Needs of Grandparents of Preschool-Aged Children with ASD in Sweden

Abstract

Little is known about needs of grandparents of young children with autism in family and community settings. This study investigated perceived needs of grandparents of preschool-aged children diagnosed with ASD in the cultural context of Sweden. Participants were 120 grandparents of children enrolled into autism intervention programs provided by the public disability services in Stockholm. The Grandparents' Needs Survey and the SDQ Impact supplement were used to collect data. Grandparents expressed most needs in topic areas of information and childcare. No significant relations were found between grandparents' demographics and perceptions of needs; grandparents' needs were predicted by their perceived burden. The findings provide insight into understanding of grandparents' needs essential for planning and provision of quality family-centered early intervention services.

Parents’ Experiences of the First Year at Home with an Infant Born Extremely Preterm with and without Post-Discharge Intervention: Ambivalence, Loneliness, and Relationship Impact

“…The grandmothers living with the families were described as quite involved in the infant’s development, as well as any infant difficulties. A recent study on the intergenerational perspective of families with a child diagnosed with autism spectrum disorder in Sweden suggested that grandparents expressed a strong interest in receiving more information about the grandchild’s special needs and how to support the family in difficult times [ 79 ]. Since the grandparents were described as a source of help and support by some parents, it would be interesting for further research to investigate how they themselves perceive the situation and whether they themselves require aid.…”

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

“…Moreover, our sample may not have been entirely representative in terms of socioeconomic and other demographic variables such grandparents' health status or ethnicity. For instance, most of the participants were retired and had a university degree; furthermore, as our previous study (Zakirova Engstrand et al, 2020) demonstrated, financial needs were the least prioritized area of needs for this group of grandparents. Although this finding could be explained by the potential effects of the Swedish social welfare system and high level of formal public childcare provision, a small number of participants with immigrant background and those who were still in the workplace does not permit generalizability of our findings to all grandparents in Sweden and/or other Western, high-income countries.…”

“…A qualitative study with custodial grandmothers (i.e., primary caregivers) of grandchildren with disabilities, including autism, demonstrated that grandparents had the greatest need in learning how to deal with the grandchild's aggressive behavior and/or language difficulties; they also had informational needs on their grandchild's diagnosis and community services such as clubs or summer camps (Gallagher et al, 2010). The accumulated research evidence on traditional, non-custodial grandparents of children with ASD have indicated somewhat similar findings: among the most frequent needs expressed by grandparents were information about the child's ASD and learning how to manage grandchild's challenging behavior (Engstrand et al, 2020;Hillman, 2007;Hillman et al, 2017;Prendeville & Kinsella, 2019). A recent quantitative study showed that besides the identified needs highlighted above, the traditional grandparents expressed the need to learn how to adapt play or recreation activities for their grandchild and how to communicate with their grandchild's teachers or other professionals (Zakirova-Engstrand et al, 2020).…”

“…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).…”

Culturally diverse families of young children with ASD in Sweden: Parental explanatory models

“…Other laws regulating the provision of services to children with ASD are the Social Insurance Code (2010:110) [35], the Social Services Act (2001:453) [36], the Health and Medical Services Act (2017:30) [37], the Education Act (2010:800) [38], the Special Transport Services Act (1997:736) [39], and the Act on Housing Adaptation Grants (1992:1574) [40]. These services are provided to children with ASD for free regardless of their ethnic or cultural background, immigration status, or socio-economic status [41].…”