Consumer involvement - Royal College of Nursing

Consumer involvement: Seeking the views of children and young people: a limited review

Jane A Hunt Nursing & Health Services Research Consultant JHNursing Research Consultancy

On behalf of The Children and Young People’s Field of Practice, Royal College of Nursing

June 2004 Dr Jane Hunt Nursing & Health Service Research Consultant JHNursing Research Consultancy

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Contents

Page

number: Introduction

3

Scope of the work

3

The structure of the report

3

I: Consumer involvement

4

II: Children and young people as consumers

5

III: Key related work

5

IV: Other useful resources

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V: Difficulties and Challenges of Seeking Children’s and Young People’s Views

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VI: Methodologies and methods used to gain children’s and young peoples’ views6 Interviews

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Draw and write techniques

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Multiple mixed methods

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Observation

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Questionnaires and survey design

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VII: Areas were children’s and young people’s views have been explored

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Conclusion Acknowledgements

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References

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Table One

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Table Two

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Dr Jane Hunt Nursing & Health Service Research Consultant JHNursing Research Consultancy

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Consumer involvement: Seeking the views of children and young people: A limited review Introduction In keeping with the national agenda for children and young people and arising from the NHS Plan (Department of Health (DH) 2000) which puts patients at the centre of health care, The Children and Young People’s Field of Practice, Royal College of Nursing (RCN), has recently developed a Patient and Public Involvement Strategy. This strategy sets out to enhance the ethos of consumer involvement of children and young people. However, The Children and Young People’s Field of Practice recognises that, to date, there is limited information available to its members on advancing this initiative. The work reported here was thus undertaken to provide both individual members of the RCN Children and Young People’s Field of Practice and forums within with information to develop this strategy.

The scope of the work A limited literature and website review was undertaken to provide a resource to ensure the views and voices of children and young people are drawn upon when responding to the national children’s agenda or developing forum activities within the Field of Practice. Whilst the literature concerning children and young people as consumers is limited, there is a wealth of sociological, psychological, paediatric and nursing research literature in which the views and voices of children and young people have been sought. Although this body of literature has existed since the 1970s, the references provided in this report predominantly post date the mid 1990s for three reasons. Firstly, the sheer volume of available literature resulted in a strict selection criteria being created during the scope of this work. Secondly, more recent literature is easier to access both through libraries and the Internet making this more suited to the needs of individual Children and Young People’s Field of Practice members. Thirdly, in a rapidly changing society, attitudes towards seeking children’s and young people’s views have become less paternalistic compared with twenty years ago, making earlier literature less relevant.

The structure of the report This report is set out in seven sections. Section I sets out to briefly define the term and evolution of consumer involvement. Section II builds on this to locate the place of Dr Jane Hunt Nursing & Health Service Research Consultant JHNursing Research Consultancy

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children and young people as consumers within this ethos. Section III presents some key related pieces of work which complement this report. Section IV provides some useful additional resources and Section V focuses on difficulties and challenges posed by seeking the views of children and young people. Section VI presents an overview of the methodologies and methods used to elicit the views of children and young people and references are summarised in Table One. Section VII provides a synopsis of clinical areas and specialities in which children’s and young people’s views have been sought. These are listed according to topic areas in Table Two.

I: Consumer involvement A consumer has been described as: ‘someone who is getting something, perhaps without choice, and will have something to say if he/she does not like what they are getting’ (Keatinge et al. 2002:16). The term ‘consumer involvement’ is currently in wide usage. However, ‘consumer involvement’, ‘user involvement’, ‘patient and public involvement’ and ‘service user’ are used interchangeably and little of note in the literature distinguishes one from another. For simplicity therefore, the term ‘consumer involvement’ is used throughout this report to encapsulate each of these terms.

