Recreation in Families with Children with Developmental Disabilities: Caregivers’ Use of Online and Offline Support Groups

Abstract

The purpose of this study was to explore what role online and offline support groups play in the lives of families with children who have developmental disabilities. Eight semi-structured individual interviews were conducted with married mothers who had one to five children. The study revealed that caregivers saw online and offline support groups as playing important but different roles in their lives and the lives of their families. Online support groups were particularly appreciated during the initial steps of learning about a child's disability when caregivers felt isolated and eager to learn more. During that stage, online support groups offered them volumes of valuable information and access to people across the world who go through similar experiences. Offline support groups offered participants of this study a sense of strong connection and belonging, and allowed them to spend time with other adults and learn about resources available in their community. The mothers also appreciated the opportunity provided to the children with disabilities and their siblings to make friends and spend time together.

Digital Platform Uses for Help and Support Seeking of Parents With Children Affected by Disabilities: Scoping Review

“…In 1 (5.9%) study (Rocha and colleagues [ 24 ]), the gender of parents was not identified, likely due to the study’s recruitment of participants through 2 online registries (Simons Variation in Individuals Project and GenomeConnect). The target population in the studies was most commonly defined as parents of children across a range of disorders and special needs (n=13, 76.5%), while 1 (5.9%) study’s population focused on families in general [ 26 ], 2 (11.8%) on patients themselves [ 24 , 25 ], and 1 (5.9%) solely on married mothers with up to 5 children [ 19 ]. Most studies were conducted in the United States (n=5, 29.4%) [ 15 - 17 , 19 , 29 ], while participants for 6 studies (35.3%) were derived from multiple countries through online recruitment [ 20 , 23 , 24 , 27 , 30 , 31 ].…”

“…The target population in the studies was most commonly defined as parents of children across a range of disorders and special needs (n=13, 76.5%), while 1 (5.9%) study’s population focused on families in general [ 26 ], 2 (11.8%) on patients themselves [ 24 , 25 ], and 1 (5.9%) solely on married mothers with up to 5 children [ 19 ]. Most studies were conducted in the United States (n=5, 29.4%) [ 15 - 17 , 19 , 29 ], while participants for 6 studies (35.3%) were derived from multiple countries through online recruitment [ 20 , 23 , 24 , 27 , 30 , 31 ]. The remaining studies were from Australia (11.8%) [ 26 , 28 ], Italy (5.9%) [ 25 ], Kuwait (5.9%) [ 22 ], Norway (5.9%) [ 21 ], and the Netherlands (5.9%) [ 18 ].…”

“…The earliest study included in our review was conducted in 2011, while the most recent study was conducted in 2020 [15,17]. Most studies (n=14, 82.4%) were original and observational, applying either qualitative (n=5, 29.4%) [15,[18][19][20][21], quantitative (n=5, 29.4%) [17,[22][23][24][25], or mixed methods approaches (n=4, 23.5%) [26][27][28][29]. The remaining articles consisted of 2 (11.8%) reviews [30,31] and 1 (5.9%) case study [16].…”

“…As listed in Textbox 1, social media were the most prolific digital platforms used by caregivers and parents and were mentioned in 3 (17.7%) of 17 papers [17,21,22]. Furthermore, 1 (5.9%) study [19] focused entirely on online support groups by comparing the differences between online and offline interactions, whereas all other studies (94.1%) examined online support within the context of other digital platforms [21][22][23][24][25][26]. Some studies (n=4, 23.5%) reported on the use of internet search engines [18,25,27,28] or other online information sources (n=2, 11.8%) [17,26].…”

“…Overall, 5 (29.4%) studies [15,16,[19][20][21] adopted various theoretical frameworks guiding the understanding of how social interactions and support work. First, the Ecological Model of Human Development, as used in Fostervold [16], is a theory that helps us understand the interconnectedness of family and the larger society and the resulting socialization of a child.…”