Remember Me
Or use your Academic/Social account:


Or use your Academic/Social account:


You have just completed your registration at OpenAire.

Before you can login to the site, you will need to activate your account. An e-mail will be sent to you with the proper instructions.


Please note that this site is currently undergoing Beta testing.
Any new content you create is not guaranteed to be present to the final version of the site upon release.

Thank you for your patience,
OpenAire Dev Team.

Close This Message


Verify Password:
Verify E-mail:
*All Fields Are Required.
Please Verify You Are Human:
fbtwitterlinkedinvimeoflicker grey 14rssslideshare1
Hunt, Anne; Brown, Erica; Coad, Jane; Staniszewska, Sophie; Hacking, Suzanne; Chesworth, Brigit; Chambers, Lizzie (2015)
Publisher: Sage Publications Ltd.
Languages: English
Types: Article
Subjects: RJ
Children with life limiting conditions and their families have complex needs. Evaluations must consider their views and perspectives to ensure care is relevant, appropriate and acceptable. We consulted with children, young people, their parents and local professionals to gain a more informed picture of issues affecting them prior to preparing a bid to evaluate services in the area. Multiple methods included focus groups, face-to-face and telephone interviews and participatory activities. Recordings and products from activities were analysed for content to identify areas of relevance and concern. An overarching theme from parents was ‘Why does it happen like this?’ Services did not seem designed to meet their needs. Whilst children and young people expressed ideas related to quality of environment, services and social life, professionals focused on ways of meeting the families’ needs. The theme that linked families’ concerns with those of professionals was ‘assessing individual needs’. Two questions to be addressed by the evaluation are (1) to what extent are services designed to meet the needs of children and families and (2) to what extent are children, young people and their families consulted about what they need? Consultations with families and service providers encouraged us to continue their involvement as partners in the evaluation.
  • The results below are discovered through our pilot algorithms. Let us know how we are doing!

