A life enriching togetherness – meanings of informal support when being a parent of a child with disability

Abstract

The majority of children affected by disability are cared for at home by their parents. It is well documented in research literature that the parents are in need of professional support. In the striving to improve the professional caring, it is also important to deepen our understanding about the meaning of informal support from the perspective of parents' life world. The aim of this study was to illuminate the meanings of lived experience of informal support, when being a parent of a child affected by disability. Thirteen parents, eight mothers and five fathers within eight families, participated in narrative interviews, which were analysed by using a phenomenological-hermeneutic method. The meanings resulted in three themes: 'being gratified by experiences of the child as having a natural place in relation with others', 'being provided a room for sorrow and joy' and 'being enabled to live an eased and spontaneous daily life'. These themes emanated from the experiences of other persons' being and doing in relation to the parents, the child affected by disability and the siblings. According to our interpretation, informal support means a life enriching togetherness, the core of which is natural human caring. The findings also showed that parents highly valued professional support concerning informal supporters.

Social Support and Anxiety Levels of Parents with Disabled Children

“…Informal supportive sources (family circle, caregiver, etc.) enrich the life (Lindblad, Rasmussen, & Sandman, ), render the parents to feel better (Raina et al., ), and to feel less tired (Giallo, Wood, Jellett, & Porter, ). The most prominent factor that affects the parents' stress is the load of the child's care (Van Riper, ).…”

Psychosocial Experiences of Parents of a Child With Imperforate Anus

“…Moreover, the impact of the children's congenital anomaly on mothers' social relationships may have an extra and possibly positive implication. A recent Swedish study on informal support to parents of a disabled child showed that friendship was tested: Only those persons who respected parents' obligations to their children's care were considered friends (Lindblad, Holritz-Rasmussen, & Sandman, 2007).…”

Getting by with a little help from my friends: siblings report on the amount of informal support received by adults with disabilities

“…Such supporters typically include family members, with parents providing the bulk of the support, followed by adult siblings and, to a lesser extent, family friends, acquaintances and neighbours (Prosser & Moss ; Lindblad et al . ; Duggan & Linehan ; Sanderson et al . ).…”

“…In addition to formal supports, many adults with IDDs rely on informal, or natural, supports to meet their daily needs. Defined as voluntary and unpaid assistance, informal supports are often provided by family members, friends, neighbours and other community members (Lindblad et al 2007;Duggan & Linehan 2013). Such informal help contrasts with help from teachers, case managers, group home workers or other paid professionalspeople whose job is to assist the individual with disabilities (Clement & Bigby 2009;Milner & Kelly 2009).…”

“…In synthesising over 30 studies, Duggan and Linehan (2013) found that people with IDDs have small social networks and, thus, small groups of supporters. Such supporters typically include family members, with parents providing the bulk of the support, followed by adult siblings and, to a lesser extent, family friends, acquaintances and neighbours (Prosser & Moss 1996;Lindblad et al 2007;Duggan & Linehan 2013;Sanderson et al 2017).…”