Child: care, health and development

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1 bs_bs_banner Child: care, health and development Original Article doi: /cch Health and functioning in the everyday lives of young children with cancer: documenting with the International Classification of Functioning, Disability and Health Children and Youth (ICF-CY) L. Darcy,* K. Enskär,* M. Granlund,* R. J. Simeonsson,* C. Peterson* and M. Björk* *CHILD Research Group, School of Health Sciences, Jönköping University, Jönköping, Sweden School of Health Sciences, University College Borås, Borås, Sweden School of Psychology and Early Childhood Education, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA, and School of Life Sciences, University of Skövde, Skövde, Sweden Accepted for publication 20 August 2014 Keywords everyday life, functioning, health, ICF-CY, paediatric cancer Correspondence: Laura Darcy, Institution of Health Science, University College Borås, S Boras, Sweden Abstract Background Health care focus is shifting for children from surviving childhood cancer to living with it on a daily basis. There is a need to document health and function in the everyday lives of young children with cancer using the multidimensional framework and language of the International Classification of Functioning, Disability and Health Children and Youth (ICF-CY). Aims The aims of this study were (1) to document health and functioning in the everyday lives of young children with cancer using ICF-CY codes and (2) to identify a comprehensive code set that can aid clinical assessment. Method Interviews with children diagnosed with cancer and their parents, were transcribed, reviewed for content and coded to the ICF-CY using linking procedures. Results A comprehensive code set (n = 70) for childhood cancer was identified. The majority of content identified to codes was related to activity and participation describing social relations with family, peers and professionals, preschool attendance and play, as well as issues related to support and independence. Conclusions The ICF-CY can be used to document the nature and range of characteristics and consequences of cancer experienced by children. The identified comprehensive code set could be helpful to health care professionals, parents and teachers in assessing and supporting young children s health and everyday life through the cancer trajectory. The comprehensive code set could be developed as a clinical assessment tool for those caring for young children with cancer. The universal language of the ICF-CY means that the utility of a clinical assessment tool based on identified codes can have wide reaching effects for the care of young children with cancer. Introduction The majority of children receiving a cancer diagnosis are in the 1 6 years age group and roughly 75% of them survive their illness (Gatta et al. 2009). The most common forms of childhood cancer are leukaemia, brain tumours and solid tumours. Treatment is aggressive, requiring long and frequent hospital stays, invasive and painful treatments and results in many 2014 John Wiley & Sons Ltd 1

2 2 L. Darcy et al. side-effects. Thus living with childhood cancer, on a daily basis, has become an important aspect of cancer care (Woodgate & Degner 2004; Darcy et al. 2013). Background Health has been defined as a positive concept emphasizing social and personal resources, as well as physical capacities: a resource for everyday life, not the objective of living (World Health Organization 1986). Having childhood cancer means living with disrupted everyday routines and roles (Enskär et al. 1997; Hedström et al. 2003; Hicks et al. 2003; Hinds et al. 2004; Björk et al. 2006). A longing to get used to having cancer and do normal everyday activities has been described by children 7 years and older (Hockenberry-Eaton & Minick 1994; Björk et al. 2009). Studies describing young children s own experiences of living with cancer are rare but young children s experiences of tiredness, hair loss and social limitations (Gibson et al. 2010) and a dramatic change in everyday life with experiences of feeling like a stranger, under attack and lonely (Darcy et al. 2013) have been described. There is a lack of research in this area and on cohorts of children in this age group (Docherty & Sandelowski 1999; Woodgate 2001; Irwin & Johnson 2005; Coyne 2006) but access to the young child s perceptions and experiences will help promote quality care during their illness as well as promote their rights to be consulted and listened to in matters that affect them (United Nations 1989; Darcy et al. 2013). Aspects of health and functioning in everyday life such as quality of life and quality register data should be included as a complement to standard measures (Bullinger et al. 2002). The International Classification of Functioning, Disability and Health (ICF) was developed by the World Health Organization (WHO) as an international classification system with focus on health and functioning in daily life, rather than on medical diagnosis, as described by the ICF s close companion, The International Classification of Disease (ICD-10). The ICF is an international taxonomy for coding all health-related experiences, based on a conceptual, interactive framework of the components of body functions, body structures, activities and participation and environmental factors (Fig. 1). The ICF version for Children and Youth (ICF-CY) published in 2007, has