Investigating the psychological well-being and need satisfaction of the informal caregivers of palliative care patients through exploration of lived experiences

A growing body of evidence points to numerous impacts of palliative care giving including psychological difficulties such as stress, anxiety, and depression; financial and occupational difficulties such as activity restrictions and relationship challenges; and the impact of the physically demanding aspects of care giving such as fatigue (Robinson, Pesut and Bottorff, 2012). This study aimed to identify the specific needs of informal caregivers based in a rural area through exploration of their own lived experiences. A qualitative design was employed using semi-structured interviews to explore the experiences of rurally based informal care providers of palliative care patients (N=8). Interpretative Phenomenological Analysis was utilized to analyze verbatim interview transcriptions. Keeping with the traditions of using IPA as a method a double-hermeneutic approach was taken during analysis. Preliminary analysis identified four superordinate themes representing informal carers’ needs. Access to specialist care was identified as a core need which included issues such as information needs and the wish to become “expert carers” through education. Emotional and spiritual needs were identified, highlighting relationship transitions and acceptance of death. Support from families and the community was identified as being integral discussing issues including social inclusion and the importance of being known. The final theme represents the psychological well-being needs and quality of life of informal caregivers. Awareness of the needs of rural informal caregivers will allow healthcare providers to provide a more inclusive palliative care service; which focuses on meeting the end of life needs of both the patient and informal caregiver.