck neoplasms (MeSH)) OR (pharyngeal neoplasms (MeSH)) OR (laryngeal neoplasms (MeSH)) OR (aerodigestive cancer (text term)) OR (otorhinolaryngologic neoplasms (MeSH))) OR ((head OR neck OR oropharynx* OR pharynx* OR larynx* OR throat OR ear OR glotti* or nasopharyn* or hypopharyn* (all text terms)) AND (cancer* OR carcinoma* OR tumor* OR tumour* OR neoplasm* OR malignan* OR metasta* (all text terms)))

Limits: Adults, August 2009 to August 2019 (to present), used focused searches (not exploded)

Search terms for Cinahl (Field search - All text, Text terms):

((artificial feeding) OR (artificial hydration) OR (enteral nutrition) OR (gastrointestinal intubation) OR (percutaneous feeding) OR (gastrostomy) OR (peg) OR (stomach tube) OR (artificial nutrition) OR (tube) OR (enteric feeding) OR (feeding tube) OR (gastroenteral) OR (gastrointestinal endoscopy) OR (nasoenteral tube) OR (nasojejunal tube) OR (gastric feeding) OR (ng) OR (rig) OR (home enteral feeding) OR (home enteral nutrition) OR (tube feeding) OR (percutaneous endoscopic gastrostomy) OR (balloon gastrostomy) OR (nasogastric feeding))

AND

((head and neck cancer) OR (head and neck neoplasms) OR (pharyngeal neoplasms) OR (laryngeal neoplasms) OR (aerodigestive cancer) OR (otorhinolaryngologic neoplasms)) OR ((head OR neck OR oropharynx* OR pharynx* OR larynx* OR throat OR ear OR glotti* or nasopharyn* or hypopharyn*) AND (cancer* OR carcinoma* OR tumor* OR tumour* OR neoplasm* OR malignan* OR metasta*))

Limits: English, All adults, August 2009 to August 2019 (to present)

Search terms for PubMed (All field, Text terms):

((artificial feeding) OR (artificial hydration) OR (enteral nutrition) OR (gastrointestinal intubation) OR (percutaneous feeding) OR (gastrostomy) OR (peg) OR (stomach tube) OR (artificial nutrition) OR (tube) OR (enteric feeding) OR (feeding tube) OR (gastroenteral) OR (gastrointestinal endoscopy) OR (nasoenteral tube) OR (nasojejunal tube) OR (gastric feeding) OR (ng) OR (rig) OR (home enteral feeding) OR (home enteral nutrition) OR (tube feeding) OR (percutaneous endoscopic gastrostomy) OR (balloon gastrostomy) OR (nasogastric feeding))

AND

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((head and neck cancer) OR (head and neck neoplasms) OR (pharyngeal neoplasms) OR (laryngeal neoplasms) OR (aerodigestive cancer) OR (otorhinolaryngologic neoplasms)) OR ((head OR neck OR oropharynx* OR pharynx* OR larynx* OR throat OR ear OR glotti* or nasopharyn* or hypopharyn*) AND (cancer* OR carcinoma* OR tumor* OR tumour* OR neoplasm* OR malignan* OR metasta*))

Limits: August 2009 to August 2019 (to present), Adults 19+, Humans and English Language.

1320132113221323

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Authors (year)

Setting Participants Tube context Head and neck cancer context

Treatment context

Data collection Methodology

Mayre-Chilton et al (2011)

England, Hospital (single-centre)

N=6 patientsMales: 67%Mean age: 55 years (males), 64 years (females). Included palliative patients

Tube status:Removed: 33%In place: 67%Duration: ≥3 monthsType: NR

Staging:1-2: 50%, 3-4: 33%,Tx: 17%Location:Oropharynx: 33.3%Larynx: 33.3% Other: 33%

Treatment: NRTime since treatment: NR

Focus group NR

Kwong et al (2014)

Canada,Cancer Centre (single-centre)

N=15Males: 80%Mean age: 60 yearsExcluded palliative patients

Tube status:Removed: 100%Duration (months):1–6: 60%,7–12: 33%,13–18: 7%Type:PEG: 100%

Staging:1-2: 100%Location:Oro-/naso-pharynx: 20%Throat: 27% Tongue: 27%Tonsil: 20%Lymph node: 7%

Treatment:RT: 7%RT+CT: 87%RT+CT+surgery: 7%Time since treatment: NR

Semi-structured interviews (telephone/face-to-face)

NR

Ehrsson et al (2015)

Sweden, Hospital (single-centre)

N=38 (3 months post-treatment)Males: 68%Mean age: 62 yearsExcluded palliative patients

Tube status 3 months post-treatment:Removed: 50%In place: 50%Duration of tube being in place 3 months post-treatment: NRType:PEG: 61%NGT: 39%

Staging:1-2: 26%, 3-4: 64%,Unknown: 10%Location:Oral: 20% Oropharynx: 37%Naso/hypo-pharynx: 12%Larynx: 12%Other: 19%

Treatment:RT: 39%RT+surgery: 29%Surgery+CT+RT or CT+RT: 32%Time since treatment: 3 months

SEIQoL-EN interview(face-to-face/telephone)

Inductive qualitative content analysis

Patterson et England, N=11 (observations) Tube status: Staging: NR Treatment: Ethnographic Observations: ethnography

Table-2: Overview of studies614

al (2015) 2 hospitals N=6 (interviews)Males: 86%Mean age: 63 years

Removed: NRIn place: 43%Duration: NRType:All gastrostomies

Location: NR RT+CT: 81%RT: 19%Time since treatment: 3-18 months

observations and semi-structured interviews

Interviews: NR

Williams et al (2018)

England,Tertiary centre (single-centre)

N=10Males: 80%Median age: 54 yearsExcluded palliative patients

Tube status:Removed: 20%In place: 80%Duration: NRType:RIG: 60%PEG: 10%NGT: 30%

Staging:1-2: 10%3-4: 90%Location:Tonsil: 60%, Tongue: 30%Glottis: 10%

Treatment:RT+CT: 90%RT: 10%Time since treatment (weeks)0-12: 90%13-24: 0%25-36: 10%

Semi-structured interviews (face-to-face)

Thematic Analysis

Einarsson et al (2019)

Sweden, Hospital (single-centre)

N=135Males: 74%Median Age: 62 yearsExcluded palliative patients

Tube status: NRDuration: NRType: NR

Staging:1-2: 31%3-4: 69%Location:Oral: 19% Oropharynx: 36%Larynx: 15%Naso/hypo-pharynx: 8%Salivary glands/sinuses: 14%Other/unknown primary: 9%

Treatment:RT: 36%Surgery: 3%RT+surgery: 29%CT+RT+surgery: 14%Time since treatment (weeks):0: 95%, 1: 86%12: 26%, 72: 73%52: 81%, 104: 56%

Thematically structured face-to face/telephone interviews (at multiple times points)

NR

Thomas et al (2019)

England, (2 NHS trusts)

N=15Males: 67%Mean age: 61.3 yearsIncluded palliative patients

Tube status:In place: 100%Duration (months):<1 to ≤6: 67%>6 to ≤12: 20%>12 to ≤18: 6.7%>18 to ≤24: 0>24 to ≤30: 6.7%

Staging:NRLocation:NR

Treatment:NRTime since treatment (months):<1 to ≤6: 67%>6 to ≤12: 20%>12 to ≤18: 6.7%

Semi-structured interviews (face-to-face)

Interpretative phenomenological analysis

Type:BGT: 87%Button: 13%

>18 to ≤24: 0>24 to ≤30: 6.7%

Key: N: total number of participants; NR: Not reported; RIG: radiologically inserted gastrostomy; PEG: percutaneous endoscopic gastrostomy; NGT: nasogastric feeding tube; RT: radiotherapy; CT: chemotherapy; SEIQoL-EN: Schedule for the Evaluation of Individual Quality of Life -Enteral Nutrition questionnaire; BGT: balloon gastrostomy tube.

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Third Order Interpretations Study Second Order Interpretations First Order InterpretationsOverarching theme

Sub-theme


Admitting defeat

Einarsson Overarching theme: Food alterations and nutritional support - both pros and consAuthor’s comments: ‘Most of the patients mentioned that they could not support themselves with food alone either temporarily or permanently, and the use of different kinds of oral nutritional support and/or tube feeding was described by the patients. It was problematic to start eating orally again. A few patients stated that they would have refused to use tube feeding if they had been suggested this kind of nutritional support. For them, a nasogastric tube was a sign of giving up’.

Patient 8: ‘For a long time I could not tolerate the tube feedingformula; however, it is better now and I do not vomit anymore. I do not eat food orally because I do not want anything in my mouth as it hurts so much, but also because it is disgusting to eat’.

Williams Overarching theme: The battle to eatAuthor’s comments: ‘Some saw HEF as giving in to the battle to eat. They had underestimated how difficult maintaining oral intake would be during treatment. They described a battle and worryover physical symptoms (weight loss, dysphagia, pain and taste disturbances) as the key reason for accepting the recommendation to commence EF during treatment. Some participant responses indicated that they viewed starting EF as an admission of defeat, describing feelings of disappointment and failure’.

Overarching theme: Restricted lifeSub-theme: Missing eatingAuthor’s comments: ‘Missing eating and craving for food was a particular challenge for many participants. This was reinforced at family meal-times, when preparing food for other members of the family and when exposed to food on television and in magazines’.

M7: ‘I battled and tried [with eating], but I was just failing miserably…yeah if you've set your mind to “well I'm not having that [nasogastric tube] ” and you do, well then you've failed haven't you then…I didn't want it doing but I had to accept that…my weight's going to drop to a dangerous level, so I had to do it’.M4: “My tongue was so sensitive it was like eating raw chillies…my gums were all white, my tongue was white, anything that touched it, it was just stinging…I thought“no I'm not gonna do this anymore, I'm gonna do what xxxx said and use the tube”.

Kwong Overarching theme: Transition from the PEG tube to an oral diet

[004] ‘The natural eating process which is enjoyable mostly turns into a chore’.Table-3: Data Synthesis

Overarching theme: Choices around PEG tube insertion.

[003] ‘I was at the point where I didn’t have a choice but to go onto the tube . . . they had to build me up again before I could go back into the radiation treatment because I was in a pretty weakstate at that time’.[006] ‘I had already lost about 25, 30 pounds before I arrived at the doctor’s because I was having trouble eating. [003] I lost a huge amount of weight, I looked like a skeleton. And then I finally gave in and consented to have the tube placed in’.[003] ‘I got to the point where I couldn’t eat liquids . . . andcertainly not solid foods, that was out of the question’.

Mayre-Chilton

Overarching theme: Gastrostomy tube dependencyAuthor’s comments: ‘Overall, the data highlight the many influential factors, such as taste, smell, lack of saliva, pain, length of time taken to eat and psychological concerns, that the tube feeding helps them to cope with (eating). Both groups expressed many possible reasons that prevented them from weaning off the gastrostomy tube onto normal foods’.

