Evaluating family support needs of people using Strathcarron Hospice services

Abstract

Executive summary: - Over two-thirds of cancer patients are cared for by two or more close relatives (1998), however, there are substantial gaps in the provision of supportive care. - An interview study with 16 family members of people supported by Strathcarron Hospice was conducted to identify the support needs of families when someone is receiving palliative care from Strathcarron Hospice. - Participants described the demanding role of being the main family carer and how this can at times be overwhelming and stressful. - Many interviewees were not provided the information they needed to help them to cope with the responsibility and new experiences which come about in their role as a carer prior to accessing Strathcarron Hospice services. - Relationships with healthcare professionals within the general healthcare system were often difficult and family members often felt taken for granted. Those interviewees who were also trained as nurses or worked in healthcare felt considerable role conflict from this duality. - Healthcare professionals were not thought to provide adequate support, on the whole, for family members. Strathcarron Hospice's services, however, were considered to stand out somewhat from this pattern and participants reported feeling supported by the Hospice.  - Out of hours support was considered inadequate, with difficulties in accessing specialist support from NHS24, and limited knowledge of the role that the Hospice could have out of office hours. - Family members readily identified the ways in which a palliative diagnosis impacted on them, not just the patient. Thus, there is a need to understand the entire context in which people experience and make sense of their illness, and particularly their interconnectedness and interrelationships with others. - For many interviewees, there was a sense of a growing difficulty in relationships as a consequence of the multitude of changes which had occurred as a consequence of the illness. - Unpaid carers were drawn into supporting a range of other family members. However, families often experienced considerable difficulties in communicating with each other, and received no support to facilitate this. - Despite participants all having a relative who had been diagnosed with a life limiting condition, very little mention was made by interviewees of death or dying. Key recommendations include the following points of action for Strathcarron: 1. Continue to adopt a systematic approach to assessing the needs of family members in relation to both practical and psychosocial support. 2. Facilitate access to external agencies which can provide specialist family therapy support to ensure that families are supported in processing the wider implications of the disease, and prevent complicated grief reactions in the future. 3. Offer education to healthcare professionals which draw on this study's findings regarding the impact of a life-limiting diagnosis on the wider family system. 4. Support primary care services to stay involved with families who are accessing specialist palliative care, and ensure that family members are informed of the likely disease progression and how to access out-of-hours support. 5. Conduct further research regarding the ways families talk about death and dying.