A scoping review of the literature on grandparents of children with disabilities

Novak‐Pavlic, Monika; Malek, Sandra Abdel; Rosenbaum, Peter; Macedo, Luciana; Rezze, Briano Di

doi:10.1080/09638288.2020.1857850

Cited by 11 publications

(8 citation statements)

References 53 publications

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“…Siblings can be highly involved in therapy and may assume care responsibilities as adults, however research focuses more on parents therapy involvement ( 28 ). Research about grandparents of children with disabilities has increased over the past decade, revealing heterogeneity in grandparents' acceptance of the disability, frequent worries for family, high levels of support, and family cohesiveness ( 29 ). A paucity of research may reinforce exclusion, under representation and stigma for diverse families, for example families who have undergone divorce or remarriage ( 16 ) or polygamous families ( 17 ).…”

Section: How Does the Conceptualization Of Family Affect Children's R...mentioning

confidence: 99%

Reconceptualizing the Family to Improve Inclusion in Childhood Disability Research and Practice

Phoenix

Reitzel

Martens

et al. 2021

Front. Rehabilit. Sci.

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The World Health Organization's International Classification of Functioning, Disability and Health recognizes that environmental factors impact well-being and life participation for children with disabilities. A primary environment in which children grow and learn is the family. The importance of family has long been recognized in family-centered practice and family-centered research. Although family-centered services and research have been critically explored, the concept of family has received less critical attention in rehabilitation literature. The family construct is due for an updated conceptualization with careful consideration of the implications for childhood disability rehabilitation practice and research. Interrogating the family construct asks questions such as: who is included as a part of the family? Which family structures are prioritized and valued? What is the potential harm when some families are ignored or underrepresented in childhood disability practice and research? What implications could a modern rethinking of the concept of family have on the future of childhood rehabilitation practice and research? This perspective article raises these critical questions from the authors' perspectives as parents of children with disabilities, child focused rehabilitation professionals, and researchers that focus on service delivery in children's rehabilitation and family engagement in research. A critical reflection is presented, focused on how the construct of family affects children's rehabilitation practice and research, integrating concepts of equity, inclusion and human rights. Practical suggestions for children's rehabilitation service providers and researchers are provided to aid in inclusive practices, critical reflection, and advocacy.

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Section: How Does the Conceptualization Of Family Affect Children's R...mentioning

confidence: 99%

Reconceptualizing the Family to Improve Inclusion in Childhood Disability Research and Practice

Phoenix

Reitzel

Martens

et al. 2021

Front. Rehabilit. Sci.

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“…This approach has, on many occasions, helped me in my work with families-an example of how we can help them help us help them! Another less appreciated aspect of being interested in families is to understand what the grandparents know and think (7,8). We most often meet "parents"-the people who bring their children to us with their concerns.…”

Section: Yes But What About…?mentioning

confidence: 99%

“…Another less appreciated aspect of being interested in families is to understand what the grandparents know and think ( 7 , 8 ). We most often meet “parents”—the people who bring their children to us with their concerns.…”

Section: What Do We Mean By the Processes Of Worki...mentioning

confidence: 99%

Developmental Disability: Families and Functioning in Child and Adolescence

Rosenbaum

2021

Front. Rehabilit. Sci.

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The WHO's International Classification of Functioning, Disability and Health (ICF) provides an integrated framework for health for everyone. Several aspects of this approach to health allow us to see people's lives in a richer and more holistic manner than has traditionally been the case based on diagnosis alone. These features include the positive language (emphasizing in particular “activity,” “participation,” and “personal factors”); the interconnections of the parts of this “dynamic system,” in which every component can influence every other one; and the formal inclusion of “contextual factors”—personal and environmental—that are otherwise too easy to take for granted and then ignore. This paper addresses the “environmental” dimension of the ICF framework—specifically referring to “family” as the central environmental force in the lives of children and adolescents. The perspectives of the author are those of a developmental pediatrician, whose career has focused on children with conditions that challenge their development, and their families. Lessons learned from a lifetime of work—including teaching and research as well as clinical services—are offered. Particular emphases will be on (i) the importance of focusing on the family in a non-judgmental “family-centered” way; (ii) how conceptual ideas about child (and family) development and parenting are as important as technical approaches to intervention; and (iii) how the ICF framework “allows”—indeed encourages—such a focus to have value and importance equal to the best of biomedical interventions. Examples from current research will illustrate how these ideas can be implemented.

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“…To enable them to manage their feelings and to navigate family events around their young grandchild, grandparents would benefit from clinical interventions or other support services to learn about ASD, to acquire skills and strategies on how to address grandchildren's challenges and to improve supportive relationship with their adult children. However, there is a dearth of interventions focused on grandparents in comparison with the child's nuclear family members-parents (Dolbin-MacNab et al, 2019;Kirby, 2015); moreover, it appears that there are virtually no studies reported on the effectiveness of interventions designed specifically for traditional (non-custodial) grandparents of children with developmental disabilities, including children with ASD (Novak-Pavlic et al, 2020;Zakirova-Engstrand et al, 2020). Furthermore, research evidence on services needs for caregivers of children with ASD to improve their quality of life is still scarce, and evaluation of effectiveness of already existing treatments and interventions for this group has been acknowledged as a research priority in the field of autism (Cervantes et al, 2020;Interagency Autism Coordinating Committee [IACC], 2017).…”

Section: Introductionmentioning

confidence: 99%

“…Existing research has demonstrated that traditional grandparents’ role in the family can be invaluable for children with ASD and their parents. A recent review of peer-reviewed publications on the traditional, non-custodial grandparents of children with developmental disabilities, including ASD, by Novak-Pavlic et al ( 2020 ) demonstrated that these grandparents play an active role in families by providing emotional, financial and instrumental support to their adult children and grandchild with a disability. For instance, Prendeville and Kinsella ( 2019 ) in their study with nine families of school-aged children with ASD in Ireland found that grandparents played an important role in strengthening the family system by providing respite care for their grandchildren.…”

Section: Introductionmentioning

confidence: 99%

Group Psychoeducational Intervention for Grandparents of Young Children with ASD: An Open Feasibility Study

Zakirova-Engstrand

Roll-Pettersson

Andersson

et al. 2021

J Autism Dev Disord

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This initial open feasibility trial reports on feasibility and preliminary effectiveness of the manualized, group-based psychoeducational intervention for grandparents of preschool-aged children with ASD provided by the outpatient habilitation services in Stockholm, Sweden. One hundred and twenty non-custodial grandparents participated in a 6-h intervention program. The study demonstrated good feasibility: 114 (95%) grandparents competed both pre- and post-intervention measures and evaluations and reported high intervention acceptability. The results also indicated that grandparents increased their knowledge about ASD from pre-intervention to post-intervention, gained skills about strategies of supporting their grandchildren and adult children, and appreciated the opportunity to meet and share experiences with other grandparents. Follow-up with a randomized controlled trial design is needed to firmly establish efficacy of this intervention.

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A scoping review of the literature on grandparents of children with disabilities

Cited by 11 publications

References 53 publications

Reconceptualizing the Family to Improve Inclusion in Childhood Disability Research and Practice

Reconceptualizing the Family to Improve Inclusion in Childhood Disability Research and Practice

Developmental Disability: Families and Functioning in Child and Adolescence

Group Psychoeducational Intervention for Grandparents of Young Children with ASD: An Open Feasibility Study

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