F: ‘I was quite, I was quite nervous about it, having my swallow stuff again … There was a short period where I didn’t like the idea of eating. I hadn’t used my mouth… and it was kind of awkward and what if and weird thoughts going through my head. And that sort of stayed’H: ‘you’ve taken away the pleasure aspect of food. Food then just becomes fuel and not a leisure or pleasure activity’A: ‘I would have eaten less than quarter of it and that’s frustrating because, my dinner is going cold’I: ‘No, I don’t really; don’t really enjoy it, eating any more’D: ‘Listen I ain’t got no saliva, no smell, no taste’A: ‘though I find that I am eating far, far more slowly’

Ehrsson Sub-themes: I cannot eat. I miss eating orally. It is hard. I cannot chew (30% NG, 29% PEG)

Participant quotations not provided

Thomas Overarching theme: Deviation from the normSub-theme: Emotional impactAuthor’s comments: ‘Participants were disappointed and saddened by the losses entailed with their disease’.

‘All I wanted was a cup of tea’ (Jean, 54 years)

Patterson Overarching theme: Late post-treatmentAuthor’s comments: ‘Patients 7 and 17 retained their feeding tube because they felt eating was too difficult’.



Kwong Overarching theme: Experiences of daily living with a PEG tube.Author’s comments: ‘There was much discussion

[004]: ‘There is work with it. It’s not a plug-in, play operation’[006]: ‘I mean it wasn’t painful, just more of a pain in the neck’

around the work associated with the maintenance of the tube’.

Williams Overarching theme: Restricted lifeSub-theme: Enteral feeding regimen restrictionsAuthor’s comments: ‘For some participants, the enteral feeding regimen was particularly restrictive and time consuming’.

Sub-theme: Fear (tube displacement)

Overarching theme: Restricted lifeSub-theme: Activities of daily living

M1: ‘The only drawback from using [G-tube], that I feel is the amount of time it takes to absorb the right amount… So to sit on there for ten hours is very onerous…I found the ten hours quite tedious’.M2: ‘The only downside, I would say is, is the volume of stuff you've got to get in… Lansoprazole tablets, anti-sickness tablets, another chemo anti-sickness tablet, three types of pain killers…then you've got to get some milkshakes down, so you've got that lot three times a day which is…twenty one syringes, plus you've got another twelve syringes of food, that's twenty three syringes, you should really have some water in between each…plus then you've got some normal hydration you want…it is very time consuming’.

M6: ‘I'm always aware that the [NG] tube is there, you know and what could happen…while I'm asleep I could actually pull the tube straight out…one of the reasons that I would think about, and suggest to other people that they take the stomach one’.

F2: ‘Going back to work…it involves heavy lifting…and I don't know whether with that [G-tube]… I think this [G-tube]…is going to be a draw-back having my job’

Ehrsson Sub-theme 1: It takes lots of time. To take all three bags in one day is hard to manage (30% NG; 43% PEG)Sub-theme 2: It is negative because the tube is inthe way. The tube disturbs my sleep. I feel confined to the tube when feeding (11% NG, 57% PEG).


Einarsson Overarching theme: Food alterations and nutritional support - both pros and consAuthor’s comments: ‘Some patients described how they felt trapped during tube feeding and it was described as time‐consuming. To go away on a trip was described as problematic, however, because of all the things they needed to bring with them to be able to tube feed’.


Thomas Overarching theme: Deviation from the normSub-theme: Physical impactAuthor’s comments: ‘Disturbed sleep led to increased tiredness and restricted daytime activities’.

Sub-theme: Emotional ImpactThere was a sense of feeling chained and trappedA number of participants were fearful about inadvertently triggering tube-related complications or feed-related side effects.

Sub-theme: Social impactAuthor’s comments: ‘Social activities outside the home were curtailed as a result of the time tube feeding took and anxieties regarding the feeding tube being damaged. Feed-related side effects including nausea and vomiting, also contributed to reduced social interactions’.

‘As soon as I finish feeding, normally it’s like daytime 6 o’clock . . . I lie down flat and go to sleep in the morning, yeah. Yes, definitely, I lose hours on the daytime activity then’ (Nicholas, 60 years)‘To get anywhere ready to go out, you have to make sure you’ve had your feed, you’ve had your medicine, whatever, you’re done, and then you’re alright. You have a three-hour window, so you can go out and get back’ (Arnold, 65 years)

‘My total life is like taken over by this pump feeding at night’(Nicholas, 60 years).‘There’s always the fear that something might go wrong and it might leak and that’s quite a big fear’(Emily, 71 years)

‘Getting on a bus wasn’t really an option in case you were scared it might fall out or get pulled out or you fell over’ (Jean, 54 years)‘I’ve kept certain people away from the house because of being sick. . . so I didn’t want people to see me’ (Connor, 66 years)


Mayre-Chilton

Overarching theme: Differences in perceptions between the patients and care-givers

H: ‘very difficult to get a girlfriend … so much relationshipbuilding revolves around eating and drinking…the idea of having sexual encounters with a new person is an obstacle’I: ‘I can’t sit down with people to eat a meal because it takes me too long … it could be a couple of hours’I: ‘I don’t enjoy looking at people wolf their food down and enjoying it’D: ‘Last night she cooked me dinner, She asked me can you taste this? I said ‘‘No’

Williams Overarching theme: Restricted lifeSub-theme: Relationships‘This participant talked about how her NGT had affected her relationship with her grand-childand how, later in her treatment, her G-tube affected

F1: ‘He couldn't cuddle me [Husband]’.

intimacy in her relationship with her husband (n=1)’

Overarching theme: Fear M8: ‘Even though it's probably ok…I wouldn't go to a gym, I wouldn't play football, I wouldn't have a knock about with my friends, you know because I'd be scared’.

Thomas Overarching theme: Deviation from the normSub-theme: Social impactAuthor’s comments: ‘Being tube fed led to participants feeling socially excluded in many circumstances. Tube feeding impacted on participants’ relationships as they could no longer take part in shared activities if they involved food. Friends and family could feel guilty about eating in front of the participant. Alternatively, they may not understand that the participant could not eat reinforcing feelings of being different. Participants felt distanced from others at mealtimes as they could not eat. To deal with this, some would physically isolate themselves at meal times’.

Sub-theme: Emotional impact‘Many participants also described how HEF had resulted in a loss of social or household identity. Loss of identity gave rise to feelings of exclusion and frustration’.

Sub-theme: Emotional impactAuthor’s comments: ‘A number of participants were fearful about

‘My husband and I would quite often, on the way home from work, not have dinner at home, we’d eat on the way in . . . I haven’t done that now for . . . well, yeah . . . it’s changed our life, the way we live. I try not to think about it. Sometimes it does bother me’ (Lilian, 61 years)‘They feel terrible because they’re eating a big meal and I’m eating a mouthful, especially when I’ve cooked it as well’ (Jean, 54 years)‘People say, do you want another one, and I say, no, I’m alright thanks. Are you sure? And you say, yeah. And I am. People can’t understand you don’t need to have a load’ (Frank, 61 years)‘The thing I miss most is sitting down to a meal with other people, because I can’t partake of the meal, so I tend to go into a different room and feed myself with feed. So I miss that social aspect of eating ’ (Emily, 71 years)‘It took a long while for him (husband) to understand that I was poorly, and I couldn’t eat. He’d still come in and say what are we having for tea? It took a long, long time. In fact, we fell out over it, big time’ (Jean, 54 years)

‘I used to do a lot of DIY and quite a bit of gardening. . . but constantly wife will be saying, oh your tube, your tube, you can’t lift that’ (Christopher, 70 years)

‘And I’m always aware of it being there or if anybodyhugs me, I’m always careful of it’ (Connor, 66 years)

inadvertently triggering tube-related complications or feed-related side effects’.

Patterson Overarching theme: Early post-treatmentAuthor’s comments: ‘For patient 20, this meant he missed football trips, as a prematch drink was part of the ritual’.



Kwong Overarching Theme: Experiences of daily living with the PEG tubeAuthor’s comments: ‘For others, there was stigma associated with the tube’.

[004] ‘Well you don’t exactly want to go out to restaurants and sit with your fellows or whoever, pull off to the side, pull the tube out and start injecting the material’.

Williams Overarching theme: Restricted lifeSub-theme: Going outAuthor’s comments: ‘Additionally participants with NGTs experienced anxiety over public reaction which influenced their confidence in socialising. Participants with NGTs described the reaction they received from members of the public, commonly describing people (often children)staring’.

F1: ‘I didn't want to go out at all [NGT] …I wouldn't go to the pub, I wouldn't go to the cafe, I wouldn't go shopping…I like me bingo on a Thursday and I stopped going there’.F1: ‘I went shopping once, and a little one, he were about three [years old], “Oh look mummy, that lady's got a worm out of her mouth, out of her nose and she's got ahole in her neck”…It were upsetting, I couldn't wait to get home’.M2: ‘You're going out…on a Saturday night, there's one hundred and fifty people in a pub and you've got a tube sticking out of your nose, it just wasn't for me’.

Ehrsson Sub-theme: I feel embarrassed to have theNGT in my nose (within social limitations sub-category) (67% NGT)Sub-theme: Feeling unhygienic. I feel unhygienic-it smells bad (11% NGT; 43% PEG)


Thomas Overarching theme: Deviation from the normSub-theme: Social impactAuthor’s comments: ‘Many participants felt embarrassed exposing their tube in front of others due to what they might think’.

‘I used to do a lot of swimming . . . oh, I don’t think people would like to see that hanging down in the pool and stuff like that’ (Harry, 67 years).

Mayre-Chilton

Overarching theme: Differences in perceptions between the patients and care-givers

H: ‘Visible disabilities are always going to put people off more quickly. It’s not something you can disguise’’

Developing personal coping strategies works


Kwong Overarching theme: Experiences of daily living with the PEG tubeAuthor’s comments: ‘Participants liked the option of either bolus feeding via syringe or gravity drip depending on their lifestyle and preference.

[013] ‘I preferred to have the syringe because it was a lot faster. I could feed myself within 10 minutes and be done.[005] The wife was feeding me and she suggested a bottle that they have . . . and you can hang it on an IV pole. . . And it just flows in naturally. . . then we hooked it on a nail in the kitchen

towards restoring a sense of normality

Participants learned how to adapt to the tube and discovered strategies that worked well for them. Participants thought being honest, comfortable, and inclusive of others made interactions easier. All participants commented on how they received support with daily activities associated with the tube from family members/ healthcare professionals’.

and that was much better’.‘[005] There was no real problems at dinner times and stuff. We had a couple of big dinners and the kids would come in and itwas just routine other than grandpa has his sitting on the couch with a bottle of stuff going in’.[014] ‘It didn’t bother me at all. As I said, it wasn’t visible at all unless you wear a tight shirt or whatever’.[011] ‘So it’s not a big deal with me, you know? I mean I didn’t make an issue of it. And people, I’d say I feel very strongly if you tell people what’s going on they’re very helpful and they’re very accommodating to me’.

Williams Overarching theme: Restricted lifeSub-theme: Enteral feeding regimen restrictionsAuthor’s comments: ‘Participants gave consideration to bolus and overnight pump regimens to reduce the burden of the EF regimen’.

Overarching themes: Coping mechanismsSub-theme: Personal controlAuthor’s comments: ‘Personal control appeared to have been significant in how participants coped with having an EF tube and with EF. Participants coped well if they had control over the choice of EF tube; the timing of the commencement of EF; and their EF regimen and tube care.

Overarching theme: Coping mechanismsSub-theme: Living a normal lifeAuthor’s comments: ‘Those with G-tubes reported this was possible due to the privacy and discreetness offered by the G-tube’.

Overarching theme: Restricted lifeSub-theme: Going out/body imageAuthor’s comments: ‘The experiences of those participants with G-tube were in stark contrast to

Participant quotations not provided specifically for these themes.

