Children and young people's experiences of cancer care: A qualitative research study using participatory methods

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Abstract

Background

Little is known about whether children's cancer services actually meet children's needs, as the majority of previous research has sought the views of parents as proxies.

Objectives

To explore children's and young peoples’ views of cancer care and to present a conceptual model of communication and information sharing.

Settings

Three Principal Cancer Treatment centres in the United Kingdom.

Participants

Thirty-eight participants at different stages of the cancer journey (e.g. on treatment, near end of treatment, up to 18 months following treatment) were grouped for data collection by age: young children (4–5 years), older children (6–12 years) and young people (13–19 years).

Methods

Data were collected concurrently over 6 months using age-appropriate, participatory-based techniques. Techniques included play and puppets, the draw and write method, interviews and an activities day.

Results

Some findings confirmed previously reported issues, such as, young children's inabilities to voice their preferences, and the importance of familiar environments and parental support for all ages. New findings suggested children worry about the permanence of symptoms, and older children are unhappy about their parents leading communications with health professionals. As communication and information sharing featured as an area in which children's and young people's preferences changed most dramatically, we propose a conceptual model of communication roles of patients, their parents, and health professionals to illuminate communication patterns. The model suggests children (aged 4–12 years) reside in the background of information sharing with health professionals until they gain autonomy as young people (around age 13). They then move into the foreground, and their parents transition into a supportive background role. Reviewing this model may help younger children realise their abilities to voice their preferences and older children to move into the foreground. Parents and professionals, in turn, can learn to develop in their supportive background roles. We encourage further testing of the model to define roles within relevant contexts.

Conclusions

Overall, this study offers a perspective on the needs and preferences of children and young people receiving cancer care. Differences across ages were more striking with reference to preferences for communication. These differences are highly relevant to the way we communicate information to children and young people.

Introduction

Approaches to childhood cancer research are criticised for overlooking collaborative research methods between researchers and child participants, relying on parents for information-giving about children (Eiser and Morse, 2001). This phenomenon has resulted in a doubling silencing effect, a situation in which parents’ voices are heard as proxies speaking on behalf of their children, ignoring a parent's own need to communicate, and making children's voices absent from the discourse altogether (Dixon-Woods et al., 2002). In effect, childhood cancer care has evolved in the absence of commentary from children and young people about whether services actually meet their needs. The aims of this paper are two-fold: (1) to present the findings of a study that explored experiences and views of children and young people at three Principal Cancer Treatment (PCT) care sites in the United Kingdom (UK); and (2) to present a conceptual model of communication and information sharing. The model reveals that both younger and older children and young people have distinctly different preferences about taking the lead in communications, which affect communication roles played by parents, health professionals and themselves.

Health professionals have only recently started to appreciate that children with cancer want detailed and complex information about their disease (Horstman and Bradding, 2002). New sociological approaches to childhood describe children as social actors who play an active role in shaping their environment, and hence have their own experiences and understandings (James et al., 1998). Even very young children are seen as competent to commentate on their own lives and to be involved in decision-making (James et al., 1998). There is also a growing acceptance that children and young people should be more involved in decision-making (Coyne, 2006, Darbyshire et al., 2005, Department of Health, 2004, Dixon-Woods et al., 2002, Horstman et al., 2008, NICE, 2005, UN General Assembly, 1989). It is believed that providing children and young people with real choice will improve standards of care, improve efficiency and increase patient-centred choice (Coad and Shaw, 2008).

