Exploring long-term outcomes of a peer support programme for parents* of children with disability in Australia.

Peer support groups can offer parents of children with disability, positive well-being outcomes. Peer support groups not only provide opportunities for connections with others with similar experiences but also provide resources and information, emotional support, a sense of belonging and may help reduce stress and isolation. Peer support groups are an established form of support existing within family centred practice. However, it is unclear whether peer support groups achieve the outcomes that they aim to deliver. Further, little is known about the longer-term outcomes for parents attending such groups. This study aimed to explore the medium- and long-term outcomes and experiences of parents who participated in a peer support programme (the Now and Next programme) for parents of children with disability. Well-being data were collected at three timepoints (Ts): prior to commencing the programme (T1), immediately after completion of the programme (T2) and 6-30 months after completion of the programme (T3). Results of the study showed empowerment and well-being improved from T1 to T2, with gains maintained at T3. Hope scores did not significantly change over time. Participants continued to set and achieve goals over time using resources from the programme. Improvements in parents' well-being and empowerment scores were maintained in the longer-term. Our study contributes to evidence confirming sustained long-term outcomes of peer support programmes and demonstrates that building parent capacity, empowerment and well-being has a lasting effect on the parents of children with disability.

Effectiveness of peer support programmes for improving well-being and quality of life in parents/carers of children with disability or chronic illness: A systematic review.

AIM: This systematic review synthesized quantitative evidence from the past decade of the effectiveness of peer support programmes in improving the well-being and/or quality of life (QoL) for parents/carers of children with disability/chronic illnesses. BACKGROUND: For children with disability or chronic illness, parents/carers are critical in enabling or limiting their child's development. The parent's/carer's ability to provide the necessary responsive and structured care is impacted by several factors, including their own personality, skills, resources and well-being. Peer support programmes often aim to build parent/carer and/or family capabilities. Although studies and reviews have found positive benefits arising from such programmes, the impact of such programmes, specifically on well-being and QoL, is unknown RESULTS: Quantitative studies published between 2011 and 2020 that examined the impact of programmes with a significant peer support component on parental/carer well-being, QoL and/or distress were identified from four databases and were searched and yielded 3605 articles, with 13 articles meeting the inclusion criteria. The results suggested that peer support is effective for reducing distress and improving the well-being and QoL among parents of children with disabilities; however, the evidence is limited by a high risk of bias in the included studies. CONCLUSIONS: Although existing evidence suggests that programmes for parents/carers with a significant peer support component are beneficial for well-being and QoL, rigorous methodologies are needed in the future to gain a better understanding of the benefits of such programmes.

Identifying and Shifting Disempowering Paradigms for Families of Children With Disability Through a System Informed Positive Psychology Approach.

Despite the emergence of socio-ecological, strength-based, and capacity-building approaches, care for children with disability remains primarily grounded in a deficit-based perspective. Diagnoses and interventions primarily focus on what children and families cannot do, rather than what might be possible, often undermining the competence, mental health, and functioning of both the children and their families. We first critically examine typical approaches to disability care for families of young children, describe the importance of a systems-informed positive psychology (SIPP) approach to care, and identify the existence of two dominant paradigms, disability is a disadvantage and experts know best. Then, we present a case study investigating families' experiences with these two paradigms and whether shifts to alternative perspectives could occur through participation in a SIPP-based program co-designed by professionals and families. Of program participants, nine parents and five early intervention professionals participated in two separate focus groups, and ten e-books were randomly selected for review. Thematic analysis of the e-books and focus group data identified two primary themes representing alternative perspectives that arose through the intervention: we will start with our strengths and we've got this. Participant comments indicated that they developed a greater sense of hope, empowerment, engagement, and wellbeing, enabled by embedding wellbeing concepts and practices in their routines and communications with their children. We suggest that benefits arose in part from the structure of the program and the development of wellbeing literacy in participants. While care needs to be taken in generalizing the results, the case study provides clear examples of shifts in perspectives that occurred and suggests that the incorporation of SIPP principles within early intervention approaches provides a potential pathway for shifting the problematic paradigms that dominate disability care.