F1: ‘I wanted it done [G-tube]…and then I could start living again…I go to the cafe now, to t'pub, play bingo’.M1: ‘You've got a little bit of hardware on the outside with the tube and I found…then it doesn't impinge on anything, it doesn't protrude as such, you can't see it really from theoutside, it's not as though it's obvious…so that's the dignity part I suppose’.F1: ‘Everybody used to stare at me which made me feel uncomfortable more, so that's why I wanted it in me belly’.

M2: ‘If somebody asked me about it [RIG]…, I would just tell them my personal experience…I continued working in my garage, going shopping, going out to the pub, going out for a meal even though you know I didn't eat much, we were still going out, I didn't want a tube sticking out me nose’.

the experiences of participants with NGTs, reporting that discreet nature of the G-tube actually enabled them to continue to go out’.

Overarching theme: Receiving supportAuthor’s comments: ‘Attempts to reduce burden both on family members and on healthcare professionals were used as a coping mechanism by some participants. Only one participant described a reliance on her husband to support her with EF. Other participants involved family members as a way of supporting that family member’.

M2: ‘When I went into the treatment…I decided I wanted to lead as normal a life as possible, for as long as I could until I couldn't…so we do a lot of socialising…and I thought “if I have the RIG fitted…it's not visible by anybody, nobody will know it's there, if I have a tube sticking out of me nose, everybody's gonna know it's there’

M1: ‘I wouldn't be reliant on anybody…everybody's busy, my family's busy and I didn't want them messing about…luckily I was able to do it all myself’.M5: ‘I could have had [Support with enteral feed administration], but I didn't, you know, I just did it on my own, I just wanted some time on me own to work it out’.M6: ‘[my] wife likes to have a go now and again she says she feel lonely, feels left out’.F1; ‘We got the kids involved… For them so they can understand and all. XXX he's ten…like the machine on a night-time he'd set it all up for me…everything’.

Einarsson Overarching theme: Food alterations and nutritional support - bothpros and consAuthor’s comments: ‘He expressed relief whenhe finally received the equipment (feeding backpack) because it made it possible for him to be outdoors while he was feeding’.

Patient 8: ‘For a long time I could not tolerate the tube feedingformula; however, it is better now and I do not vomitanymore’..

Mayre-Chilton

Overarching theme: Strategies to cope with the feeding tubeSub-themes: Daily routine; Lifestyle and social activitiesAuthor’s comments: ‘Both patients and care-givers demonstrated the development of strategies to help them cope with changes in their daily lives as a result of the gastrostomy tube. In the case of the patients, most positive outlooks and strategies were observed in accepting decisions, as well as in the areas of daily, lifestyle and social activities’

Overarching theme: Support networkAuthor’s comments: ‘The patients and

H: ‘It’s made me more dependent on using my car because that can be my mobile dining room’I:‘I’ll have a soup with people cos, I can eat thatat a decent pace’

A: ‘the after care because once the treatment is over it’s like that’s it you are on your own now’

care-givers expressed a positive impact on approaching the hospital multidisciplinary team, especially those patients receiving radiotherapy who attended the weekly treatment multidisciplinary clinic, where they had access to the registrar, dietitian, nurse and other professionals in one clinic. Some patients expressed a lack of active care after their treatment and discharge into the community, which had a negative impact on them’.

Overarching theme: Strategies to cope with the feeding tube.

F: ‘being able to contact my hospital … I personally prefer the fact that I can contact the actual dietitian team… she was the first contact I had when I came ….She was ... quite good with the PEG’

H: ‘buy more CDs, books… they are my substitutes’

Patterson Overarching theme: Food alterations and nutritional support-both pros and consAuthor’s comments: ‘Patient 7 went to the pub as before, despite having profound swallowing difficulties’.

Participant quotation not provided

Thomas Overarching theme: Regaining control leading to empowermentAuthor’s comments: ‘Regaining independence and control facilitated HEF adaptation. Empowerment was achieved through knowledge and skill development, increasing flexibility in the feeding regimen and minimising side-effects related to the feed. Participants’ sense of freedom was increased by introducing flexibility in the feeding location and being comfortable to feed in front of family and friends’.

Overarching theme: Creating a new normalAuthor’s comments: ‘Adapting daily

‘My stomach was too tiny, everything that I was trying to fit in with the drinks (bolused) just bloated me all the time, but now it seems settled, especially with the pump feed’ (Vera, 48 years)‘I’ll take it (feed) with me . . . so it doesn’t matter where I go, as long as I have my fresh water to flush it’ (Adam, 68 years)‘Rather than the district nurse, they said, we’ll be here between 8 and 5, you were stuck in the house. But we’d rather do it ourselves, then you can manage your time better’ (Arnold, 65 years)‘It was one of my brothers, and I just said can I borrow a cup and explained what I was doing, and I just did it where I was in the living room. They understood. I didn’t feel embarrassed or anything’ (Craig, 64 years)

‘Now I’m starting to be able to eat a bit more, then I would have, say, soup with everybody rather than

activities around HEF worked towards restoring a feeling of normality and inclusion. Some had learnt to adapt food choices when eating out, others had adapted to using the feeding tube around others to join in with meal times’.

Overarching theme: External modifiers of the home enteral feeding experienceAuthor’s comments: ‘Support from family, friends or the public was encouraging and reassuring for participants. Support positively impacted on the HEF experience and facilitated HEF adaptation. By contrast, negative input from family, friends or the public hindered HEF adaptation’

have a feed, and stuff like that . . . yeah, I enjoy it . . . socialising and being part of human life again I think’ (Emily, 71 years)‘Like my wife’s thing with me when she has breakfast, I have two bottles of feed. And then we both have lunch in the afternoon. And then when she has dinner, I have two bottles of feed. So I’m living with her like a normal person. We’re both eating the same food, the similar food at least, and sitting on the table eating together’ (Nicholas, 60 years)

‘A bit strange at first because they used to say would you like a cup of tea, Mum, but now it’s like, would you like a flush, Mum?’ (Vera, 48 years)‘It took a long while for him (husband) to understand that I was poorly, and I couldn’t eat. He’d still come in and say what are we having for tea? It took a long, long time. In fact, we fell out over it, big time’ (Jean, 54 years)

Acceptance Kwong Overarching theme: Experiences of daily living with the PEG tubeAuthor’s comments: ‘Participants described gradually becoming accustomed to living with the tube.To some, there was a sense of normalization; the tube became part of their routine’.

[001] ‘When you get along with the G-tube for months, it’s just part of your life’.[003] ‘But anyway, as far as living with the tube goes, I didn’t find any real problems with it apart from the odd spill’.

Ehrsson Sub-theme: I have learned to live with tubeFeeding (56% NG; 64% PEG)


Thomas Overarching theme: Creating a new normalAuthor’s comments: ‘Some participants felt adapted to HEF by becoming accustomed to the feeding tube and the feeding regimenover time’.

‘It’s part of me’ (Francesca, 62 years; Lilian, 61 years; Frank, 61 years).

Williams Overarching theme: Coping mechanismsSub-theme: Living a normal lifeAuthor’s comments: ‘Participants coped better if

F1: ‘I wanted it done [G-tube]…and then I could start living again…I go to the cafe now, to t'pub, play bingo’.M1: ‘You've got a little bit of hardware on the outside with the

they were able to continue living a normal life. tube and I found…then it doesn't impinge on anything, it doesn't protrude as such, you can't see it really from theoutside, it's not as though it's obvious…so that's the dignity part I suppose’.



Kwong Overarching theme: Transition from the PEG tube to an oral dietAuthor’s comments: ‘Transitioning was described as a gradual progression and a learning experience’.

[007] ‘I had to almost learn to eat again. I think that’s the word … learn to eat again ... ’Cause I couldn’t do it at first. I guess I felt like a baby’.[004] ‘The natural eating process which is enjoyable mostly turns into a chore’.[007] ‘That’s the way I feel yes, [trial and error]. You just, trythis and if it won’t work, it won’t work. And 80% of the foodsyou try at first do not work so, you just don’t give up. You justkeep trying something else, yup’.

Mayre-Chilton

Overarching theme: Gastrostomy tube dependencyAuthor’s comments: ‘Overall, the data highlight the many influential factors, such as taste, smell, lack of saliva, pain, length of time taken to eat and psychological concerns, that the tube feeding helps them to cope with (eating). Both groups expressed many possible reasons that prevented them from weaning off the gastrostomy tube onto normal foods’.

F: ‘I was quite, I was quite nervous about it, having my swallow stuff again … There was a short period where I didn’t like the idea of eating. I hadn’t used my mouth… and it was kind of awkward and what if and weird thoughts going through my head. And that sort of stayed’H: ‘you’ve taken away the pleasure aspect of food. Food then just becomes fuel and not a leisure or pleasure activity’A: ‘I would have eaten less than quarter of it and that’s frustrating because, my dinner is going cold’I: ‘No, I don’t really; don’t really enjoy it, eating any more’D: ‘Listen I ain’t got no saliva, no smell, no taste’F: ‘I had to learn how to eat’F: ‘determined not to live on milkshakes’A: ‘though I find that I am eating far, far more slowly’

Einarsson Overarching theme: Food alterations and nutritional support - both pros and consAuthor’s comments: ‘It was problematicto start eating orally again’.

Patient 8: ‘For a long time I could not tolerate the tube feedingformula; however, it is better now and I do not vomit anymore. I do not eat food orally because I do not want anything in my mouth as it hurts so much, but also because it is disgusting to eat’.

Williams Overarching theme: Restricted lifeSub-theme: Missed eatingAuthor’s comments: ‘Missing eating and craving for food was a particular challenge for many participants. This was reinforced at family meal-times, when preparing food for other members of

M7: ‘I keep watching programmes during the day on cooking, every time I see one I want to eat something’F2: ‘I just can't imagine never eating again, that bit's hard…I make my husband teas now…like yesterday…I made him a leek and potato pie and I thought ‘oh I could just right eat that’

the family and when exposed to food on television and in magazines’.


Mayre chilton

Overarching theme: Gastrostomy tube dependency

E: ‘I found getting back to eating, slightly difficult and I could have continued using the tube but I didn’t…. It is difficult the change back again afterwards to get back to eating normally’A: ‘although I want to eat, I want to eat normally and I would love to be able to eat I feel like I am tending to rely on the PEG and used the PEG as a, rather than and force to eat normally. I find it really difficult to force myself to eat’.A: ‘withdrawal from the PEG, … I may possibly be experiencingthat myself … I feel like I am tending to rely on the PEG’F: ‘I have plenty of stores in me it’s okay I don’t need to eat’.E: ‘it was the dietitian who persuaded me to come off and get eating again. Gradually, … so it didn’t take that long, but I used it’

Patterson Overarching theme: Late post-treatmentAuthor’s comments: ‘For those that were using a feeding tube in addition to eating, timing food was difficult as the tube feed tended to make them feel bloated. Patients 7 and 17 retained their feeding tube because they felt eating was too difficult’.

Participant quotations not provided.

Kwong Overarching Theme: Transition from the PEG tube to an oral dietAuthor’s comments: ‘Participants celebrated tube removal but, at the same time, were fearful of no longer being able to rely on the tube’.

