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

Abstract

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.

Caring for someone with cancer in rural Australia

“…The findings from the present study confirm the importance of supported accommodation facilities for rural people affected by cancer [44,45] (including carers) and the need for greater recognition of travel-related challenges by metropolitan health services [17,25]. Although rural cancer carers expressed appreciation for patient travel subsidy schemes, they also described difficulties and frustration in navigating complex systems to access these supports (described elsewhere for patients with cancer [25,46,47] and other serious health conditions [48]). Frustrations extended to processes and systems that carers perceived did not reflect understanding of their rural context, and likely compounded travel-related burden.…”

Patients’ Perspectives on Access to Dialysis and Kidney Transplantation in Rural Communities in Australia

“…In many nations, the out of pocket costs borne by patients is increasing despite the presence of universal healthcare 39 . For rural patients this is magnified with substantial additional costs than those faced by urban patients, particularly for transportation, accommodation and relocation if required, and further compounded by excessive leave requirements, to attend appointments and surgeries 19,40,41 . There is a scarcity of information available as to the extent of rural financial hardship in people with CKD, and this requires further research, especially to assess the impact the financial hardship exerts on decision making and access to all forms of treatment 42 .…”

“…The extent of depression and anxiety in the CKD population has been discussed previously, though there is little in the way of research on rural populations and the ongoing impact that this has on their access to treatment, decision-making, and their quality of life. 18 , 42 , 43 They face many stresses, including financial, “grief and loss,” and yet, there is limited opportunity to discuss with health professionals or other rural patients with CKD who can offer support or assistance throughout this time. 44 Participants may benefit from referral to psychologists and social workers with appropriate awareness and training in CKD.…”

“…Patients in rural communities are required to spend time away from home for training or surgical procedures needed for home-based dialysis and kidney transplantation 16,17 , and therefore incur additional costs to those in urban areas, including transport and accommodation. 15,18,19 .…”

“… 2 , 13 , 14 Patients in rural communities are required to spend time away from home for training or surgical procedures needed for home-based dialysis and kidney transplantation 15 , 16 and therefore incur additional costs to those in urban areas, including transport and accommodation. 14 , 17 , 18 Compounding this is the relative socioeconomic disadvantage experienced in rural communities, including lower household income, lower education attainment, and decreased likelihood of receiving primary health care prevention. 19 There are limited policies to redress the inequity of access to care for rural patients with CKD in Australia.…”