It is commonly considered that consumer involvement stems from the NHS Plan (DH 2000) and other recent government initiatives such as Involving Patients and the Public (DH 2001). However, consumer involvement in the planning and evaluation of health care delivery has been present since the emergence of holistic care in the 1970s (Pearson 2002). This is evidenced by the presence of ‘consumer involvement’ in the literature which predates current government policy (e.g. Allot & Holmes 1993, Lindow 1993, Pilgrim & Waldron 1998, Rudman 1996a, 1996b). It is particularly apparent in the mental health literature (e.g. Allot & Holmes 1993, Lindow 1993, Pilgrim & Waldron 1998, Rudman 1996a, 1996b, Wood & Wilson-Barnett 1999). Furthermore such concepts have international recognition, commonly appearing particularly in the Australasian nursing literature (e.g. Cleary, Horsfall & Hunt 2003, Keatinge et al. 2002).

The concept of consumer involvement arguably evolves from and to a degree supersedes the concepts of both ‘partnership’ and ‘empowerment’. Both ‘partnership’ and ‘empowerment’ have been frequent parlance in health care since the late 1980s (e.g. Casey 1988, DH 1994, Darbyshire 1994, Gibson 1991, 1995, Gould 1996, Hunt 1998, Wilson-Barnett 1989). However, whilst, both ‘partnership’ and ‘empowerment’ can be used interchangeably to refer to relationships between both health care Dr Jane Hunt Nursing & Health Service Research Consultant JHNursing Research Consultancy

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providers and consumers and between differing groups of health care professionals, the terms ‘consumer’ cannot.

There is an ‘increasing emphasis in health-services management and by governments on the involvement of consumers in the design, delivery and evaluation of health services’ (Pearson 2002:67). Furthermore, the RCN view consumer involvement as an essential requirement for the effective implementation of clinical governance (Currie, Morrell & Scrivener 2003). Thus, consumers of both health services and research are key. In support of this ideal, a recent systematic review of the literature suggested that there is a mounting body of evidence indicating collaboration with users is increasingly being promoted as a way of working. However the reality is that limited collaboration at all levels, including consumer involvement, currently exits (Langton et al. 2003).

II: Children and young people as consumers Children and young people account for a quarter of all general practitioner consultations and almost a third of the workload of accident and emergency departments, making them important consumers of health services (Hart & Chesson 1998). For this reason alone Hart and Chesson (1998) argue that children’s and young peoples’ voices should be heard. However, accessing and hearing patients’ voices is fraught with difficulties (Niven & Scott 2003) and the possibility of including the views of vulnerable groups of patients has recently been questioned (see Robinson 2004). These difficulties are perceived to be compounded when children and young people are the consumers of services with paternalistic views to children prevailing well into the late 1990s (Hart & Chesson 1998). Perhaps for these reasons little has been written about children as consumers. Nonetheless, children are currently viewed as consumers (Hart & Chesson 1998) and this view is central to Getting the right start: National Service Framework for Children (DH 2003). To advance the RCN Children and Young People’s Field of Practice strategy in acknowledging children and young people as consumers, the majority of papers referenced in the following sections draw on research undertaken with children and young people whose voices and views have been sought.

III: Key related work As suggested earlier, the nature of this report is limited. It is therefore recommended that it is not read in isolation. Rather, it is recommended that other key literature in which the views of children and young people have been more extensively reviewed Dr Jane Hunt Nursing & Health Service Research Consultant JHNursing Research Consultancy

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be drawn upon to complement the work reported here. One key example of work which complements this includes an extensive literature review, undertaken on behalf of the National Evaluation of the Children’s Fund (NECF). This work is ongoing and will shortly be available on the NECF website (www.ne-cf.org). This work identified approximately 4000 publications and grey literature pertinent to exploring the views of children and young people spanning social policy, education, health and psychology. Of these, 300 key references were reviewed, later refined and included in the final analysis (Coad and Lewis 2004).