[004] ‘Oh it’s a big relief to get rid of it. . . . It’s a bit of a, scare factor again ’cause you’re so reliant on it. How am I going to survive? What if I don’t get enough food intake?. . . It was a combination of celebration and fear and whatever else. . . .Yeah, you know, I looked forward to it. It was definitely an event and a landmark or milestone in your recovery and progressed towards, towards a normal life again’.[012] ‘So that saved me there. Took a while to get used to it and then I became so dependent on it’.

Thomas Overarching theme: Internal modifiers of the HEF experienceAuthor’s comments: ‘Internal conflict hindered HEF adaptation. Participants recognised that by taking the pressure off eating the feeding tube hindered their progress with oral intake’.

‘I don’t want porridge or something like thatbecause I’m fed as far as I can see’ (Francesca, 62years)

Feeding tube valued

Feeding tube is a lifeline

Kwong Overarching theme: Recognition of value of the PEG tube.

[013] ‘Going through the chemotherapy and having an upset stomach uh, smells and tastes were very strong to me and so

Author’s comments: ‘Participants often described the tube as having saved their lives. The PEG tube was also identified as some patients’ sole source of nutrition. The PEG tube was described as a vice, crutch, and friend. For some, there was a dependence on the tube. The PEG tube gave a sense of hope to participants’.

anything would put me off. . . . So the nice thing about that is you’re surpassing your taste buds and going right to your stomach. And boy, that made a big, big difference for mebecause it kept me alive’.[005] ‘You wanna live, you need the tube to survive. You gotta eat and that’s the only way you can eat’.[016] ‘Without it, how do you survive? I lost 53 pounds!’[012] ‘So that saved me there. Took a while to get used to it and then I became so dependent on it’.[004] ‘Gives you hope already, right? It’s like a securityblanket. Your ace in the hole sort of thing that if all goes sour,I still have my life support system here’.

Mayre-Chilton

Overarching theme: Recognition of survivalAuthor’s comments: ‘Overall, both groups expressed a positive impact for having the gastrostomy tube placed before any further cancer treatment because they recognised that they would not have survived without it’.

A: ‘The fact that I wouldn’t be able to, to survive without it, that never occurred to me’E: ‘Well it saved my life … but think it was absolutely marvellous really’A: ‘But if you didn’t have it for protection how would you have coped without it?’

Williams Overarching theme: Value of the tubeAuthor’s comments: ‘Participants valued their tubes in practical terms (nutrition, fluidand medication provision) and in supporting recovery. They also acknowledged the emotional/psychological benefits of an EF tubeincluding making life easier; providing a relief from worry and the pain of eating; and providing reassurance. Others found it easier to accept EF and viewed the tube as a necessity’

M8: ‘I'd have either one [G-tube or NGT] if anybody was starting from the beginning, don't say “no” to either because you will need one or the other…don't refuse, because you'll be stuck’.M4: ‘It's like everything else it's [G-tube] just a backup, it's like what they say on the TV “if you're going out in the snow and the weather always carry a spade in the back of the car, a blanket” because you don't know if you're ever going to need it…I don't regret having it [G-tube] put into my stomach because it could have been a life saver’.


Kwong Overarching theme: Recognition of value of the PEG tube.Author’s comments: ‘Participants also acknowledged that the PEG tube either stopped or reduced their weight loss as it provided them with an alternate means of obtaining nutrition. The tube was viewed as a functional benefit - equipment that helped participants manage side effects of cancer treatment. Initially, participants did not realize how difficult oral intake would become as treatment progressed.

[016] ‘Without it, how do you survive? I lost 53 pounds!’[011] ‘That’s one big benefit . . . it takes away your threat of choking’.[013] ‘Going through the chemotherapy and having an upset stomach uh, smells and tastes were very strong to me and so anything would put me off. . . . So the nice thing about that is you’re surpassing your taste buds and going right to your stomach. And boy, that made a big, big difference for mebecause it kept me alive’.[003] ‘I got to the point where I couldn’t eat liquids . . . and

There was discussion aboutparticipants feeling there was no choice in the matter; the tube was viewed as a necessity’.

certainly not solid foods, that was out of the question’.

Williams Overarching theme: Value of the tubeAuthor’s comments: ‘Participants valued their tubes in practical terms (nutrition, fluid and medication provision) and in supporting recovery. They also acknowledged the emotional/ psychological benefits of an EF tube including making life easier; providing a relief from worry and the pain of eating; and providing reassurance. They described a battle and worry over physical symptoms (weight loss, dysphagia, pain and tastedisturbances) as the key reason for accepting the recommendation to commence EF during treatment’.

M8: ‘Medication and food can go down, which was a big relief because I were losing weight…because I couldn't eat…and me weight's coming back up’.M5: ‘Getting me nourishment, well that's the main thing because they didn't want me to lose weight …keep me nourishment in to me to help me get better’.M2: ‘Just relief really that I'm getting something into me, you know nutrition, because if I didn't have this, I don't know, what would you do?’M4: ‘My tongue was so sensitive it was like eating raw chillies…my gums were all white, my tongue was white, anything that touched it, it was just stinging…I thought “no I'm not gonna do this anymore, I'm gonna do what xxxx said and use the tube’’.

Ehrsson Sub-theme: Maintaining and gaining weightPositive as I realize that I wouldhave lost weight without it (44% NGT, 36% PEG).Author’s comments: ‘They did not have to battle with each meal and to worry about not getting beverage and food, they received calories, and realized they would have lost body weight without it’.

Sub-theme: Nutritional comfort. It is positive. I do not have to panic about meals. I get nutrition without having to worry about notbeing able to swallow (67% NGT, 93% PEG).Author’s comments: ‘They did not have to battle with each meal and to worry about not getting beverage and food, they received calories, and realized they would have lost body weight without it’.

Participant quotations not reported.

Mayre-Chilton

Overarching theme: ‘Recognition of survival’ E: ‘very quickly I couldn’t swallow or anything becauseit was in my mouth that I had the treatment. So it was marvellous’.E: ‘very quickly I couldn’t swallow or anything’

D: ‘still can’t swallow anything’Einarsson Overarching theme: Food alterations and

nutritional support - both pros and consAuthor’s comments: ‘Others experienced tube feeding as a relief because they did not need to eat and drink orally’.

No participant quotations specifically related to this point.

Internal conflict

Kwong Overarching theme: Recognition of value of the PEG tube.Author’s comments: ‘Overall, the thoughts and feelings associated with the PEG tube can be described as a dichotomy. Participants referred to the PEG tube as something they had to have in order to endure their cancer and treatment experience. While viewed as a slight inconvenience, all participants recognized the value that the PEG tube held’.

[003] ‘Having the tube wasn’t a good experience, but it was a necessary experience’.[015] ‘My initial reaction was, no (laughs), but I thoughtabout it and, probably a blessing in disguise, right? Anyonewho goes through that needs to have the tube’.[013] ‘But no, other than that it was fine. There were no problems using it. I found it to be a little discomforting but you know a small price to pay for what it did for me’.

Williams Overarching theme: Value of the tubeAuthor’s comments: ‘Although most participants discussed restrictions in lifestyle caused by their EF tube, all recognised the value the EF tube offered. Because the value of the EF tube was recognised, all participants recommended that future patients have EF tubes placed if advised, with only one participant recommending the alternative tube (Gtube) to the one he had decided on (NGT). Some participant responses indicated that they viewed starting EF as an admission of defeat, describing feelings of disappointment and failure. In contrast, others found it easier to accept EF and viewed the tube as a necessity’.

No participant quotations specifically for this point.

Thomas Overarching theme: Internal modifiers of the HEF experienceAuthor’s comments: ‘Many participants recognised a conflict between the tube being a necessity and their perception of the feed being unnatural’.

‘a necessary evil’ (Christopher, 70 years; Lilian, 61 years).‘I am totally thankful, grateful, that I’ve gotit because it’s helping me, it’s helping me a lot, so you’vegot to be positive’ (Craig, 64 years).

Divergent data

Comparing to others/pre-treatment

Patterson Overarching theme: Early post-treatmentAuthor’s comments: ‘Patient 17 felt his eating and drinking symptoms were similar to those who

Patient 20: ‘what they say to you is you’re going to be very poorly and for a couple of weeks after, then things will startpicking up. Well two weeks after, then a month after and you

experienced pre-treatment, which led him to believe the radiotherapy had not been effective’.

think well I’m still not eating, it’s on your mind, am I lagging behind people? (Patient 20)

Comparing to others in a worse situation

Williams Overarching theme: Coping mechanismsSub-theme: Downward social comparison.Author’s comments: ‘Some participants appeared to use downward comparison as a coping strategy e comparing themselves to others whose problemswere worse than their own, enabling them to view their own situation in a more positive light’.

M1: ‘Elderly people may need help and support to even start the feeding process, where…I'm a bit younger, fairly mobile, reasonably fit, got a family around me…verylucky because I've seen some people here that come on their own, possibly feed themselves and if they are having to do that all on their own…isn't going to be very pleasant’M2: ‘Without being disrespectful I don't know how an older person might've coped with it [EF pump]…I could just go You Tube, I could have a look at it, I could go on the website, I knew there was a phone number there…but how somebody older would have coped with it I don't know’.

Hope Williams Overarching theme: Coping mechanismsSub-theme: Maintaining hopeAuthor’s comments: ‘Participants relied on hope as a coping mechanism at different points in treatment. Pre-treatment they hoped that they would be able to continue to maintain oral intake during treatment and would not require EF. When this hope was lost and they realised that they did require EF they did not cope well. Participantsdescribed hope that EF would be short-term and that they would resume normal eating’.

M1: ‘Dr X advised that at least 80% of patients do have to use it [gastrostomy], I thought I may be in the lucky 20% but I wasn't’.M7: ‘I just decided it wasn't going to happen [NGT insertion], and that's why, as you know I was very upset when I couldn't do that’.

Feeling unhygienic affecting self esteem

Ehrsson Overarching theme: LimitationsSub-theme: I feel unhygienic–it smells bad (11% NGT, 43% PEG)

No participant quotations provided.

Key: PEG: percutaneous endoscopic gastrostomy; NG/NGT: nasogastric feeding tube; HEF: home enteral feeding; EF: enteral feeding

Table-4: CASP critical appraisal tool

CASP Questions Ehrsson Einarsson Kwong Mayre-Chilton Patterson Thomas WilliamsWas there a clear statement of the aims of the research?

Yes Yes Yes Yes Yes Yes Yes

Is a qualitative methodology


635

636

appropriate?Was the research design appropriate to address the aims of the research?


Was the recruitment strategy appropriate to the aims of the research?

No: Palliative disease excluded

No: Recurrent/ palliative disease excluded; dropouts not discussed (n=31)

No: None had tube in place during study; palliative disease excluded

Yes: Purposive samplingNo: Only included those well enough to attend focus group

Yes: Purposive samplingNo: recurrent/ residual disease excluded

Yes: purposive sampling, sampling frame included, palliative disease included

Yes: Purposive samplingNo: palliative disease excluded

Was the data collected in a way that addressed the research issue?

Yes: Semi-structured interviewsNo: Not audio-recorded (written notes made); data saturation NR

Yes: Semi-structured InterviewsNo: Unclear how interview guide developed; interviews not audio-recorded (written notes made); data saturation NR

Yes: Semi-structured interviews; audio-recorded; transcribed verbatim; data saturation discussedNo: Unclear how interview guide developed

Yes: Focus groups; states how topics for focus grouped were developed; audio-recorded ; transcribed verbatimNo: Data saturation NR

Yes: Semi-structured interviews and observations; interview guide based on observations; interviews audio-recorded and transcribed verbatimNo: Data saturation NR

Yes: data saturation reached, semi-structured interviews, interview guide rationale described, audio-recorded and transcribed verbatim

Yes: Semi-structured interviews; audio-recorded; transcribed verbatim; states how interview guide developed, discussed data saturation

Has the relationship between the researcher and participants been adequately considered?

