title: 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.
authors.affiliation: Borås University College of Health Science, Borås, Sweden. Britt-Marie.Lindblad@hb.se
authors.forename: Britt-Marie
authors.initials: BM
authors.lastname: Lindblad
authors.forename: Birgit
authors.initials: B
authors.lastname: Holritz-Rasmussen
authors.forename: Per-Olof
authors.initials: PO
authors.lastname: Sandman
mesh_terms: D002648:Child; D019988:Children with Disabilities; D006801:Humans; D010290:Parents / Q000523:psychology; D012944:Social Support