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School of Health Sciences, Jönköping University
Documentation in Child and School Health Services
Mapping health information
from a biopsychosocial perspective using the ICF-CY
Ylva Ståhl
DISSERTATION SERIES NO. 29, 2012
JÖNKÖPING 2012
© Ylva Ståhl, 2012
Publisher: School of Health Sciences Print: Intellecta Infolog
ISSN 1654-3602 ISBN 978-91-85835-28-7
“It is not the horse that pulls the trolley, it is the hay” (unknown origin)
Abstract
The overall aim of this thesis was to analyze whether the documentation in the Child Health Services (CHS) and School Health Services (SHS) reflects a holistic view on health as represented by a bio-psychosocial perspective. The method used based on four studies, all with a descriptive design. Analyzed documents contained lists of health terms recommended to be included in the health record (HR) (I), requested information in health questionnaires (II) and the content of free text notes in health records (HRs) (III). A deductive approach was used on an item-by-item basis (I, II), and for the free text notes in HRs a qualitative content analysis with an inductive approach was chosen (III). Nurses’ and physicians’ views on documentation and electronic HR were analyzed with the help of a quantitative questionnaire design (IV). Results showed that information on developed lists of health terms recommended to be included in an electronic version of the HR (I) could be linked to codes in the ICF-CY. The linked health terms were mainly focused on the body, i.e. a biological perspective on health. Several health terms linked to two or more codes, which indicate a need for more clarity in content descriptions. In the locally produced health questionnaires (Study II), for all age groups, a majority of the linked health items counted only once, and involved a psychosocial perspective on health. These health items were related to communication, psychosomatic symptoms and taking care of one’s health (II). The results in the free text notes in HRs (III) mainly focused on a psychosocial perspective on health and were represented across all age groups, but were unevenly distributed. There was new health information in the free text notes which had not been covered in the standardized part of the HRs. The respective staffs acknowledged that more health information than was documented in the HR was transferred between the CHS and SHS (IV). This information concerned foremost family function. The CHS and SHS had positive opinions regarding the possibilities of an electronic version of the HR. Conclusions: The predominant medical content of lists of health terms was supplemented with health information related to psychosocial health in health questionnaires and in the free text notes in the HR. However, the focus was on the child as a person rather than a child within a family and preschool/school environment, and was strongly related to age groups. More information on children’s health than was recorded was transferred between and within the services. The utility of the ICF-CY as a tool has been confirmed, and indicates challenges to develop a common language to document more on psychosocial health.
Original papers
The thesis is based on the following studies, referred to in the text by their Roman numerals.
Study I
Ståhl Y, Granlund M, Andersson Gäre B, Enskär K. Mapping of children's health and development data on population level using the classification system ICF-CY. Scandinavian Journal of Public Health. 2011 Feb;39(1):51-7. Epub 2010 Aug 5
Study II
Ståhl Y, Enskär K, Almborg A-H, Granlund M. Contents of Swedish school health questionnaires British Journal of School Nursing. 2011 Mar;6(2):82-88
Study III
Ståhl Y, Granlund M, Andersson Gäre B, Simeonsson RJ, Enskär K. Psychosocial health information in free text notes of Swedish children's health records. Submitted
Study IV
Ståhl Y, Granlund M, Andersson Gäre B, Enskär K. Views on health information and perceptions of standardized electronic records among staff in Child and School Health Services. Journal of Nursing Management. 2011 Mar; 19(2):201-8
The articles have been reprinted with the kind permission of the respective journals.
Contents Abstract ......................................................................................................5 Original papers ..........................................................................................7
Study I .........................................................................................................................7 Study II........................................................................................................................7
Study III ......................................................................................................................7
Study IV ......................................................................................................................7
Acknowledgements.................................................................................. 10 Abbreviations ........................................................................................... 13 Introduction ............................................................................................. 15 Background.............................................................................................. 16
Health ........................................................................................................................16
Perspectives on health........................................................................................16
Biopsychosocial perspectives on health ..........................................................17
Children’s health..................................................................................................18 Organizations and regulations ...............................................................................19
Health system in Sweden ...................................................................................19
Child Health Services .........................................................................................20
School Health Services.......................................................................................21
Health work in Child and School Health Services.........................................22 The documentation .................................................................................................24
Regulations for documentation ........................................................................24
Documents in the Child and School Health Services ...................................24
Quality of the documentation in the health record .......................................25
International Classification of Functioning, Disability and Health Children & Youth version (ICF-CY) ...................................................................27
The ICF-CY - a standard framework ..............................................................27
The structure of the ICF-CY ............................................................................28
Limitations and critical comments ...................................................................30
Rationale for the thesis ............................................................................ 31 Aim........................................................................................................... 32 Method ..................................................................................................... 33
Design........................................................................................................................33
Participants: suppliers of materials (Studies I, II and III) ............................... 33
Data collection (Studies I, II and III).............................................................. 35
Data analysis (Studies I, II and III) ................................................................. 36 Linking data to the ICF-CY (Studies I, II and III)........................................... 38
Guidelines and rules for linking ....................................................................... 38
Linking process (Studies I, II) .......................................................................... 39
Participants (Study IV) ........................................................................................... 40
Data collection (Study IV) ................................................................................ 41 Data analysis (Study IV) .................................................................................... 41
Ethical considerations ............................................................................................ 41
Result....................................................................................................... 43 Content of health information in documentation ............................................. 43
Views on health information in documentation ................................................ 45
Views regarding an electronic version of the HR ......................................... 46
The utility of linking health data to ICF-CY ...................................................... 46
Discussion ............................................................................................... 49 Different perspectives on health and age differences ....................................... 49
Traditions and views influence the documentation .......................................... 52
The utility of the ICF-CY ...................................................................................... 55
Health variables related to the ICF-CY .......................................................... 55
Limitations of linking health data to the ICF-CY......................................... 57 Methodological discussion .................................................................................... 58
Validity and Reliability ....................................................................................... 58
Credibility, Dependability, Confirmability and Transferability ................... 60
Conclusions.............................................................................................................. 62
Clinical implications and continued research ..................................................... 63
Summary in Swedish/ Svensk sammanfattning ..................................... 64 Dokumentation i barn- och skolhälsovården kartläggning av hälsoinformation från ett biopsykosocialt perspektiv med hjälp av ICF-CY............................................. 64 Kliniska implikationer och fortsatt forskning .................................................... 65
References ............................................................................................... 67
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Acknowledgements
I would like to express my sincere gratitude to all people who have guided and followed me during the last four years as a PhD student. Today I know that this thesis had not been completed without your support. With special thanks to:
- The participants; nurses and physicians in the child and school health
services in Kalmar, Jönköping and Östergötland counties. Without contributing with your valuable working time by serving as suppliers of material this thesis could not be performed.
- Karin Enskär, my supervisor, Mats Granlund, my co-supervisor, Boel
Andersson Gäre, my co- supervisor. With you I have had regular comprehensive and excellent supervision throughout these four years. During the writing processes you shared your knowledge and wise comments. You gave me the encouragement which I needed so well.
- Rune J Simeonsson, my co-supervisor and co-author (Study III) for
sharing your knowledge concerning children’s development in relation to the framework in the ICF-CY. I appreciate all you did for me and your staff to make my semester as a visiting scholar at the University of Chapel Hill in the North Carolina to such an interesting and unforgettable time.
- Ann-Helene Almborg, co-author (Study II) for your contribution in
the writing process and sharing your knowledge of the ICF-CY.
- All PhD students and coordinators at the Research School of Health and Welfare and the research environment CHILD at the University of Jönköping, who gave me support, interesting discussions and good, healthy laughs.
- Lena Adamson, Margareta Adolfsson, Gunilla Brushammar, Marie
Bäckström-Andersson and Dorte Kjeldmand for your professional contribution within different areas to improve my work.
- Irene Zipper at the University of Chapel Hill who introduced me to
interesting environments and field work. Chris Harlan at Schooll of Nursing who opened doors to public school visits and connections
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with staffs and students. Susanne Nelson with whom I spent part of my leisure time with and you also introduced me to local society.
- Marie, Ingvar and Hasse for our “Wednesday evening dinners”.
Despite my fatigue these regular occasions cheered me up.
- The “French Ladies” for our fellowship, sharing delicious food, wine and language practice. Each third week have I arrived as a thirsty camel coming to the oasis.
- Lena, for support and for your invaluable advice.
- My sister Elisabeth, good listener, who always been there when I
needed you.
- Hasse, my life partner, without you this journey has been inoperable. We did it together! You have been my main supporter and shared your language knowledge with me. Besides, you have had a lot of patience with me and I have not always been so easy to handle. Anyway, you still stand by me and tomorrow is a new day!
- Love and Maja - my jewels. Thanks for your participation in all I am
doing. From you I got a lot of energy. Sofia, the mother of my grandchild Mika, thanks for bringing him to this world. It is so exciting to get to know him. You are all the sunshine of my life!
My studies and research was supported and financed by; Eksjö municipality, Futurum Jönköping County Council and the Swedish Association of Health Professionals. The Transatlantic Consortium on Global Education and Developmental Studies (GEDS) financed my four months scholarship at the University at Chapel Hill, North Carolina, USA.
Eksjö, Mars, 2012
Ylva Ståhl
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Abbreviations
CHS = Child Health Service
HR = Health Record,
HRs = Health Records
ICD-10 = the International Classification of Diseases
ICF-CY = International Classification of Functioning, Disability and Health, Children & Youth version
IS project = Information System project
SHS = School Health Service
WHO = World Health Organization
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Introduction
From an international perspective, Swedish children’s health is very good. However, declining psychosocial health and wellbeing are trends among children and youth (Clausson, Köhler, & Berg, 2008b; Hjern, Alfven, & Östberg, 2008; National Board of Health and Welfare, 2009b; Swedish National Institute of Public Health, 2011c). Whether this is visible in the documentation of children’s health in the Child Health Service (CHS) and the School Health Service (SHS) is an open question. To achieve documentation that contains both physical and psychosocial information of health, a bio-psychosocial perspective on health needs to be applied.
As an experienced district nurse and a Master of Medical Science in Public Health, my main professional experience comes from work as a school nurse and as head of the SHS in one municipality. One of the main areas my colleagues and I worked with concerned establishing which information on children’s health should be documented and how to do so in a systematic and structured way. The purpose was to use the documentation to ensure that the best care possible was provided to the child and his/her family.
The present thesis began in 2008 and originated as part of a Swedish national Information System (IS) project, Barnhälsodataprojektet (The Child Health Data project). The IS project was initiated in 2006 by the Swedish Association of Local Authorities and Regions as a response to demands from the professions in the CHS and SHS. The services wanted help with national coordination in the development of an agreed-upon model for electronic recordkeeping and transfer of information. For the School of Health Sciences at Jönköping University, the mission of the national IS project was to investigate whether one of the World Health Organization’s (WHO’s) classification systems, the International Classification of Functioning, Disability and Health – Children & Youth version (ICF-CY), could be used as a framework for a common language for the health information in the CHS and SHS. The purpose of the IS project was to facilitate and ensure the precision, accuracy and safety of transferred information within and between the CHS and SHS, as well as between different data systems.
The intention of this thesis was to determine the content of health information from a holistic view on health, i.e. a bio-psychosocial perspective, in different documents used in the CHS and SHS. The ICF-CY was used as a tool to fulfill this intent.
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Background Health
“The absence of disease may be a part of health, but health is more than the absence of disease” (Blaxter, 2010, p. 19).
Perspectives on health
Health is a concept too complex to give a simple definition. From era to era, and from culture to culture, the concepts of health and disease have been assigned various meanings containing different dimensions. The development of medical science has strongly influenced human thought about and opinions on illness and disease. But it is not only physical and psychological status that determines whether a disease is a disease. The views on health are influenced by ruling values in society (Blaxter, 2010).
Rapid progress within medical science, together with technology development, has led to great knowledge of the human body (Blaxter, 2010; Willman, 1996). The pathogenic view i.e. the biomedical perspective on health in Western countries is understanding health as the absence of disease and has its roots in the Cartesian division between mind and body. This reductionist approach considers health to be the absence of disease and illness, so to say the “healthy are those who are not biologically disadvantaged” (Blaxter, 2010, p. 5) and this assumption was developed and deepened by Boorse (1977). In his bio-statistical theory, he defines health as “normal functioning, where the normality is statistical and the functions biological” (Boorse, 1977, p. 542). Boorse’s theory is widely accepted but has also been refuted, criticized and questioned (Khushf, 2007; Nordenfelt, 2007).
The humanistic view i.e. the psychosocial perspective on health, developed from fields within the psychological and social sciences, sees health as a positive state and a process experienced in daily life (Dahlberg & Segesten, 2010; Medin & Alexandersson, 2000; Willman, 1996). There are different philosophical views on and descriptions of the concept of health, such as a status, process, function, wellbeing and quality of life (Blaxter, 2010; Tengland, 2007; Willman, 1996). Another view on health refers to a person’s ability to reach his/her goals and feel happy (Nordenfelt, 1995). These different views all have in common that they are derived from a holistic view on health, regarding the person as a whole rather than a series of distinct bodily systems. Within the health sciences, nursing science looks at the individual’s health and wellbeing, and functioning
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in daily life. Internationally there are consensus concepts within nursing science, one of which is health; thus, health is considered a goal (Alligood & Tomey, 2010). To understand an individual’s health, both biomedical and psychosocial perspectives are needed. These perspectives are not mutually exclusive but rather supplement each other (Dahlberg & Segesten, 2010; Willman, 1996).