No No No: Author’s state ‘objective researcher’ and ‘neutral’ data analysis process (but participants chose interview setting)

No No: Role of researcher/context unknown

Yes: researcher’s theoretical orientation and reflexivity discussed

No: Researcher context unknown

Have ethical issues been taken into consideration?


Was the data analysis sufficiently rigorous?

Yes: Member checking (asked to verify statements, results unclear); multiple coders; detailed data analysisNo: No method triangulation. No audit trail for theme development

Yes: Multiple codersNo: No detailed description of analysis; no quotes for points related to HEF; no audit trail for theme development; no member checking; no method triangulation

Yes: Range of quotes used; multiple codersNo: No detailed description of analysis; no method triangulation; no audit trail for theme development; no member checking; no member checking

Yes: Range of quotes usedNo: No multiple coders, no member checking; no method triangulation; use of predetermined codes for analysis; no audit trail for theme development

Yes: Method triangulationNo: Not multiple coders;no member checking; not clear how amalgamated themes from observations and interviews;minimal quotes included

Yes: Range of participant quotations used, detailed description of analysis (with the provision of example tables); member checking conducted and findings reportedNo: Only sample of transcripts (n=5) were double coded; no method triangulation

Yes: Member checking (but did not give results); range of quotes used; multiple codersNo: No detailed description of analysis; no method triangulation; no audit trail for theme development

Is there a clear statement of findings?


Is the research valuable?


Key: n: number of participants; NR: not reported

Table-5: GRADE-CERQual evidence profile

Summary of Review Finding

Studies contributing to the review finding


Coherence Adequacy Relevance GRADE-CERQual assessment of confidence in the evidence

Explanation of GRADE-CERQual assessment

637

638

639

640

641

Loss of life as they once knew itAdmitting defeat

EhrssonEinarssonKwongMayre-ChiltonPattersonThomasWilliams

Moderate-to- serious concerns


Minor concerns

Minor concerns

Low-to-moderate confidence

Methodological limitations: serious concerns (n=2); moderate concerns (n=2); minor concerns (n=3). Coherence: review finding well supported with first and/or second order interpretations from the original dataAdequacy:7 studies (4 studies provided rich data)Relevance: indirectly relevant (n=2); partially relevant (n=2), directly relevant (n=3).


EhrssonEinarssonKwongThomasWilliams

Moderate concerns


Minor concerns

Minor concerns

Moderate confidence

Methodological limitations: serious concerns (n=2); minor concerns (n=3).Coherence: review finding well supported with first and/or second order interpretations from the original dataAdequacy: 5 studies (3 studies provided rich data)Relevance: indirectly relevant (n=1); partially relevant (n=2), directly relevant (n=2).



Moderate concerns


Minor concerns

Minor concerns

Moderate confidence

Methodological limitations: moderate concerns (n=2); minor concerns (n=2).Coherence: review finding well supported with first and/or second order interpretations from the original dataAdequacy: 4 studies (3 studies provided rich data)Relevance: indirectly relevant (n=1); partially relevant (n=1), directly relevant (n=2).


EhrssonKwongMayre-ChiltonThomasWilliams

Moderate concerns


Minor concerns

Minor concerns

Moderate confidence

Methodological limitations: serious concerns (n=1); moderate concerns (n=1); minor concerns (n=3).Coherence: review finding well supported with first and/or second order interpretations from the original dataAdequacy: 5 studies (4 studies provided rich data)Relevance: partially relevant (n=2), directly relevant (n=3).

Developing personal coping strategies works towards restoring a sense of normalityRestoring a sense of agency

EinarssonKwongMayre-ChiltonPatterson

Moderate concerns


Minor concerns

Minor concerns

Moderate confidence

Methodological limitations: serious concerns (n=1); moderate concerns (n=2); minor concerns (n=3).Coherence: review finding well supported with first and/or second order interpretations from the original data

ThomasWilliams

Adequacy:6 studies (4 studies provided rich data)Relevance: indirectly relevant (n=2); partially relevant (n=2), directly relevant (n=2).

Acceptance EhrssonKwongThomasWilliams

Moderate concerns


Minor concerns

Minor concerns

Moderate confidence

Methodological limitations: serious concerns (n=1); minor concerns (n=3).Coherence: review finding well supported with first and/or second order interpretations from the original dataAdequacy: 4 studies (3 studies provided rich data)Relevance: partially relevant (n=2), directly relevant (n=2).

Navigating the hurdles when transitioning back to eatingLearning to eat again


Moderate concerns


Minor concerns

Minor concerns

Moderate confidence

Methodological limitations: serious concerns (n=1); moderate concerns (n=1); minor concerns (n=2).Coherence: review finding well supported with first and/or second order interpretations from the original dataAdequacy: 4 studies (3 studies provided rich data)Relevance: indirectly relevant (n=1); partially relevant (n=2), directly relevant (n=1).


KwongMayre-ChiltonPattersonThomas

Moderate concerns


Minor concerns

Minor concerns

Moderate confidence

Methodological limitations: moderate concerns (n=2); minor concerns (n=2).Coherence: review finding well supported with first and/or second order interpretations from the original dataAdequacy: 4 studies (3 studies provided rich data)Relevance: indirectly relevant (n=1); partially relevant (n=1), directly relevant (n=2).

Feeding tube valuedFeeding tube is a lifeline


Moderate concerns


Minor concerns

Minor concerns

Moderate confidence

Methodological limitations: moderate concerns (n=1); minor concerns (n=2).Coherence: review finding well supported with first and/or second order interpretations from the original dataAdequacy: 3 studies (3 provided rich data)Relevance: partially relevant (n=2), directly relevant (n=1).

Regaining Ehrsson Moderate-to- No or very Minor Minor Low-to- Methodological limitations: serious concerns (n=2);

control over body weight or treatment side effects


serious concerns minor concerns

concerns concerns moderate confidence

moderate concerns (n=1); minor concerns (n=2).Coherence: review finding well supported with first and/or second order interpretations from the original dataAdequacy: 5 studies (3 studies provided rich data)Relevance: indirectly relevant (n=1); partially relevant (n=2), directly relevant (n=2).

Internal conflict

KwongThomasWilliams

Minor concerns No or very minor concerns

Minor concerns

Minor concerns

High confidence

Methodological limitations: minor concerns (n=3).Coherence: review finding well supported with first and/or second order interpretations from the original dataAdequacy: 3 studies (3 studies provided rich data)Relevance: partially relevant (n=2), directly relevant (n=1).

Key: n: number of studies

Table-6: GRADE-CERQual assessment: methodological limitations

Summary of Review Finding Studies contributing to the review finding


Rationale

Loss of life as they once knew itAdmitting defeat Ehrsson Moderate to serious Ehrsson: excluded palliative patients; consecutive sampling; interviews were

642

643644645

646

647

648

649

650

651

EinarssonKwongMayre-ChiltonPattersonThomasWilliams

concerns not audio-recorded (notes were made by the researcher); no reflexivity; does not report whether data saturation was reached; does not report on findings of respondent validation; no method triangulation; no participant quotations to evidence this finding (serious concerns).Einarsson: excluded palliative patients and those with recurrence of HNC; consecutive sampling; interviews were not audio-recorded (researcher made notes immediately after the interview); did not report whether data saturation had been reached; no participant quotations to evidence this finding; no reflexivity; did not describe data analysis in depth; no respondent validation; no method triangulation (serious concerns).Kwong: excluded palliative patients; convenience sampling; no reflexivity; data analysis methods not described in depth; no respondent validation; no method triangulation (minor concerns).Mayre-Chilton: unclear how purposive sampling was undertaken; did not report on data saturation; no reflexivity; no respondent validation; no method triangulation; inappropriate use of predetermined codes used during analysis; due to the sensitive nature of this topic participants may have been embarrassed/reluctant to give fuller responses in a group context (moderate concerns).Patterson: did not report on data saturation; no reflexivity; no respondent validation; did not have multiple coders; no participant quotations to evidence this finding (moderate concerns).Williams: excluded palliative patients; no reflexivity; analysis methods not described in depth; did not report results of respondent validation; no method triangulation; unclear on the role of the interviewer – researcher/clinical/whether already known to participants (minor concerns).Thomas: only a sample (n=5) of transcripts were double coded; no method triangulation (minor concerns)

Confined by the feeding tube EhrssonEinarssonKwongThomasWilliams

Moderate concerns Ehrsson: excluded palliative patients; consecutive sampling; interviews were not audio-recorded (notes were made by the researcher); no reflexivity; does not report whether data saturation was reached; does not report on findings of respondent validation; no method triangulation; no participant quotations to evidence this finding (serious concerns).Einarsson: excluded palliative patients and those with recurrence of HNC; consecutive sampling; interviews were not audio-recorded (researcher made notes immediately after the interview); did not report whether data saturation had been reached; no participant quotations to evidence this finding; no reflexivity;

did not describe data analysis in depth; no respondent validation; no method triangulation (serious concerns).Kwong: excluded palliative patients; convenience sampling; no reflexivity; data analysis methods not described in depth; no respondent validation; no method triangulation (minor concerns).Williams: excluded palliative patients; no reflexivity; analysis methods not described in depth; did not report results of respondent validation; no method triangulation; unclear on the role of the interviewer – researcher/clinical/whether already known to participants (minor concerns).Thomas: only a sample (n=5) of transcripts were double coded; no method triangulation (minor concerns)

Distancing of relationships Mayre-ChiltonPattersonThomasWilliams

Moderate concerns Mayre-Chilton: unclear how purposive sampling was undertaken; did not report on data saturation; no reflexivity; no respondent validation; no method triangulation; inappropriate use of predetermined codes used during analysis; due to the sensitive nature of this topic participants may have been embarrassed/reluctant to give fuller responses in a group context (moderate concerns).Patterson: did not report on data saturation; no reflexivity; no respondent validation; did not have multiple coders; no participant quotations to evidence this finding (moderate concerns).Williams: excluded palliative patients; no reflexivity; analysis methods not described in depth; did not report results of respondent validation; no method triangulation; unclear on the role of the interviewer – researcher/clinical/whether already known to participants (minor concerns).Thomas: only a sample (n=5) of transcripts were double coded; no method triangulation (minor concerns)

Perceived social stigma EhrssonKwongMayre-ChiltonThomasWilliams

Moderate concerns Ehrsson: excluded palliative patients; consecutive sampling; interviews were not audio-recorded (notes were made by the researcher); no reflexivity; does not report whether data saturation was reached; does not report on findings of respondent validation; no method triangulation; no participant quotations to evidence this finding (serious concerns).Kwong: excluded palliative patients; convenience sampling; no reflexivity; data analysis methods not described in depth; no respondent validation; no method triangulation (minor concerns).Mayre-Chilton: unclear how purposive sampling was undertaken; did not report on data saturation; no reflexivity; no respondent validation; no method triangulation; inappropriate use of predetermined codes used during analysis; due

to the sensitive nature of this topic participants may have been embarrassed/reluctant to give fuller responses in a group context (moderate concerns).Williams: excluded palliative patients; no reflexivity; analysis methods not described in depth; did not report results of respondent validation; no method triangulation; unclear on the role of the interviewer – researcher/clinical/whether already known to participants (minor concerns).Thomas: only a sample (n=5) of transcripts were double coded; no method triangulation (minor concerns)

