Levels of satisfaction with children’s respite services, parental coping and family functioning
Corresponding Author
Aidan McKiernan BA, PhD
School of Psychology, University College Dublin, Dublin, Ireland
Clinical Psychology, LauraLynn Ireland's Children's Hospice, Dublin, Ireland
Correspondence
Aidan McKiernan, Principal Clinical Psychologist at LauraLynn Ireland’s Children’s Hospice, Leopardstown Road, Foxrock, Co. Dublin and Adjunct Assistant Professor at the School of Psychology, UCD.
Email: [email protected]
Search for more papers by this authorAlan Carr BA, MA, PhD, C Clin Psychol FPsI, C Psychol FBPsS, Reg FT (FTAI), ECP
School of Psychology, University College Dublin, Dublin, Ireland
Search for more papers by this authorLynsey O’Keeffe PhD
Educational Research Centre, Dublin, Ireland
Search for more papers by this authorEllen Butler BA, MSc
Clinical Psychology, University of Dublin Trinity College, Dublin, Ireland
Search for more papers by this authorClaire Quinn RGN, MSc, BNS (hons), PGD, ONC
School of Nursing and Midwifery, National University of Ireland, Galway, Ireland
Search for more papers by this authorSuzanne Guerin BA, PhD
School of Psychology, University College Dublin, Dublin, Ireland
Search for more papers by this authorCorresponding Author
Aidan McKiernan BA, PhD
School of Psychology, University College Dublin, Dublin, Ireland
Clinical Psychology, LauraLynn Ireland's Children's Hospice, Dublin, Ireland
Correspondence
Aidan McKiernan, Principal Clinical Psychologist at LauraLynn Ireland’s Children’s Hospice, Leopardstown Road, Foxrock, Co. Dublin and Adjunct Assistant Professor at the School of Psychology, UCD.
Email: [email protected]
Search for more papers by this authorAlan Carr BA, MA, PhD, C Clin Psychol FPsI, C Psychol FBPsS, Reg FT (FTAI), ECP
School of Psychology, University College Dublin, Dublin, Ireland
Search for more papers by this authorLynsey O’Keeffe PhD
Educational Research Centre, Dublin, Ireland
Search for more papers by this authorEllen Butler BA, MSc
Clinical Psychology, University of Dublin Trinity College, Dublin, Ireland
Search for more papers by this authorClaire Quinn RGN, MSc, BNS (hons), PGD, ONC
School of Nursing and Midwifery, National University of Ireland, Galway, Ireland
Search for more papers by this authorSuzanne Guerin BA, PhD
School of Psychology, University College Dublin, Dublin, Ireland
Search for more papers by this authorAbstract
Little is known about how parents’ experiences of respite services or ‘short breaks’ for a child with complex medical needs relate to family functioning and the manner in which parents cope. The aim of this study was to examine the relationship between parents’ satisfaction with short breaks, family functioning and parental coping and to determine whether these variables change over time. The sample included 32 families receiving short breaks. A repeated measures quantitative design was used, with data collected at baseline and 12 months. The main outcome variables were satisfaction with short breaks, family functioning and parental coping. At baseline, descriptive statistics showed positive levels of satisfaction with services and coping, while family functioning scores suggested more negative profiles. Also at baseline, significant negative correlations were identified between the age of the child receiving short breaks and certain approaches to parental coping. At Time 2 (n = 17, 73% of possible responses), satisfaction with services was significantly positively correlated with aspects of family functioning and coping. Using dependent t tests, no evidence was found of significant change overtime in satisfaction or family functioning for the sample who completed data collection at both time points. However, a significant decrease in use of certain coping approaches was found over time. While parents’ satisfaction levels with short breaks were high across test occasions, there is need for service development aimed at providing interventions that are tailored to ameliorate tension within the family and promote active parental coping over time.
REFERENCES
- Abbott, D., Townsley, R., & Watson, D. (2005). Multi-agency working in services for disabled children: What impact does it have on professionals? Health and Social Care in the Community, 13, 155–163. https://doi.org/10.1111/j.1365-2524.2005.00543.x
- ACT. (2009). A Guide to the Development of Children’s Palliative Care Services. Bristol: Association for Children with Life-threatening or Terminal Conditions and their Families.
