Children and young people's experiences of cancer care: A qualitative research study using participatory methods
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:
- •
2
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)
- et al.
Using the write and draw technique with children
European Journal of Oncology Nursing
(1999) Tick box for child? The ethical positioning of children as vulnerable, researchers as barbarians and reviewers as overly cautious
International Journal of Nursing Studies
(2009)Information needs of teenagers with cancer: developing a tool to explore the perceptions of patients and professionals
Journal of Cancer Nursing
(1997)- et al.
Helping children speak up in the health service
European Journal of Oncology Nursing
(2002) - et al.
What is important to young children who have cancer while in hospital?
Children and Society
(2008) - et al.
A multisite study of health professionals’ perceptions and practices of family-centered care
Journal of Family Nursing
(2002) - et al.
Children's views of hospitalization: an exploratory study of data collection
Journal of Child Health Care
(2003) A partnership model with child and family
Senior Nurse
(1988)- et al.
The participation of children and young people in decisions about UK service development
Child Care Health and Development
(2004) - et al.
Working with ethical symmetry in social research with children
Childhood: A Global Journal of Child Research
(2002)
Does “Telling” less protect more? Relationships among age, information disclosure, and what children with cancer see and feel
Journal of Pediatric Psychology
Is children's choice in health care rhetoric or reality? A scoping review
Journal of Advanced Nursing
Making Sense of Qualitative Data
Consultation with children in hospital: children, parents’ and nurses’ perspectives
Journal of Clinical Nursing
Multiple methods in qualitative research with children: more insight or just more?
Qualitative Research
National Service Framework for Children, Young People and Maternity Services: Executive Summary
Childhood cancer and users’ views: a critical perspective
European Journal of Cancer Care
Communication in childhood cancer
Children's understanding of cancer
Psycho-Oncology
Can parents rate their child's health-related quality of life? Results of a systematic review
Quality of Life Research
Information needs and decision making preferences of children with cancer
Psycho-Oncology
Cited by (152)
Children's participation rights and the role of pediatric healthcare teams: A critical review
2024, Journal of Pediatric NursingYoung children's perspectives on treatment and care: A qualitative study using narrative and play-based interviewing
2023, Journal of Pediatric NursingThe construction of sustainability conceptions of Brazilian students in elementary school
2024, Environment, Development and SustainabilityLiving with a rare disease - experiences and needs in pediatric patients and their parents
2023, Orphanet Journal of Rare Diseases