Developing personal coping strategies works towards restoring a sense of normalityRestoring a sense of agency Einarsson

KwongMayre-ChiltonPattersonThomasWilliams

Moderate concerns Einarsson: excluded palliative patients and those with recurrence of HNC; consecutive sampling; interviews were not audio-recorded (researcher made notes immediately after the interview); did not report whether data saturation had been reached; no participant quotations to evidence this finding; no reflexivity; did not describe data analysis in depth; no respondent validation; no method triangulation (serious concerns).Kwong: excluded palliative patients; convenience sampling; no reflexivity; data analysis methods not described in depth; no respondent validation; no method triangulation (minor concerns).Mayre-Chilton: unclear how purposive sampling was undertaken; did not report on data saturation; no reflexivity; no respondent validation; no method triangulation; inappropriate use of predetermined codes used during analysis; due to the sensitive nature of this topic participants may have been embarrassed/reluctant to give fuller responses in a group context (moderate concerns).Patterson: did not report on data saturation; no reflexivity; no respondent validation; did not have multiple coders; no participant quotations to evidence this finding (moderate concerns).Williams: excluded palliative patients; no reflexivity; analysis methods not described in depth; did not report results of respondent validation; no method triangulation; unclear on the role of the interviewer – researcher/clinical/whether already known to participants (minor concerns).Thomas: only a sample (n=5) of transcripts were double coded; no method triangulation (minor concerns)

Acceptance EhrssonKwongThomas

Moderate concerns Ehrsson: excluded palliative patients; consecutive sampling; interviews were not audio-recorded (notes were made by the researcher); no reflexivity; does not report whether data saturation was reached; does not report on findings of

Williams respondent validation; no method triangulation; no participant quotations to evidence this finding (serious concerns).Kwong: excluded palliative patients; convenience sampling; no reflexivity; data analysis methods not described in depth; no respondent validation; no method triangulation (minor concerns).Williams: excluded palliative patients; no reflexivity; analysis methods not described in depth; did not report results of respondent validation; no method triangulation; unclear on the role of the interviewer – researcher/clinical/whether already known to participants (minor concerns).Thomas: only a sample (n=5) of transcripts were double coded; no method triangulation (minor concerns)


Learning to eat again EinarssonKwongMayre-ChiltonWilliams

Moderate concerns Einarsson: excluded palliative patients and those with recurrence of HNC; consecutive sampling; interviews were not audio-recorded (researcher made notes immediately after the interview); did not report whether data saturation had been reached; no participant quotations to evidence this finding; no reflexivity; did not describe data analysis in depth; no respondent validation; no method triangulation (serious concerns).Kwong: excluded palliative patients; convenience sampling; no reflexivity; data analysis methods not described in depth; no respondent validation; no method triangulation (minor concerns).Mayre-Chilton: unclear how purposive sampling was undertaken; did not report on data saturation; no reflexivity; no respondent validation; no method triangulation; inappropriate use of predetermined codes used during analysis; due to the sensitive nature of this topic participants may have been embarrassed/reluctant to give fuller responses in a group context (moderate concerns).Williams: excluded palliative patients; no reflexivity; analysis methods not described in depth; did not report results of respondent validation; no method triangulation; unclear on the role of the interviewer – researcher/clinical/whether already known to participants (minor concerns).

Home enteral feeding as a barrier KwongMayre-ChiltonPattersonThomas

Moderate concerns Kwong: excluded palliative patients; convenience sampling; no reflexivity; data analysis methods not described in depth; no respondent validation; no method triangulation (minor concerns).Mayre-Chilton: unclear how purposive sampling was undertaken; did not report on data saturation; no reflexivity; no respondent validation; no method

triangulation; inappropriate use of predetermined codes used during analysis; due to the sensitive nature of this topic participants may have been embarrassed/reluctant to give fuller responses in a group context (moderate concerns).Patterson: did not report on data saturation; no reflexivity; no respondent validation; did not have multiple coders; no participant quotations to evidence this finding (moderate concerns).Thomas: only a sample (n=5) of transcripts were double coded; no method triangulation (minor concerns)

Feeding tube valuedFeeding tube is a lifeline Kwong

Mayre-ChiltonWilliams

Moderate concerns Kwong: excluded palliative patients; convenience sampling; no reflexivity; data analysis methods not described in depth; no respondent validation; no method triangulation (minor concerns).Mayre-Chilton: unclear how purposive sampling was undertaken; did not report on data saturation; no reflexivity; no respondent validation; no method triangulation; inappropriate use of predetermined codes used during analysis; due to the sensitive nature of this topic participants may have been embarrassed/reluctant to give fuller responses in a group context (moderate concerns).Williams: excluded palliative patients; no reflexivity; analysis methods not described in depth; did not report results of respondent validation; no method triangulation; unclear on the role of the interviewer – researcher/clinical/whether already known to participants (minor concerns).



Moderate to serious concerns

Ehrsson: excluded palliative patients; consecutive sampling; interviews were not audio-recorded (notes were made by the researcher); no reflexivity; does not report whether data saturation was reached; does not report on findings of respondent validation; no method triangulation; no participant quotations to evidence this finding (serious concerns).Einarsson: excluded palliative patients and those with recurrence of HNC; consecutive sampling; interviews were not audio-recorded (researcher made notes immediately after the interview); did not report whether data saturation had been reached; no participant quotations to evidence this finding; no reflexivity; did not describe data analysis in depth; no respondent validation; no method triangulation (serious concerns).Kwong: excluded palliative patients; convenience sampling; no reflexivity; data analysis methods not described in depth; no respondent validation; no method triangulation (minor concerns).

Mayre-Chilton: unclear how purposive sampling was undertaken; did not report on data saturation; no reflexivity; no respondent validation; no method triangulation; inappropriate use of predetermined codes used during analysis; due to the sensitive nature of this topic participants may have been embarrassed/reluctant to give fuller responses in a group context (moderate concerns).Williams: excluded palliative patients; no reflexivity; analysis methods not described in depth; did not report results of respondent validation; no method triangulation; unclear on the role of the interviewer – researcher/clinical/whether already known to participants (minor concerns).

Internal conflict KwongThomasWilliams

Minor concerns Kwong: excluded palliative patients; convenience sampling; no reflexivity; data analysis methods not described in depth; no respondent validation; no method triangulation (minor concerns).Williams: excluded palliative patients; no reflexivity; analysis methods not described in depth; did not report results of respondent validation; no method triangulation; unclear on the role of the interviewer – researcher/clinical/whether already known to participants (minor concerns).Thomas: only a sample (n=5) of transcripts were double coded; no method triangulation (minor concerns)

Key: n: number of participants; HNC: head and neck cancer

Table-7: GRADE-CERQual assessment: coherence


Coherence Rationale


652

653

654

655

656

657

658

Admitting defeat EhrssonEinarssonKwongMayre-ChiltonPattersonThomasWilliams


Ehrsson: no concerns with coherence (based on authors summary, no participant quotation related to this finding)Einarsson: no concerns with coherence (based on authors summary)Kwong: no concerns with coherenceMayre-Chilton: no concerns with coherencePatterson: no concerns with coherence (based on authors summary, no participant quotation related to finding)Thomas: no concerns with coherenceWilliams: no concerns with coherence



Ehrsson: no concerns with coherence (based on authors summary, no participant quotation related to this finding)Einarsson: no concerns with coherence (based on authors summary, no participant quotation related to this finding)Kwong: no concerns with coherenceThomas: no concerns with coherenceWilliams: no concerns with coherence



Mayre-Chilton: no concerns with coherencePatterson: no concerns with coherence (based on authors summary, no participant quotation related to finding)Thomas: no concerns with coherenceWilliams: no concerns with coherence



Ehrsson: no concerns with coherence (based on authors summary, no participant quotation related to this finding)Kwong: no concerns with coherenceMayre-Chilton: no concerns with coherenceThomas: no concerns with coherenceWilliams: no concerns with coherence




Einarsson: no concerns with coherence (based on authors summary)Kwong: no concerns with coherenceMayre-Chilton: no concerns with coherencePatterson: no concerns with coherence (based on authors summary, no participant quotation related to finding)Thomas: no concerns with coherenceWilliams: no concerns with coherence

Acceptance EhrssonKwong


Ehrsson: no concerns with coherence (based on authors summary, no participant quotation related to this finding)

ThomasWilliams

Kwong: no concerns with coherenceThomas: no concerns with coherenceWilliams: no concerns with coherence

Navigating the hurdles when transitioning back to eatingLearning to eat again Einarsson



Einarsson: no concerns with coherence (based on authors summary)Kwong: no concerns with coherenceMayre-Chilton: no concerns with coherenceWilliams: no concerns with coherence



Kwong: no concerns with coherenceMayre-Chilton: no concerns with coherencePatterson: no concerns with coherence (based on authors summary, no participant quotation related to finding)Thomas: no concerns with coherence




Kwong: no concerns with coherenceMayre-Chilton: no concerns with coherenceWilliams: no concerns with coherence




Ehrsson: no concerns with coherence (based on authors summary, no participant quotation related to this finding)Einarsson: no concerns with coherence (based on authors summary)Kwong: no concerns with coherenceMayre-Chilton: no concerns with coherenceWilliams: no concerns with coherence



Kwong: no concerns with coherenceThomas: no concerns with coherenceWilliams: no concerns with coherence

Table-8: GRADE-CERQual assessment: adequacy


Adequacy Rationale


659

660

661


Minor concerns Ehrsson: N=23; 30% NGT and 29% PEG patients contributed to this review finding; no direct participant quotes; limited information on interview context or relationship between the researcher and participant; data saturation not discussed; richness of data unclear as no audio-recording (researcher took notes)Einarsson: N=135 (although not clear how many participants contributed to the data which supported this review finding); no participant quotes to evidence review finding; richness of data unclear as no audio-recording (researcher took notes); data saturation not discussed; limited information on interview context or relationship between researcher and participant.Kwong: N=15, although not clear how many participants contributed to the data which supported this review finding; achieved data saturation; context of interview setting and researcher discussed generally (not for the data related to this review finding).Mayre-Chilton: N=6, although not clear how many participants contributed to the data which supported this review finding; did not discuss data saturation; limited information regarding focus group context.Patterson: N=11 observations and N=6 interviews, review finding based on 2 participants; did not discuss data saturation; limited information regarding interview context or relationship between the researcher and participants; no direct participant quotes; relationship between the researcher and participant; data saturation not discussed; richness of data unclear as no audio-recording (researcher took notes).Thomas: N=15, although not clear how many participants contributed to the data which supported the review finding; data saturation was reached; interview context discussed generally (not for the data related to this review finding).Williams: N=10, although not clear how many participants contributed to the data which supported this review finding; little information on the research context ie interview setting and relationship between researcher and participants; data saturation was reached.