- Barlow, J., Powell, L., & Gilchrist, M. (2006). The influence of the training and support programme on the self-efficacy and psychological well-being of parents of children with disabilities: A controlled trial. Complimentary Therapies in Clinical Practice, 12, 55–63. https://doi.org/10.1016/j.ctcp.2005.02.005
- Brown, E. (2007). The impact of life-limiting illness on the family. In E. Brown & B. Warr (Eds.), Supporting the child and the family in pediatric palliative care (pp. 128–135). London and Philadelphia: Jessica Kingsley Publishers.
- Champagne, M., & Mongeau, S. (2012). Effects of respite care services in a children’s hospice: The parents’ point of view. Journal of Palliative Care, 28, 245–251. https://doi.org/10.1177/082585971202800402
- Cohen, E., Kuo, D. Z., Agrawal, R., Berry, J. G., Bhagat, S. K., Simon, T. D., & Srivastava, R. (2011). Children with medical complexity: An emerging population for clinical and research initiatives. Pediatrics, 127(3), 529–538. https://doi.org/10.1542/peds.2010-0910
- Coughlin, M. B., & Sethares, K. A. (2017). Chronic Sorrow in Parents of Children with a Chronic Illness or Disability: An Integrative Literature Review. Journal of Pediatric Nursing: Nursing Care of Children and Families, 37, 108–116.
- Craig, F., Abu-Saad Huijer, H., Benini, F., Kuttner, L., Wood, C., Feraris, P. C., & Zernikow, B. (2008). IMPaCCT: Standards of paediatric palliative care in Europe. European Journal of Palliative Care, 14, 109–114.
- Davies, B., & Siden, H. (2005). Children in palliative medicine: An overview. In D. Doyle, G. Hanks, N. Cherry, & K. Calman (Eds.), Oxford textbook of palliative medicine ( 3rd ed., pp. 1301–1317). Oxford, UK: Oxford University Press.
- Davies, B., Steele, R., Collins, J. B., Cook, K., & Smith, S. (2004). The impact on families of respite care in a children’s hospice program. Journal of Palliative Care, 20(4), 277–286.
- Department of Health & Children/Irish Hospice Foundation. (2005). A palliative care needs assessment for children. Dublin: Stationary Office.
- 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. https://doi.org/10.1111/j.1365-2702.2008.02630.x
- Gaston, L., & Sabourin, S. (1992). Client satisfaction and social desirability in psychotherapy. Evaluation and Program Planning, 15(3), 227–231. https://doi.org/10.1016/0149-7189(92)90085-9
- 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. https://doi.org/10.12968/ijpn.2010.16.10.79216
- Hamilton, E., Carr, A., Cahill, P., Cassells, C., & Hartnett, D. (2015). Psychometric properties and responsiveness to change of 15- and 28-item versions of the SCORE: A family assessment questionnaire. Family Process, 54(3), 454–463.
- Heaton, J., Noyes, J., Sloper, T., & Shah, R. (2005). Families’ experiences of caring for technology-dependent children: A temporal perspective. Health and Social Care in the Community, 13, 441–450. https://doi.org/10.1111/j.1365-2524.2005.00571.x
- Hewitt-Taylor, J. (2005). Caring for children with complex and continuing health needs. Nursing Standard, 19, 41–47. https://doi.org/10.7748/ns2005.06.19.42.41.c3900
10.7748/ns2005.06.19.42.41.c3900 Google Scholar
- National Hospice and Palliative Care Organisation (NHPCO). (2001). The compendium of pediatric palliative care. Alexandria, VA:Author.
- Jordan, J. (2016). Evaluation of the Children's Palliative Care Programme (CPCP): A jointly funded programme of work arising from Palliative care for children with life-limiting conditions – A national policy: Summary report.
- Knapp, C. A., & Contro, N. (2009). Family support services in pediatric palliative care. American Journal of Hospice and Palliative Medicine, 26(6), 476–482. https://doi.org/10.1177/1049909109350205
- Larsen, D., Attkinson, C., Hargreaves, W., & Nguyen, T. (1979). Assessment of client/patient satisfaction: Development of a general scale. Evaluation and Programme Planning, 2, 197–207. https://doi.org/10.1016/0149-7189(79)90094-6
- Ling, J., Payne, S., Connaire, K., & McCarron, M. (2015). Parental decision-making on utilisation of out-of-home respite in children's palliative care: Findings of qualitative case study research - a proposed new model. Child: Care Health and Development, 42(1), 51–59.
