The glue that keeps everybody together: Peer support in mothers of young children with special health care needs

Dodds, Robin L.; Walch, Tanis J.

doi:10.1111/cch.12986

Cited by 9 publications

(4 citation statements)

References 31 publications

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“…In light of the effects of COVID-19, there is a national emphasis on the need for social and emotional support to address increased caregiver distress [ 31 – 33 ]. Caregivers can often provide the highest quality healthcare, yet the reality of current support among CMC and their families is alarming [ 18 , 19 , 34 , 35 ].…”

Section: Discussionmentioning

confidence: 99%

Bridging the gaps in pediatric complex healthcare: the case for home nursing care among children with medical complexity

Koob,

Griffin,

Stuenkel

et al. 2024

BMC Health Serv Res

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Background Children with medical complexity (CMC) comprise < 1% of the pediatric population, but account for nearly one-third of healthcare expenditures. Further, while CMC account for up to 80% of pediatric inpatient hospital costs, only 2% of Medicaid spending is attributed to home healthcare. As a result, the current health system heavily relies on family caregivers to fill existing care gaps. This study aimed to: (1) examine factors associated with hospital admissions among CMC and (2) contextualize the potential for home nursing care to improve outcomes among CMC and their families in South Carolina (SC). Methods This mixed-methods study was conducted among CMC, their family caregivers, and physicians in SC. Electronic health records data from a primary care clinic within a large health system (7/1/2022-6/30/2023) was analyzed. Logistic regression examined factors associated with hospitalizations among CMC. In-depth interviews (N = 15) were conducted among physicians and caregivers of CMC statewide. Patient-level quantitative data is triangulated with conceptual findings from interviews. Results Overall, 39.87% of CMC experienced ≥ 1 hospitalization in the past 12 months. CMC with higher hospitalization risk were dependent on respiratory or neurological/neuromuscular medical devices, not non-Hispanic White, and demonstrated higher healthcare utilization. Interview findings contextualized efforts to reduce hospitalizations, and suggested adaptations related to capacity and willingness to provide complex care for CMC and their families. Conclusions Findings may inform multi-level solutions for accessible, high-quality home nursing care among CMC and their families. Providers may learn from caregivers’ insight to emphasize family-centered care practices, acknowledging time and financial constraints while optimizing the quality of medical care provided in the home.

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Section: Discussionmentioning

confidence: 99%

Bridging the gaps in pediatric complex healthcare: the case for home nursing care among children with medical complexity

Koob,

Griffin,

Stuenkel

et al. 2024

BMC Health Serv Res

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“…Previous studies also demonstrated that parent‐to‐parent support provides fertile ground for parents and peers to develop new, positive visions for the future and opportunities for individuals to thrive (Bray et al, 2017). Like Dodds and Walch (2022), we view peer support through a family resilience lens. Therefore, we have organized our findings to demonstrate how the relationships and underlying processes of peer support can be understood within a family resilience framework.…”

Section: Discussionmentioning

confidence: 99%

“…There are a number of studies that have identified possible pathways in which resilience can be understood in these families (Gunty, 2020; Leone et al, 2016). Others have previously demonstrated how family resilience frameworks are relevant to the qualitative experience of parents involved in peer support contexts (Dodds & Walch, 2022). Our present study represents a contribution to this literature insofar as we propose a theoretical model demonstrating how peer support and family resilience intersect.…”

Section: Introductionmentioning

confidence: 99%

Parent‐to‐parent support for childhood neurodisability: A qualitative analysis and proposed model of peer support and family resilience