Biopsychosocial perspectives on health
As early as 1948, a radical definition of health was proposed by the WHO. For the first time, a holistic view on health was defined as three dimensions: “a state of complete physical, mental and social wellbeing, and not merely the absence of disease and infirmity” (World Health Organization, 1946, p. 2). This definition has never been amended, but has been criticized because it is impossible to achieve an absolute state of health and because health is part of wellbeing. There is no single agreed-upon definition of the concept of health. It is indisputable that the concept has been shaped over history. Health has come to be increasingly described and accepted as an interaction between the person and his/her environment; in other words health is both inside and outside the person (Blaxter, 2010; Ogden, 2007). The definition of health by the WHO is further developed into a broader concept in the policy document of the Ottawa Charter for Health Promotion (World Health Organization, 1986).The document describes health as a positive concept and emphasizes it as personal and social resources as well as one’s physical capacity for everyday life, and calls for care providers to promote health and prevent illness on a local level. Promoting health is the process of enabling people to increase control over and to improve their health (World Health Organization, 1986).
Engel (1977), a psychiatrist, argued for the need to look at illness with added psychological and social dimensions instead of only from a biomedical perspective. Health and illness is complex and need to be described from a holistic viewpoint; consequently, Engel introduced a bio-psychosocial model within the medical area. The model can be used as a philosophical model and clinical guide to improve communication across scientific disciplines. Today, the bio-psychosocial model enjoys broad acceptance within the health care sector. It provides a complex, circular causality describing the individual and his/her needs in relation to the existing context (Borrell-Carrio, Suchman, & Epstein, 2004; Engel, 1978). From a systems theory perspective (von Bertalanffy, 1969), views on health refer to a complex of interacting elements, i.e. multiple causalities. Thus, mutual dependencies are noted, as well as conditions and change (Wachs, 2000).
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This thesis is based on a bio-psychosocial perspective on children’s health, which includes the performance of activities contributing to functioning in daily life and thus stresses the importance of including the child in its context.
Children’s health
From a global perspective, major health problems cause death among children. However, the health of children in European countries is better than ever before, although new health threats are emerging concerning their psychosocial health (Barnekow & Muijen, 2009). The leading causes of death among children under five years of age in the European Region are neonatal conditions and infectious disease. Unintentional injuries such as traffic accidents, drowning and poisoning are the leading cause of death among children aged five to19 years. Children are also at risk of malnutrition, hazardous environments, obesity and unhealthy lifestyles. Ample evidence shows that children living in poorer circumstances are more likely to be at risk of unintentional injuries and physical inactivity than are those from more affluent families. In industrialized countries, children’s needs are moving from predominantly physical to psychosocial ones. The WHO /Europe helps countries reform their health systems and focus policy on social and economic determinants. One of the main tasks, along with this policy focus, is to deliver effective care along a continuum. Children’s health is influenced by the educational level of their caregivers, mainly that of the mother (World Health Organization, 2011). Countries with more even income distribution also have better public health than countries with irregularly distributed resources. Children's health and life habits during their maturation influence how their health will develop as they reach adulthood (Fåhraeus et al., in press; Hayman et al., 2007).
The Convention on the Rights of the Child defines a child as every human being under18 years (UN, 1989). There are approximately two million children in Sweden, which corresponds to 22% of the population. A majority of children have good psychosocial health, however, declining psychosocial health and wellbeing as well as increasing psychosomatic symptoms are trends among children and young people today (Clausson, et al, 2008b; Hjern, et al., 2008; Johansson, Brunnberg, & Eriksson, 2007; Swedish National Institute of Public Health, 2011b, 2011d). Psychosocial health and wellbeing among schoolchildren worsen across the ages, and the most vulnerable are students not living with their parents. Determinants of health are the family, preschool/school situation and leisure time (Swedish National Institute of Public Health, 2011b). In 2009 approximately 14% of students in Sweden perceived that they had an impairment, which could include physical impairments, dyslexia, visual and/or hearing impairments, ADHD, epilepsy or diabetes (Swedish National Institute of Public Health, 2009). Allergies or
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asthma constituted about half of the group of children with impairments. Reading and writing disabilities are also among the most common disabilities. Roughly one-fifth of all children in Sweden are overweight (Fåhraeus, et al., in press; Lager, Fossum, Rörvall, & Bremberg, 2009; National Board of Health and Welfare, 2009b). Children with one or more impairment more often perceived lower life satisfaction, mental health problems and bullying compared to children without impairments (National Board of Health and Welfare, 2009b; Nordhagen, Nielsen, Stigum, & Köhler, 2005).
Organizations and regulations
Health system in Sweden
The health system in Sweden is tax-financed and organized into municipalities and county councils or regions. There is no hierarchical relationship between them, as all have their own self-governing local authorities with responsibility for different activities. On a national level, all professionals within health and medical care are guided by the Health and Medical Services Act (SFS 1982:763). Nurses and physicians have their own responsibility, to perform their work in accordance with science and well proven experience (SFS 2010:659).
In Sweden, the CHS and SHS are given a mission from society to organize and offer health surveillance and promotion for all children from birth through the end of upper secondary school (until age ~18-22 years). The National Board of Health and Welfare and the Swedish National Agency for Education (for the SHS only) are the supervising bodies for both services. What is to be surveyed and promoted is partly regulated by documentation. Nearly all children participate in the services programs, and their health is documented. The health service for young children, from birth to 6 years, is the responsibility of the county council’s CHS. When a child is six years old and starts school, the responsibility as well as the documentation is transferred to the SHS, which is run by the municipality.
The services are continuously interacting with their environment. Internal and external cooperation partners are involved in the services work with children’s health in accordance with ruling laws and guidelines. According to the systems theory there are distinction between open and closed systems. The CHS and SHS are considered to be open systems, since they interact with their environment. In these organizations this means a constant flow of information in and out of the system. Sometimes, these flows create disturbances (von Bertalanffy, 1969) and can partly be operationalized as form and content of
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documentation. Questioned issues can open new perspectives which can contribute the solving of problems.
In 2011, the National Board of Health and Welfare was given a mission from the government to collaborate with staff within the interest organizations on revising guidelines, recommendations and steering documents to provide equal services in the entire country. The focus is on three main areas: psychosocial health, developmental deviations in child functioning and somatic screening (National Board of Health and Welfare, 2011).
Child Health Services
Employees on the main team in the CHS include nurses, physicians and psychologists. The nurses specialize in pediatric care or primary health care, and the physicians specialize in primary care or pediatrics. The Association for pediatric nurses recommends a full-time working nurse not to have responsibility for more than 60 newborns yearly. On the national level, the general national program for the CHS was withdrawn at the beginning of 2009. The motivation for this cancellation was that it was outdated and a revision is underway (National Board of Health and Welfare, 2011; SOSFS 2008:35). From a future perspective, the National Council for Medical Research argued that to meet the needs in the CHS, efforts should be directed at strengthening parents’ self-confidence, improving competence and increasing families’ participation in preventive activities. Priority should be given to children in need of special support as well as their physical and social environment, and to expanding the collaboration between caregivers (Håkansson & Sundelin, 2000). Previous studies claim that the national guidelines ought to be more specific concerning the performance of the service and that staff experience a gap between policy and practice, creating difficulties when translating policy recommendation into practice (Hagelin, Jackson, & Wikblad, 1998; Hallberg, Lindbladh, Petersson, Rastam, & Håkansson, 2005; Magnusson, Lindfors, & Tell, 2011).
At present the professionals in the CHS have their guidelines in a specific national method book (Swedish Paediatric Society, 2010) with the purposes of giving all professions the same knowledge-based information concerning what is important for providing equal care. However, a recent study including all child health care centers in Sweden showed a great disparity in the range, methods and follow-up of the services provided, despite the description of the CHS as a uniform and equal service across the country (Magnusson, et al., 2011). The national method book is not a law or statute book, but rather a practical guide that presents a basic program. Nearly all children in Sweden aged 0-6 years participate in this basic program, in which the child’s health and
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development are followed through different key ages. During a child’s first year he/she is offered at least five development assessment visits, followed by the rate of one visit a year. In addition to these assessments, the CHS also offers growth checks, a vaccination program and parental support through the years. All the health visits and check-ups with the child are recorded in the national standardized HR, with one section for free text notes. Physicians are involved in the meetings at some of the key ages, but to a lesser extent compared to nurses.
School Health Services
Employees of the SHS are nurses and physicians. Requested nurse competences correspond to specialization in pediatric care or primary care, and it is recommended that physicians specialize in primary care, pediatrics or child psychiatry. The association for school nurses refers to the law to ensure good and safe care and recommend 400 students for a nurse working full time and 4,000 students for a school physician working full time (SFS 1982:763).
The nurses and physicians in the SHS are guided by the national guidelines (National Board of Health and Welfare, 2004) and the Education Act (SFS 2010:800). Previously, the SHS was an independent service but since July 2011 it is organized and included in the School Health and Welfare Services. According to the revised Education Act all students, in addition to the school physician and nurse, have access to a psychologist, a counselor and pedagogical competences in special education. All these professionals are included and organized within the School Health and Welfare Services (SFS 2010:800), which mainly work to promote health and prevent illness among students. The law emphasizes that the gathered competences should support students in achieving their education goals. This postulates a high degree of collaboration between the professionals (SFS 2010:800). It is also crucial that the School Health and Welfare Services collaborate with external authorities, such as Social Service as well as Health and Medical Care. Students are offered at least four health visits over their school years, three during comprehensive school and one in upper secondary school. The planned health visits include check-ups, e.g. of vision, hearing and growth, as well as health dialogues. Besides the planned health visits, other limited tests and smaller interventions are performed. The School Health and Welfare Services contribute to supporting students’ work environment as well as the school’s value system and specific responsibility for ensuring healthy and safe growth conditions (SFS 2010:800).
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Health work in Child and School Health Services
“The health of the unity is the health of the community” F. Nightingale 1893 The activities of the care provided by the CHS and SHS are nursing-based, albeit in collaboration with physicians; the nurses are the key actors. The health work of nurses and physicians encompasses nursing, medicine and public health work. The professionals work with promotion and prevention on an individual level and with promotion, prevention and protection on a societal level (National Board of Health and Welfare, 2004; Olander, 2003). Health promotion belongs to the salutogenic perspective, i.e. strengthening the healthy factors and being aware of people’s resources (Antonovsky, 1979; M. Eriksson & Lindström, 2006; World Health Organization, 1986). Good care provided to all individuals is the highest priority of the disciplines. Based on a humanistic view, the focus of the health-promoting work is on the individual and on understanding his/her world and its relation to health, illness and suffering, instead of focusing on problems and diagnoses (Meleis, A.I. 2005). The traditional perspective on health is the pathogenic view: signs of health problems which lead to preventing disease. Examples of prevention work could be: the work with passive smoking among children with smoking parents (Carlsson, Johansson, Hermansson, & Andersson-Gäre, 2011) and health education in school concerning e.g. responsible relationships to avoid substance use and unplanned pregnancy. In addition to promotion and prevention work, the public health work includes the concept of protection, e.g. from environmental hazards.
Early child development is a determinant of health, wellbeing and learning skills across the life course. It stresses the importance of the early detection of delays and malfunctioning, which is one of the main missions of the CHS and SHS, with the purpose of implementing early child interventions (National Board of Health and Welfare, 2004; National Board of Health and Welfare, 2011). In accordance with systems theory (Wachs, 2000), it is important to include information about children’s abilities and skills, as well as their interaction with peers and environmental factors such as the family and preschool/school settings to detect malfunctioning. Successful early intervention requires the collaboration and coordination of different services (Björck-Åkesson & Granlund, 2005; Wachs, 2000). Contributions from each context have a cumulative effect and increase the child’s social competences (U. Eriksson, Hochwalder, Carlsund, & Sellström, 2011). Coordinated interventions within the family, at preschool and at school are expected to have the best effects on a child’s mental health (Bremberg, 2000; Lagerberg, Magnusson, & Sundelin, 2011; Stewart-Brown, 2008; Zimmermann, Eisemann, & Fleck, 2008).
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In Sweden, the term for collaboration of a team is commonly called “cross- professional” teamwork. However, this does not reveal how the teamwork is organized or the degree of integration between the collaborating professions. Collaboration between professionals can also be described through prefixes, e.g. multi-, inter- or trans- professional. These express different degrees of integration between the collaborating professions. Multi-professional collaboration work indicates the lowest degree, e.g. sharing information with each other; in inter-professional collaboration, as expressed by Thylefors (2005), “the product is more than the simple sum of its parts” (p 104); and finally, trans-professional collaboration can be described as an integrative work process in which disciplinary boundaries are partly dissolved, i.e. the highest degree (Thylefors, Persson, & Hellström, 2005). Nurses and physicians in the CHS and SHS collaborate with several other professions, e.g. psychologists, social workers, dieticians and teachers at preschool and school. One of the important challenges of inter-professional teamwork is to take care of each other’s competencies, and difficulties could include managing the individual professional identities and the team processes (Kvarnström, 2008; Morberg, Lagerström, & Dellve, in press).
