Background Harnessing the experiences of parents of life-limited children remains a research priority nationally and internationally. Existing evidence outlines the needs of this group, however, less information is available as to how well these needs are being met by services from the perspective of parents in the UK. The parent responsibility for providing and navigating care for their child is well documented, therefore, it is important we understand the barriers and facilitators faced by families when accessing services for their children.
Aim To examine how children’s palliative care services can be improved to meet the needs of children and their families.
Methods A two-part qualitative study underpinned by a social constructivist and phenomenological research approach was employed. Phase 1 conducted an interview-diary study over a two-month period with parents currently caring for a life-limited child (n=12) and Phase 2 carried out semi-structured interviews with bereaved parents of life-limited children (n=5). The data was transcribed verbatim and thematically analysed.
Findings The findings revealed concerns with ‘Communication and Information sharing’, identified ‘Factors Influencing access’ i.e., limited funding, staffing availability, delays in services and poor perceptions of palliative care and emphasised the ‘Continuous caring and Fighting’ involved in being a parent of a child with a life-limiting illness.
Conclusion The parents’ lived experiences, documented in this research, provide insight into the unmet needs, barriers, and facilitators to access and understanding of the role of parent expectations in care. These findings indicate that further research is warranted identifying parents’ awareness of available information and resources, further investigation into the working practices between services within the children’s palliative care pathway and an overall need for suitable respite to be available to families.
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.