A second key related publication has recently been provided by the Commission for Health Improvement (CHI). This publication appraises 59 reports provided to CHI by both statutory and voluntary organisations in which children’s and young people’s views have been sought (Boylan 2004). The service areas from which these reports were gathered are wide although most pertain to secondary care.

IV: Other useful resources A pair of particularly useful recent and comprehensive publications which give in depth insights into various topic areas relating to the health, educational and social welfare of children and young people and into a wealth of methods used to gain their views are: (1) Lewis V, Kellett M, Robinson C, Fraser S, Ding S (2004) The Reality of Research with Children and Young People and (2) Fraser S, Lewis V, Ding S, Kellett M, Robinson C (2004) Doing Research with Children and Young People. Both are published by the Open University, Sage. London.

A further recent publication which may act as a useful guide to eliciting the views of children and young people has been produced by the Hek (2004) for the NECF. This publication has been produced ‘as a starting point for conversations about what children and young people feel is important in their lives’ (www.ne-cf.org 2004) and acts as a tool for working with children and young people to gather data about how the Children’s Fund has impacted on their lives.

V: Difficulties and Challenges of Seeking Children’s and Young People’s Views It is widely recognised that there are many difficulties and challenges associated with eliciting the views and opinions of children and young people. These include ethical, developmental and methodological issues. There is an abundance of literature Dr Jane Hunt Nursing & Health Service Research Consultant JHNursing Research Consultancy

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pertaining to the varying difficulties and challenges associated with these issues and a smaller volume which seek to offer some solutions to these difficulties and challenges (e.g. Bricher 1999, Dixon-Wood et al. 1999, Ensign 2003, Kortesluoma et al 2003, Smith 2001, Solberg 1996). There are also a number of related useful texts (e.g. Brannen and O’Brien 1996, Hutchby and Moran-Ellis 1998, Kirby 2000).

VI: Methods used to elicit children’s and young peoples’ views A diversity of methods has been used to elicit the views and voices of children and young people. The methods used may be complex and multiple. These are dependent, in part, on the research questions addressed and in part on the ages and abilities of those whose views or voices are sought. By far the greatest numbers of studies reported in the literature concern talking directly with children and young people through open ended conversations and interviews. Talking to children and young people in groups, known as focus groups, has also elicited young people’s views in a variety of topics. Other techniques such as questionnaire completion, children’s drawings and stories and active participation, have also successfully gained the perspectives of children and young people. A selection of references where each of these methods has been used can bee seen in Table One. Interviews: family and individual and open-ended conversations The interview or conversation method of eliciting the views of children and young people has historically been a favoured methodology. The ways in which these have been undertaken vary widely depending amongst other things on the topic and questions to be addressed or the situations or ages of the children and young people interviewed. In addition, this method may involve one to one interviews or conversations, family interviews in which individual children or young people or their siblings take a key role or in groups of peers such as friends, fellow groups of patients or school groups. Group interviews are commonly referred to as focus groups and may take many different forms (Stewart & Shamdasani 1990). A useful definition of ‘group interviewing’ is provided by Smith (1954:10), cited in Stewart & Shamdasani (1990). Here it is suggested that: ’The term group interviewing will be limited to those situations where the assembled group is small enough to permit genuine discussion among all its members’. A number of examples where varying interview and conversation techniques, including focus groups, have been employed to elicit the views and voices of children and young people are depicted in Table 1.


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Draw and write techniques As with interviewing techniques, drawing and writing techniques and methods of data collection with children and young people are diverse. Perhaps dissimilar to interview techniques, drawings and writings, including story telling, are rarely used in isolation. Rather, the literature often reports draw and write techniques as being used in conjunction with other data collection methods.

Although no one particular

methodology is associated with any one group of children, young people or subject areas, drawing techniques are particularly reported when the views of young children are sought. Selected references where draw and write techniques are described are summarised in Table One. Coates (2004) provides particularly useful insight into using drawing techniques in preschool age children.