the same structure as the ICF and been adapted for use with children and youths. It offers a new way to conceptualize and document characteristics of children s function and their environments (World Health Organization 2007). The ICF-CY classifies the functional characteristics of a developing child. The components consist of categories with Figure 1. The framework of the International Classification of Functioning (ICF). specific code numbers and detailed definitions. For example, in the component of activity and participation, chapter 8 titled major life areas includes category d815, named as preschool education and defined as Learning at an initial level of organized instruction. In environmental factors, chapter 3 titled support and relationships include category e310 named immediate family and defined as The amount of physical and emotional support provided by the immediate family. Different ICF-CY codes are needed across the first years of a child s life to capture the growth and development of function even when the child s diagnosis does not change (Lollar & Simeonsson 2005). The coding system can provide essential information about the severity of a health condition in terms of its impact on functioning. Children with cancer may have the same diagnosis, but their abilities and levels of functioning may vary widely across and within individuals over time. The intended use of ICF-CY is as a conceptual framework and a common language for recording problems during childhood that involves functioning in environmental contexts. A main focus of the ICF-CY as a classification is to document children s participation in everyday life. It can also aid clinicians working with children in need of specific support to enable their participation in everyday life activities (Granlund 2013). Functioning is influenced by individual contextual factors and not on medical diagnosis alone (Simeonsson 2009). Each individual exhibits some degree of functioning in each domain described by the classification (Kostanjsek 2011). Knowing how a disease affects functioning enables better planning of services, treatment and rehabilitation for persons with long-term disabilities or chronic conditions. The ICF-CY provides a more integrative

3 The lives of young children with cancer in ICF-CY codes 3 understanding of health forming a comprehensive profile of an individual instead of focusing on one s health condition. The implications of using the ICF-CY include emphasizing the strengths of individuals, assisting individuals in participating more extensively in society by the use of interventions aimed at enhancing their abilities, and taking into consideration the environmental and personal factors that might hamper one s participation (Granlund 2013). The ICF-CY has helped establish a new era of patient-orientated clinical practice, teaching and research (Stucki et al. 2002). A significant application of the ICF-CY since its publication has been examining the utility of its codes as a universal language to describe the characteristics of complex, chronic health conditions. The original ICF-CY classification consists of approximately 1500 codes, a quantity which would be impractical for everyday usage. Therefore comprehensive code sets have been developed as a short list of relevant concepts for a specific condition. A code set can guide multidisciplinary teams as well as individual practitioners in delivery of care (McIntyre & Tempest 2007) and could be a way to implement the use of ICF-CY when summarizing the individual s functional abilities in response to the demands of everyday life (Simeonsson 2009). An extensive literature has evolved on the development of limited code sets to confirm the characteristics associated with a wide range of diagnosed conditions. Studies related to cancer have been limited to a few specific forms found in adults, and have not included forms prevalent in childhood (Ajovalasit et al. 2009). There is a need to document health and functioning in the everyday lives of children with cancer using the multidimensional framework and language of the ICF-CY. ICF-CY codes can be used to aid health care professionals clinical assessment of the child s health and everyday life functioning. Objectives The purpose of this study was (1) to document health and functioning in the everyday lives of young children with cancer using ICF-CY codes and (2) to identify a comprehensive code set that can aid clinical assessment. Methods Design This study has a deductive approach where WHO s existing ICF-CY framework (World Health Organization 2007) was used to document and code the everyday life experiences of young children with cancer as described in transcribed interviews. Table 1. Interviews in relation to data collection time points (N = 12) Participants The current study is part of a larger project exploring young children s experiences over a 3-year period from diagnosis, of how cancer affects their health and everyday lives. Both young children and their parents participated in the study. Data were gathered by interview and questionnaires every 6 months. For the purpose of the present study, 12 interview transcripts in total were coded (N = 12): three transcripts each from data collection point T1 (at diagnosis), T2 (6 months post diagnosis), T3 (12 months post diagnosis) and T4 (18 months post diagnosis) (Table 1). The interviews were from 11 different children, with two from the same child