- MacDonald, H., & Callery, P. (2008). Parenting children requiring complex care: A journey through time. Child: Care, Health and Development, 34(2), 207–213. https://doi.org/10.1111/j.1365-2214.2007.00790.x
- McCubbin, H. I., McCubbin, M. A., Patterson, J. M., Cauble, A. E., Wilson, L. R., & Warwick, W. (1983). CHIP-Coping Health Inventory for parents: An assessment of parental coping patterns in the care of the chronically ill child. Journal of Marriage and the Family, 45, 359–370. https://doi.org/10.2307/351514
- McCubbin, M. A. (1993). Family stress theory and the development of nursing knowledge about family adaptation. In S. L. Feetham, S. B. Meister, J. M. Bell, & C. L. Gillis (Eds.), The nursing of families (pp. 46–58). Newbury Park, CA: Sage Publications Inc.
- McDaniel, S., Hepworth, J., & Doherty, W. (1992). Medical family therapy: A biopsychosocial approach to families with health problems. New York: Basic.
- MacDonald, H., & Callery, P. (2004). Different meanings of respite: A study of parents, nurses and social workers caring for children with complex needs. Child: Care. Health & Development, 30, 279–288.
- McNally, S., Ben-Schlomooe, Y., & Newman, S. (1999). The effects of respite care on informal carers' well-being: a systematic review. Disability and Rehabilitation, 21(1), 1–14. https://doi.org/10.1080/096382899298043.
- Monterosso, L., Kristjanson, L., Aoun, S., & Phillips, M. B. (2007). Supportive and palliative care needs of families of children with life-threatening illnesses in Western Australia: Evidence to guide the development of a palliative care service. Palliative Medicine, 21, 689–696. https://doi.org/10.1177/0269216307083032
- O’Hare, A., Whelan, C. T., & Commins, P. (1991). The development of an Irish census-based social class scale. The Economic and Social Review, 22, 135–156.
- Olsen, R., & 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. https://doi.org/10.1046/j.1365-2648.2001.01789.x
- Popp, J. M., Robinson, J. L., Britner, P. A., & Blank, T. O. (2014). Parent Adaptation and Family Functioning in Relation to Narratives of Children with Chronic Illness. Journal of Pediatric Nursing: Nursing Care of Children and Families, 29(1), 58–64.
- Price, J., Jordan, J., Prior, L., & Parkes, J. (2011). Living through the death of a child: A qualitative study of bereaved parents’ experiences. International Journal of Nursing Studies, 48, 1384–1392. https://doi.org/10.1016/j.ijnurstu.2011.05.006
- Remedios, C., Willenberg, L., Zordan, R., Murphy, A., Hessel, G., & Philip, J. (2015). A pre-test and post-test study of the physical and psychological effects of out-of-home respite care on caregivers of children with life-threatening conditions. Palliative Medicine, 29, 223–230. https://doi.org/10.1177/0269216314560008
- Rolland, J. (1994). Families, illness, and disability, an integrative treatment model. New York: Basic Books.
- Sherman, B. (1995). Impact of home-based respite care on families of children with chronic illnesses. Children’s Health Care, 24(1), 33–45. https://doi.org/10.1207/s15326888chc2401_4
- Steele, R., & Davies, B. (2006). Impact on parents when a child has a progressive, life-threatening illness. International Journal of Palliative Nursing, 12, 576–585. https://doi.org/10.12968/ijpn.2006.12.12.22544
- Stevens, M. M. (2005). Care of the dying child and adolescent: Family adjustment and support. In D. Doyle, G. Hanks, N. Cherry, & K. Calman (Eds.), Oxford textbook of palliative medicine ( 3rd ed., pp. 1301–1317). Oxford, UK: Oxford University Press.
- Stratton, P., Lask, J., Bland, J., Nowotny, E., Evans, C., Singh, R., … Peppiatt, A. (2014). Detecting therapeutic improvement early in therapy: Validation of the SCORE-15 index of family functioning and change. Journal of Family Therapy, 36(1), 3–19. https://doi.org/10.1111/1467-6427.12022
- Yantzi, N., Rosenberg, M., & McKeever, P. (2006). Getting out of the house: The challenges mothers face when their children have long-term care needs. Health and Social Care in the Community, 15, 45–55. https://doi.org/10.1111/j.1365-2524.2006.00663.x