Multiple and mixed methods Employing multiple or mixed methods of data collection is particularly suited to eliciting the views of children and young people. As suggested above, drawing or writing techniques, in particular, may be used as part of a multiple or mixed methods methodology. Multiple or mixed methods are not widely reported in the literature but a number of useful examples are highlighted in Table One.

Observation Whilst observation has frequently been used as a method of obtaining data from small babies and neonates, particularly in relation to pain research (e.g. Krechel & Bilder 1995, Horgan et al. 1996), the nature of observation has rarely been deemed ‘participatory’ and babies are perceived to be too young to provide their own views. However, one notable exception where observation has been successfully utilised as a participatory approach to data collection has recently been reported (Takai 2004). Here, observation was used as a technique to understand how deaf infants attain language skills (see Table One). Questionnaires and survey designs Questionnaires and survey designs are widely used methods to gain the views, attitudes and opinions of large populations (de Vaus 1991, Oppenheim 1992). To complete questionnaires requires writing and reading skills. Therefore whilst such techniques would be suited to young people who might have acquired such skills, the questionnaire method of data collection is less well suited to eliciting the views of younger children. Consequently it is not well reported in the literature as a methodology suited to children. However, four examples where surveys have been employed are listed in Table One. Dr Jane Hunt Nursing & Health Service Research Consultant JHNursing Research Consultancy

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VII: Areas were children’s and young people’s views have been explored The areas relating to health in which the views and voices of children and young people have been sought are wide ranging and the literature is vast. Topics where the views and voices of children and young people have been sought range from disease specific views such as living with asthma, diabetes or cancer to more general questions about health and health inequalities. Selected examples from a range of clinical areas and topics are provided in Table Two.

Conclusion This report has provided insight into the concept and evolution of ‘consumer involvement’ and more particularly into ‘children as consumers’ of health. In addition, a limited review of the literature and websites where children’s and young people’s views and voices have been sought, is reported. The difficulties and challenges associated with eliciting children’s views are presented along with frequently utilised methodologies and topic areas. Furthermore, key related literature and other useful resources are listed. With this information, it is hoped that RCN Children’s and Young People’s Field of Practice members may advance the Patient and Public Involvement User Strategy.

Acknowledgements The limited scope of this work resulted in a reliance on many children’s nurses, with knowledge of the literature in the field of children’s and young people’s participatory research and seeking their views. Thanks go to all those who helped in the production of this report.


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References Action for Sick Children (1998) Pictures of healthcare. A child’s eye view. Action for Sick Children. London.

Allatt P (1996) Conceptualizing Parenting from the Standpoint of Children: Relationship and Transition in the Life Course. In Brannen J, O’Brien M (eds.) Children in Families. Falmer. London.

Allot P, Holmes (1993) Involving service users. In Dean C, Freeman H. Community Mental Health Care (eds.). Royal College of Psychiatrists. Gaskell. London. pp119122

Backett-Milburn K, Cunningham-Burley S, Davis J (2003) Contrasting lives, contrasting views? Understandings of health inequalities form children in differing social circumstances. Social Science and Medicine. 57,613-23.

Bird JE, Podmore VN (1990) Children’s understanding of health and illness. Psychology and Health. 4:175-185.

Boylan P (2004) Children’s Voices project: Feedback from children and young people about their experiences and expectations of healthcare. Commission for Health Improvement. Department of Health. www.chi.nhs.uk/childrens-voices/Report.pdf (accessed 07.04.04).

Bradding A, Horstman M (1999) Using the write and draw techniques with children. European Journal of Oncology Nursing. 3(3):170-175.

Brannen J, O’Brien M (eds.)(1996) Children in Families: Research & Policy. Falmer Press. London.

Brewster AB (1982) Chronically ill hospitalised children’s concepts of their illness. Pediatrics. 69,355-62.