    • ACT (2009) A Guide to the Development of Children's Palliative Care Services. Bristol, UK: ACT.
    • ACT (2010) Right People, Right Place, Right Time. Bristol, UK: ACT.
    • Bewley C and Glendinning C (1994) Representing the views of disabled people in community care planning. Disability and Society 9: 301-314.
    • Bluebond-Langner M (1980) The Private Worlds of Dying Children. Princeton, NJ: Princeton University Press.
    • Bluebond-Langner M (1989) Worlds of dying children and their well siblings. Death Studies 13: 1-16.
    • Brett J, Staniszewska S, Mockford C, et al. (2012). Mapping the impact of patient and public involvement on health and social care research: A systematic review. Health Expectations, Epub ahead of print 19 July 2012. DOI:10.1111/j.1369-7625.2012.00795.x
    • Brown E and Warr B (2007) Supporting the Child and the Family in Paediatric Palliative Care. Bristol, UK: Jessica Kingsley Publications.
    • Carter B (2012) Children's well-being: Priorities and considerations. Journal of Child Health Care 16(2): 107-108.
    • Carter B and Coad J (2009) Community Children's Nursing in England. An Appreciative Review of CCNs in England. London, UK: Department of Health.
    • Carter B, Lambrenos K and Thursfield J (2002) A pain workshop: An approach to eliciting the views of young people with chronic pain. Journal of Clinical Nursing 11: 753-762.
    • Cavet J and Sloper P (2004) The participation of children and young people in decisions about UK service development. Child Care Health and Development 30: 613-621.
    • Coad J and Coad N (2008) Children and young people's preference of thematic design and colour for their hospital environment. Journal of Child Health Care 12: 33-48.
    • Coad J, Plumridge G and Metcalfe A (2009) Involving children and young people in the development of artbased research tools. Nursing Research 16: 56-64.
    • Coe C, Gibson A, Spencer N, et al. (2008) Sure start: Voices of the 'hard-to-reach'. Child Care Health and Development 34: 447-453.
    • Coyne I and Kirwan L (2012) Ascertaining children's wishes and feelings about hospital life. Journal of Child Health Care 16(3): 293-304.
    • Craft A and Killen S (2007) Palliative Care Services of Children and Young People in England. London, UK: Department of Health.
    • Crawford MJ, Aldridge T, Bhui K, et al. (2003) User involvement in the planning and delivery of mental health services: A cross-sectional survey of service users and providers. Acta Psychiatrica Scandinavica 107: 410-414.
    • Curtis K, Liabo K, Roberts H, et al. (2004) Consulted but not heard: A qualitative study of young people's views of their local health service. Health Expect 7: 149-156.
    • Devereux G, Stellitano L, Verity CM, et al. (2004) Variations in neurodegenerative disease across the UK: Findings from the national study of Progressive Intellectual and Neurological Deterioration (PIND). Archives of Disease in Childhood 89: 8-12.
    • Department of Education and Skills (DfES) (2004) Every Child Matters: Change for Children. London, UK: Department of Education and Skills.
    • Department of Health (2004) National Service Framework for Children, Young People and Maternity Services: Standard 8: Disabled Children and Young People and Those with Complex Health Needs. London, UK: Department of Health, Department of Skills and Education.
    • Department of Health (2006) Transition: Getting It Right for Young People. Improving the Transition of Young People with Long Term Conditions from Children's to Adult Health Services. London, UK: Department of Health.
    • Department of Health (2008) Better Care: Better Lives. London, UK: Department of Health.
    • Department of Health (2009) Putting Patients at the Heart of Care: The Vision for Patient and Public Engagement in Health and Social Care. London, UK: Department of Health.
    • Department of Health (2010) Equity and Excellence: Liberating the NHS. London, UK: Department of Health.
    • Dickert N and Sugarman J (2005) Ethical goals of community consultation in research. American Journal of Public Health 95: 1123-1127.
    • Edwards V, Wyatt K, Logan S, et al. (2011) Consulting parents about the design of a randomized controlled trial of osteopathy for children with cerebral palsy. Health Expectations 14: 429-438.
    • Farrell C (1999) The patients' charter: A tool for quality improvement? International Journal of Health Care Quality Assurance 12: 129-134.
    • Frager G and Collins JJ (2006) Symptoms in life-threatening illness. In: Goldman A, Hain R and Liben S (eds) Oxford Textbook of Palliative Care for Children. Oxford, UK: Oxford University Press, pp. 231-247.
    • Fraser LK, Childs AM and Miller M (2012a) A cohort study of children and young people with progressive neuromuscular disorders: Clinical and demographic profiles and changing patterns of referral for palliative care. Palliative Medicine 26(7): 924-929.
    • Fraser LK, Miller M, Hain R, et al. (2012b) Rising national prevalence of life-limiting conditions in children in England. Pediatrics 129 (4): 923-929.
    • Gatrad AR, Brown E, Notta H, et al. (2003) Palliative care needs of minorities. British Medical Journal 327: 176-177.
    • Glendinning C, Kirk S, Guiffrida A, et al. (2001) Technology-dependent children in the community: Definitions, numbers and costs. Child Care Health and Development 27: 321-334.