Despite policy endorsements and public support of user participation, in reality, children's involvement is challenging (Moules, 2005), and hence often limited (Cavet and Sloper, 2004). There is still a tendency within paediatric research to regard children as passive recipients of a health care system, rather than active users (Sartain et al., 2000). This is partly due to an assumption that children are passive, dependent, and incompetent and do not have the ability to understand the idea of research (Christensen and Prout, 2002). Social constructions of childhood have been to date underpinned by the concepts of vulnerability and dependency (James et al., 1998), which has resulted in the most at-risk children (and most frequent users of health services) to be under-represented in health care research (Carter, 2009). One major problem faced by researchers seeking to involve children in studies is the lack of suitable methods (Horstman and Bradding, 2002). More recently, participatory methods have presented researchers with a ‘toolbox’ of techniques to engage with children in a more meaningful way. Unfortunately, much of the published work has centred on healthy children. The important needs of children and young people with chronic illnesses, such as cancer, have yet to be fully explored. Of those studies conducted in the field of cancer care, few elicited information on preferences directly from children and young people (Aldiss et al., 2008, Claflin and Barbarin, 1991, Ellis and Leventhal, 1992, Hooker, 1997, Horstman and Bradding, 2002, Mitchell et al., 2006, NICE, 2005, Wilkinson, 2003). These studies highlighted an important point about understanding how children's needs and preferences might shift across the different age groups. Children's lives change dramatically in a short number of years as they begin to establish their autonomy. Their understandings of health and illness also change and therefore, it may be hypothesised, that needs and preferences might also change. This study sought to distinguish needs and preferences across a wide range of ages using innovative methods and develop a conceptual model to reflect the findings.

Section snippets

Design

This was a qualitative, exploratory study, employing participatory-based techniques of data collection.

Sample and recruitment

This study sought to include children and young people aged 4–19 years at six stages of the cancer journey (e.g. at diagnosis, during and up to 18 months after treatment, receiving palliative care). Purposive sampling was employed to ensure a mix of participants in terms of ethnicity, gender, age, social background and diagnosis. At each stage in the cancer journey we aimed to recruit:

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Findings and discussion

The following sections are organised around six principal themes generated, and include illustrative quotations from the raw text. For each quotation, children and young people are identified using a pseudonym and their age. Needs and preferences are described in terms of cohorts: young children (aged 4–5 years); older children (aged 6–12 years); and young people (aged 13–19 years).

Conclusion

Overall, this study offers a perspective on the needs and preferences of children and young people receiving cancer care. Differences across ages were more striking with reference to preferences for communication. These differences are highly relevant to the way health professionals communicate information to children and young people. The majority of children are surviving their cancer. Thus they need to know what has happened to them so that in their adult lives they will be able to

Acknowledgements

Thank you to Macmillan Cancer Support for their support. Thank you to the clinical staff at the three Principal Cancer Treatment care sites for helping with the recruitment process. Thank you also to all the children who gave up their time to be interviewed.

Conflict of interest. We do not have conflict of interest for the following paper.

Funding. This work was supported by Macmillan Cancer Support. The views expressed in this publication are those of the authors and are not necessarily those of

References (42)

  • C.J. Claflin et al.

    Does “Telling” less protect more? Relationships among age, information disclosure, and what children with cancer see and feel

    Journal of Pediatric Psychology

    (1991)
  • J.E. Coad et al.

    Is children's choice in health care rhetoric or reality? A scoping review

    Journal of Advanced Nursing

    (2008)
  • A. Coffey et al.

    Making Sense of Qualitative Data

    (1996)
  • I. Coyne

    Consultation with children in hospital: children, parents’ and nurses’ perspectives

    Journal of Clinical Nursing

    (2006)
  • P. Darbyshire et al.

    Multiple methods in qualitative research with children: more insight or just more?

    Qualitative Research

    (2005)
  • Department of Health and Department for Education Skills

    National Service Framework for Children, Young People and Maternity Services: Executive Summary

    (2004)
  • M. Dixon-Woods et al.

    Childhood cancer and users’ views: a critical perspective

    European Journal of Cancer Care

    (2002)
  • M. Dixon-Woods et al.

    Communication in childhood cancer

  • C. Eiser et al.

    Children's understanding of cancer

    Psycho-Oncology

    (1992)
  • C. Eiser et al.

    Can parents rate their child's health-related quality of life? Results of a systematic review

    Quality of Life Research

    (2001)
  • R. Ellis et al.

    Information needs and decision making preferences of children with cancer

    Psycho-Oncology

    (1992)
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