Bricher G (1999) Children and qualitative research methods: a review of the literature related to interview and interpretive processes. Nurse Researcher. 6(4):65-77.


10

Brodie B (1974) Views of healthy children toward illness. American Journal of Public Health. 64:1156-1159.

Brown A (1985) School age children with diabetes: knowledge and management of the disease, and adequacy of self-concept. Maternal and Child Nursing Journal. 14: 47-61. Callery P, Milnes L, Verduyn C, Couriel J (2003) Qualitative study of young people’s beliefs about childhood asthma. British Journal of General Practice. 53,85-190.

Casey A (1988) A partnership with family and child. Senior Nurse. 8(4):8-9.

Coates E (2004) ‘I forgot the sky!’ Children’s Stories Contained within Their Drawings. In Lewis V et al. (eds). The Reality of Research with Children and Young People. The Open University. Sage. London.

Currie L, Morrell C, Scrivener R (2003) Clinical governance: an RCN resource guide. Royal College of Nursing. London.

Cleary M, Horsfall J, Hunt G (2003) Consumer feedback on nursing care and discharge planning. Journal of Advanced Nursing. 42(3):269-277.

Coad J, Lewis A (2004) Engaging children and young people as participants in research – A literature review for the National Evaluation of the Children’s Fund (NECF). Available on www.necf.org

Darbyshire P (1994) Living with a Sick Child in Hospital: the Experiences of Parents and Nurses. Chapman Hall. London.

Department of Heath (1994) Working in Partnership. HMSO. London.

Department of Health (2000) The NHS Plan. Department of Health. London.

Department of Health (2001) Involving Patients and the Public. HMSO. London.

Department of Health (2003) Getting the right start: National Service Framework for Children: Standards for hospital services. Department of Health. London.


11

De Montigny G (1998) In the Company of Strangers: Being a Child in Care. In Hutchby I, Moran-Ellis J (eds.) Children and Social Competence. Falmer. London.

De Vaus DA (1991) Surveys in Social Research. Third edition. Allen & Unwin. London.

Dixon-Wood M, Young B, Heney D (1999) Partnership with children. British Medical Journal. 313:778-780.

Ehlers VJ (2003) Adolescent mothers’ utilization of contraceptive services in South Africa. International Nursing Review. 50:229-241.

Ensign J (2003) Ethical issues in qualitative health research with homeless youths. Journal of Advanced Nursing. 43(1):43-50.

Fanos JH (1999) “My crooked vision”: the well sib views ataxia-telangectasia. American Journal of Medical Genetics. 87:420-425.

Gibson CH (1991) A concept analysis of empowerment. Journal of Advanced Nursing. 16:254-351

Gibson CH(1995) The process of empowerment in mothers of chronically ill children. Jounal of Advanced Nursing. 21:1201-1210.

Gould C (1996) Multiple partnerships in the community. Paediatric Nursing. 8(8):2731.

Grey M, Cameron M, Thurber F (1991) Coping and adaptation in children with diabetes. Nursing Research. 40(3):144-149.

Hart C, Chesson R (1998) Children as consumers. British Medical Journal. 316:1600.

Hek

R

(2004)

Me

and

My

World.

NECF.

Mar.

www.ne-cf.org/core-

files/binder_me_and_my_world.pdf. (Accessed 13.04.04).

Hibbert P (2002) Voices and choices: young people participating in inspections. Barnardo’s. www.barnardos.org.uk/resources (Accessed 13.04.04) Dr Jane Hunt Nursing & Health Service Research Consultant JHNursing Research Consultancy

12

Horgan M, Choonara I, Al-Waidh M, Sambrooks J Ashby D (1996) Measuring pain in neonates: an objective score. Paediatric Nursing. 8(10):24-27

Hunt JA (1998) Empowering health care professionals: a relationship between primary health care teams and paediatric oncology outreach nurse specialists. European Journal of Oncology Nursing. 2(1):27-33.

