This study explored the opinion and understanding of parents whose children received respite care from a children’s hospice as to how it is allocated to their child and their satisfaction with what they receive.
Caring for a child with a life-limiting illness has a profound impact on every dimension of family life. Providing appropriate respite care is of vital importance in helping parents cope with the constant demands of caring for these children.
The research adopted a mixed methods approach. The study invited all parents to contribute to the research by completing a questionnaire and participating in semi-structured interviews. The combination of the two data collection methods gave rise to six broad themes. Analysis of the data received contributed to the knowledge required to make change and improvements to practice.
The results showed parents liked the perceived informality of the current method used to allocate respite care, preferring it to a more formal assessment. Parents valued the relationship that developed with the hospice, felt fairly treated and expressed degrees of satisfaction with the respite care their child received. However, there was a lack of knowledge about the allocation of respite care. The interviews highlighted the complexity of the relationship parents have with the hospice which could prevent them from articulating concerns.
Knowledge gained from the research and critical reflection on practice has meant changes have been made to the allocation of respite care. The children’s hospice must constantly question the effectiveness of the model used to allocate respite care. It should be equitable, consistent, transparent and objective, whilst recognising the uniqueness of each family. A clarity of information provided will allow an understanding of the care the hospice can provide alongside the organisational constraints that are integral to the allocation process.
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