The support needs of parents having a child with a chronic kidney disease: a focus group study

Abstract

Needs regarding balancing their personal life are seldom prioritized by parents as the child's needs are considered more important. Therefore, it is important that healthcare professionals should not only attend to the abilities of parents concerning their child's disease management, but also focus on the parents' abilities in balancing their responsibilities as a caregiver with their own personal life.

The significance of relationships and dynamics in families with a child with end‐stage kidney disease: A qualitative study

“…Tong et al () found that parents felt that the illness constrained the parents’ social life; however, this improved after kidney transplantation. Similar to our study, it was found that friends and extended family provided significant practical support; however, lack of understanding of the family situation was commonly reported (Geense et al, ; Tong et al, ).…”

“…Parents constitute a core element of, and are responsible for, the family's well‐being, dynamics and social and emotional functioning. Parents need emotional support from peers, friends and healthcare professionals (HCP) to help them cope with their child's disease (Geense, Gall, Knoll, Cornelissen, & Achterberg, ; Tong, Lowe, Sainsbury, & Craig, ). They find it difficult to combine supporting their partner, talking about their feelings regarding the child's disease and coping with siblings’ feelings of being neglected (Geense et al, ).…”

Effect and Process Evaluation of e-Powered Parents, a Web-Based Support Program for Parents of Children With a Chronic Kidney Disease: Feasibility Randomized Controlled Trial (Preprint)

“…For the development of this intervention, an extensive needs assessment was conducted, consisting of a literature study and five focus group interviews with parents [34]. This needs assessment revealed that online peer support was (the most) frequently mentioned need of parents, and it is often used by parental caregivers for emotional needs [5,6,31].…”

“…In collaboration with parents and healthcare professionals, intervention mapping was used: a protocol for the systematic development of theory-and evidence based health promotion interventions [10]. After conducting a needs assessment with parents (consisting of five focus group interviews) [11], defining program objectives, searching for theories and selecting practical applications, e-Powered Parents [Mijn Kinderniernet in Dutch] was developed [12]. E-Powered Parents consisted of three different components: 1) an informative part comprising information and videos about different kidney diseases, treatment possibilities, diets and (financial) regulations; 2) an interactive part consisting of a forum, chat room and an option to send private messages to share their experiences with other parents and healthcare professionals, and 3) an online training platform consisting of four different training modules (stress management, setting limits, communication and coping) (see Figure 1).…”

Amnioinfusions to Treat Early Onset Anhydramnios Caused by Renal Anomalies: Background and Rationale for the Renal Anhydramnios Fetal Therapy Trial

“…Parents of children with kidney disease in particular report difficulties balancing responsibilities as caregivers with personal self-care [56]. There is a need for intervention efforts aimed at preventing or reducing parenting stress among caregivers of children with chronic illness, but few specific interventions have been developed to accomplish this.…”