Hutchby I, Moran-Ellis (eds.) (1998) Children and Social Competence: Arenas for Action. Falmer Press. London.

Kalter NM, Marsden G (1977) Children’s understanding of their emotionally disturbed peers. II. Etiological factors. Psychiatry. 40. 48-58.

Keatinge D, Bellchambers H, Bujack E, Cholowski K, Conway J, Neal P (2002) Communication: Principal barrier to nurse-consumer partnerships. International Journal of Nursing Practice. 8(1):16-22.

Kendall JM, Reeves BC, Latter VS (2001) Multicentre randomised controlled trail of nasal diamorphine for analgesia in children and teenagers with clinical fractures. British Medical Journal. 322:261-265

Kendall L, Sloper P, Lewin RJ, Parsons JM (2003) The views of young people with congenital cardiac disease on designing the services for their treatment. Cardiol Young. 13.11-19.

Kim SJ, Kang KA (2003) Meaning of life for adolescents with a physical disability in Korea. Journal of Advanced Nursing. 43(2):145-157

Kirby P (2000) Involving young researchers. Joseph Rowntree Foundation. Save the Children. London.

Kortesluoma RL, Hentinen M, Nikkonen M (2003) Conducting a qualitative child interview: methodological considerations. Journal of Advanced Nursing. 42(5):434441


13

Krechel SW, Bildner J (1995) CRIES: a new neonatal postoperative pain measurement score. Initial testing of validity and reliability. Paediatric Anaesthesia. 5:53-61.

Langton H, Barnes M, Haslehurst S, Rimmer J, Turton P (2003) Collaboration, user involvement and education: a systematic review of the literature and report of an educational initiative. European Journal of Oncology Nursing. 7(4):242-252.

Lindow V (1993) A service users view. In Wright H, Giddy M (eds.) Nursing: From First Principles to Professional Practice. Chapman and Hall. London. Pp21-31.

MacFadyen L, Hastings C, MacIntosh AM (2001) Cross sectional study of young people’s awareness of and involvement with tobacco marketing. British Medical Journal. 322:513-517

Mayall Berry (1993a) Keeping healthy at home and school: “its’ my body, so it’s my job”. Sociology of Health and Illness. 15(4):488-502.

Mayall Berry (1993b) Keeping children healthy – the intermediate domain. Social Science and Medicine. 36(1):77-83.

McNeish D, Turner C (2001) Involving young people in teenage pregnancy work. Barnardos. www.barnardos.org.uk/resources (accessed 13.04.04)

Meade JA, Lumley MA, Casey RJ (2001) Stress, emotional skill, and illness in children: the importance of distinguishing between children’s and parents’ reports of illness. Journal of Child Psychology and Psychiatry. 42,405-412.

Miller S (1999) Hearing from children who have diabetes. Journal of Child Health. 2(1):5-12.

Natapoff JN (1978) Children’s views of health: a developmental study. American Journal of Public Health. 68,995-1000

National Family and Parenting Institute (2000) Teenagers’ attitudes to parenting: a survey of young peoples’ experiences of being parented, and their views on how to


14

bring up children. This study aimed to provide ‘a clear picture of teenagers’ views on parenting and their experiences of family life’. MORI

Niven CA, Scott PA (2003) The need for accurate perception and informed judgement in determining the appropriate use of the nursing resource: hearing the patient’s voice. Nursing Philosophy. 4(3):201-210.

Noyes J (2000a) ‘Ventilator-dependent’ children who spend prolonged periods of time in intensive care units when they no longer have a medical need or want to be there. Journal of Clinical Nursing. 9:774-783.

Noyes J (2000b) Enabling young ‘ventilator-dependent’ people to express their views and experiences of their care in hospital. Issues and Innovations in Nursing Practice. 31:1206-1215.

Oppenheim

AN

(1992)

Questionnaire

Design,

Interviewing

and

Attitude

Measurement. Pinter Publishers. London.