but at different time points. Seven of the interviews took place in the child s home and five interviews in hospital, according to the family s wishes. The children were aged between 1 and 5 years of age, three boys and eight girls, with mixed cancer diagnoses. The three youngest children (aged 1 2 years) did not actively take part in the interviews, which meant that the interview material is from nine children and 19 parents. Interviews lasted between 44 and 120 min and were recorded and transcribed verbatim. Data collection T1 (n = 3) T2 (n = 3) T3 (n = 3) Age of the child (years) Diagnosis Leukaemia Brain and solid tumours Undergoing treatment Active treatment Follow-up to treatment 1 1 Gender of the child Female Male 2 1 Child participated in the interview Yes No Parents participated in the interview Mother and father Mother Father Average length of interview (minutes) T4 (n = 3) Semi-structured interviews were performed with children and their parents from 2011 to The areas covered during the

4 4 L. Darcy et al. Table 2. Example of the linking process Rule description Meaningful units ICF-CY codes 1. Have good knowledge of ICF-CY 2. Link each meaningful concept to the most precise ICF-CY category 3. Document additional information if content of a meaningful concept not explicitly named in corresponding ICF category 4. Use lower level categories rather than unspecified categories She was bright red and sweating and you could see panic in her eyes and she didn t have any control over her own body and couldn t fight back (Mother to 2-year-old girl) You can t take the last lot of medicine in the naso-gastric tube, you see (5-year-old girl) Before, you couldn t even drag yourself forward, but look at you now... you run and hop and can get what you need and wipe your nose and everything like that (Mother to 5-year-old girl) b152 body functions (Chapter 1, emotional functions) e1101 products or substances for personal consumption + e1151 assistive products and technology for personal use in daily living, environmental factors (Chapter 1 products and technology) b7 body functions (Chapter 7 neuromusculoskeletal and movement-related functions) ICF-CY, International Classification of Functioning, Disability and Health Children and Youth. interview derived from the ICF-CY classification of health and referred to the domains of body structure and function in everyday life, activity and participation and environment. Interview questions began by asking What do you do every day and with whom?, followed by Has your body changed? and Do you have the support you need to do what you want to do? Follow-up questions, such as Tell me more or What do you think about that?, were asked in order to clarify. Parents and children were not separated from each other in the interview situation but focus was always on the child and his/her experiences (Darcy et al. 2013). Data analysis The process of coding the transcribed interview material to ICF-CY codes followed several steps. A modified version of Cieza s rules for linking text to ICF-CY codes was used (Cieza et al. 2002). Step 1: The transcribed interviews from all four data collection time points were read through. Thereafter, three interviews that were rich with information from each data collection time point were chosen (12 in total). Step 2: Acontent analysis (Graneheim & Lundman 2004) was then performed where these 12 interviews were read through several times and texts with meaningful concepts were identified. Meaningful concepts were defined as sections of the interview text large enough to be considered a whole and small enough to be possible to keep in mind as a context for the meaning unit, during the analysis process (Graneheim & Lundman 2004). Step 3: Meaning units described as words or sentences that revealed information about the child s body structure, function in everyday life, activity, participation or environment, were then picked out from the text. Step 4: One or more labels describing the content of the meaning unit were identified from the meaning units and linked to ICF-CY codes, as precisely as possible, in accordance with Cieza s rules (Cieza et al. 2002) (Table 2). The letter b is used for body function, s for body structures, d for activities and participation and e for environmental factors. This letter is followed by a numeric code that starts with the chapter number (one digit) followed by the second level heading (two digits) and the third and fourth levels have one digit each (World Health Organization 2007). Meaningful units that could not be linked to the ICF-CY were assigned to categories of non-definable content. Step 5: ICF-CY codes used 10 times or more (n = 55) were identified and included in the resulting Comprehensive Code Set. ICF-CY codes used five times or more were also identified and those codes adding new information (n = 15) were also added to the Comprehensive Code Set (n = 70). Validity An inter-rater reliability test was performed by two of the authors (MB & CP) by separately coding every 10th meaning unit and its associated ICF-CY codes. This revealed 74% congruence. Those meaning units that were not congruent were discussed and revised in agreement among the authors. Ethical considerations The Ethical Review Board, Linköping, Sweden gave formal approval to the comprehensive study (dnr 2010/343-31). Guidelines for Ethical Evaluation of Medical Research involving Human Subjects were followed (MFR 2003).

