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Exploring perceptions of psychological services in a children's hospice in the United Kingdom

Published online by Cambridge University Press:  21 November 2012

Jo Wray ,
Bruce Lindsay ,
Kenda Crozier ,
Lauren Andrews  and
Janet Leeson
Jo Wray*
Affiliation:
Great Ormond Street Hospital for Children NHS Trust, London, United Kingdom
Bruce Lindsay
Affiliation:
University of East Anglia, Norwich, United Kingdom
Kenda Crozier
Affiliation:
University of East Anglia, Norwich, United Kingdom
Lauren Andrews
Affiliation:
East Anglia's Children's Hospices, Cambridge, United Kingdom
Janet Leeson
Affiliation:
East Anglia's Children's Hospices, Cambridge, United Kingdom
*
Address correspondence and reprint requests to: Jo Wray, Centre for Nursing and Allied Health Research, Great Ormond Street Hospital for Children NHS Trust, Great Ormond Street, London WC1N 3JH, United Kingdom. E-mail: [email protected]
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Abstract

Background:

The provision of emotional and psychological support for all family members who need it is an essential element of holistic palliative care. Within East Anglia's Children's Hospice, teams of professionally trained and experienced workers offer psychosocial support to all family members at all times during the child's and family's journey. However, the effectiveness and appropriateness of current psychosocial provision is unclear, as is the requirement for any additional psychological services.

Objective:

The purpose of this study was to elicit perceptions about current psychological support within the hospice from a group of stakeholders (parents, hospice staff, and external professionals).

Method:

Forty-five parents participated in family focus groups, telephone interviews, individual interviews in their home, or a web-based survey. Ninety-five hospice staff (including nurses, carers, play specialists, therapists, and family support practitioners) and 28 external staff (including physicians, nurses, and commissioning managers) were seen using a mixture of focus group and individual meetings. Focus groups and meetings were held at the hospice building or at an external venue. Interviews were recorded and transcribed verbatim and analyzed using thematic coding.

Results:

Two main themes addressing perceptions of current psychological provision emerged: “understanding psychological support” and “unmet psychological need.” Subthemes linked to support included choice, staff roles and labels, communication, and flexibility, whereas the themes within unmet need had a stronger focus on people and problems.

Significance of results:

Understanding different user perspectives is an important first step in enhancing current psychological provision; operationalizing the findings will be challenging.

Keywords

Psychological supportChildrenPerceptionsHospiceFamily support
Type
Original Articles
Information
Palliative & Supportive Care , Volume 11 , Issue 5 , October 2013 , pp. 373 - 382
Copyright
Copyright © Cambridge University Press 2012 