The view on knowledge is an integrated and complex part of society, and is expressed in different kinds of steering documents for professionals within health and medical care. The rapid knowledge development demands that clinicians have good knowledge. The Swedish Council on Technology Assessment in Health Care (SBU) introduced the concept of evidence-based health care, which has also been adopted by the National Board of Health and Welfare as well as the Swedish Society of Nursing. Evidence-based health and medical care is described as both an approach and a process. To link evidence- based research into practice demands efforts from the organization and management levels and is also influenced by the culture in which the leader operates. It requires e.g. basic skills in research methods (Wallin & Ehrenberg, 2004; Morberg, Lagerström, & Dellve, 2009). It is also the responsibility of the professionals to independently search and stay up to date on new knowledge, as well as to be active in developing a core of research-based professional knowledge (International Council of Nurses, 2006). The prerequisites for evidence-based practice among professionals are perceived as good, but require both organizational and educational efforts (Heiwe et al., 2011; Sandström, Borglin, Nilsson, & Willman, 2011). The CHS and SHS are responsible for ensuring evidence-based care in accordance with science and well proven experience. Besides the need for lifelong learning and time for critical reflection among professionals, reliable documentation improves the prerequisites for the development of evidence-based work in the CHS and SHS (Håkansson & Sundelin, 2000; Morberg, et al., 2009; National Board of Health and Welfare, 2011).
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The documentation Documentation can be seen as a tool both for keeping people informed about what has been done within an organization, and for steering what the organization does or produces in a certain direction. In dynamic systems theory, forces that pull or steer a system in a certain direction are called attractors. The documentation requested in a service system can be seen as an attractor. The information provided in documentation in service organizations is supposed to affect services in the direction of their established goals. In health services, the main purpose of documentation is to collect and communicate relevant information in order to accomplish continuity and safety in the care provided. The requested content should reflect what is relevant. Another important purpose of documentation concerns the legal requirements and obtaining the information necessary to steer the health care services in a specific direction. Several factors besides the planned intentions and that are not always visible, such as traditions and values, will also affect the content and form of documentation (Schalock, 1994; Wachs, 2000).
Regulations for documentation
According to Swedish law, all health activities in the Health Care Services must be recorded. Professionals are obligated to document in an individual health record, primarily to ensure the safety and quality of the health care provided (SFS 2008:355). The operation manager is responsible for ensuring that an appropriate quality system is in place and for continuously guiding, following up, developing and documenting the activities in the service (SFS 1982:763). The documentation must be designed for use in the systematic quality work, such as the further development of methods and routines as well as the follow- up of goals and results (SOSFS 2005:12). The routines for documentation should ensure to the highest degree possible that the information is documented with the aid of nationally established concepts and terms, classifications and other code models (SFS 2008:355). All health care personnel also fall under the Principal of Public Access to Official Records, which among other things forbid the supplying of documentation without the consent of the individual (SFS 2009:400).
Documents in the Child and School Health Services
The respective HRs in the CHS and SHS have undergone national harmonization and standardization for many years. The national standardized HR in the CHS originates from the beginning of the 1980s, and shortcomings
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led to a revised version in 2000 (Hagelin, et al., 1998). The national standardized HR in the SHS is from 1989 and was revised 2001, due to updated growth data. In addition to the HR, the CHS uses national questionnaires to screen children’s language development and mothers’ mental health (Lagerberg, et al., 2011). In addition, various locally produced assessment questionnaires are used by the CHS and SHS in health dialogues and to screen children’s health and development (Golsäter, Sidenvall, Lingfors, & Enskär, 2011; Johansson & Ehnfors, 2006; Reuterswärd & Lagerström, 2010). How the content and outcomes of these health questionnaires are documented varies locally, and is not clearly defined from a national legal point of view.
The HRs in both the CHS and SHS are divided into one standardized part and one part for free text notes. The standardized part is structured with boxes, columns and diagrams with specified areas. The requested information in these areas relates to background variables, growth, vision and hearing, the screening of developmental milestones performed at key ages (only CHS), issues within health dialogues, parent support in group (only CHS), vaccination (only SHS), health problems and health status. The continuity of the health work demands that health information in the HR be transferred from the CHS to the SHS at school start. Routinely in Sweden, after consent from caregivers, the health record is transferred from the CHS to the SHS when the child starts school (SFS 2009:400). After the individual’s final year of school, the record is archived.
Quality of the documentation in the health record
The HR is an important tool for the documentation of an individual’s health. It provides essential information for the communication among professionals within and between health services. There are also requests from decision- makers for aggregated data on local, regional and national levels concerning children´s health. The rapid development of information management systems and the transition to an electronic version of the HR have increased the challenges, such as to improve interdisciplinary collaboration, exchange information, ensure confidentiality and facilitate the evaluation of the care provided (Anderson, 2005; Cowell, 2010; Green & Thomas, 2008; Hinman & Davidson, 2009; International Council of Nurses, 2006). Nurses’ and physicians’ views on the electronic version of the HR differ: nurses are more positive to an electronic version (Krog, 2009; Weiner et al., 1999). They spend more time handling patient information compared to any other professional group. However, the electronic version of the HR demands that all professional groups describe their contribution to the individual’s health and define the information to document to provide the care. Developing an electronic version of the HR demands new thinking and creativity and a relinquishment of interest
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groups’ territorial thinking (Green & Thomas, 2008; Morberg, et al., 2009; Ruland, 2002).
It is already known that Swedish documentation presents problems regarding incomplete and ambiguous information, comprising both how and what is documented as well as the extent of the documentation in relation to the services provided (Ehrenberg & Ehnfors, 2001; Hagelin, et al., 1998; Hagelin, Lagerberg, & Sundelin, 1991; Törnvall & Wilhelmsson, 2008). Information concerning psychosocial issues among children is often missing in the documentation (Clausson, Petersson, & Berg, 2003). Reasons for these shortcomings are mainly organizational, such as lack of knowledge regarding writing the documentation, lack of structured models and classification systems, ethical issues and perceived waste of time (Clausson, et al., 2008a; Hagelin, 1999). Nursing documentation is utilized by physicians as a source of important information, but studies confirm a lack of essential facts as well as a need for greater clarity and additional information (Green & Thomas, 2008; Törnvall, Wahren, & Wilhelmsson, 2007). The documentation requires that the language used by the professionals be expressed without misconceptions and be more structured to improve the quality of care (Björvell, Wredling, & Thorell- Ekstrand, 2003; Ehrenberg & Birgersson, 2003). Concepts such as construct, validity and reliability are important for securing the quality of the information gathered (Clausson, et al., 2003; Ehrenberg & Ehnfors, 2001; Hagelin, et al., 1998; Hagelin, et al., 1991; Törnvall & Wilhelmsson, 2008). Access to information is a prerequisite for knowledge development, and subsequently the content of information has to mirror relevant perspectives on children’s health (Hagelin, et al., 1998; Hörnfeldt, 2009).
The nurses and physicians in the CHS and SHS perform the documentation in a coherent health record, which demands uniform terminology in order to be clear and understandable to all users as well as the child and her family. The ICF-CY provides a common language for multi-professional use within and between different sectors (World Health Organization, 2007). The ICF-CY is in Sweden mainly applied within interdisciplinary teams in habilitation services, and is used in documentation to ensure all perspectives on health and functioning (Adolfsson, Granlund, Björck-Åkesson, Ibragimova, & Pless, 2010; Björck-Åkesson et al., 2010). In the present thesis the ICF-CY, as a tool for a common language, will be investigated for its utility in profiling the content regarding a biopsychosocial perspective in documentation in the CHS and SHS.
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International Classification of Functioning, Disability and Health – Children & Youth version (ICF-CY)
The ICF-CY reflects a systems theory perspective with a dynamic complex relationship and interaction between the child’s health, development and environment. It provides a coherent view on different perspectives on health such as biological, psychological and social perspectives (World Health Organization, 2007). The ICF-CY framework depicts essential concepts to consider in the lives of all people and acknowledges health, functioning, life quality and development as intertwined (McDougall, Wright, & Rosenbaum, 2010). The use of the framework in the ICF-CY emphasizes the child’s functioning and enhanced participation in daily life (Simeonsson, 2009). The ICF is a tool that can facilitates the decision regarding what to assess concerning the child´s health but not how to do it (Allet, Bürge, & Monnin, 2008).
The ICF-CY - a standard framework
The ICF-CY is a universal health classification system and a standard framework available for documenting children’s health, development and wellbeing from birth through 17 years of age. It is a derived version of the adult version, the ICF (2001), and includes all the content of the adult version as well as additional content to cover development characteristics of children. The child´s ongoing interaction with the environment, described in the ecological model by Bronfenbrenner (Bronfenbrenner & Ceci, 1994), guided the addition of content to the child version of the ICF (Simeonsson, Sauer-Lee, Granlund, & Björck-Åkesson, 2010). The ICF-CY belongs to the family of international classifications developed by the WHO, which also includes e.g., the International Classification of Diseases (ICD-10). When the ICF-CY became available for worldwide use in 2007, it was anticipated to be broad (Cieza, Bickenbach, & Chatterji, 2008). Its aim was to provide a unified, standardized, common language and framework for the description of health and health-related states, and it is purported to be useable across cultures (World Health Organization, 2007). The ICF-CY is a taxonomy designed to document the characteristics of developing children for multiple purposes, such as use in program planning, surveillance and research, as well as the documentation of intervention outcomes in any setting and country. It provides a universal language and application for clinicians, educators, researchers, administrators, policy-makers and parents to describe the functioning of all children and youth in relation to their growth, health, wellbeing and development (Simeonsson, 2009). The ICF-CY uses a bio-psychosocial approach to health to capture different perspectives on children’s functioning, whereby the bio stands for the child’s physical or bodily health and the
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psychosocial for the individual and social perspectives on health (World Health Organization, 2007).
Health professionals from different fields have looked at the framework of the ICF-CY from different aspects of validity, e.g. the content perspective and its relationship to other health-related concepts. The main results show that the classification fulfills the formal criteria of exhaustiveness. There are ongoing validations concerning the need for differentiated content, which today is linked to the same category level (Cieza & Stucki, 2008). The ICF-CY can advance evidence-based practice such as the provision of a basis for differentiated assessment and support services on the basis of functioning profiles. The ICF-CY, with its bio-psychosocial approaches, is meant to supplement classifications such as the ICD-10 (World Health Organization, 2007).
The structure of the ICF-CY
The structure of the ICF-CY consists of a theoretical model and a classification system. The ICF-CY model is based on a theoretical approach to health, and provides a systemic perspective and a holistic view on describing functioning of all children. It is an interactive model considering a complex relationship between the child functioning in daily life, his/her health condition and contextual factors. Children with the same diseases or disorders describe different experiences of their functioning in everyday life situations. Hence, descriptions of functioning are needed from different perspectives to get a holistic view on health. For this purpose, the theoretical model of ICF-CY illustrates the complex relationships between six dimensions. These dimensions are I) the health condition in relation to II) bodily factors, i.e. Body Functions and Body Structures, where “body” refers to the human body as a whole and includes the brain’s function, i.e. the mind; III) Activity the execution of a task or actions by the child; IV) Participation involvement in a life situation; and contextual dimensions such as V) Environmental Factors and VI) Personal Factors.
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Health Condition
Body Functions and Structures Activities Participation
Environmental Factors
Personal Factors
Figure 1. The interactions between the components of the ICF (WHO, 2007, p.17).
The Environmental Factors and Personal Factors belong to the complex context of the child’s life and, as such, have an impact on his/her functioning. The Environmental Factors consist of information on health within the individual, as well as the societal and attitudinal environment. The sixth dimension in the integrative model is Personal Factors, which provide the background on the child such as age, gender and social status (World Health Organization, 2007).
Beyond the bio-psychosocial model the ICF-CY provides a classification, built as a hierarchical system, from low to high level of detail, by organizing information on health into four interacting components designated by letters: Body Functions (b), Body Structures (s), Activities and Participation (d), and Environmental Factors (e). Compared to the theoretical model the bodily factors are divided into two parallel components, Body Functions and Body Structures. Also, in the classification the dimensions of Activity and Participation are merged into one component, Activities and Participation. The dimension of personal factors is not at all included in the classification, due to the great social and cultural variance across countries (World Health Organization, 2007).
The components are classified based on the ICF-CY categories, a total of 1,684 codes (Simeonsson, et al, 2010). The categories are organized within a hierarchically nested structure with up to four different levels, and are denoted by unique alphanumeric codes. By linking health data to the ICF-CY codes within the components, it is possible to generate knowledge on how health data can be used in profiling children’s health in terms of biological, individual (psychological) and social perspectives on health in relation to everyday functioning. Information on health within the Body Functions component includes, e.g., sleep
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118 cat. 56 cat.
351 cat. 166 cat.
54 cat. 99 cat.
functions, height and emotions. Other examples of information on health that belong to the anatomical part of the body such as teeth, fontanel and hip joint are linked to the Body Structures. The Activities and Participation component includes individual activities such as learning to read, write and calculate as well as fine motor skills. It also includes the societal perspectives on functioning, e.g., interacting with friends and playing together. Environmental Factors include physical, social and attitudinal aspects. Each component is organized into a number of chapters and different levels of categories where the health information is described. It is recommended that certain guidelines and rules be followed during the linking procedure (Cieza et al., 2005; World Health Organization, 2007).
