The psychosocial experiences and supportive care preferences of organ transplant recipients and their carers who live in regional Australia

Background: There is no evidence that being a rural or regional organ transplant recipient has adverse physical health outcomes post-surgery compared with those experienced by people living in cities, but the impact of living remotely from transplant centres on psychosocial outcomes has not been explored. Objective: To identify the social, emotional, psychological, spiritual, informational and practical issues associated with being a regionally based organ transplant recipient or carer and determine how support services could be improved for this group. Design/ Setting/ Participants: Twenty-two purposively sampled adult Australians who lived outside metropolitan centres and had received an organ transplant (n = 15) or were the primary carer of someone who had received one (n = 7), participated in semi-structured, telephone interviews. Qualitative data were collected until data saturation was reached and were analysed using thematic analysis. Results: Five key themes (plus subthemes) were identified: (a) travelling for specialist transplant care takes a toll, (b) unique transplant-related psychological and emotional issues experienced before and after transplants, (c) caring for transplant recipients is a demanding role, (d) lay, peer and professional support, including rural general practitioners and accommodation facilities, help ease the burden, but (e) significant barriers to accessing transplant-focused psychosocial support exist. Conclusion: Novel methods of delivering targeted, transplant-specific information and psychosocial care to rural transplant recipients and their carers, employers and rural health professionals require development and evaluation. Strategies might be delivered by peers or professionals via telehealth, telephone, social media or websites for example, depending on preferences and level of need.