5 The lives of young children with cancer in ICF-CY codes 5 Results A total of 2283 meaningful units, incorporating 3783 ICF-CY codes, were identified from the 12 transcribed interviews. A comprehensive code set (n = 70) was identified (Table 3). The 70 categories are made up of 27 categories from the component activities and participation, 23 categories from the component body functions, 18 from the component environmental factors and 2 categories from the component body structures. The distribution of health and functioning by ICF-CY chapters The comprehensive code set represents 19 ICF-CY chapters. The 27 categories of the component activities and participation represent the vast majority of the total number of ICF-CY categories, almost 40%. Most of these belong to chapter 7 interpersonal interactions and relationships, chapter 8 major life areas, chapter 5 self-care and chapter 4 mobility. The 23 Table 3. Comprehensive code set (n = 70) Codes describing body functions (n = 23) Chapter b1 mental functions b114 orientation functions b125 dispositions and intra-personal functions b1252 dispositions and intra-personal functions, activity level b1253 dispositions and intra-personal functions, predictability b126 temperament and personality functions b1264 temperament and personality functions, openness to experience b1265 temperament and personality functions, optimism b1266 temperament and personality functions, confidence b130 energy and drive functions b1302 energy and drive functions, appetite b134 sleep functions b144 memory functions b152 emotional functions b160 thought functions b180 experience of self and time functions Chapter b2 sensory functions and pain b280 sensation of pain Chapter b5 functions of the digestive, metabolic and endocrine systems b510 ingestion functions b5106 vomiting b530 weight maintenance b525 defecation Chapter b7 neuromusculoskeletal and movement-related functions b730 muscle power Chapter b8 functions of the skin and related structures b810 protective functions of the skin Codes describing activities and participation (n = 27) Chapter d2 general tasks and demands d210 undertaking a single task d230 undertaking multiple tasks d250 managing one s own behaviour Chapter d3 communication d330 speaking Chapter d4 mobility d450 walking d455 moving around d470 using transportation d475 driving Chapter d5 self-care d5201 caring for teeth d530 toileting d540 dressing d550 eating d560 drinking Chapter d6 domestic life d640 doing housework Chapter d7 interpersonal interactions and relationships d710 basic interpersonal interactions d720 complex interpersonal interactions d740 formal relationships d7504 informal relationships with peers d760 family relationships d7602 siblings relationships d7603 extended family relationships Chapter d8 major life areas d815 preschool education d880 engagement in play d8800 solitary play d8803 shared cooperative play Chapter d9 community, social and civic life d920 recreation and leisure d9202 arts and culture Codes describing environmental factors (n = 18) Chapter e1 products and technology e1100 products or substances for personal consumption, food e1101 products or substances for personal consumption, drugs e115 products and technology for personal use in daily living e1150 general products and technology for personal use in daily living e1151 assistive products and technology for personal use in daily living e1152 products and technology for play e120 products and technology for personal indoor and outdoor mobility and transportation Chapter e2 natural environment and human-made changes to environment e220 flora and fauna Chapter e3 support and relationships e310 immediate family e315 extended family e320 friends e325 acquaintances, peers, colleagues, neighbours and community members e355 health professionals Chapter e4 attitudes e4 attitudes e420 individual attitudes of friends e425 individual attitudes of acquaintances, peers, colleagues, neighbours and community members Chapter e5 services, systems and policies e5800 health services e5801 health systems Codes describing body structures (n = 2) Chapter s3 structures involved in voice and speech s320 structure of the mouth Chapter s8 skin and related structures s840 structure of the hair

