Children's palliative care : parent and professional perspectives of unmet needs, access and expectations

• Main Author: Constantinou, Georgina
• Format: Dissertation
• Language: English
• Published: University of Bedfordshire 2022
• Subjects: hospice and palliative care nursing; hospice care; paediatrics; palliative care; respite care

Understanding the needs of children and their families for children's palliative care remains a top research priority internationally. The presented PhD thesis contributes to this gap in knowledge by exploring the lived experiences of the parents of these children and the professionals providing these services to families. Research stage 1, a scoping review, was conducted to synthesise the evidence based on the needs of children receiving Children's Palliative Care from parents' perspectives of children with life-limiting conditions. The findings confirmed that there were as few as 55 studies worldwide investigating whether palliative care services meet families' needs. Moreover, the evidence is primarily dated, of variable quality and scope, highlighting the need for further research to explore the family's needs in palliative care. Through the adoption of a social constructivist and phenomenological research approach, two further stages were conducted to explore the lived experiences of the parents of these children and the professionals providing these services to families. Research Stage 2 included semi-structured interviews with a wide variety of professionals (n=29) across statutory and voluntary services who provide care to children with LLCs. Research Stage 3 included an interview-diary study (Phase 1) across two months with parents currently caring for a child with a life-limiting condition (n=12) alongside semi-structured interviews (Phase 2) with bereaved parents (n=5). The triangulated findings from qualitative studies revealed three overarching themes; (1) vicious circle of care, (2) no one was telling us anything and (2) out of the loop. The theme 'vicious circle of care' details experiences of parents' continuous caring role and the emotional impact of caring on parents' well-being and mental health. Professionals feared the parent's ability to provide 24-hour care was used as a 'bottomless resource', leading to a crisis in some families without a break from caring. While experiences of families having to 'fight' to meet their child's needs is not uncommon in the literature, the triangulated findings showed that some parents were 'shouting the loudest' to have their needs met, while others were depicted to be 'suffering in silence' which may explain parents coping in situations where they feel services are not meeting their needs. Parents detailed why they chose to behave in these ways, and professionals shared experiences of what it was like to be on the receiving end of these interactions. iii The second theme, 'no one was telling us anything' detailed experiences of informational needs not being met, with reports of parents not accessing services because they were unaware they existed. Parents collectively felt the need to do their research due to a lack of information provided by services. Many felt they could gain more information from other parents, condition-specific charities, and forums than services. While these services provide excellent support networks, this research was shown to influence parent expectations in care; the more networking and parent research performed, the higher the individual's expectations of the care they would like from the professional. This was reported in line with challenges of mismatched expectations, with some information being inaccurate or unachievable in the local provision. The third theme, 'out of the loop', encompasses experiences of poor communication and information sharing, including issues such as MDT approaches not being used frequently enough and difficulties in information sharing between the team around the child due to a lack of shared care records. In addition, parents described care as disjointed, and poor communication between services was discussed to impact the family's retelling of their story, which was deemed upsetting. This finding highlighted the experiences of some professionals working in isolation influencing families' access to certain services. These experiences reported negative attitudes toward hospices and palliative care, a lack of clarity with roles and responsibilities and stressed an overprotectiveness of some professionals, which hindered the working practices of the team around the child. This study contributes new knowledge of parent and professional lived experiences of unmet needs, facilitators, barriers to access and the influence of parent expectations in care. These findings can inform practice through professional understanding of parent coping behaviours by supporting them to identify which families may not be coping well and could need further support and providing awareness that those parents 'shouting the loudest' may not be coping as well as professionals may assume. In addition, funding short breaks for families must be addressed to allow families to access appropriate breaks from caring. Parents' awareness of the recommended informational resources should be assessed, including ascertaining what information services are provided to determine how well it meets families' information needs and how readily available it is. In addition, understanding is needed surrounding the working practices of MDT teams in children's palliative care, including the further exploration of the barriers to effective working between services.