Family caregiver involvement in patient care is a pivotal feature of health care systems worldwide particularly in Indonesia. Active family engagement in the patient’s care in times of illness is expected in the Indonesian culture. Little is known of the level and type of care being provided by family in palliative care, including home based care. An understanding of this topic is essential to better understand current family involvement.
The study aimed to explore the involvement of family caregiver in home-based palliative care for cancer patients in an Indonesian palliative care facility.
An ethnographic approach was utilised in this study. Observations and informal interviews were undertaken in the patient’s home during home visits from one Indonesian palliative care service.
Findings identified that in general the primary family care giver was the patient’s spouse. Family caregivers experienced several burdens including employment status, financial status and limited respite. The study highlighted the involvement of others in care giving such as other family members, home care nurses and paid carers. This involvement raises potential communication issues. Disagreement regarding best care and treatment for the patient among family member was frequently found in this study. Interestingly, the study found that family caregivers had easy access and open communication with palliative health professionals. Family caregivers were involved in different types of care including personal care, meals and management. In addition, spiritual care was conducted by most family caregivers through supporting patients to do religious practices.
This study revealed the involvement of family and other parties in the home based care of palliative patients. The findings show health professionals have a potential role to assist communication among family caregivers. The findings may guide and inform health professionals involved in the palliative care about better coordination among those involved in patient care.