An evaluation of Very Special Kids (VSK) family support services for parents of children with life-threatening disease
Aim
Caring for a child with a life-threatening condition can have a significant psychosocial impact on all family members. Very Special Kids (VSK) is Victoria’s sole paediatric hospice. VSK provides a range of support from the time of the child’s diagnosis through to recovery or bereavement. The broad aim of this study was to: (1) Examine the psychosocial impact of caring for a child with a life-threatening disease, and (2) understand parents’ lived experiences of caregiving. This study was undertaken with a view to exploring how current VSK services meet parents’ psychosocial needs, with implications for improving support services available to parents of children with life-threatening conditions.
Outcomes
This study involved a survey of 145 parents (mean age: 42 years) who were caring for a child with a life-threatening condition. In addition, 14 parents and 15 VSK Family Support Workers participated in an in-depth interview or focus group to share their experiences in more depth.
A consistent finding of this study was the need for greater emotional support to assist carers in coping with the immense and ongoing challenges of caring for a child with a life-threatening illness. This was in the setting of significant social and physical isolation over a prolonged period, and often compromised health. Carers demonstrated a significant impact from their caregiving role, in particular reporting high levels of carer strain and low family wellbeing, relative to other carers who are supporting a person with palliative care needs. Carers’ greatest unmet needs included ‘knowing what to expect in future’ (64%) and ‘dealing with feelings and worries’ (60%). Accordingly, almost half of respondents (47%) were dealing with one or more clinically significant psychological conditions.
VSK was identified as a core, valued service to respondents in meeting some of these needs for emotional support. A series of service recommendations were made to build upon current supports, including offering improved opportunities for psychological assessment, peer-support, education interventions, and provision of grief-focused strategies and counselling.
Project Team
- Anna Collins, Research Fellow, Centre for Palliative Care
- Dr Kristina Thomas, Senior Research Fellow, Centre for Palliative Care
Key Contact
Name: Anna Collins
Email: anna.collins@svha.org.au
Funding Source
Very Special Kids (VSK)
Key Publications
- Lived experiences of parents caring for a child with a life-limiting condition in Australia: A qualitative study. Anna Collins, Nicole Hennessy-Anderson, Sarah Hosking, Jenny Hynson, Cheryl Remedios and Kristina Thomas. Palliative Medicine. 2016 DOI: 10.1177/0269216316634245. Read More.
- Collins, A. & Thomas, K. An evaluation of the support services provided by Very Special Kids for parents of children with a life-threatening condition. June 2014. Centre for Palliative Care: Melbourne, Victoria.