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References

REFERENCES

Association for Children's Palliative Care/Children's Hospices U.K. (2009). Right People, Right Place, Right Time. Bristol: ACTGoogle Scholar
Agnew, A., Manktelow, R., Taylor, B., et al. (2010). Bereavement needs assessment in specialist palliative care: A review of the literature. Palliative Medicine, 24, 46–59.CrossRefGoogle ScholarPubMed
Beresford, B., Tozer, R., Rabiee, P., et al. (2004). Developing an approach to involving children with autistic spectrum disorders in a social care research project. British Journal of Learning Disabilities, 32, 180–185.Google Scholar
British Psychological Society. (2008). The Role of Psychology in End of Life Care. Leicester: British Psychological Society.Google Scholar
Brehaut, J.C., Garner, R.E., Miller, A.R., Lach, , et al. (2011). Changes over time in the health of caregivers of children with health problems: Growth-curve findings from a 10-year Canadian population-based study. American Journal of Public Health, 101, 2308–2316.CrossRefGoogle ScholarPubMed
Brinchmann, B.S. (1999). When the home becomes a prison: Living with a severely disabled child. Nursing Ethics, 6, 137–143.CrossRefGoogle ScholarPubMed
Carnevale, F.A., Alexander, E., Davis, M., et al. (2006). Daily living with distress and enrichment: The moral experience of families with ventilator-assisted children at home. Pediatrics, 117, e48–60.Google Scholar
Crawford, A.A. (2004). Psychological models that help hospice workers perform mental status evaluations. The American Journal of Hospice and Palliative Care, 21, 261–266.Google Scholar
Davies, B., Collins, J. B., Steele, R., et al. (2005). Children's perspectives of a pediatric hospice program. Journal of Palliative Care, 21, 252–261.Google Scholar
Davies, R. (2005). Mothers' stories of loss: Their need to be with their dying child and their child's body after death. Journal of Child Health Care, 9, 288–300.Google Scholar
DH. (2007). Aiming High for Disabled Children.Google Scholar
DH. (2008). Better Care: Better Lives.Google Scholar
East Anglia's Children's Hospice. (2010). Department of Health £30 Million Funding to Support New Children's and Young People's Palliative Care Projects in 2010–2011: Application by East Anglia's Children's Hospices.Google Scholar
Eaton, N. (2008). ‘I don't know how we coped before': A study of respite care for children in the home and hospice. Journal of Clinical Nursing, 17, 3196–3204.Google Scholar
Grinyer, A., Payne, S. & Barbarachild, Z. (2010). Issues of power, control and choice in children's hospice respite care services: A qualitative study. International Journal of Palliative Nursing, 16, 505–510.CrossRefGoogle ScholarPubMed
Haley, W.E., Larson, D.G., Kasl–Godley, J., et al. (2003). Roles for psychologists in end-of-life care: emerging models of practice. Professional Psychology: Research and Practice, 34, 626–633.Google Scholar
Heaton, J., Noyes, J., Sloper, P., et al. (2005). Families' experiences of caring for technology-dependent children: A temporal perspective. Health & Social Care in the Community, 13, 441–450.Google Scholar
Hiatt, K., Stelle, C., Mulsow, M., et al. (2007). The importance of perspective: evaluation of hospice care from multiple stakeholders. The American Journal of Hospice and Palliative Care, 24, 376–382.CrossRefGoogle ScholarPubMed
Junger, S., Pestinger, M., Elsner, F., et al. (2007). Criteria for successful multiprofessional cooperation in palliative care teams. Palliative Medicine, 21, 347–354.Google Scholar
Kirk, S. & Pritchard, E. (2011). An exploration of parents' and young people's perspectives of hospice support. Child: Care, Health and Development, 38, 32–40.CrossRefGoogle Scholar
Malcolm, C., Forbat, L., Knighting, K., et al. (2008). Exploring the experiences and perspectives of families using a children's hospice and professionals providing hospice care to identify future research priorities for children's hospice care. Palliative Medicine, 22, 921–928.Google Scholar
Maynard, L., Rennie, T., Shirtliffe, J., et al. (2005). Seeking and using families' views to shape children's hospice services. International Journal of Palliative Nursing, 11, 624–630.Google Scholar
Mitchell, W. & Sloper, P. (2011). Making choices in my life: listening to the ideas and experiences of young people in the UK who communicate non-verbally. Children and Youth Services Review, 33, 521–527.CrossRefGoogle Scholar
National Institute for Health and Clinical Excellence (2004). Improving supportive and palliative care for adults with cancer. The manual.Google Scholar
O'Connor, M. & Fisher, C. (2011). Exploring the dynamics of interdisciplinary palliative care teams in providing psychosocial care: “Everybody thinks that everybody can do it and they can't”. Journal of Palliative Medicine, 14, 191–196.CrossRefGoogle Scholar
Oulton, K. & Heyman, B. (2009). Devoted protection: how parents of children with severe learning disabilities manage risk. Health, Risk and Society, 11, 303–319.CrossRefGoogle Scholar
Roberts, K. & Lawton, D. (2001). Acknowledging the extra care parents give their disabled children. Child: Care, Health and Development, 27, 307–319.Google Scholar
Rodriguez, A. & King, N. (2009). The lived experience of parenting a child with a life-limiting condition: A focus on the mental health realm. Palliative and Supportive Care, 7, 7–12.CrossRefGoogle ScholarPubMed
Sherman, B.R. (1995). Impact of home-based respite care on families of children with chronic illnesses. Child Health Care, 24, 33–45.Google Scholar
Sloper, T. & Beresford, B. (2006). Families with disabled children. British Medical Journal, 333, 928–929.Google Scholar
Stainton, T. & Besser, H. (1998). The positive impact of children with an intellectual disability on the family. Journal of Intellectual and Developmental Disability, 23, 57–70.Google Scholar
Steele, R., Davies, B., Collins, J.B., et al. (2005). End-of-life care in a children's hospice program. Journal of Palliative Care, 21, 5–11.Google Scholar
Wilkinson, S., Croy, P., King, M., et al. (2007). Are we getting it right? Parents' perceptions of hospice child bereavement support services. Palliative Medicine, 21, 401–407.Google Scholar
Yantzi, N.M., Rosenberg, M.W. & McKeever, P. (2007). Getting out of the house: The challenges mothers face when their children have long-term care needs. Health & Social Care in the Community, 15, 45–55.Google Scholar