ICF-CY
Part 1 FUNCTIONING/
DISABILITY
Part 2
CONTEXT
Component level
Comp. 1 BODY
FUNCTIONS
Comp. 2 BODY
STRUCTURES
Component 3
ACTIVITIES/ PARTICIPATION
Component 4
ENVIRONMENTAL FACTORS
PERSONAL FACTORS
1st level
2nd level
3rd level
8 chapters 8 chapters 9 chapters 132 categories 394 categories
5 chapters 74 categories
185 categories
4th level 17 categories 9 categories Figure 2. The hierarchically nested structure of the WHO International Classification of Functioning, Disability and Health, version for Children and Youth (ICF-CY). Adapted from Adolfsson (2011).
Limitations and critical comments
The ICF-CY is limited by the exhaustive, complex, comprehensive original volume of codes (WHO, 2007) and consequently time required to use it. This argues for the necessity to develop more practice-friendly tools (Adolfsson, et al., 2010; Ellingsen, 2011; Pless, Ibragimova, Adolfsson, Björck-Åkesson, & Granlund, 2009). Further critical comments on the framework include definitions of key constructs and concepts. Nordenfelt (2006) questions the relevance of the ICF´s inclusion of too much health- related content and
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suggests that some content within the Activities and Participation component lie partly outside the proper domain of health (Nordenfelt, 2006). On the other hand, several researchers claim that the Activities and Participation component contains crucial constructs, but recommend the provision of more conceptual clarification (Badley, 2008; Granlund et al., 2012; Whiteneck & Dijkers, 2009). According to Granlund (2012), there is a lack of a subjective dimension of functioning such as the individual’s own experiences of involvement (Granlund, et al., 2012). Some critical comments regarding the Environmental Factors component claim that the descriptions are on a too-low level of detail (Whiteneck & Dijkers, 2009). There are also proposals that the ICF be expanded to also include Personal Factors and a dimension of quality of life (McDougall, et al., 2010).
Rationale for the thesis
Declining psychosocial health and wellbeing as well as increasing psychosomatic symptoms are trends among Swedish children and young people today (Barnekow & Muijen, 2009; Clausson, et al., 2008; Swedish National Institute of Public Health, 2011d) but there is sparse research regarding the content of documentation in the CHS and SHS in relation to these trends. Previous studies have focused on structure and clarity of documentation, and reveal deficiencies in the HRs that indicate that they contain incomplete and ambiguous health information (Clausson, et al., 2003; Hagelin, et al., 1998). When health information is transferred, this causes a potential health risk of faulty assessment and endangers the correct evaluation of the care needed (Ehrenberg & Ehnfors, 2001; Törnvall & Wilhelmsson, 2008). The services have asked for help with national coordination in the development of an agreed-upon model for electronic recordkeeping and transfer of information. In addition, previous research has shown that school nurses expressed difficulties documenting psychosocial health (Clausson, et al., 2003). Therefore, access to content information in documentation with high validity is an important prerequisite for the care provided and for contributing to knowledge development.
According to the WHO, the ICF-CY health classification provides a common language and advances evidence-based practice. It is the only health classification that can be used as a guide holistically and inter-disciplinarily (World Health Organization, 2007). So far, the ICF-CY has been used for children with disabilities. If it can be useful with its conceptual framework and common language for all children, not only those with disabilities, the ICF-CY can contribute to exposing different perspectives on health.
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The rapid development of the use of a coherent electronic version of the HR means that multi-professional and inter-disciplinary care will be reflected in the documentation. This is a challenge for all professionals, and in this thesis it concerns the nurses and physicians in the CHS and SHS. They are included in teams together with psychologists, dieticians, social workers and preschool/school teachers, all working with children’s health and wellbeing. It is necessary to obtain a complete picture of children’s health because of the indication that psychosocial health among children and youth is declining. The requested information in the documents used in the CHS and SHS guide the professionals’ work in specific directions, which means that all perspectives on health – physical as well as psychosocial – must be included in the content of documentation. More knowledge is needed to determine whether the documentation of health reflects a holistic view with the purpose of achieving high content validity and quality of the child’s health on an individual as well as a population level. Regarding children’s right to be responded to through a holistic view on their health, there was a need for investigation and analysis of the content of information in the documents used in the CHS and SHS, to determine whether the services live up to the requirements.
Aim The overall aim was to analyze whether the documentation used by the Child and School Health Services reflects a holistic view on health as represented by a bio-psychosocial perspective.
The objectives were to:
• investigate the content of information on children’s health in the
documentation (Studies I, II, III)
• investigate nurses’ and physicians’ views on the documentation of health information and on the electronic version of the national standardized HR (Study IV)
• explore the utility of the ICF-CY as a tool for analyzing whether the
documentation reflects a holistic view on health (Studies I, II)
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Method Design
All studies were based on a descriptive design. Both quantitative and qualitative methods were used, depending on the research questions. Study I was explorative and based on a document analysis, with an additional aim to investigate the utility of the ICF-CY in linking health data. Study II was also a document analysis based on health questionnaires. The content analysis had a deductive approach using the ICF-CY, on an item-by-item basis in Studies I and II. Hence a quantitative descriptive content analysis design was an appropriate choice. In Study III little was known about the content of the free text notes in HR, so a qualitative content analysis with an inductive approach was chosen (Polit & Beck, 2008). In addition, a quantitative descriptive analysis was executed (Krippendorff, 2004). Study IV was descriptive, and included nurses and physicians from the CHS and SHS. A quantitative method was chosen to investigate group differences concerning views on transferring documentation and opinions on using the electronic version of the HR. An overview of the characteristics of each Study is presented in Table 1.
Participants: suppliers of materials (Studies I, II and III)
In Studies I, II and III, participants contributed by serving as suppliers of materials for analysis; see Table 2. At the beginning (2007) of the Swedish national IS project, the “Child Health Data Project”, a national expert group consisting of nurses and physicians within the CHS and SHS was established by the Swedish Association of Local Authorities and Regions. The nurses (n=4) and physicians (n=4) were recruited from their respective association. The purpose of the national expert group was to produce one term list each for the CHS and SHS (Study I), with important information of children’s health and development that were recommended to be included in the HRs. Additionally, a regional working group was set up, comprised of nurses and physicians, in total 17, from the services in southern Sweden. The purpose of the working group was to judge the interpretation of some broad and vague descriptions of the essential information using the selected ICF-CY definitions made by the first author.
Table 1. Overview of the characteristics of each study.
Study Title Design Method Data
source/Participants Time of data collection
Analysis
I Mapping of children’s health and development data on population level using the ICF- CY classification system
Descriptive Explorative
Quantitative, deductive content analysis
Lists of health terms compiled by professionals from Child and School Health Services
2007/2008 Descriptive statistics
II Content of Swedish school health questionnaires
Descriptive Quantitative, deductive content analysis
47 health questionnaires used by Child and School Health Services
2009/2010 Descriptive statistics
III Psychosocial health information in free text notes of Swedish children´s health records
Descriptive Qualitative and quantitative, inductive content analysis
75 health records from Child and School Health Services
2010 Qualitative content analysis Quantitative descriptive analysis
IV Views on health information and perceptions of standardized electronic records among staff in Child and School Health Services
Descriptive Comparative
Questionnaire consisting of 28 structured and semi-structured questions
484 nurses and physicians from Child and School Health Services
2009 Descriptive statistics Group comparison with Chi-squared tests
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Study II involved nurses and physicians who were asked to send one copy of every type of health questionnaire used in screening children’s health and development. A total of 218 health questionnaires were provided. These health questionnaires were recruited from the participants in Study IV.
In Study III, to analyze the free text notes in the HRs, 120 records were requested from a total of 60 nurses. Of the 120 HR that were requested, 75 (63%) were provided. Both a convenience sampling including three neighboring counties in southern Sweden and a dimensional sampling including all age groups and large as well as small municipalities were applied (Polit & Beck, 2008).
Table 2. Participants as suppliers of materials for analyses in Studies I-III.
Study I
Health terms on lists Study II
Health questionnaires Study III
Free text notes in health records
CHS SHS CHS SHS CHS SHS
Participants National expert group n=4
National expert group n=4
375/510 109/280 17/30 21/30
Materials for analyses
124/174* 57/77* 19/25* 123/193* 34/60** 41/60**
* included/collected; ** included/requested
Data collection (Studies I, II and III)
In Study I, the collected data consisted of lists of health terms based on what should be included in the national standardized electronic version of the HR in the CHS and SHS. The lists were developed by the national expert group consisting of nurses and physicians, and were provided by the Swedish Association of Local Authorities and Regions. The health information on the lists was called ‘health terms’, since it was derived from the national IS project. In agreement with the Swedish Association of Local Authorities and Regions and the National Board of Health and Welfare, terms concerning interventions were excluded since a Swedish classification system for care interventions has already been developed. Further excluded health terms from the lists before the linking was performed were diagnoses, vaccinations, interventions and personal
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factors such as age and sex. Personal factors like age and sex were excluded because the ICF-CY cannot handle such information in its current form.
In Study II, a total of 218 health questionnaires used within the services in three counties formed the basis of the analyses. Based on screening of health questionnaires, 76 were excluded as they were duplicates (n=65), solely related to the caregiver’s health (n=5), or checklists of vaccinations (n=6). A total number of 142 questionnaires remained for analysis; see Table 2.
The HRs in Study III were obtained from three counties in southern Sweden. Following the approval of coordinators, nurses were selected for the study based on the first 20 nurses per county, in alphabetical order by last name. The inclusion criteria for HRs were that all ages were represented, and that smaller as well as larger municipalities participated. The children were divided into the following groups: 0-2 years (0-24 months), 3-5 years, 6-11 years and 12-18 years. The purpose was to obtain as broad variation as possible of the content of free text notes in the HRs. The coordinators informed 60 nurses by email that they would receive a letter about the survey within a few days.
Data analysis (Studies I, II and III)
To make inferences from the texts, content analysis was applied in Studies I, II and III. The content of the lists of health terms (Study I) and the health questionnaires (Study II) containing information on health and health aspects was readily apparent and needed almost no interpretation of underlying meanings. As the ICF-CY guided the data collection in Studies I and II and the content was on a low level of abstraction a deductive, manifest content analysis was performed. Since little is known about the content of the free text notes, a content analysis with an inductive approach was chosen (Study III). The free text notes consisted of short sentences and revealed no deeper meaning related to the topic, so a manifest analysis was chosen. The labeled categories answered the question of what the content of the health information contained in the free text notes.
In Study I, one list of health terms each from the CHS and the SHS formed the basis of the analyses. The procedure was divided into different steps: reviewing, linking health terms to the ICF-CY codes, verification and continued linking of health terms. The lists were reviewed and refined. Further, medical diagnoses belonging to the ICD-10, different types of vaccinations and heredity were excluded. Guidelines and rules for the linking procedure will be explained later in this text.
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In Study II, a total of 142 health questionnaires were included for analysis. In the health questionnaires, demographic variables such as sex, birth date and address were excluded. The health questionnaires were designed for different ages and school years and where thus divided into established age groups (Simeonsson, 2006). Since only two health questionnaires for children aged two years and younger were identified, an age group of 0-5 years was created. After analyzing 47 questionnaires and linking their health items to the ICF-CY, saturation had been reached (Polit & Beck, 2008). To ensure the saturation, the remaining 95 health questionnaires were screened visually. Both focus of content and target groups differed between the health questionnaires. Two common foci of the content were the assessment of health in general, and speech/language. The target groups of the health questionnaires are presented in Table 3.
Table 3. Distribution of analyzed health questionnaires (n=47).
Target group (respondents) Focus of health questionnaire
Age groups
Profes- sionals
Care- givers Children
General health
Speech/ Language
0-5 15 4 - 8 11
6-11 1 11* 6 18 -
12-17 - 5 5 10 - *One of the 11 health questionnaires was directed at both the caregivers and the child.
In Study III, the software program ATLAS.ti was used for storing, ordering and retrieving the information (Krippendorff, 2004). All content analysis is guided by research questions, and the main question was “What is the content of health information in the free text notes in children’s HRs?” To get a sense of the whole picture within the text in each HR, the text was read several times and the descriptions in the Krippendorff analyzing model were followed in different steps (Krippendorff, 2004). Due to the lack of knowledge of what information was contained in free text notes the approach was inductive, in that the codes were developed through a close reading of the records. The analyst’s interactions with the data revealed subcategories and categories.
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Linking data to the ICF-CY (Studies I, II and III)
Guidelines and rules for linking
The data analysis followed the linking steps based on ICF-CY guidelines for assigning codes (World Health Organization, 2007). In addition to the WHO guidelines, eight validated linking rules developed and refined by Cieza (2005) and her colleagues were used when linking information on health to codes in the ICF-CY; see Table 4 (Cieza, et al., 2005).
Table 4. Eight specific rules for the linking of health information in documents to codes in the classification (Cieza et al. (2005), adapted and abbreviated).
