Palliative care needs and preferences of older adults with advanced or serious chronic illnesses and their families in rural communities of Indiana, USA

• Published in: The Journal of rural health 2024-03, Vol.40 (2), p.368-375
• Main Authors: Lalani, Nasreen, Hamash, Kawther, Wang, Yitong
• Format: Article
• Language: English
• Subjects: Access; access to care; Adults; caregiver; Caregiver burden; Caregivers; Caregiving; Chronic illnesses; Chronic pain; Community; Discrimination; Families & family life; Health behavior; Health care; Health services; Illnesses; Inequality; Interviews; Mental health services; Needs; Older people; Pain; Palliation; Palliative care; Patients; Psychological distress; qualitative research; quality; Recruitment; rural; Rural areas; Rural communities; Social media; Telemedicine
• ISSN: 0890-765X; 1748-0361
• DOI: 10.1111/jrh.12787

Purpose To explore the palliative care needs and preferences of older adults with advanced or serious chronic illnesses and their families. Also, to propose strategies to promote supportive palliative care in the rural communities of Indiana, USA. Method We conducted qualitative interviews to gather rural caregivers’ experiences of palliative care. Recruitment was done in collaboration with community partners using social media, flyers, emails, invitations, and word‐of‐mouth. A purposive sample of family caregivers was obtained. All the interviews were conducted online. The average interview was 30‐45 minutes. Data were analyzed using a thematic analysis approach. Findings Our findings showed 6 major themes that indicated several palliative care needs and preferences of older patients and their families in rural communities that include: (1) difficulties in pain and symptom burden; (2) perceived discrimination and lack of trust; (3) longer distances to care facilities; (4) difficult conversations; (5) caregiving burden; and (6) use of telehealth in a rural palliative care context. Conclusion Rural family caregivers experience several social inequities and disparities causing a lack of access to and low utilization of palliative care. All these disparities cause several challenges for patients and their families trying to manage serious illnesses and die in place with peace and comfort. Inadequate access and lack of resources cause pain and distress for both patients and their families. Provider education and trainings, initiating early palliative care models, integrating behavioral health in palliative care, and using culturally congruent care delivery approaches in support of community partners can improve palliative care services in rural communities.