Minor concerns Ehrsson: N=23; 11% NGT and 57% PEG patients contributed to this review finding; no direct participant quotes; limited information on interview context or relationship between the researcher and participant; data saturation not discussed; richness of data unclear as no audio-recording (researcher took notes)Einarsson: N=135 (although not clear how many participants contributed to the data which supported this review finding); no participant quotes to evidence review finding; richness of data unclear as no audio-recording (researcher took notes); data saturation not discussed; limited information on interview context or

relationship between researcher and participant.Kwong: N=15, although not clear how many participants contributed to the data which supported this review finding; achieved data saturation; context of interview setting and researcher discussed generally (not for the data related to this review finding).Thomas: N=15, although not clear how many participants contributed to the data which supported the review finding; data saturation was reached; interview context discussed generally (not for the data related to this review finding).Williams: N=10, although not clear how many participants contributed to the data which supported this review finding; little information on the research context ie interview setting and relationship between researcher and participants; data saturation was reached.


Minor concerns Mayre-Chilton: N=6, although not clear how many participants contributed to the data which supported this review finding; did not discuss data saturation; limited information regarding focus group context.Patterson: N=11 observations and N=6 interviews, summary review findings based on 1 participant; did not discuss data saturation; limited information regarding interview context or relationship between the researcher and participants; no direct participant quotes; relationship between the researcher and participant; data saturation not discussed; richness of data unclear as no audio-recording (researcher took notes).Thomas: N=15, although not clear how many participants contributed to the data which supported the review finding; data saturation was reached; interview context discussed generally (not for the data related to this review finding).Williams: N=10, although not clear how many participants contributed to the data which supported this review finding; little information on the research context ie interview setting and relationship between researcher and participants; data saturation was reached.


Minor concerns Ehrsson: N=23; 67% NGT and 7% PEG patients contributed to this review finding; no direct participant quotes; limited information on interview context or relationship between the researcher and participant; data saturation not discussed; richness of data unclear as no audio-recording (researcher took notes)Kwong: N=15, although not clear how many participants contributed to the data which supported this review finding; achieved data saturation; context of interview setting and researcher discussed generally (not for the data related to this review finding).Mayre-Chilton: N=6, although not clear how many participants contributed to

the data which supported this review finding; did not discuss data saturation; limited information regarding focus group context.Thomas: N=15, although not clear how many participants contributed to the data which supported the review finding; data saturation was reached; interview context discussed generally (not for the data related to this review finding).Williams: N=10, although not clear how many participants contributed to the data which supported this review finding; little information on the research context ie interview setting and relationship between researcher and participants; data saturation was reached.



Minor concerns Einarsson: N=135 (although not clear how many participants contributed to the data which supported this review finding); no participant quotes to evidence review finding; richness of data unclear as no audio-recording (researcher took notes); data saturation not discussed; limited information on interview context or relationship between researcher and participant.Kwong: N=15, although not clear how many participants contributed to the data which supported this review finding; achieved data saturation; context of interview setting and researcher discussed generally (not for the data related to this review finding).Mayre-Chilton: N=6, although not clear how many participants contributed to the data which supported this review finding; did not discuss data saturation; limited information regarding focus group context.Patterson: N=11 observations and N=6 interviews, review finding based on 1 participant; did not discuss data saturation; limited information regarding interview context or relationship between the researcher and participants; no direct participant quotes; relationship between the researcher and participant; data saturation not discussed; richness of data unclear as no audio-recording (researcher took notes).Thomas: N=15, although not clear how many participants contributed to the data which supported the review finding; data saturation was reached; interview context discussed generally (not for the data related to this review finding).Williams: N=10, although not clear how many participants contributed to the data which supported this review finding; data saturation was reached; little information on the research context ie interview setting and relationship between researcher and participants.

Acceptance EhrssonKwong

Minor concerns Ehrsson: N=23; 56% NGT and 64% PEG patients contributed to this review finding; no direct participant quotes; limited information on interview context or

ThomasWilliams

relationship between the researcher and participant; data saturation not discussed; richness of data unclear as no audio-recording (researcher took notes)Kwong: N=15, although not clear how many participants contributed to the data which supported this review finding; achieved data saturation; context of interview setting and researcher discussed generally (not for the data related to this review finding).Thomas: N=15, although not clear how many participants contributed to the data which supported the review finding; data saturation was reached; interview context discussed generally (not for the data related to this review finding).Williams: N=10, although not clear how many participants contributed to the data which supported this review finding; data saturation was reached; little information on the research context ie interview setting and relationship between researcher and participants.


Learning to eat again EinarssonKwongMayre-ChiltonWilliams

Minor concerns Einarsson: N=135 (although not clear how many participants contributed to the data which supported this review finding); no participant quotes to evidence review finding; richness of data unclear as no audio-recording (researcher took notes); data saturation not discussed; limited information on interview context or relationship between researcher and participant.Kwong: N=15, although not clear how many participants contributed to the data which supported this review finding; achieved data saturation; context of interview setting and researcher discussed generally (not for the data related to this review finding).Mayre-Chilton: N=6, although not clear how many participants contributed to the data which supported this review finding; did not discuss data saturation; limited information regarding focus group context.Williams: N=10, although not clear how many participants contributed to the data which supported this review finding; data saturation was reached; little information on the research context ie interview setting and relationship between researcher and participants.


Minor concerns Kwong: N=15, although not clear how many participants contributed to the data which supported this review finding; achieved data saturation; context of interview setting and researcher discussed generally (not for the data related to this review finding).Mayre-Chilton: N=6, although not clear how many participants contributed to the data which supported this review finding; did not discuss data saturation;

limited information regarding focus group context.Thomas: N=15, although not clear how many participants contributed to the data which supported the review finding; data saturation was reached; interview context discussed generally (not for the data related to this review finding).Patterson: N=11 observations and N=6 interviews, review finding based on 2 participants; did not discuss data saturation; limited information regarding interview context or relationship between the researcher and participants; no direct participant quotes; relationship between the researcher and participant; data saturation not discussed; richness of data unclear as no audio-recording (researcher took notes).



Minor concerns Kwong: N=15, although not clear how many participants contributed to the data which supported this review finding; achieved data saturation; context of interview setting and researcher discussed generally (not for the data related to this review finding).Mayre-Chilton: N=6, although not clear how many participants contributed to the data which supported this review finding; did not discuss data saturation; limited information regarding focus group context.Williams: N=10, although not clear how many participants contributed to the data which supported this review finding; data saturation was reached; little information on the research context ie interview setting and relationship between researcher and participants.



Minor concerns Ehrsson: N=23; 44% NGT and 36% PEG patients (body weight) and 67% NGT and 93% PEG (treatment side-effects) contributed to this review finding; no direct participant quotes; limited information on interview context or relationship between the researcher and participant; data saturation not discussed; richness of data unclear as no audio-recording (researcher took notes)Einarsson: N=135 (although not clear how many participants contributed to the data which supported this review finding); no participant quotes to evidence review finding; richness of data unclear as no audio-recording (researcher took notes); data saturation not discussed; limited information on interview context or relationship between researcher and participant.Kwong: N=15, although not clear how many participants contributed to the data which supported this review finding; achieved data saturation; context of interview setting and researcher discussed generally (not for the data related to this review finding).Mayre-Chilton: N=6, although not clear how many participants contributed to

the data which supported this review finding; did not discuss data saturation; limited information regarding focus group context.Williams: N=10, although not clear how many participants contributed to the data which supported this review finding; data saturation was reached; little information on the research context ie interview setting and relationship between researcher and participants.


Minor concerns Kwong: N=15, although not clear how many participants contributed to the data which supported this review finding; achieved data saturation; context of interview setting and researcher discussed generally (not for the data related to this review finding).Thomas: N=15, although not clear how many participants contributed to the data which supported the review finding; data saturation was reached; interview context discussed generally (not for the data related to this review finding).Williams: N=10, although not clear how many participants contributed to the data which supported this review finding; data saturation was reached; little information on the research context ie interview setting and relationship between researcher and participants.

Key: N: number of participants; NGT: nasogastric feeding tube; PEG: percutaneous endoscopic gastrostomy

Table-9: GRADE-CERQual assessment: relevance


Relevance Rationale


662

663

664

665

666

667

668

669


Minor concerns Ehrsson: concerns related to: excluding palliative patients (direct relevance)Einarsson: concerns related to: excluded patients who were palliative or those with recurrent disease; 71% were married/cohabiting; does not state the number of participants with feeding tubes/demographic characteristics of those with a feeding tube in place (indirect relevance)Kwong: concerns related to the fact than none of the participants had a feeding tube in at the time of the study; only included those with advanced HNC (ie subgroup); excluded palliative patients; authors state that at the time of the study only g-tubes were places in the centre (ie not nasogastric etc); 93% were married (partially relevant – sub-group with HNC)Mayre-Chilton: concerns related to: included only those well enough to attend focus group and 7 patients dropped out on the day of the focus group; 33% tube removed (directly relevant but with some concerns re relevance)Patterson: concerns related to excluding those with recurrent disease; limited information on impact of HEF as main focus of study was perceptions of swallow (although did provide demographic characteristics of those that were tube fed) (indirect relevance)Thomas: did not include any participants fed via a nasogastric feeding tube (87% had a balloon gastrostomy tube); sampling targets from sampling frame was not achieved except for type of feeding method; did not include information on tumour staging (directly relevant)Williams: concerns related to: excluded palliative patients; 90% stage 3-4 tumours (ie subgroup); 20% did not have a feeding tube in at the time of the study (partially relevant – sub-group with HNC)


Minor concerns Ehrsson: concerns related to: excluding palliative patients (direct relevance)Einarsson: concerns related to: excluded patients who were palliative or those with recurrent disease; 71% were married/cohabiting; does not state the number of participants with feeding tubes/demographic characteristics of those with a feeding tube in place (indirect relevance)Kwong: concerns related to the fact than none of the participants had a feeding tube in at the time of the study; only included those with advanced HNC (ie subgroup); excluded palliative patients; authors state that at the time of the study only g-tubes were places in the centre (ie not nasogastric etc); 93% were married (partially relevant – sub-group with HNC)Williams: concerns related to: excluded palliative patients; 90% stage 3-4 tumours (ie subgroup); 20% did not have a feeding tube in at the time of the study (partially relevant – sub-group with HNC)

Thomas: did not include any participants fed via a nasogastric feeding tube (87% had a balloon gastrostomy tube); sampling targets from sampling frame was not achieved except for type of feeding method; did not include information on tumour staging (directly relevant)


Minor concerns Mayre-Chilton: concerns related to: included only those well enough to attend focus group and 7 patients dropped out on the day of the focus group; 33% tube removed (directly relevant but with some concerns re relevance)Patterson: concerns related to excluding those with recurrent disease; limited information on impact of HEF as main focus of study was perceptions of swallow (although did provide demographic characteristics of those that were tube fed) (indirect relevance)Thomas: did not include any participants fed via a nasogastric feeding tube (87% had a balloon gastrostomy tube); sampling targets from sampling frame was not achieved except for type of feeding method; did not include information on tumour staging (directly relevant)Williams: concerns related to: excluded palliative patients; 90% stage 3-4 tumours (ie subgroup); 20% did not have a feeding tube in at the time of the study (partially relevant – sub-group with HNC)


Minor concerns Ehrsson: concerns related to: excluding palliative patients (direct relevance)Kwong: concerns related to the fact than none of the participants had a feeding tube in at the time of the study; only included those with advanced HNC (ie subgroup); excluded palliative patients; authors state that at the time of the study only g-tubes were places in the centre (ie not nasogastric etc); 93% were married (partially relevant – sub-group with HNC)Mayre-Chilton: concerns related to: included only those well enough to attend focus group and 7 patients dropped out on the day of the focus group; 33% tube removed (directly relevant but with some concerns re relevance)Thomas: did not include any participants fed via a nasogastric feeding tube (87% had a balloon gastrostomy tube); sampling targets from sampling frame was not achieved except for type of feeding method; did not include information on tumour staging (directly relevant)Williams: concerns related to: excluded palliative patients; 90% stage 3-4 tumours (ie subgroup); 20% did not have a feeding tube in at the time of the study (partially relevant – sub-group with HNC)