Linking rules
Content of the rules
1 To have acquired good knowledge about the whole framework 2 To link each meaningful concept to the most precise category 3 Do not use the so-called “other specified” categories 4 Do not use the so-called “unspecified” categories 5 If a meaningful concept is not sufficient for making a decision
about the most precise category, the meaningful concept will be assigned nd (not definable). Special cases of this rule: nd-gh Not definable - General health nd-ph Not definable - Physical health nd-mh Not definable – Mental health nd-qol Not definable – Quality of life
6 Personal factors such as gender, age, heredity, social background etc. will be assigned pf
7 If a meaningful concept is not contained in the classification and it is not a pf, it will be assigned nc (not covered)
8 Diagnosis or health conditions will be assigned hc (health condition)
According to the WHO the linking process follows three steps, the first of which is to identify which of the components Body Functions (b), Body Structures (s), Activities and Participation (d) and Environmental Factors (e) the health term belongs to. The categories are denoted with unique alphanumeric codes,
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making it possible to classify on both an individual and a population level. When the component with its corresponding letter is found, the second step consists of finding the chapter corresponding to content relevant to the given component. The third step involves selecting the appropriate level category for the health term. The implemented detail level of classification depends on the clinical needs presented. For example, to link the health item “seeing”, the first step is to identify the component to which it belongs. “Seeing” is a physiological function, and hence belongs to Body Functions (b). Secondly, the most appropriate chapter in this component is called “Sensory functions and pain”( b2) on the first category level with low detailed grade. Finally, when selecting the appropriate level of category for the health item, seeing functions are found on the second level and two more detailed alternatives are available on the third and fourth category levels (see Figure 3).
Figure3. The structure of the linking processes. An example of how to link the health term seeing, which belongs to the Body Functions component.
Linking process (Studies I, II)
In Study I the health terms on the lists were linked to the highest level of detail to explore the extent to which it was possible to classify them. During the linking procedure, some of the health terms on the lists appeared to have broad descriptions, e.g. “enjoys the school day”. There is no description in the national guidelines for SHS (National Board of Health and Welfare, 2004) of which content should be included in such health terms. Broad descriptions like the one above were analyzed and linked to relevant ICF-CY definitions of health terms, such as the child’s relations with classmates, engagement in learning, coping with general tasks and demands, etc. These broad descriptions
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of health terms were interpreted into ICF-CY codes. These linked codes with their corresponding descriptions called for verification.
To verify the accuracy of the interpretations a regional working group was established, consisting of 17 professionals in leading roles at the services in three counties in southern Sweden. They reviewed the content of selected health terms with more than one code descriptor. The members of the regional working group received a letter with descriptions of the procedure of the verification of health terms. Each member also received a number of health terms and their descriptions. The descriptions were quoted from the service acts or the ICF-CY’s explanation of the codes. It was requested that the participants answer whether the descriptions of the health terms were correct, partly correct or incorrect. If they deemed an answer partly correct or incorrect, they were asked to suggest a more correct description.
In Study II, the second category level was chosen for the intended aim used for screening children’s health and development. When all health information had been linked, some occurred frequently within and between the health questionnaires and was called “total occurrences of ICF-CY codes”, compared to “specific ICF-CY codes”, which were counted only once.
As recommended by Cieza et al. (2005), health items that were not possible to link to ICF-CY codes were categorized as different categories of “other health information” (Cieza, et al., 2005). Examples of “other health information” included: interventions, additional information (not definable), allergy, diabetes (health conditions), gender, heredity, age (personal factors), thumb-sucking, pacifier use (not covered), perceived health, (not definable-general health), value health (not definable- quality of life).
To compare the results of the different Studies (I, II, III) considering a biopsychosocial perspective, the subcategories in Study III were roughly linked to the ICF-CY.
Participants (Study IV)
All permanently employed nurses and physicians in the CHS and SHS in three counties were invited to participate in Study IV. Convenience sampling was used, including neighbor counties in southern Sweden. Of the 240 nurses and 243 physicians in the CHS, 162 (68%) and 84 (35%) were willing to participate. Of the 270 nurses and 37 physicians in the SHS, 213 nurses (78%) and 25 physicians (68%) participated.
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Data collection (Study IV)
For the purpose of Study IV a questionnaire was constructed. It was tested in the field for feasibility and evaluated individually by eight professionals. After this review, the wording of some of the questions was revised to reduce ambiguity and improve readability. The questionnaire consisted of 28 questions, some structured and others semi-structured, with space for comments. The comments did not prove to be important for the result. The 28 questions covered demographic data (n=9), transferring HRs and health information within and between the CHS and SHS (n=11), and the professionals’ perceptions of a national standardized electronic HR (n=8).
The coordinators of the CHS and SHS were informed about the survey and were asked to distribute a list of people in leading positions at the services in each municipality. These people were asked to distribute the questionnaires to each nurse and physician at their local organization. A postal letter with informed consent was distributed, also containing a postage-paid envelope. Each questionnaire was coded by letters: one signifying county, one signifying CHS or SHS, and one signifying municipality. Of 790 distributed postal questionnaires, 484 had been completed (61%) and returned after two reminders. External dropout was high among the physicians within the CHS, with a response rate of 35%.
Data analysis (Study IV)
In Study IV, the questions in the constructed questionnaire with a four-grade ordinal scale (totally agree, partly agree, partly disagree and totally disagree were transformed into dichotomous variables (agree and disagree). The data were analyzed using the statistical software Statistics 17.0. The dichotomous variables and questions that were ranked for group comparison were analyzed for group differences using chi-squared tests. A significance level of p < 0.05 was accepted (Kazdin, 2003)
Ethical considerations
The conducting of research always requires ethical consideration. The studies have considered the four fundamental ethical principles derived from Beauchamps and Childress (2001) – autonomy, beneficence, non-maleficence and justice – which are perceived as universal and timeless in any human culture (Tangwa, 2009). The principles of autonomy were considered in the verbal and written information presented to the informants (Studies II, III & IV) and in their informed consent (Study III). In accordance with the guidelines
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in Swedish law (SFS 2003:460) which are equally central in other regulatory documents (World Medical Association, 1964), the information letter explained the aim and objective of each study, the voluntariness of participation and the right to withdraw without consequences. Two separate information letters, one to the caregivers and one to participants 15 years or older, were used to request permission to collect data from the HRs (Study III). We requested that the informed written consent of the participants (Study III) was to be safely stored at the clinics in the CHS and SHS. All participants (Studies II, III & IV) were informed that the data material would be handled in a way that guaranteed confidentiality. If the participants had any questions or doubts, they could contact people mentioned in the information letter.
Beneficence and non-maleficence are best considered together, as the first does good and the second avoids doing harm. They are complementary principles, and translate into the obligation to maximize benefit while minimizing harm (Tangwa, 2009). The risks of participating in Studies III and IV were considered to be very low. Should a child be recognized in the free text notes (Study III) by one of the participating researchers, the ethical principle of confidentiality would be applied. However, the researchers are not employed in the services, which minimize this risk. Further, the burden of participation for the staff was the time required to answer the questionnaires (Study IV) and to collect the data material (Studies II, III), which exceeded their everyday work tasks. However, the staff’s participation was also an opportunity to actively share their views and opinions on developing a core of research-based professional knowledge (International Council of Nurses, 2006). Justice was demonstrated in that all participants were given the same opportunity to take part. The outcomes will hopefully generate practical beneficence in the future in the CHS and SHS. The primary benefit of the research is theoretical, and contributes valuable knowledge concerning the content of documentation. The results of the studies have been reported to the clinical settings in which they were conducted.
In accordance with Swedish law, ethical approval for the studies in this thesis was obtained from the Research Ethics Committee of Faculty of Health Sciences, Linköping University, Sweden, Dnr: 245-08 (SFS 2003:460). Approval for Studies III and IV was also given by the coordinators of the services.
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Result Content of health information in documentation
In the CHS and SHS, 70% of the codes linked from the produced lists of health terms (Study I) were found in the ICF-CY Body Functions and Body Structures components, i.e. the biological perspective on health. Less than 30% of the codes were found in the Activities and Participation and Environmental Factors components, i.e. the psychosocial perspective on health. Within the components, the identified codes were distributed unevenly among chapters. In the Body Functions component, codes were identified in all chapters. However, one-fourth of the coded health terms in the CHS were found in the chapter concerned mental functions, e.g. self-other relationships, sleep functions and mental functions of language. In the Body Structures component, the majority of the health terms from the CHS were linked to structures related to movement. For the SHS, most health terms were linked to codes with structures related to the genitourinary and reproductive systems. In the Activities and Participation component, most of the health terms from the CHS list were linked to the chapters with topics like learning, communicating and mobility. A few health terms were found in the chapter concerning undertaking single or multiple tasks, carrying out daily routines, handling stress and managing one’s own behavior. The ICF-CY codes based on the health terms from the SHS were mainly linked to codes in the chapters on learning, mobility, and interpersonal interactions and relationships. None of the services contained health terms that could be linked to the chapter on domestic life (e.g. setting the table, making one’s bed). Approximately 40% of the health terms linked to codes in the Environmental Factors component were linked to codes in the chapter, concerning products and technology. Among other things, this chapter deals with food, including breast milk, beverages and medications. Also, in this chapter, health terms were linked to codes dealing with products and technology, e.g. for personal use in daily living, play, communication and other aid.
In the locally produced health questionnaires (Study II), for all age groups, the linked health items counted only once were distributed in the Activities and Participation component (39%), followed by Body Functions (34%), Environmental Factors (19%) and Body Structures (7%). The content of health items occurring in at least 50% of the health questionnaires was found for the 0-5-year age group in the Activities and Participation component. The most common health items were related to the child’s ability to communicate verbally, e.g. express him/herself with words, sentence structure, correct word order, and the process which the child is acquiring or has acquired language, e.g.
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understandable speech and language. For the 6-11-year age group, frequently requested health information belonged to the Body Functions component and related to pain functions such as headache, stomach ache and back/neck/shoulder pain. It was followed by health items related to taking care of one’s health, as defined in Activities and Participation, closely followed by issues associated with the school education. Health items within Environmental Factors were also common, and the single most frequently occurring ICF-CY category was issues relating to the child’s and his/her family’s diet, such as nutrition content, regular meals and beverages. The most requested health items within the 12–17 year age group related to Activities and Participation, and also dealt with issues in the category associated with taking care of one’s health. The second most common group of health items was defined in Body Functions and related to pain functions such as headache, stomach ache and back/neck/shoulder pain. This was followed by a group of requested health items in the Environmental Factors component relating to the same issues as for the 6-11-year age group, i.e. the child’s and his/her family’s diet. The analysis of the text in free text notes in the HR (Study III) in the CHS and SHS yielded seven categories with associated subcategories. The categories were: development, family, health problems, living habits, medical issues, preschool/school and leisure and wellbeing. The content of the free text notes included general information, children’s health status and problems specific to the child. The categories were represented across all age groups, but were unevenly distributed. Nearly all health information documented in free text notes was included in the national standardized part of the HR for the CHS as well as the SHS. However, a lack of certain subcategories deserves mention. The standardized part of the HR in the CHS does not include information like general health or emotions/mood in the wellbeing category. Likewise symptoms such as pain within the health problems category are not included in the standardized part of the HR. Furthermore, issues that may indirectly influence children’s health and wellbeing, such as the mother’s mental health or medical problems are also information that is not standardized. The standardized part of the HR in the SHS does not include information such as enuresis in the category of development or pain, distress and concentration in the health problems category. Also lacking in the standardized part of the HR were issues described in the free text notes such as leisure activities, emotions and sexual habits.
To get an overview of the health information documented in free text notes in the HRs, the subcategories were linked to the ICF-CY. The purpose was to get a picture of how the content was distributed across the components and make it comparable with the health data in Studies I and II. Of the 39 subcategories 35 were distributed in the four components: Body Functions (n=11), Body Structures (n=3), Activities and Participation (n=13) and Environmental Factors (n=8). Additionally, four linkages were not related to any component but rather to “other health information”. The main content of the free text notes focused on
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psychosocial health, i.e. belonged to Activities and Participation or Environmental Factors. In conclusion, the results between the three data sets – the lists of health terms (Study I), the health questionnaires (Study II) and the free text notes in the HRs (Study III) – showed different distribution between the components in the ICF-CY regarding physical and psychosocial health (see Figure 4).
Psychosocial health Physical health
Lists with health terms (I)
Health questionnaires (II)
Free text notes in HRs (III)
0 10 20 30 40 50 60 70 80
Figure 4. Distribution (%) of children’s health variables in the three datasets, linked to the ICF-CY. Physical health is represented by the ICF-CY components Body Functions and Body Structures, and psychosocial health is represented by the Activities and Participation and Environmental Factors components.
Views on health information in documentation
In Study IV a majority of the nurses and physicians in the CHS and SHS agreed that the HR system they used fulfilled their needs to perform documentation, and were satisfied with the transfer of HRs; more in the CHS than the SHS (p < 0.05). The transfer to other cooperation partners within the municipality and council also functioned satisfactorily; however, there were nurses and physicians who disagreed with this. A majority ranked a personal handover as the most common way to transfer HRs within the municipality, regardless of which type (paper or electronic) of HRs the services used.
A majority of the respondents agreed with the statement that more health information than what was written in the HRs was transferred between the CHS and SHS when children began school. The SHS participants agreed with
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this to a greater extent than did those from the CHS, and nurses more than physicians (p < 0.05). When a need arose to get supplementary health information, in addition to what was written in the HRs, both within and outside the municipality nurses and physicians in the SHS agreed to a larger extent than nurses and physicians in the CHS (p < 0.05). In the respondents’ ranking of the most commonly transferred additional information, first ranked was family function, second social health function and third psychological/mental health. The SHS ranked social health function higher more often than the CHS did (p < 0.01). Nurses, more than physicians, ranked psychological/mental health as the most common health area in which additional health information was transferred (p < 0.01).