6 6 L. Darcy et al. Figure 2. Distribution by International Classification of Functioning, Disability and Health Children and Youth (ICF-CY) chapters. categories of the component body functions represent 33% of the total number of categories. Chapter 1 mental functions and chapter 5 functions of the digestive, metabolic and endocrine system are particularly visible. The 18 categories of the component environmental factors represent 25% of the total number of categories. Chapter 1 products and technology is most visible in this component, followed by chapter 3 support and relationships. Only two categories of the component body structure, representing less than 3% of the total number of categories, are included, with highest frequencies seen in chapter 3 structures involved in voice and speech and chapter 8 skin and related structures (Fig. 2). Categories of non-definable content A small body of meaningful units (8%) was classed as having non-definable content. Meaning units that were too diffuse or did not relate to the aim were removed. The remaining meaning units reflected aspects of general health and quality of life. These described important feelings and experiences rather than functions for the child such as being at home, having an everyday life, experiencing independence and control, comparisons with others, catching up and growing again, feeling good and feeling normal. Aspects of the child s personality or how he/she acts were also described. Several meaning units described the type or name of cancer or children s explanations of the cancer, e.g. bad cells. Meaning units also referred to how children were feeling such as feeling better or feeling worse. Infections, tummy bugs and colds were also commonly mentioned. Discussion The 70 categories included in the comprehensive code set represent 19 ICF-CY chapters and reflect the complex nature of health and functioning in everyday life encountered with young children with cancer of living through the cancer trajectory. The comprehensive code set also reflects the crucial influence of the surrounding environment and life situation on health and everyday life functioning. The identified ICF-CY chapters significantly relate to the results of previous research in this area. Taking part in daily activities with their families and peers has previously been shown to be what preschool aged children associate with the concept of health (Almqvist et al. 2006; Darcy et al. 2013). The main distribution of everyday life experiences was seen in the component activities and participation, followed by body functions and environmental factors, indicating a disruption of everyday routines for this group of children. The least prominent component was body structures. Creating good relationships with health care professionals (d7 interpersonal interactions and relationships) (Björk et al. 2006) and maintaining support and relationships from family, peers and health professionals (d7 interpersonal interactions and relationships), (d4 mobility), (d5 self-care), (e3 support and relationships) and (e1 products and technology) are seen as essential components for the sick child s well-being (Enskär et al. 1997; Björk et al. 2006, 2009; Darcy et al. 2013). The prominence of chapters covering issues related to preschool and play (d8 major life areas) and peers (d7 interpersonal interactions and relationships) reflect recent findings of loneliness and isolation (Darcy et al. 2013). Ongoing contact with preschool services is vital to the child s experiences of an ordinary everyday life (von Essen et al. 2001; Darcy et al. 2013). The component body functions represented five chapters. The most common of these were b1 (mental functions) and b5 (functions of the digestive, metabolic and endocrine systems). Chapter b1 covers the areas of emotional function, temperament and personality, energy and activity levels, sleep and pain. Chapter (b5) reflects problems related to eating, vomiting, defecating and weight maintenance. These issues have previously been described in the literature (Enskär et al. 1997; Hedström et al. 2003; Hicks et al. 2003; Hinds et al. 2004; Björk et al. 2006). The ICF-CY is a classification of health and functioning. Some of what parents and children talked about in the interviews was about issues of general health and quality of life. This was reflected in the fact that almost 8% of the identified meaning units were deemed to have non-definable content. It is important to shed light on meaningful concepts such as these that cannot be linked according to the linking rules (Stucki 2005) and highlight the need for complementary linking measures (Klang Ibragimova et al. 2011). Without weakening their