KwongMinor concerns Einarsson: concerns related to: excluded patients who were palliative or those

with recurrent disease; 71% were married/cohabiting; does not state the number


of participants with feeding tubes/demographic characteristics of those with a feeding tube in place (indirect relevance)Kwong: concerns related to the fact than none of the participants had a feeding tube in at the time of the study; only included those with advanced HNC (ie subgroup); excluded palliative patients; authors state that at the time of the study only g-tubes were places in the centre (ie not nasogastric etc); 93% were married (partially relevant – sub-group with HNC)Mayre-Chilton: concerns related to: included only those well enough to attend focus group and 7 patients dropped out on the day of the focus group; 33% tube removed (directly relevant but with some concerns re relevance)Patterson: concerns related to excluding those with recurrent disease; limited information on impact of HEF as main focus of study was perceptions of swallow (although did provide demographic characteristics of those that were tube fed) (indirect relevance)Thomas: did not include any participants fed via a nasogastric feeding tube (87% had a balloon gastrostomy tube); sampling targets from sampling frame was not achieved except for type of feeding method; did not include information on tumour staging (directly relevant)Williams: concerns related to: excluded palliative patients; 90% stage 3-4 tumours (ie subgroup); 20% did not have a feeding tube in at the time of the study (partially relevant – sub-group with HNC)

Acceptance EhrssonKwongThomasWilliams

Minor concerns Ehrsson: concerns related to: excluding palliative patients (direct relevance)Kwong: concerns related to the fact than none of the participants had a feeding tube in at the time of the study; only included those with advanced HNC (ie subgroup); excluded palliative patients; authors state that at the time of the study only g-tubes were places in the centre (ie not nasogastric etc); 93% were married (partially relevant – sub-group with HNC)Thomas: did not include any participants fed via a nasogastric feeding tube (87% had a balloon gastrostomy tube); sampling targets from sampling frame was not achieved except for type of feeding method; did not include information on tumour staging (directly relevant)Williams: concerns related to: excluded palliative patients; 90% stage 3-4 tumours (ie subgroup); 20% did not have a feeding tube in at the time of the study (partially relevant – sub-group with HNC)

Navigating the hurdles when transitioning back to eatingLearning to eat again Einarsson

KwongMinor concerns Einarsson: concerns related to: excluded patients who were palliative or those

with recurrent disease; 71% were married/cohabiting; does not state the number


of participants with feeding tubes/demographic characteristics of those with a feeding tube in place (indirect relevance)Kwong: concerns related to the fact than none of the participants had a feeding tube in at the time of the study; only included those with advanced HNC (ie subgroup); excluded palliative patients; authors state that at the time of the study only g-tubes were places in the centre (ie not nasogastric etc); 93% were married (partially relevant – sub-group with HNC)Mayre-Chilton: concerns related to: included only those well enough to attend focus group and 7 patients dropped out on the day of the focus group; 33% tube removed (directly relevant but with some concerns re relevance)Williams: concerns related to: excluded palliative patients; 90% stage 3-4 tumours (ie subgroup); 20% did not have a feeding tube in at the time of the study (partially relevant – sub-group with HNC)


Minor concerns Kwong: concerns related to the fact than none of the participants had a feeding tube in at the time of the study; only included those with advanced HNC (ie subgroup); excluded palliative patients; authors state that at the time of the study only g-tubes were places in the centre (ie not nasogastric etc); 93% were married (partially relevant – sub-group with HNC)Mayre-Chilton: concerns related to: included only those well enough to attend focus group and 7 patients dropped out on the day of the focus group; 33% tube removed (directly relevant but with some concerns re relevance)Patterson: concerns related to excluding those with recurrent disease; limited information on impact of HEF as main focus of study was perceptions of swallow (although did provide demographic characteristics of those that were tube fed) (indirect relevance)Thomas: did not include any participants fed via a nasogastric feeding tube (87% had a balloon gastrostomy tube); sampling targets from sampling frame was not achieved except for type of feeding method; did not include information on tumour staging (directly relevant)



Minor concerns Kwong: concerns related to the fact than none of the participants had a feeding tube in at the time of the study; only included those with advanced HNC (ie subgroup); excluded palliative patients; authors state that at the time of the study only g-tubes were places in the centre (ie not nasogastric etc); 93% were married (partially relevant – sub-group with HNC)Mayre-Chilton: concerns related to: included only those well enough to attend focus group and 7 patients dropped out on the day of the focus group; 33% tube

removed (directly relevant but with some concerns re relevance)Williams: concerns related to: excluded palliative patients; 90% stage 3-4 tumours (ie subgroup); 20% did not have a feeding tube in at the time of the study (partially relevant – sub-group with HNC)



Minor concerns Ehrsson: concerns related to: excluding palliative patients (direct relevance)Einarsson: concerns related to: excluded patients who were palliative or those with recurrent disease; 71% were married/cohabiting; does not state the number of participants with feeding tubes/demographic characteristics of those with a feeding tube in place (indirect relevance)Kwong: concerns related to the fact than none of the participants had a feeding tube in at the time of the study; only included those with advanced HNC (ie subgroup); excluded palliative patients; authors state that at the time of the study only g-tubes were places in the centre (ie not nasogastric etc); 93% were married (partially relevant – sub-group with HNC)Mayre-Chilton: concerns related to: included only those well enough to attend focus group and 7 patients dropped out on the day of the focus group; 33% tube removed (directly relevant but with some concerns re relevance)Williams: concerns related to: excluded palliative patients; 90% stage 3-4 tumours (ie subgroup); 20% did not have a feeding tube in at the time of the study (partially relevant – sub-group with HNC)


Minor concerns Kwong: concerns related to the fact than none of the participants had a feeding tube in at the time of the study; only included those with advanced HNC (ie subgroup); excluded palliative patients; authors state that at the time of the study only g-tubes were places in the centre (ie not nasogastric etc); 93% were married (partially relevant – sub-group with HNC)Thomas: did not include any participants fed via a nasogastric feeding tube (87% had a balloon gastrostomy tube); sampling targets from sampling frame was not achieved except for type of feeding method; did not include information on tumour staging (directly relevant)Williams: concerns related to: excluded palliative patients; 90% stage 3-4 tumours (ie subgroup); 20% did not have a feeding tube in at the time of the study (partially relevant – sub-group with HNC)

Key: HNC: head and neck cancer670

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PRISMA Checklist

Section/topic # Checklist item Reported on page #

TITLE

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Title 1 Identify the report as a systematic review, meta-analysis, or both. Title pageABSTRACTStructured summary 2 Provide a structured summary including, as applicable: background; objectives; data sources; study eligibility

criteria, participants, and interventions; study appraisal and synthesis methods; results; limitations; conclusions and implications of key findings; systematic review registration number.

p. 1

INTRODUCTIONRationale 3 Describe the rationale for the review in the context of what is already known. p. 2-3Objectives 4 Provide an explicit statement of questions being addressed with reference to participants, interventions,

comparisons, outcomes, and study design (PICOS).p. 2-3 & Figure-1

METHODSProtocol and registration 5 Indicate if a review protocol exists, if and where it can be accessed (e.g., Web address), and, if available,

provide registration information including registration number.p. 3

Eligibility criteria 6 Specify study characteristics (e.g., PICOS, length of follow-up) and report characteristics (e.g., years considered, language, publication status) used as criteria for eligibility, giving rationale.

p. 3 & Figure-1

Information sources 7 Describe all information sources (e.g., databases with dates of coverage, contact with study authors to identify additional studies) in the search and date last searched.

p. 4

Search 8 Present full electronic search strategy for at least one database, including any limits used, such that it could be repeated.

Supplementary material

Study selection 9 State the process for selecting studies (i.e., screening, eligibility, included in systematic review, and, if applicable, included in the meta-analysis).

p. 4

Data collection process 10 Describe method of data extraction from reports (e.g., piloted forms, independently, in duplicate) and any processes for obtaining and confirming data from investigators.

p. 4

Data items 11 List and define all variables for which data were sought (e.g., PICOS, funding sources) and any assumptions and simplifications made.

p. 4

Risk of bias in individual studies

12 Describe methods used for assessing risk of bias of individual studies (including specification of whether this was done at the study or outcome level), and how this information is to be used in any data synthesis.

p. 5

Summary measures 13 State the principal summary measures (e.g., risk ratio, difference in means). p. 4Synthesis of results 14 Describe the methods of handling data and combining results of studies, if done, including measures of

consistency (e.g., I2) for each meta-analysis.n/a

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Section/topic # Checklist item Reported on page #

Risk of bias across studies 15 Specify any assessment of risk of bias that may affect the cumulative evidence (e.g., publication bias, selective reporting within studies).

p. 5

Additional analyses 16 Describe methods of additional analyses (e.g., sensitivity or subgroup analyses, meta-regression), if done, indicating which were pre-specified.

n/a

RESULTSStudy selection 17 Give numbers of studies screened, assessed for eligibility, and included in the review, with reasons for

exclusions at each stage, ideally with a flow diagram.Figure-2

Study characteristics 18 For each study, present characteristics for which data were extracted (e.g., study size, PICOS, follow-up period) and provide the citations.

p. 5 & Table-2 supplementary material

Risk of bias within studies 19 Present data on risk of bias of each study and, if available, any outcome level assessment (see item 12). Table-1 and Tables 4 to 9.

Results of individual studies 20 For all outcomes considered (benefits or harms), present, for each study: (a) simple summary data for each intervention group (b) effect estimates and confidence intervals, ideally with a forest plot.

p. 5-11 (results section)

Synthesis of results 21 Present results of each meta-analysis done, including confidence intervals and measures of consistency. n/aRisk of bias across studies 22 Present results of any assessment of risk of bias across studies (see Item 15). p. 11 (Table-1,

Tables 4 to 9)Additional analysis 23 Give results of additional analyses, if done (e.g., sensitivity or subgroup analyses, meta-regression [see Item

16]).n/a

DISCUSSIONSummary of evidence 24 Summarize the main findings including the strength of evidence for each main outcome; consider their

relevance to key groups (e.g., healthcare providers, users, and policy makers).p. 11-14

Limitations 25 Discuss limitations at study and outcome level (e.g., risk of bias), and at review-level (e.g., incomplete retrieval of identified research, reporting bias).

p. 11,13

Conclusions 26 Provide a general interpretation of the results in the context of other evidence, and implications for future research.

p. 11-14

FUNDING

Funding 27 Describe sources of funding for the systematic review and other support (e.g., supply of data); role of funders for the systematic review.

Title page

From: Moher D, Liberati A, Tetzlaff J, Altman DG, The PRISMA Group (2009). Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement. PLoS Med 6(7): e1000097. doi:10.1371/journal.pmed1000097

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Documents

· Web viewTonsil: 60%, Tongue: 30% Glottis: 10% Treatment: RT+CT: 90% RT: 10% Time since treatment (weeks) 0-12: 90% 13-24: 0% 25-36: 10% Semi-structured interviews (face-to …