Family caregivers’ experiences in the palliative care context: A longitudinal, qualitative study

Caregivers who provide care patients for a family member with terminal illness towards the end of their lives play a key role in the UK health and social care system. This research project aimed to explore the longitudinal experiences of nine family caregivers who were providing care for a family member diagnosed with a terminal illness. A longitudinal qualitative cross-sectional research design drawing on the principles of phenomenology was adopted to explore how and in what ways the family caregivers’ experiences are similar or different to the patients during the time they provide care for the patient. This also considered how the caregivers’ interactions with palliative care services impacted of their experience. Nine family caregivers were recruited from three separate areas of a twelve bedded hospice in Yorkshire. Six participants were interviewed three times and three participants were interviewed twice over a period of one year. Interviews were conducted at different points in each family caregivers’ journey which were identified by them as points which had marked a shift in their perceptions and gave shape to their experience of the phenomena. In total, 24 interviews were conducted which produced a large amount of data. All first second and third interviews were iteratively analysed as a series of stand-alone studies using thematic analysis. Themes within the accounts of individual family caregivers revealed patterns of change and stability shedding light on their unfolding longitudinal experiences. The study offers a number or contributions which add to the body of knowledge relating to family caregivers’ experiences. These pertained to how the practical and emotional support offered to family caregivers across time plays a key role in helping them to adapt to the fluctuating needs of the patient throughout their illness. The crucial role played by palliative care services was seen to be important in their being able to cope with the demands of providing care by helping them to adapt their caring styles according to the fluctuating needs of the patient throughout their illness. An essential element of this support was identified as having consistent and reliable access to support from professionals in palliative care services over the course of the caregiving journey. Inequality in terms of access to financial resources by individual caregivers presented a barrier to the family caregivers which increased the amount of caregiver burden they experienced. Those who are affected by a lack of access to appropriate funding are at greater risk of deterioration in their physical and psychological wellbeing. Support for family caregivers could be strengthened by being delivered according to the needs of the family caregiver over the time they provide care. Tools which assess the family caregivers’ needs should take into account the unique demands of the psychosocial context in which caregiving occurs