Ory M, Kronenfeld J (1980) Living with juvenile diabetes mellitus. Journal of Pediatric Nursing. 6(5):47-50.

Pearson A (2002) Just what does the patient want? Editorial. International Journal of Nursing Practice. 8(2):67 Pilgrim D, Waldron L (1998) User involvement in mental health service development: How far can it go? Journal of Mental Health. 7:95-104.

Pridmore P, Bendelow G (1995) Images of health: exploring beliefs of children using the ‘draw and ’write’ technique. Health Education Journal. 54:473-488.

Robinson R (2004) Patient and public involvement in health: the vitality of nursing. Guest editorial. Journal of Nursing Management. 12(1):2-3.

Roose GA, John AM (2003) A focus group investigation into young children’s understanding of mental health and their views on appropriate services for their age group. Child Care, Health & Development. 29(6):545-550.

RCN (1999) Ouch! Sort it out: Children’s experiences of pain. RCN. London. Dr Jane Hunt Nursing & Health Service Research Consultant JHNursing Research Consultancy

15

Royal Marsden Hospital. Adventures of captain chemo and chemo command. An on line patient information resource based on the drawings of a young patient. www.royalmarsden.org/captchemo (accessed 13.04.04).

Rudman M (1996a) User involvement in the nursing curriculum: seeking user’s views. Journal of Psychiatric and Mental Health Nursing. 3:385-390.

Rudman M (1996b) User involvement in mental health nursing practice’ rhetoric or reality? Journal of Psychiatric and Mental Health Nursing. 3:385-390.

Rudolf MC, Sahota P, Barth JH, Walker J (2001) Increasing prevalence of obesity in primary school children: cohort study. British Medical Journal. 322:1094-1095..

Sartain S, Clarhe C, Heyman R (2000) Hearing the voices of children with chronic illness. Journal of Advanced Nursing. 32(4):913-921.

Save the Children/NHS Executive Team (2000) Give us a voice: consultation and participation in child and adolescent mental health services within Trent. Save the Children. London.

Saxena S, Eliahoo J, Majeed A (2002) Socioeconomic and ethnic group differences in self-reported health status and use of health services by children and young people in England: cross-sectional study. British Medical Journal. 325:520. Sloper P (2000) Experiences and support needs of siblings of children with cancer. Health and Social Care in the Community. 8:298-306.

Sloper P, Lightfoot J (2003) Involving disabled and chronically ill children and young people in health service development. Child Care, Health and Development. 29(1):15-20.

Smith RL (2001) Research with children. British Medical Journal. 322:1377-1378

Snethen JA, Broome ME, Bartels J, Warady BA (2001) Adolescents’ Perceptions of Living with End Stage Renal Disease. Pediatric Nursing. 27:159-167.


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Solberg A (1996) The Challenge in Child Research: From ‘Being’ to ‘Doing’. In Brannen J, O’Brien M (eds.) Children in Families. Falmer. London.

Spitzer A (1992) Children’s knowledge of illness and treatment experiences in hemophilia. Journal of Pediatric Nursing. 7:43-51.

Stewart DW, Shamdasani PN (1990) Focus Groups: Theory and Practice. Sage. London.

Takai W (2004) How do deaf infants attain first signs? In Lewis V et al. (eds). The Reality of Research with Children and Young People. The Open University. Sage. London.

Turner C (2003) Are you listening? What disabled children and young people in Wales think about the service they use: A consultation to inform the children and young people’s National Service Framework. September. Welsh Assembly, NCH, Barnardos. www.barnardos.org.uk/resources/researchpublications (accessed 13.04.04).

Walker Z, Townsend J, Oakley L, Donovan C, Smith H (2002) Health promotion for adolescents in primary care. British Medical Journal. 325:524

Wellcome Trust Clinical Research Facility (2004) A longitudinal cohort study concerning maternal nutrition and the emotional development of their offspring at aged eight. This study has consulted school aged children to gain their views of invasive procedures such as body mass index (BMI) measurements. Work in progress.

