Exploring the patients’ and family members’ perspectives on home-based palliative care

Abstract

Background: Healthcare at home is considered a partial substitute for institutional long-term care, because patients and families with known poor prognoses prefer to stay home with their loved ones and are unable to pay for hospital care at the end of life in some countries. Purpose: To explore patients’ and family members’ perspectives and experiences of receiving home-based palliative care services. Method: This was a qualitative exploratory study conducted in Karachi, targeting patients and family members receiving home-based palliative care services. The data collection was done via interviews, and simultaneously, the interviewer recorded field notes, which were all carried out within the confines of the participants’ homes. Moreover, the subjects were recruited through purposive sampling, resulting in a total of six patients and six family members. The final number of participants was determined based on data saturation. The inclusion criteria encompassed individuals of all genders, aged 18 and above, and residents of Karachi, Pakistan. Those who were not able to provide information, due to any reason, were excluded from the study. The study adhered strictly to ethical considerations. Findings: The study uncovered several significant themes that provide valuable insights, including caregivers’ availability, patients’ inclusiveness, improved dietary pattern, psychological wellbeing, and rapid recovery in home-based care. Furthermore, the study identified themes on providing home-based palliative care, like family members’ education and keeping back-ups for unforeseen situations. In contrast, the themes identified as home-based care preference over hospital care were: experienced compromised care, hospital anxiety, restricted to the available resources and higher hospital living expenses for patients and family members. Conclusion: The study underscored the importance of adopting a patient-centric approach. It has become evident that the comfort and familiarity of one’s home environment provide a conducive backdrop for holistic healing and wellbeing.