7 The lives of young children with cancer in ICF-CY codes 7 strength, ICF-CY-based tools must be tailored to the needs of the users in order to enhance its applicability (Stucki et al. 2002; Stucki & Grimby 2004). The comprehensive code set described in this study can be developed as a tool to facilitate the clinical assessment of young children with cancer, by those caring for them. Complementing health status assessment with information on issues of specific interest to time periods in the child s cancer trajectory would ultimately contribute to making the young child s voice heard. Limitations/methodological considerations We have used the ICF-CY to document health and functioning in the everyday lives of young children with cancer. Back coding experiences of children with cancer as we have done and without qualifier information, is an unusual use of the ICF-CY. The frequency of occurring codes has been measured, rather than aspects of impairment caused by the having a cancer diagnosis. This reflects limitations in everyday functioning, rather than the impact cancer has on ongoing function. Linking free texts to the ICF-CY infers some degree of interpretation and raises several challenges (Klang Ibragimova et al. 2011). The semi-structured interview questions, which were based on ICF-CY domains, steered the interview content somewhat. The variability in interview settings, time points and participants should be acknowledged as a study limitation as these may have influenced participant responses to the interview questions. Several people were involved in the linkage procedure, which can be seen as a weakness in this study. The studies reliability is enhanced by high inter-rater reliability congruence between the linkage procedures. Validity to the analysis process was added by dialogue within the research group, one of whom is a senior researcher and an expert in working with the ICF-CY. The sample size of 12 interviews, three each from four different time points, was small, but large enough to allow adequate analysis of the data and resulting emergent codes (Lincoln & Guba 1986). Conclusion and clinical implications The ICF-CY provided a comprehensive way to document everyday life experiences of young children with cancer. The study also yielded information about codes than can be developed as a clinical assessment tool by those caring for young children with cancer. This complement to standard assessments of health status could be used to guide the delivery of care with focus on the young child s everyday life functioning. The universal language of the ICF-CY means that the utility of a clinical assessment tool based on issues of specific interest to time periods in the child s cancer trajectory can have wide reaching effects for the care of young children with cancer. Key messages The ICF-CY provides a comprehensive way to document health and functioning in the everyday lives of young children with cancer. This study yields information about codes which could be developed as a clinical assessment tool for those caring for young children with cancer. Funding This study was supported by grants from the Swedish Children s Cancer Foundation. Conflict of interests None declared. References Ajovalasit, D., Vago, C., Usilla, A., Riva, D., Fidani, P., Serra, A., Gentile, S., Massimo, M., Biassoni, V. & Leonardi, M. (2009) Use of ICF to describe functioning and disability in children with brain tumours. Disability and Rehabilitation, 31 (S1), S100 S107. Almqvist, L., Hällnäs, P., Stefansson, M. & Granlund, M. (2006) I can play-young children s perceptions of health. Pediatric Rehabilitation, 9, Björk, M., Nordström, B. & Hallström, I. (2006) Needs of young children with cancer during their initial hospitalization: an observational study. Journal of Pediatric Oncology Nursing, 23, Björk, M., Wiebe, T. & Hallström, I. (2009) An everyday struggle Swedish families lived experiences during a child s cancer treatment. Journal of Pediatric Nursing, 24, Bullinger, M., Schmidt, S. & Petersen, C. (2002) Assessing quality of life of children with chronic health conditions and disabilities: a European approach. International Journal of Rehabilitation Research, 25, Cieza, A., Brockow, T., Ewert, T., Amman, E., Kollerits, B., Chatterji, S., Ustun, T. B. & Stucki, G. (2002) Linking health-status measurements to the international classification of functioning, disability and health. Journal of Rehabilitation Medicine, 34, Coyne, I. (2006) Consultation with children in hospital: children, parents and nurses perspectives. Journal of Clinical Nursing, 15,

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