McCrossin

Lach

2022

Child

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Background Qualitative studies have shown that peer support is of value to parents and other caregivers of children with neurodisability. However, this value likely cascades to other areas such as family well‐being. There are various forms and functions of peer support, and how they operate is not well understood for this population. Models of family resilience theory can be helpful to situate the impact of parent‐to‐parent peer support processes within a family context to further explain how this type of assistance is beneficial. Our study aimed to describe the specific pathways by which peer support may contribute to resilience in families and how processes embedded in this type of support can enrich family resilience theory. Methods Using reflexive thematic analysis, we examined transcripts and notes from 19 interviews with parents of children with neurodisabilities regarding their involvement in a large (n = 300) and predominantly volunteer‐based peer support network in western Canada. Using an inductive coding method, we identified patterns in the data. Following a process of reflection and discussion, we then used a deductive approach to situate themes within a family resilience theoretical framework. Results We identified three main themes from the data: Modifying belief systems through shared lived experience; navigating resources; and negotiating resources and engaging in social discourses. These themes confirm previous findings in the literature, and the subthemes demonstrate how they may contribute to broader family‐level experiences beyond that of the parent. Conclusion We present a model for understanding how processes in peer support can be understood within a family resilience theoretical framework. We also propose that the reciprocity embedded within peer support builds upon previous concepts within family resilience theory. Future studies can use this theoretical framework to guide research questions to further explore the effects of peer support at the family and community levels.

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“…IP2PS is defined as individualized support provided in a one‐on‐one setting, as opposed to peer‐based support offered in group settings. It is delivered by a parent with similar experiences caring for a child with BBDD (Dodds & Walch, 2022). During these sessions, parents of a child with BBDD have conversations and share experiences in order to support each other (Wong & Shorey, 2022).…”

Section: Introductionmentioning

confidence: 99%

Exploring individual parent‐to‐parent support interventions for parents caring for children with brain‐based developmental disabilities: A scoping review

Postma,

Ketelaar,

van Nispen tot Sevenaer

et al. 2024

Child

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BackgroundBrain‐based developmental disabilities (BBDDs) comprise a large and heterogeneous group of disorders including autism, intellectual disability, cerebral palsy or genetic and neurodevelopmental disorders. Parents caring for a child with BBDD face multiple challenges that cause increased stress and high risk of mental health problems. Peer‐based support by fellow parents for a various range of patient groups has shown potential to provide emotional, psychological and practical support. Here, we aim to explore existing literature on individual peer‐to‐peer support (iP2PS) interventions for parents caring for children with BBDD with a view to (1) explore the impact of iP2PS interventions on parents and (2) identify challenges and facilitators of iP2PS.MethodAn extensive literature search (January 2023) was performed, and a thematic analysis was conducted to synthesize findings.ResultsFourteen relevant articles revealed three major themes regarding the impact of iP2PS on parents: (1) emotional and psychological well‐being, (2) quality of life and (3) practical issues. Four themes were identified describing challenges and facilitators of iP2PS: (1) benefits and burden of giving support, (2) matching parent‐pairs, (3) logistic challenges and solutions and (4) training and supervision of parents providing peer support.ConclusionsThis review revealed that iP2PS has a positive impact on the emotional and psychological well‐being of parents, as well as the overall quality of life for families caring for a child with a BBDD. Individual P2PS offers peer‐parents an opportunity to support others who are facing challenges similar to those they have experienced themselves. However, many questions still need to be addressed regarding benefits of different iP2PS styles, methods of tailoring support to individual needs and necessity of training and supervision for peer support providers. Future research should focus on defining these components and evaluating benefits to establish effective iP2PS that can be provided as standard care practice for parents.

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The glue that keeps everybody together: Peer support in mothers of young children with special health care needs

Cited by 9 publications

References 31 publications

Bridging the gaps in pediatric complex healthcare: the case for home nursing care among children with medical complexity

Bridging the gaps in pediatric complex healthcare: the case for home nursing care among children with medical complexity

Parent‐to‐parent support for childhood neurodisability: A qualitative analysis and proposed model of peer support and family resilience

Exploring individual parent‐to‐parent support interventions for parents caring for children with brain‐based developmental disabilities: A scoping review

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