Designing family‐based interventions in kidney failure: The perspectives of the triad 'patients on haemodialysis/family caregivers/healthcare professionals

Abstract

ObjectivesThis study explored the perspectives of people undergoing in‐centre haemodialysis, family caregivers, and healthcare professionals about the development and implementation of family‐based interventions in renal care settings.DesignA qualitative exploratory study was carried out combining purposive and snowball sampling techniques.MethodsSemi‐structured interviews were submitted to thematic analysis.ResultsA total of 82 individuals (27 adults on haemodialysis, 32 family caregivers, and 23 healthcare professionals) participated in this study. Five major themes were identified: (i) educational needs (improve disease and treatment‐related knowledge; acquire better clarification on dialysis‐related health behaviours); (ii) support needs (easier access to available community resources and professional psychological support; additional emotional and instrumental support from family members); (iii) expected barriers (concerns about participating in a group format; availability of the person on haemodialysis/family caregiver dyad; travel to the intervention site and associated costs); (iv) expected benefits (mutual emotional validation and support; improve family coping skills and involvement); and (v) preferences for content and format (interdisciplinary and moderated by health psychologists) and timing of the intervention (weekends and/or non‐dialysis days).ConclusionsFindings suggested that interventions focused on the family system in kidney failure need to follow an interdisciplinary approach, combining psychosocial support with an educational component. Future research is needed to minimize barriers to the conjoint participation of the person on haemodialysis/caregiver dyad. This study identifies important intervention goals to inform the design of family‐based interventions for people receiving haemodialysis and their family caregivers.

The Connected We St@nd programme: A feasibility pilot study of an online self‐management intervention for adults on in‐centre haemodialysis and family caregivers

“…Additionally, the findings of the semi-structured interviews revealed that adults undergoing incentre haemodialysis and family caregivers wish to improve disease and treatment-related knowledge (e.g., information on kidney failure aetiology, benefits and procedures of dialysis and kidney transplantation), acquire better clarification on dialysis-related health behaviours (e.g., dietary and fluid recommendations, vascular access hygiene and complications), have easier access to available community resources (e.g., monetary aids, home support services, social rights) and receive professional psychological support to facilitate coping with the impacts of renal therapies (e.g., fatigue, hypotension, altered family dynamics, uncertainty about the future, treatment-related fears, kidney transplant expectations) (Figueiredo et al, 2021(Figueiredo et al, , 2023a(Figueiredo et al, , 2023bSousa et al, 2023).…”

“…These videos promoted strategies to manage lifestyle modifications and provided information about kidney failure, renal replacement therapies, dialysis-related health behaviours (e.g., physical activity, dietary restrictions, fluid control, vascular access care) and community resources available to assist people with chronic diseases and informal caregivers (e.g., support associations, social rights, monetary aids, home support services). In turn, the psychosocial support component of the programme was intended to help participants deal with the impacts and challenges of treatments, enhance communication skills, train emotional management and problem-solving and foster a sense of personal identity and purpose in life (Sousa et al, 2023). Two health psychologists facilitated the synchronous support sessions normalizing participants' emotions, encouraging them to share experiences and reinforcing self-management efforts and group processes (e.g., cohesion, mutual support).…”

“…In addition, downloadable booklets were made available to supplement the educational and psychosocial support sessions, as well as provide materials for future reference. The content of these materials was largely informed by the findings of previous investigations conducted by the research team involved in designing the 'Connected We St@nd' programme (Figueiredo et al, 2021(Figueiredo et al, , 2023a(Figueiredo et al, , 2023bSousa et al, 2023). Efforts were made to create educational videos and/or booklets useful for both people with kidney failure and family caregivers.…”

Hubungan Lama Merawat dan Tingkat Pendidikan dengan Beban Keluarga Sebagai Caregiver dalam Merawat Pasien Penyakit Ginjal Kronik yang Menjalani Hemodialisis

“…Intervensi pendidikan dan psikologis dapat membantu mengurangi beban pengasuh keluarga (caregiver) ketika merawat pasien hemodialisis (Surani et al, 2021). Terdapat hubungan yang erat antara orang yang mengalami dialisis dan keluarga yang merawatnya, maka keluarga sangat di butuhkan dalam merawat pasien hemodialisis (Sousa et al, 2023). Suport psikologi sangat efektif dalam menurunkan beban keluarga yang merawat pasien GGK yang mengalami dialisis (Chu et al, 2023).…”