    • Hallett-Hughes T, Craft A and Davies B (2011) Palliative Care Funding Review. Creating a Fair and Transparent Funding System. London, UK: Department of Health. Available at: https://www.gov.uk/government/ uploads/system/uploads/attachment_data/file/215107/dh_133105.pdf. (accessed 7 October 2013).
    • Hannan J and Gibson F (2005) Advanced cancer in children: How parents decide on final place of care for their dying child. International Journal of Palliative Nursing 11: 284-291.
    • Hunt A, Elston S and Galloway J (2003) Voices for Change. Current Perceptions of Services for Children with Palliative Care Needs and Their Families. Bristol, UK: Association for Children's Palliative Care (ACT).
    • Hunt A, Coad J, West E, et al. (2013) The BiG study for life-limited children and their families. Final Report. Bristol, UK: Together for Short Lives.
    • INVOLVE (2012) Briefing notes for researchers involving the public in NHS, public health and social care research. INVOLVE Eastleigh. Available at: http://www.invo.org.uk/wp-content/uploads/2012/04/ INVOLVEBriefingNotesApr2012.pdf (accessed 7 October 2013)
    • James Lind Alliance Priority Setting Partnerships (2009). Setting priorities for treatment uncertainties: A review of methods. www.lindalliance.org/pdfs/methods_page/jla_priority_setting_approaches_v2_nov_ 09.pdf (accessed 24 July 2013).
    • Lambert V, Coad J, Hicks P and Glacken M (2013) Young children's perspectives of ideal physical design features for hospital-built environments. Journal of Child Health Care. Epub ahead of print 19 February 2013. DOI:10.1177/1367493512473852.
    • Lewis M and Pontin D (2008) Caseload management in community children's nursing. Paediatric Nursing 20: 18-22.
    • Lloyd M, Preston-Shoot M, Temple B, et al. (1996) Whose project is it anyway? Sharing and shaping the research and development agenda. Disability and Society 11: 301-315.
    • McIntosh J and Runciman P (2008) Exploring the role of partnership in the home care of children with special health needs: Qualitative findings from two service evaluations. International Journal of Nursing Studies 45: 714-726.
    • Malcolm C, Knighting K, Forbat L, et al. (2009) Prioritization of future research topics for children's hospice care by its key stakeholders: A Delphi study. Palliative Medicine 23: 398-405.
    • Morrow E, Ross F, Grocott P, et al. (2010) A model and measure of quality service user involvement in health research. Special Issue of International Journal of Consumer Studies 34: 532-539.
    • Olsen R and Maslin-Prothero P (2001) Dilemmas in the provision of own-home respite support for parents of young children with complex health care needs: Evidence from an evaluation. Journal of Advanced Nursing 34: 603-610.
    • Oliver S R, Rees R W, Clarke-Jones L, et al. (2008). A multidimensional conceptual framework for analysing public involvement in health services research. Health Expectations 11(1): 72-84.
    • Rollins JA (2005) Tell me about it: Drawing as a communication tool for children with cancer. Journal of Pediatric Oncology Nursing 22: 203-221.
    • Save the Children (2001) Learning to listen: Consulting children and young people with disabilities. Available at: http://www.savethechildren.org.uk/en/54_5165.htm (accessed 4 March 2013).
    • Staley K (2009) Exploring impact: Public involvement in NHS, public health and social care research. Available at: http://www.invo.org.uk/pdfs/Involve_Exploring_Impactfinal28.10.09.pdf (accessed 6 March 2013).
    • Staniszewska S (2009) Patient and public involvement in health services and health research: A brief overview of evidence, policy and activity Journal of Nursing Research 14(4): 295-298.
    • Staniszewska S, Herron-Marx S and Mockford C (2008) Measuring the impact of patient and public involvement: The need for an evidence base. International Journal for Quality in Health Care 20: 373-374.
    • Staniszewska S, Brett J, Monkford C and Barber R (2011) The GRIPP checklist: Strengthening the quality of patient and public involvement reporting in research. International Journal of Technology Assessment in Health Care 27(4): 391-399.
    • Staniszewska S, Jones N, Newburn M, et al. (2007) User involvement in the development of a research bid: Barriers, enablers and impacts. Health Expectations 10: 173-183.
    • Steele R, Bosma H, Johnston MF, et al. (2008) Research priorities in pediatric palliative care: A Delphi study. Journal of Palliative Care 24: 229-239.
    • The Children's Society (2012) Promoting positive well-being for children: A report for decision-makers in parliament, central government and local areas. The Children's Society, London, UK. Available at: http://www.childrenssociety.org.uk/sites/default/files/tcs/good_childhood_report_2012_final_0.pdf. (accessed 7 October 2013).
    • Watson D, Abbott D and Townsley R (2007) Listen to me, too! Lessons from involving children with complex healthcare needs in research about multi-agency services. Child Care Health and Development 33: 90-95.
    • World Health Organization (2007) People centred health care. A policy framework. Available at: www. wpro.who.int/health_services/people_at_the_centre_of_care/documents/ENG-PCIPolicyFramework. pdf (accessed 6 March 2013).
    • Worth A, Irshad T, Bhopal R, et al. (2009) Vulnerability and access to care for South Asian Sikh and Muslim patients with life limiting illness in Scotland: Prospective longitudinal qualitative study. British Medical Journal 338: b183.
  • No related research data.
  • No similar publications.

Share - Bookmark

Cite this article