Views regarding an electronic version of the HR
In Study IV, the respondents in the CHS and SHS had positive opinions regarding the possibilities of an electronic version of the HR. In total, the SHS agreed more than the CHS, and nurses more than physicians (p < 0.05). Almost all respondents agreed with the statements that the electronic version of the HR postulates a uniform common language and assigns similar meanings to words when working with, for example, age-specific guidelines for following children’s health and development. The advantages of using an electronic version of the HR were ranked, the highest being “safer documentation” followed by “allows the following of children’s health and development” and third “facilitates evaluation of the services”. More nurses than physicians ranked all three of these advantages regarding the use of an electronic version of the HR (p < 0.05). The disadvantages of using an electronic version of the HR were also ranked, the highest being “unauthorized people can read the HRs” followed by “difficult to standardize children’s health and development” and third “takes a longer time”. More nurses than physicians ranked that the documentation would take a longer time (p < 0.05). A majority in the CHS (93%) and the SHS (96%) agreed that there should be one common electronic version of the HR for the CHS and SHS, i.e. one child (0–18 years) = one HR. More nurses than physicians (p < 0.05) agreed with this. A majority in the CHS and the SHS agreed that caregivers as well as the student should have the right to access the content of the electronic version of the HR. However, one-fourth of those in the SHS disagreed with this.
The utility of linking health data to ICF-CY
The two perspectives on health, physical and psychosocial, could be identified by linking the health information to the ICF-CY. Nearly all of the health information produced on the lists of health terms (Study I) from the CHS and
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SHS judged to be directly related to children’s health could be linked to the ICF-CY. Some of the health terms were represented by multiple codes. The 124 health terms from the CHS were linked to a total of 263 ICF-CY codes. The 57 health terms from SHS were linked to 164 ICF-CY codes. Most of the multiple-coded health terms were linked to body functions, e.g. abdomen, skin tone and respiratory function. Health terms linked to the ICF-CY codes were found from a low to a high level of detail. A low level of detail made them broad and imprecise and required several coding alternatives, e.g. learning and enjoying school. About 80% of the terms were linked to codes on a high level of detail in the ICF-CY.
Health information with similar or identical content was able to be identified, and occurred frequently in the health questionnaires (Study II). Health items revealed a great deal of linkages (n=1000) to the ICF-CY. Of all linkages, 182 were not covered by the ICF-CY, i.e. “other information about health”. These items not covered by the ICF-CY contained meaningful information, such as “Is there anything else that is important for the services to know, such as disability or somatic condition?”, but were not sufficient to make a specific ICF-CY category i.e. “not definable”. Further, all diagnoses were assigned as “health conditions”. Another type of content, not yet included in the ICF-CY, was linked to the category of “personal factors”; it includes family background in terms of late development of language and literacy, and whether the child was born prematurely. The total list of health items linked to 818 ICF-CY codes contained 110 specific codes when each code was only counted once. Table 5 displays the distribution of codes across ICF-CY components in the three age groups.
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Table 5. Requested information about health in questionnaires for children in different age groups linked to total occurrences and specific numbers of ICF- CY codes distributed in the ICF-CY’s components.
Components of the ICF-CY
Numbers of specific ICF-CY codes in different age groups n=110
Total occurrences of ICF-CY codes n=818
0-5*
n=71
6-12**
n=54
13>***
n=54
0-5*
n=302
6-11**
n=281
12-17***
n=235
Activities and 26 19 18 161 102 87 Participation (37%) (35%) (33%) (53%) (36%) (37%)
Body 25 20 22 89 121 103 functions (35%) (37%) (41%) (29%) (43%) (44%)
Environmental 13 13 12 41 54 (19%) 40 factors (18%) (24%) (22%) (14%) (17%)
Body 7 (10%) 2 (4%) 2 11 4 5 structures (4%) (4%) (1%) (2%)
*Age group 0-5 = 19 analyzed questionnaires; **Age group 6-12 = 18 analyzed questionnaires; ***Age group 13 > = 10 analyzed questionnaires
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Discussion
A comprehensive documentation of children’s health, i.e. a holistic view, includes biological as well as psychosocial perspectives. It is necessary that the documentation includes both perspectives to promote health and prevent illness. This thesis shows that information on health in different kinds of documents A) reflected different perspectives on health, partly depending on the child’s age, B) was influenced by traditions and views, and C) showed the utility of ICF-CY as a common language and framework.
Different perspectives on health and age differences
The developed lists of health terms (Study I) recommended to be included in an electronic version of the HR in the CHS and SHS mainly focused on children’s physical health, i.e. a biological perspective on health. The relevance of the unequal relation between the biological and the psychosocial perspectives of the health terms can be questioned. There was a lack of information focusing on protective determinants of health such as coherence, participation and engagement in everyday life. The decisive importance of the environment in a child’s health development is perhaps the strongest determinant in promotion and prevention work with children’s health. The interaction between the child and his/her parents is probably the most important protection against psychosocial illness (El-Khouri& Sundell, 2005; Swedish National Institute of Public Health, 2011a). Previous studies have stressed that the interaction between children and parents, as well as that between the parents themselves, plays a critical role in the development of emotional, social and intellectual skills (L. Eriksson & Löfstedt, 2010; Stewart- Brown, 2008; Zimmermann, et al., 2008). This leads to a suggestion for additional requested information in the standardized part of the HR, which would contribute to a more comprehensive and informative HR. For example, it is well established that there are connections between health and the crucial role of the child’s family, the impact of peer status, achievement and learning in preschool and school settings, and being part of a context (Almquist, 2009; Almqvist, Hellnäs, Stefansson, & Granlund, 2006; Johansson, et al., 2007; Royal Swedish Academy of Sciences, 2010). Truancy among students are often related to learning difficulties and psychosocial problems (Problems within these areas are increasing, and commonly appear as psychosomatic symptoms such as recurrent pain symptoms among young children as well as schoolchildren (Gobina et al., 2011; Hjern, et al., 2008; Petersen, Brulin, & Bergström, 2006). Confirming the determinants behind this is difficult (Hagquist, 2009); however, school stressors and poor quality of life have an impact on psychosomatic
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complaints (Hjern, et al., 2008; Petersen, Hägglöf, & Bergström, 2009). Issues within the mental and pain areas were presented in Study I, but are not included in the standardized part of the HR. These issues are all important parts of the requested information, and should be documented when a child’s functioning is limited due to impaired mental health.
In contrast to the predominant medical content of the lists of health terms (Study I), the analyzed various locally produced health questionnaires (Study II) and information on children’s health in free text notes in HR (Study III) to a larger extent covered psychosocial perspectives on health. The health questionnaires, commonly used as a structured tool in health dialogues (Borup & Holstein, 2010; Golsäter, Enskär, Lingfors, & Sidenvall, 2009; Golsäter, et al., 2011), contained health information related to the child’s development within areas such as communication, emotions, sleep, school environment, psychosomatic symptoms and how to take care of one’s self by healthy living habits. However, the requested information on the lists of health terms (Study I), health questionnaires (Study II) and the content of the free text notes (Study III) still focuses on the child as a person, rather than having the necessary focus on the child within the family and preschool/school settings. One of the main areas to focus on is the child’s participation in the context of everyday life within the family and at preschool/school. When a child enters the social and culture arena of a preschool setting, the focus shifts from his/her body and activities towards interaction with peers and being included in the social context (Björck- Åkesson & Granlund, 2005). These issues are not visible in the documentation, even though in 2010 86% of all children aged one to five years in Sweden attended preschool (Swedish National Agency for Education, 2010).
There was novel information in the free text notes (Study III) that was not included in the standardized part of the HR, and it belonged to the psychosocial perspective on health, i.e. family relationships, general health, pain, emotions (CHS); and pain, distress and concentration (SHS). In the absence of a place to record comments about the child’s health in the standardized part of the HR, the comments should be documented as free text notes in the record. It could be suggested that these issues should also be included in the standardized part of the HR, since they relate to mental health. Of interest in this study (III) was also the finding that even when no health problems were present and the information existed in the standardized part of the HR, documentation of this fact was recorded in the free text notes, e.g. “breastfed only”, “good growth”. Such documentation is unnecessary and inefficient. Previous studies claim that nurses write a huge amount of routine notes in the HR (Hörnfeldt, 2009; Törnvall & Wilhelmsson, 2008). Reasons for these shortcomings might be the fear of not documenting enough and/or that the HR does not fulfill the criteria for a useful tool. According to nurses’
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documentation is time consuming (Clausson, et al., 2008a; Törnvall, Wilhelmsson, & Wahren, 2004).
One of the hallmarks of the Swedish health services is to provide equal and uniform health care. However, the findings in this thesis show that this is not the case today for either the CHS or the SHS (National Board of Health and Welfare, 2011). Since the national basic program in the CHS was withdrawn and the services now work without national direction, the validity of the care provided in general seems to be uneven (Magnusson, et al., 2011).
The extent of the use of locally produced health questionnaires in Sweden is unknown. However, as no existing national evidence-based health questionnaire acts as a supplement to the medical-dominant standardized part of the HR, the services have to create their own solutions. School nurses strive for balance between experienced vague formal goals and strong informal goals, due to the absence of clear formal goals for the SHS (Morberg, et al., 2009). Hence, one way to offer children and their families a more comprehensive core program is to use health questionnaires (Golsäter, et al., 2011; Reuterswärd & Lagerström, 2010). The content of health questionnaires and health dialogues threatens to become arbitrary if the requested information is not based on evidence and is not followed in a systematic way over the years. The SHS needs to rely more on evidence-based methods (Morberg, et al., 2009), and there is ongoing research at both a national and a regional level to develop and evaluate health questionnaires to be used as a tool in health dialogues for school-aged children (Golsäter, et al., 2011; Swedish National Institute of Public Health, 2008).
The results from the studies show that there is a need to develop the content of the national standardized HR with one data set of evidence-based requested information to be followed over the years. With a systems theory approach the documentation, conceptualized as an attractor, will act as a boundary to explain the system’s behavior (Schalock, 1994; Wachs, 2000). Currently, the HR in the CHS and SHS is a tool for navigating the documentation in a certain direction, which is not in agreement with the guidelines in legal requirements or the current health panorama among children. The CHS and SHS are commissioned by the government to organize and offer health care on equal terms, and to provide care with a holistic view on the child and his/her family (National Board of Health and Welfare, 2004, 2009a; Public Orphanage Foundation, 2005). The stability of a system is not an objective in itself; disturbances in balance may be positive (Schalock, 1994; Wachs, 2000) and the time for change seems to have come. Recently, a commission by the government to the National Board of Health and Welfare, along with professional representatives of the services, has aimed to produce national knowledge overviews and guidance for three prioritized areas: mental health/ill health, development
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deviations and somatic screening. A national quality register is requested in order to provide equal care (National Board of Health and Welfare, 2011). The focus of efforts in the services has changed to include more on psychosocial health, but discrepancies between guidance and practice are too great today (Hallberg, et al., 2005).
The requested health information in the health questionnaires was strongly related to the ages of children. For the youngest age group, the requested information was related mainly to communication and verbal speech development for assessing delay. However, the relationship between early language problems and subsequent psychosocial health over time is unclear (Royal Swedish Academy of Sciences, 2010). For the older children, sleeping habits, school education, sensation of pain and taking care of one’s health were considered in the health questionnaires (Study II). Regardless of a child´s age, there are important areas to follow across the years to promote psychosocial health such as: family situation and peer relationships, psychosomatic complaints and pain, depression, ability to maintain attention, lack of wellbeing and problems with behavior and participation in everyday life situations (Almqvist, et al., 2006; Halonen, Aunola, Ahonen, & Nurmi, 2006; Lee, 2011; Swedish National Institute of Public Health, 2011b). These areas, to approach with the right focus depending on the child’s age, would probably generate predictors of subsequent functioning and should be followed in a systematic way across children’s ages.
Traditions and views influence the documentation
There is a strong tradition in Sweden to subject virtually all children to age- specific health and development screening and assessment, with the purpose of discovering early hidden health problems (Hagelin, Magnusson, & Sundelin, 2007; Hörnfeldt, 2009). This formal assessment is performed at the CHS and SHS clinics, with the exception of the first home visit when a child has just been born (Baggens, 2004). If a child is identified as having developmental delays and does not perform activities as expected he/she is referred to, e.g., the pediatric department or habilitation services. The focus on the child’s biological age when evaluating performance is influenced and ruled by traditional routines, values and professional boundaries within the services (Baggens, 2001; Magnusson, Garrett, & Sundelin, 2000; Morberg, et al., 2009). Health problems and developmental delays are detected only to limited extent within the CHS, and misleading assessments are made (Hörnfeldt, 2009; Magnusson, Persson, & Sundelin, 2001; Sonnander, 2000) It is difficult to assess development, as the developmental process is dependent on both biological and social circumstances (Medicinska forskningsrådet, 1999). A child’s performance in one context may differ or not work in another. From a
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systems theory perspective, the assessment and intervention must be brought into the context where the child resides. Today the development milestones are assessed in the clinics, through direct single activities; however, the systems theory emphasizes a co-varying cluster of influences to build the interventions on. In addition, these influences operate against a background of time, and interventions have the purpose of enhancing the operation of positive causal chains (Björck-Åkesson & Granlund, 2005; Guralnick, 2011; Sonnander, 2000; Wachs, 2000). The aim of screenings is to discover at an early stage whether a child is in need of support and help in his/her development; thus, resources must also be available for necessary interventions. It is also necessary to evaluate the interventions to determine whether they have led to any results for the child. For this, a reliable documentation is essential.
