The transition into adulthood for children with a severe intellectual disability: parents’ views

Abstract

Objectives: This study used the grounded theory to explore parents’ views of the transition into adulthood of their\ud child with a severe intellectual disability. The study also sought to explore the processes that parents engage in\ud for making psychological adjustments, to appreciate their role during this transition. This study is imperative for\ud developing a psychologically informed theory that can be understood by both parents and clinicians.\ud Methods: Twelve parents of 11 children with a severe intellectual disability were recruited for interview from\ud charitable organizations accessed by parents (e.g. Mencap). Data collection used a combination of open-ended\ud structured questions and non-directed probing. NVivo 10 software was used to assist the grounded theory\ud coding and analysis process.\ud Results: The analysis developed five processes that parents engaged in during their child’s transition into\ud adulthood: ‘defining adulthood’, ‘noticing adult development’, ‘perceiving barriers to adulthood’, ‘worrying,’ and\ud ‘making psychological adjustments’. Common to these was seen to be a core process of ‘making comparisons\ud with perceived “norms”’. Contrasting findings are critically discussed alongside extant literature. Additionally, a\ud transition model of parents’ views and adjustments is proposed, grounded in the study findings.\ud Conclusions: Parents engage in a series of interactional processes throughout the transition trajectory, which are\ud likely to influence how they make adjustments. Clinical interventions could challenge parent perceptions; encourage\ud peer support; embrace systemic ways of working with parents through their child’s transition into adulthood; and\ud use the presented model to help parents understand their experiences and any adjustment-related problems

A qualitative study of mothers’ experiences of supporting the sexual development of their sons with autism and an accompanying intellectual disability

“…The findings are consistent with previous research which has highlighted parents' lack of confidence when supporting the sexual development of young people with intellectual disabilities and the paucity of information and professional support (Clegg et al, 2001;Pownall et al, 2011;Biswas et al, 2017). The findings also mirror results of previous research which illustrates that mothers of young adults with intellectual disabilities adopt a reactive approach to managing the sexual behaviour of their offspring, by responding to these behaviours as they occur (Pownall et al, 2011).…”

“…A study by Biswas et al (2017) utilised a grounded theory approach to explore parents' views of the transition into adulthood of their sons and daughters with a severe intellectual disability. The parents in this sample appeared to have open attitudes towards their child's sexuality; however they did express uncertainty about how best to support their child in this area.…”

The experience of mothers supporting self‐determination of adult sons and daughters with intellectual disability

“…The individual responses are not only a result of this unique set of factors, but may also be explained by the mothers' level of knowledge, awareness and understanding of self‐determination (Shogren, ). The idea of autonomy and self‐determination for adults with intellectual disability can be worrying for parents (Biswas et al, ), with the concept of self‐determination not always accepted (Martínez‐Tur et al, ). The mothers in this study had varying levels of previous experience with the disability sector and with the concept of self‐determination (see column Involvement in disability sector in Table ), and this may well have influenced the level of importance they placed on supporting and encouraging self‐determination.…”

“…The influence of family, particularly parents, on the choices and choice‐making opportunities of adults with intellectual disability, has been identified in a number of recent studies (Biswas, Tickle, Golijani‐Moghaddam, & Almack, ; Caouette, Lachapelle, Moreau, & Lussier‐Desrochers, ; McCausland, McCallion, Brennan, & McCarron, ; Reindl, Waltz, & Schippers, ). While adults with intellectual disability may at times need help with choice and decision making, parents often find it difficult to know when to intervene (Saaltink, MacKinnon, Owen, & Tardif‐Williams, ).…”

Transition from school to adult services for young people with severe or profound intellectual disability: A systematic review utilizing framework synthesis

“…For example, while young people physically matured they became larger and stronger and care tasks as well as behaviour that challenges were more difficult to handle for carers. The gap between young people's intellectual development and their emerging sexuality was described as a concern within three studies (Biswas et al, ; Cox, ; Hollinrake, ).…”