Introduction:
Renal Psychology – the clinical specialty that intersects Health Psychology and Nephrology – remains largely overlooked in most countries and little to no evidence is available to instruct best practices in this field. This work shares the steps taken (so far) to inform Renal Psychology interventions in Portugal, the country with the greatest prevalence (1304 pmp) of people on dialysis in Europe.
Methods:
A set of mixed-methods studies has been conducted with people receiving HD, family caregivers, and healthcare professionals from five dialysis units. Psychological assessments (n=307) were undertaken to screen for the presence of psychological distress and its sources among people receiving treatment (n=134) and their families (n=173), using two newly developed (and validated) tools, respectively, the Hemodialysis Distress Thermometer for Patients (HD-DT) and for Caregivers (HD-DT-C). Additionally, semi-structured interviews (n=82; 27 patients, 32 caregivers, and 23 dialysis providers) were performed to better understand their perspectives (assistance needs, preferences, expectations, possible barriers and motivators for intervention adherence) on the development and implementation of psychosocial support activities in renal care settings. Lastly, two disease management interventions were designed and tested, namely a family-oriented in-person program and an Internet-mediated initiative that is available as a patient-, caregiver-, or family-oriented approach (www.togetherwestand.pt).
Results:
Findings revealed that 33.6% of patients and 48.1% of caregivers experience clinically relevant distress, underlining their desire to receive professional psychological support to help manage medical and behavioral recommendations (e.g., difficulty controlling fluid intake, handle dietary restrictions, deal with unpleasant symptoms like fatigue, sexual changes, and cognitive impairment) and facilitate coping with the psychosocial strains of renal therapies (e.g., fear of cannulation, depression, uncertainty about the future, kidney transplant expectations, impacts on couple dynamics). Barriers to the implementation of psychosocial support services in dialysis units were identified, including the costs that participants will have to bear to travel to the intervention site, the poor representation of mental health professionals in nephrology contexts, and the difficulties faced by patients/caregivers in adding new disease/treatment-related activities to the to their (already disrupted) routines. Both in-person and online programs were considered feasible and acceptable by people on HD and their families, but more research is needed before encouraging their integration into routine renal care practices.
Conclusions:
This work expanded knowledge about which objectives and setbacks need to be considered when planning Renal Psychology interventions, highlighting the need to strengthen the presence of Clinical Health Psychologists in the comprehensive nephrology care team.
Funding: This work was supported by FEDER, through COMPETE2020- Programa Operacional Competitividade e Internacionalização (POCI) and by National Funds (OE), through FCT/MCTES, under the grant number POCI-01-0145-FEDER-030228. Helena Sousa has a PhD grant (DFA/BD/4821/2020; https://doi.org/10.54499/2020.04821.BD) financed by Fundação para a Ciência e Tecnologia through FSE (Fundo Social Europeu).
I have no potential conflict of interest to disclose.
I did not use generative AI and AI-assisted technologies in the writing process.