The participants in Study IV acknowledged that additional health information besides what was documented in the HR was transferred between the CHS and SHS. The most common additional information transferred to a receiving nurse was related to the psychosocial perspective on health and concerned “family function”. This indicated that the staff worked with psychosocial issues in their clinical practice. From birth until the end of secondary school, staffs have meetings with the child and the family approximately over twenty times. During these meetings, apart from the regular screening and health surveillance, it occurs that the nurse is privy to more or less sensitive information, e.g. the family relationship. This information can be verbally given by the child or a parent, but it can also be in the form of direct observation by the nurse. According to previous studies, common reasons for not documenting psychosocial issues are ethical considerations such as a fear of exposing the families to unintended readers, which may lead to consequences for the family, as well as a fear of misinterpretation and a lack of time and structure. As the respective content of the national standardized part of the HR in the two services is based on a medical view (Clausson, 2008; Hörnfeldt, 2009) and current trends showing declining mental health, staff members make pragmatic decisions about what to deliver. Regardless of the difficulties involved with documenting psychosocial issues including sensitive information, omitted non- written information is a serious problem from a child safety perspective (Tingberg, Falk, Flodmark, & Ygge, 2009). After all, what is not visible in the documentation cannot be regarded as having been done!
Other sensitive issues within the “family function” could be the parental socioeconomic situation. It can be questioned whether and how the services should use parental socioeconomic status in the documentation; however the connection between the parents’ socioeconomic conditions and the child’s health is well established (Currie et al., 2008; Nuru-Jeter, Sarsour, Jutte, & Thomas Boyce, 2010; Turney, 2011; Wallby & Hjern, 2009). Recording socioeconomic conditions is perhaps difficult as it concerns families’ integrity,
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and could be one reason for not documenting; nonetheless, it is important and needs to be transferred. Children living in less favorable social circumstances and with economic stress in the household more commonly have health problems compared to children in socially advantaged groups (Mensah & Kiernan, 2010; Swedish National Institute of Public Health, 2011c; V. Östberg, Alfven, & Hjern, 2006). The services can offer early assessment of parenting stress (M. Östberg, Hagekull, & Hagelin, 2007), and supporting parents in improving the environment their children live in could be one way to enhance the children’s wellbeing (Swedish National Institute of Public Health, 2011c). One way to facilitate the documentation within this area is to determine which important information could be requested concerning domestic life. It is well known that participating in different everyday situations stimulates a child’s development and wellbeing. The results show no information within the area of domestic life in either the standardized part of the HRs or the health questionnaires (Studies I, II). Previous studies also confirm the lack of questions within the domestic life spectrum (Adolfsson, Malmqvist, Pless, & Granlund, 2011). Using a common, unified language may make it easier to bring up sensitive issues and facilitate their documentation.
The prerequisites for improving the documentation are good. In Study IV, the staff within the CHS and SHS had a positive approach to documenting in an electronic version of the HR, which agrees with previous studies (Ruland, 2002; E. Törnvall, et al., 2004). The main advantage of an electronic version of the HR was according to the staff a “safer documentation” followed by “following children’s health and development over time”. Nurses were more positive to a national standardized electronic version of the HR than physicians were. Nurses are the key individuals in the CHS and SHS, meeting the child and the family most frequently, and hence document more often (Krog, 2009; Olander, 2003; Ruland, 2002). The nurses and physicians ranked as the number one disadvantage of an electronic version of the HR that “unauthorized people could read the health records”. This worry that unauthorized individuals will be able to read the HR has also been confirmed in Swedish daily press: a patient has reported to the Data Inspection Board that health care staff read in the patient’s journal about previous occasions of care that had nothing to do with the current occasion (Folcker Aschan, 2012). Staff is only allowed to read a patient’s information if they are providing care to the patient and need information for their work (SFS 2008:355). However, it is easier to track and reveal unauthorized individuals who have been reading an electronic version of the HR compared to a paper version. The second ranked disadvantage of an electronic version was the “difficulty to standardize children’s health and development”. Interdisciplinary collaboration between nurses, physicians, other occupational groups and IT specialists (Green & Thomas, 2008; Krog, 2009) is needed in order to participate actively in the establishment of health care data standards (Spooner & Classen, 2009).
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The electronic version of the HR gives professional groups the opportunity for to integrate and reuse the same information to get a holistic view on health, albeit with different focuses. There was also unanimous consent on the need for a cohesive HR from birth to 18 years of age, which today is not possible due to the law establishing that the CHS and SHS belong to different authorities. These findings are in accordance with the ongoing development work by the National Board of Health and Welfare (National Board of Health and Welfare, 2011). To avoid multiple interpretations, terminology with a uniform description of the health information could help specify what should be documented (Anderson, 2005; E. Törnvall, et al., 2007). A common language in a coherent electronic version of the HR is also what the staff within the CHS and SHS agreed upon (Study IV), and can facilitate the documentation of psychosocial health related to, e.g., a child’s environment such as the family.
The utility of the ICF-CY
The ICF-CY has previously mainly been used for children with disabilities. According to the WHO (2007) it provides a unified, neutral and standard language concerning all children. Hence, it was important to explore the utility of the framework and the common language in the ICF-CY to analyze whether the content of the documentation reflected a holistic view on health. As nearly all children and students meet the CHS and SHS in Sweden today, the documentation constitutes a source of information on their health.
Health variables related to the ICF-CY
The results in the present thesis confirm the utility of the ICF-CY and reveal that a majority of the health terms (Study I) can be linked to the ICF-CY. Different professions in the CHS and the SHS, nurses and physicians, collaborated and developed the lists of health terms (Study I), and the linking of these health terms proves the utility of the ICF-CY as a practical tool that can be used multi-professionally for linking information on health. A majority of the linked health terms were distributed within the body functions component (Study I). The professionals at habilitation services in Sweden perceived the ICF-CY contributed a sharpened focus on participation i.e. a psychosocial perspective on functioning in daily life (Adolfsson, et al., 2010; E. Björck- Åkesson, et al., 2010), which confirms the need to identify health variables to increase the validity of the requested information in the national standardized HR in the CHS and SHS. The ICF-CY has also clarified and improved the quality of inter disciplinary work to include a more systematic approach to
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rehabilitation tasks (Adolfsson, et al., 2010; Ibragimova, Granlund, & Björck- Akesson, 2009; Rentsch et al., 2003).
A majority of the health variables were successfully linked into the conceptual framework and were assigned one or more ICF-CY codes. For obvious reasons some of the health terms were broad, such as abdomen and skin. For these kinds of health variables the professionals need to have several code alternatives. Some health variables – important ones like enjoying school or food – were too broad and must be defined more precisely to minimize the variation in interpretation and facilitate the linking. It is of great importance to be aware that health variables need to be clearly defined and that the professionals put effort into and agree upon their meaning. The degree of reliability lies in the interpretation of the health variables. Unclear and broad descriptions in documentation have also been confirmed in previous studies (Ehrenberg & Ehnfors, 2001; E. Törnvall & Wilhelmsson, 2008).
Different perspectives on health were revealed when the health variables were linked to the ICF-CY framework (Studies I, II, III). Whereas the content of the local various health questionnaires (Study II) and the free text notes in HRs (Study III) focused on psychosocial perspectives on health, the lists of health terms focused on physical perspectives on health. The results call for evidence- based decisions regarding which health variables to include in the respective HRs, to achieve a holistic view on children’s health. This regards also what needs to be documented in a systematic way for the purpose of following children’s health over time and to make evaluation possible. There is an increased demand for follow-ups and outcome measurement systems within the health care system. Since there is no national follow-up system in the CHS and SHS, there is no such evaluation (National Board of Health and Welfare, 2011). Linking health variables to the ICF-CY can provide the possibility to extract children’s health data to support politicians and decision-makers on different levels (World Health Organization, 2007). The framework of the ICF-CY can be used to sharpen the focus in the requested information concerning skills performances, participation and healthy living habits, as well as the child’s interaction with his/her physical and social environment, with the purpose of promoting health.
The need for a common language when documenting in the coherent electronic version of the HR is currently an important issue, considering the expansion of the multi-professional and interdisciplinary work. The meaningful use of an electronic version of the HR and the promise of a standardized data set has been described elsewhere (Bauer, Davies, & Pelikan, 2006; Johnson & Bergren, 2011). The need for a common language is great when transforming the information in the documentation into a standardized language, with the purpose in the long run of developing an evidence-based national data set
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(Anderson, 2005; Johnson, Bergren, & Westbrook, in press). The gathering of various professional skills and the sharing of information increase the holistic view on health from different professional perspectives and can be seen as a great benefit of inter -disciplinary work. Collaboration and the use of a common language can improve documentation and minimize or even avoid duplication, mistakes and delays (SOSFS 2008:14; Thylefors, et al., 2005; World Health Organization, 2007). However, increased cooperation between different professions requires clarity regarding what contributions should be made by the individual trade groups (Morberg, et al., in press).
Limitations of linking health data to the ICF-CY
One limitation of linking some health variables to the ICF-CY categories was that some of the categories were not sufficiently specific. In the Environmental Factors component, the broad definition of some categories consistently led to health variables like food/breastfeeding (e1100), referral/promoting a healthy lifestyle (e580) having too low a level of detail. This limitation was also seen in the Activities and Participation component, where some health variables were given the same code but needed to be separated. In the Activities and Participation component (d) in Chapter 5, Self-Care, under the category “Looking after one’s health” (d570) there are codes for health variables that are commonly used and assessed separately, such as managing nutritious food and maintaining physical fitness (d5701) and getting immunized (d570). Also, in the Body Functions component the emotional functions category (b152) does not differentiate between the most common emotional functions like sadness, happiness and anxiety. These limitations have been reported to the WHO. The organization demands that people who work with the ICF-CY report discovered shortcomings (WHO, 2007) for a future revision of the current version.
Another limitation was that all aspects of the child’s health could not be linked. Personal factors such as age, gender, heredity and social status are included in the theoretical model (see Figure 1) yet are not classified and thus not code- able. For example, the health variable heredity includes information about reading and writing disabilities, language delays and different kinds of diseases among relatives, which are relevant and important when assessing children’s health. The associations between a family’s socioeconomic status and the inequalities of the children’s health are well known and thus a health aspect to consider. Previous studies have identified the need for a category classifying personal factors (Geyh et al., 2011; Jelsma, 2009).
A further limitation is that the ICF-CY is a numerous classification system. It takes a great deal of time to familiarize oneself with how the classification system is built up and to classify the health variables according to guidelines
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and the magnitude of existing codes. Since the ICF-CY classification system is universal and encompasses all aspects of human health and health-relevant issues, it is a by necessity a numerous classification system. This can lead to difficulties in practice, for instance be time-consuming. There is ongoing research as well as projects to adapt the ICF-CY for specific purposes such as core sets, where the ICF-CY categories are related to a specific diagnosis (Cieza 2004), and so-called code sets, including a set of categories most relevant in following children’s development (Ellingsen, 2011) and functioning in everyday life situations (Adolfsson, et al., 2011). It would facilitate matters if the CHS and SHS came to terms with and developed a set of essential health variables linked to codes for all children, in accordance with a holistic view on health, to be included in the electronic HR. However, reductions in the core of the child health promotion program can lead to difficulties in improving health outcomes for children and their families with high levels of needs (Condon 2011), specifically if these reductions include psychosocial perspectives on health.
Methodological discussion
Trustworthiness includes different procedures in qualitative and quantitative research. It is associated with the rigor and trust of the outcome (Polit & Beck, 2008). There are several methodological considerations to be addressed to show strength and limitations of the studies in this thesis. Content validity, external and internal validity, face validity and reliability were considered in the quantitative studies (Studies I, III, IV) and credibility, dependability, confirmability and transferability in the qualitative study (Study III).
Validity and Reliability
There are different kinds of validity and reliability (Kazdin, 2003). The primary meaning of the concept of validity is that a test measures what it is supposed to measure, and reliability refers to the consistency of the measure. It was important to be aware of other factors that could plausibly account for the outcome when linking health characteristics to codes in the ICF-CY (Studies I, II). To avoid threats to content validity, some important issues were considered. First, the lists of health terms were developed by a national expert group recruited from the professionals´ associations, together with the Swedish Association of Local Authorities and Regions, who were considered experts and to have great knowledge about children and their health. However, it was not certain that the lists of health terms represented all important health characteristics or if they were comprehensively included on the lists. Several health terms appeared to have broad descriptions and generated possibilities for
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different interpretations. Therefore, to achieve high content validity a regional working group, including nurses and physicians from the services, was recruited. Attending the regional working group was voluntary, and the professionals who were included seemed to be motivated.
In the linking processes in Studies I and II, the guidelines and rules for linking to the ICF-CY were closely followed to achieve high internal validity. A threat could be that the investigator became more skilled in the linking process over time; to prevent this threat and to achieve high internal validity, the investigator used peer reviewers for consultations.