WTCRF,

Southampton

University.

For

further

information

see

www.wtcrf.soton.ac.uk

Williams C (2002) Mothers, Young People and Chronic Illness. Ashgate. Hampshire. Williams TWN, Moon A (1989) A way in. Five key areas of health education. Health Education Authority. London.

Wilson-Barnett J (1989) Limited autonomy and partnership: professional relationships in health care. Jounal of Medical Ethics. 15:12-16.


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Wood J, Wilson-Barnett J (1999) The influence of user involvement on the learning of mental health nursing students. NTResearch. 4:257-267.

Woodgate RL, Degner LF (2003) Children with cancer and their families believed and expected that symptom suffering was necessary to overcome cancer. Oncology Nursing Forum. 30:479-491

Yoos HL (1994) Children’s illness concepts: old and new paradigms. Pediatric Nursing. 20:134-140.


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Table One: examples of publications were children’s voices and views have been elicited, depicting differing methods

AUTHOR

Action for Sick Children BackettMilburn et al. Bradding & Horstman Callery et al Coates Ehlers Hibbert Grey et al Kalter & Marsden Kim & Kang Kortesluoma et al Miller Noyes Noyes Pridmore & Bendelow Royal Marsden Hospital Saxena et al Snethen et al Solberg Takai Turner Walker et al Williams Williams & Moon Woodgate & Degner

Year of publication Interview

1998

METHODOLOGY Multiple Draw observation Questionnaire & survey & mixed methods write •

2003

•

1999 2003 2004 2003 2002 1991 1977

• • • • • • •

2003 2003

• •

1999 2000a 2000b 1995

• • •

•

•

•

•

2004

•

2002 2001

• •

1996 2004 2003 2002 2002 1989

•

2003

•

•

• •

• • • •


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Table Two: examples of publications were children’s voices and views have been elicited, depicting differing topics Author Allatt(1996) BackettMilburn et al (2003) Bird & Podmore (1990) Brewster (1982) Brodie (1974) Brown (1985) Callery et al (2003) De Montigny (1998) Ehlers (2003) Fanos (1999) Grey et al (1991) Hibbert (2002) Kalter & Marsden (1977) Kendall et al (2001) Kendall et al (2003) Kim & Kang (2003) MacFayden et al (2001) Mayall Berry (1993a) Mayall Berry (1993b) McNeish & Turner (2001) Mead et al (2001) Miller (1999) Natapoff (1978) National Family and Parenting Institute (2000) Noyes (2000a) Noyes

1

2

3

4

5

6

7

8

9

10

11 •

12

13

14

15

•

•

• • • • • • • • • •

•

• •

•

• • • • • • •


• •

• • 20

(2000b) Ory & Kronenfeld (1980)

•

• Roose & John (2003) Royal College of Nursing (1999)


•

•

21

Table Two contd. Author 1 Royal Marsden Hospital (2004) Rudolph et al (2001) Sartain et al (2000) Save the Children/NHS Executive (2000) Saxena et al (2002) Snethen et al (2001) Sloper (2000) Sloper & Lightfoot (2003) Spitzer (1992) Turner (2003) Walker et al (2002) Wellcome Trust Clinical Research Facility (2004) Williams • (2002) Woodgate & Degner (2003) Yoos (1994)

2 •

3

4

5

6

7

8

9

•

10

11

12

13

14

15

•

• •

• • •

• •

•

• •

• • •

• • •

Key to Table Two 1 asthma 2 cancer 3 chronic illness & disability pregnancy 4 diabetes 5 health & social inequalities development 6 health & illness & sibling views dependent children 7 invasive procedures 8 looked after children


22

9 10 11

mental health obesity parenting & teenage

12

pain 13

service design &

14

technology

15

smoking