Perspectives of parents and tutors on a self‐management program for parents/guardians of children with long‐term and life‐limiting conditions: “a life raft we can sail along with”

Abstract

The lay‐led, community‐based Supporting Parents Programme (SPP) aims to assist parents caring for children with long‐term or life‐limiting conditions through support and cognitive behavioral techniques. The value of the SPP from the perspectives of parent participants and tutors was examined in focus groups and telephone interviews. Data were analyzed using framework analysis. Parents perceived a commonality of emotions and practical issues, valued meeting similar others, felt less isolated, more positive, motivated, and more calm; some had found the “real me again.” Changes were attributed to techniques learned. Parents were anxious of being cast adrift at the end of SPP. Tutors needed more support and additional training around child protection and confidentiality. © 2008 Wiley Periodicals, Inc.

Improving health, wellbeing and parenting skills in parents of children with special health care needs and medical complexity – a scoping review

“…Twenty-seven interventions aimed to change aspects of parenting behavior including: Acceptance and Commitment Therapy (ACT) [43, 44], Cognitive Behavioral Therapy (CBT) [37, 45], Problem Solving Skills Therapy (PSST) [46, 47], coping skills training [48], multi-family therapy [24], individual family therapy [49], adapted Chronic Disease Self-Management based programs [25, 26], group meetings [27–29, 38, 50–54], residential programs [22, 55–57], an interactive online application [58], participatory training [59], and filial therapy, based on play therapy [30, 60].…”

“…There were issues related to group or peer dynamics. In one group tensions arose between parents of children with mainly physical disabilities and parents of children who had behavioral or emotional disorders [26], and in another study parents commented on a lack of similarity between their specific situation and that of the other parents [63]. Some participants struggled with incompatible peer relationships [15].…”

“…Some participants struggled with incompatible peer relationships [15]. Sometimes interventions were not well matched to the parent’s prior experience: some parents felt an intervention to be ‘too late’ [50], while others felt that they had already dealt with the issues that were discussed [63], that group discussions were repetitive [50, 62], or that attendance had not resulted in new learning [26]. Exposure to an intervention too early may however raise issues that parents are not ready to face [49, 53].…”

“…Interventions sometimes did not fulfil expectations. Disappointments about the size and composition of support groups [45], poor attendance by other parents [26], and a lack of meaningful peer connection [15] were reported. There was also disappointment about the amount of information available [63], and perceived misinformation [62].…”

Life Satisfaction in Families with A Child in an Unresponsive Wakefulness Syndrome

“…This concept was primarily developed as an educational approach for patients (Lorig and Holman, 2003;Kemp, 2011), intended as an opposition to the traditional active expert/passive patients approach and entailing ve principal mechanisms: self-directed care, illness management and recovery, shared decision-making, joint crisis planning and wellness planning (Kemp, 2011). Later on, the principles of self-management were applied to patients' caregivers, parents and family members of chronically ill children (e.g., Barlow et al, 2008;Ryan and Sawin, 2009).…”