External validity relates to the extent to which results can be generalized beyond the sample, settings and circumstances in which a study was conducted. The timing of the linking process (measurement) can influence the outcome. It is not only the timing of the linking process (measurement) but also the time factor that can matter. Studies I and II did not take too long to execute, so there were no novelty effects (Kazdin, 2003). The results of Study I were strengthened, as earlier studies have shown results in the same direction. It is possible to question whether the analyzed content in the questionnaires is representative of that used in the CHS and SHS. However, the many duplications and questionnaires with similar content tend to indicate that this is the case at least in the three counties involved.
To assure and evaluate the inter rater-reliability (Kazdin, 2003) in the linking of codes in Studies I and II, the number of corresponding/equal ratings was divided by the total number of ratings and then multiplied by 100. In Study I, a random selection of 30% was obtained from the health term lists and was sent to one rater each for the CHS and SHS. The raters were selected for their knowledge of the classification ICF-CY and experience of earlier linking procedures. The results were 80% agreement for the CHS list and 95% for the SHS list. Reliability has been estimated on the most detailed coding level for each health term. In Study II, the first author and a co-reader author used a selection of six health instruments, two from the CHS and four from the SHS, from the different age groups, and analyzed the reliability of assigning second category level codes to questionnaire items. The inter-rater agreement for the predefined second category level code was 80%. Regarding the inter rater- reliability, the results in Study I were strengthened as earlier studies have shown results in the same direction. It can be questioned whether the analyzed content of the questionnaires is representative of those used in the CHS and SHS. However, the many duplicates and questionnaires with similar content tend to indicate that this is the case at least in the three counties involved
In Study IV, the questionnaire to nurses and physicians was based on the results of a pilot study, which was evaluated individually by eight professionals
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within the CHS and SHS to face validity (Kazdin, 2003). The professionals in the pilot read the questions, made comments if something was unclear, answered the questions and returned the questionnaire. The outcome of the pilot led to the revision of the wording of some of the questions to improve readability and reduce ambiguity. There was a low response frequency from physicians in the CHS, possibly because they perform a considerably smaller part of their work within this service compared with both the nurses in the CHS and the physicians in the SHS. Thirty-five percent of the physicians in the SHS worked more than 60% with this activity, compared with 5% of the physicians in the CHS. Perhaps the physicians in the CHS with few working hours did not prioritize time to reply to the questionnaire – they may not see themselves as part of the CHS organization development. If the content of the questionnaire had been more about the physician’s role within the CHS, the response frequency might have been higher. In addition, in the Swedish system there is a coordinating pediatrician in each county with the role of developing and coordinating activities within the CHS, but this is not the case in the SHS. This may make interest in structural issues less relevant for a physician in the CHS who actually meets with the children. There was also a difference in response frequency between the nurse groups. A possible explanation for this could be that it is more important for the nurses in the SHS to respond to questions because they receive the HRs from the CHS when the child starts school. However, it was a strength that all nurses and physicians in the CHS and SHS in three counties were asked to participate and that the response rate was relatively high.
Credibility, Dependability, Confirmability and Transferability
In Study III, the credibility, dependability, confirmability and transferability were considered. There are different terms for labeling trustworthiness, and a common criterion to confirm the “truth” of qualitative data is credibility (Lincoln & Guba, 1985). In Study III, content analysis with an inductive approach was chosen due to its openness, and with no attempt in advance to search for any certain results. The researchers were curious and open-minded to interpreting the content of the free text notes. Another aspect to point out as strengthening credibility is clarifying the steps taken for the external reader (Polit & Beck, 2008). Other mentioned criteria for developing trustworthiness are dependability, confirmability and transferability (Lincoln & Guba, 1985). Dependability refers to the stability of data over time. One way to prevent threats to the dependability is to have others concur that the results are consistent with the collected data. One researcher performed the first part of the analysis (Study III). To establish confidence in the findings, a senior researcher read and analyzed a selected text separately. An open dialogue was then initiated in order to compare the findings and continue performing the analysis. Confirmability
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refers to the researcher’s neutrality concerning the data and interpretations. However, no researcher can relate to his/her material in a completely neutral way, and every researcher’s background with its advantages and limitations should be kept in mind (Krippendorff, 2004) The researcher who carried out the whole analysis worked as a school nurse, and the senior researcher had knowledge of and experience with children. This sometimes helped when the text in the paper HRs was unclear and hence difficult to read; together we could lean on our knowledge and experience. Transferability considers the possibility of the results to be transferred to other settings or groups. The results from 75 HRs from three counties in southern Sweden can only serve as a working hypothesis to consider other settings or groups, with a description of the time and context in which they were found (Lincoln & Guba, 1985).
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Conclusions Lists of health terms developed for inclusion in the HR mainly focused on physical health. This predominant medical content was supplemented with health information related to psychosocial health in requested content in the locally produced health questionnaires and in the free text notes in the HR. There was novel information in the free text notes that was not included in the standardized part of the HR in both services.
Information concerning psychosocial health strongly focused on the child as a person rather than on the child within a family and preschool/school environment. The content of the health information was related to age groups and not followed in a systematic way.
Nurses and physicians had a positive view on documentation. Traditions and routines within the services influence the content of health information, which results in pragmatic solutions. Health information not documented in the HR was transferred between and within the services. This additional information concerned the child’s context, first and foremost family function.
Nurses and physicians had a positive view regarding the possibilities of an electronic version of the standardized HR, and that it postulates a common uniform language. The main advantage of an electronic version of the standardized HR was safer documentation, and the main disadvantage was that unauthorized people may be able to read the HR.
The ICF-CY was useful in analyzing the extent to which the documentation in the CHS and SHS pays attention to a holistic view. Different perspectives on health in documents were revealed when the health variables were linked to the framework of the ICF-CY.
The main limitation of linking health data to the ICF-CY was that some essential health variables with different content had to be linked to the same code, i.e. the level of detail was too low. Also the degree of reliability when linking health information is dependent on the interpretation of this information. Thus, it is important to put effort into agreeing on the meaning of the content of the health information before linking to the ICF-CY codes.
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Clinical implications and continued research
Additional requested information concerning psychosocial perspectives on health in the standardized part of the HR would contribute to a more comprehensive and informative picture of children’s health. There is a need for more in-depth research on the additional information not recorded. What is included in the content of family functions, and is it possible to standardize sensitive parts of the content in order to make the documentation more complete? Further, the services have to come to terms with which requested knowledge-based information in documentation should be followed in a systematic way over a child’s years. There is also a need to improve the instructions in the HR regarding what information should be documented in free text notes, since the results indicate that information on typical development included in the standardized part of the record was frequently repeated in the free text notes.
The utility of the ICF-CY as a tool has been confirmed, and challenges to develop a common language to document more on psychosocial health are indicated. There is a great need for a common language in interdisciplinary work in order to transform the information in the documentation into a standardized language. However, professionals have to put effort into and agree upon the meaning of the content of health information. This thesis perceives that the ICF-CY as a tool contributes a sharpened focus on the psychosocial perspective on children´s health. The time has now come to develop one common electronic version of the HR for the CHS and SHS, including consensus standards related to a holistic view on children’s health and development, to be followed from birth to the age of 18 years.
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Summary in Swedish/ Svensk sammanfattning
Dokumentation i barn- och skolhälsovården kartläggning av hälsoinformation från ett biopsykosocialt perspektiv med hjälp av ICF-CY
Den svenska barn- och skolhälsovården arbetar för att främja hälsa och att förebygga ohälsa hos barn från födelsen till och med avslutad gymnasieutbildning. Idag är den fysiska hälsan hos barn bättre än någonsin tidigare, men tendenser visar på att den psykosociala hälsan börjar bli sämre. Det är viktigt att dokumentera hälsa med en helhetssyn så att det fysiska så väl som det psykosociala perspektivet inkluderas. Vad som ska dokumenteras om barns hälsa styrs av lagar, nationella riktlinjer och basprogram. Dokumentationen styr verksamheternas arbete i en viss riktning och en tillförlitlig dokumentation är en förutsättning för att ge barn en rättvis bild av sin hälsa. Utvecklingen av en sammanhållen elektronisk journal innebär ett utökat tvärprofessionellt reflekterande av den dokumenterade omvårdnaden. Världshälsoorganisationens hälsoklassifikation Internationell klassifikation av funktionstillstånd, funktionshinder och hälsa – barn- och ungdomsversionen (ICF-CY) täcker kroppsliga funktioner och strukturer, aktivitet, delaktighet och miljöer speciellt relevanta för spädbarn, förskolebarn, skolbarn och ungdomar. ICF-CY erbjuder med sin funktionella betoning ett gemensamt språk för olika professioner inom och mellan verksamheter att dokumentera barns hälsa i relation till ett biopsykosocialt perspektiv. Det finns inte mycket forskning om vad som dokumenteras inom verksamheterna och om innehållet reflekterar en helhetssyn på barns hälsa. Därför var det angeläget att undersöka och analysera innehållet i olika dokument som används inom barn- och skolhälsovården.
Det övergripande syftet med denna avhandling var att analysera om dokumentationen i barn- och skolhälsovården reflekterar en helhetssyn på hälsa ur ett biopsykosocialt perspektiv. Avhandlingen innehåller fyra studier där kvantitativa och kvalitativa analyser valdes för att studera avhandlingens syfte. I tre av studierna har den efterfrågade informationen och innehållet i olika dokument analyserats. De dokument som har analyserats är listor med efterfrågad information om barns hälsa som är avsedd att finnas med i den nationella standardiserade hälsojournalen (I), efterfrågad information om hälsa i lokalt konstruerade hälsoenkäter som används för att följa barns hälsa (II) och innehållet i den fria text som utgör en del av hälsojournalen (III). ICF-CY har utforskats som verktyg för att analysera om dokumentationen reflekterar en
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helhetssyn (I, II,). I den fjärde studien har sjuksköterskor och läkares syn på dokumentation, överföring av information om hälsa och uppfattning om elektroniska version av den standardiserade hälsojournalen undersökts (IV).
Resultatet visade att innehållet på listor med efterfrågad information om hälsa till största del fokuserade på den fysiska hälsan (I). ICF-CY som verktyg har fungerat och en majoritet av information om barns hälsa gick att koda. Resultatet i hälsoenkäterna handlade till största del om frågor inom områden med ett psykosocialt perspektiv som kommunikation och språk, psykosomatiska symtom och att ta hand om sin egen hälsa (II). Fokus låg på barnets som person istället för att hellre lyfta fram barnet i sin familj, förskola och skola d.v.s. sin omgivning (II). För att få en tillförlitlig kodning till ICF-CY är det av stor vikt att informationen om hälsa är tydligt beskriven och att användare lägger samma innebörd i den information som ska kodas (I, II). Innehållet i den fria texten i hälsojournaler (III) handlade till största del om frågor inom områden med ett psykosocialt perspektiv. Det fanns ny information i den fria texten som inte fanns i den standardiserade delen av hälsojournalen (III). Möjligheten att skriva fri text användes både till att beskriva generell hälsa, de aktiviteter som besöket inkluderade och om upptäckta avvikelser. Den efterfrågade informationen om barns hälsa och innehållet i den fria texten var ojämnt fördelad i relation till barnets ålder (II, III). Sjuksköterskor och läkare bekräftade att mer information än vad som dokumenteras överförs inom och mellan barn- och skolhälsovården (IV). Den informationen handlar om den psykosociala hälsan och då främst om familjefunktion. Verksamheterna hade en positiv syn på de möjligheter som en elektronisk hälsojournal kunde föra med sig. En övervägande majoritet av respondenterna var positivt inställda till en hälsojournal som följer barnets hälsa och utveckling från födelsen upp till 18 år (IV).
Kliniska implikationer och fortsatt forskning
Den efterfrågade informationen om barns hälsa i den standardiserade delen av hälsojournalen behöver utökas för att också inkludera mer av den psykosociala hälsan. Det skulle bidra till en mer heltäckande bild av barns hälsa. Vidare bör verksamheterna komma överens om vilken kunskapsbaserad information om barns hälsa som ska dokumenteras och följas över tid. Det gäller både på individ- och befolkningsnivå. Det finns också ett behov av fördjupad forskning kring vad den information, som överförs vid sidan om dokumentationen i hälsojournalen, handlar om. Hur ser möjligheterna ut att använda ett gemensamt standardiserat språk för att underlätta dokumentation av känsliga frågor som påverkar barns hälsa? Vidare behöver instruktioner i befintliga hälsojournaler förtydligas angående vad den fria texten ska omfatta. Resultat visade att det var vanligt förekommande att information om barns hälsa i fri
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text var upprepningar av information som fanns i den standardiserade delen av hälsojournalen.
Nyttan av ICF-CY som ett användbart verktyg har bekräftats och ger verksamheterna utmaningar att utveckla ett gemensamt språk för att också inkludera den psykosociala hälsan i sin dokumentation. I det tvärprofessionella och interdisciplinära arbetet är ett överenskommet gemensamt språk en förutsättning för att kunna överföra dokumentationen till ett standardiserat språk. Verksamheterna behöver lägga ned fortsatt arbete på att komma överens om beskrivningar och innebörd i olika hälsobegrepp. Den här avhandlingen har visat på möjligheter med att använda ICF-CY som ett verktyg för att skärpa fokus på det psykosociala perspektivet på barns hälsa. Tiden är inne för att utveckla en gemensam elektronisk version av den standardiserade hälsojournalen, som inkluderar ett set av överenskommen hälsoinformation med en helhetssyn på barns hälsa och som ska följas upp över tid.
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