Parents perception and experience of transitioning to adulthood for their child diagnosed with an intellectual disability

Nucifora, Alice; Walker, Sue; Eivers, Areana

doi:10.1080/20473869.2022.2141877

Cited by 5 publications

(17 citation statements)

References 36 publications

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“…Similarly, caregivers of individuals with ID in the severe range in Biswas, Tickle, Golijani-Moghaddam, and Almack’s study [ 53 ] expressed that their stress was triggered when they were unsure how to support the child’s sexual development. Nucifora, Walker, and Eivers [ 59 ] reported that caregivers felt distressed when they were aware of the gaps between their child’s capacity and an individual of similar age with no ID (neurotypical).…”

Section: Resultsmentioning

confidence: 99%

“…Caregivers shared that ongoing involvement was needed even when their contact with the child had reduced in cases when the child had moved out of the family home [ 51 ]. Caregivers reported extra responsibility in teaching their child skills needed to be independent such as travelling in public buses [ 59 ].…”

Section: Resultsmentioning

confidence: 99%

“…Overall, almost half of the caregivers (41.2%), reported spending more than 15 h a day caring for their child with ID, and the time spent was higher when the caregivers cared for individuals with ID who were above 21 years old. Nucifora et al [ 59 ] added that caregivers reported reducing their own “independence” due to the caregivers’ strong sense of responsibility related to caregiving needs during the transition period.…”

Section: Resultsmentioning

confidence: 99%

“…Beyond that, “ negotiating everyday occupation ” was a struggle as caregivers needed to make practical household arrangements with different routines during the transition period [ 57 ]. Nucifora et al [ 59 ] highlighted that caregivers have an ongoing sense of responsibility and the need to supervise and support their child diagnosed with ID, so the caregivers develop a fear of ageing. The caregivers were concerned about how their child would be supported when the caregivers could not do so due to the caregivers’ ageing factor.…”

Section: Resultsmentioning

confidence: 99%

“…Nucifora et al [ 59 ] reported that the increase in funding and flexibility in service selection via the personalised support service in Australia, known as the National Disability Insurance Scheme (NDIS; established in 2016), does help to increase some of the caregivers’ levels of trust towards the support staff. Although the NDIS was perceived to be more flexible than the previous services, caregivers raised concerns that the other government-based services were not flexible enough.…”

Section: Resultsmentioning

confidence: 99%

See 4 more Smart Citations

Family Caregiver Adaptation during the Transition to Adulthood of Individuals with Intellectual Disabilities: A Scoping Review

Kanthasamy,

Miskon,

Barlas

et al. 2024

Healthcare

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During the transition to adulthood, individuals diagnosed with intellectual disability (ID) and their family caregivers have unique experiences. This scoping review studies the sources of the family caregiver’s objective burden, support, coping mechanisms, positive caregiving, and quality of life to understand the caregiver’s adaptation process when the individual with ID transits to adulthood, according to Joanna Briggs Institute (JBI) Scoping Review methodology guidelines. The inclusion criteria included studies of family caregivers of any age who provide unpaid care and live with individuals diagnosed with ID who are transitioning to adulthood. Of 2875 articles identified, 12 published studies were included. The main themes included caregivers reporting dissatisfaction with the available adult services and exhaustion from being a caregiver. Overall, a vicious cycle of likely increased demands during the transition, with caregivers not being prepared to cope with these demands while concurrently being dissatisfied with the adult services system, leads the caregivers to develop a pervasive sense of helplessness. Future studies would benefit from recruiting caregivers from sources other than adult-only service centres and using qualitative (to identify the broad aspects of the key factors) and quantitative (to identify the significant differences between the key factors) methodologies.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

See 3 more Smart Citations

Family Caregiver Adaptation during the Transition to Adulthood of Individuals with Intellectual Disabilities: A Scoping Review

Kanthasamy,

Miskon,

Barlas

et al. 2024

Healthcare

View full text Add to dashboard Cite

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The PTM framework and parents of children with intellectual disability diagnoses: experiences of generating narratives

James,

Dudley-Hicks,

Morgan

2024

Disability & Society

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Transition to Adulthood for Individuals With Complex Communication Needs: A Scoping Review

Batorowicz,

Mamo,

Meadows

et al. 2024

OTJR: Occupational Therapy Journal of Research

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Transitioning to adulthood is a complex and challenging process for youth with complex communication needs (CCN) and/or who use augmentative and alternative communication (AAC). This scoping review examined and consolidated available evidence documenting transition barriers and facilitators. Eight databases were searched systematically using complex communications needs/augmentative and alternative communication, transition programs, and adulthood as key terms. Participants aged 14–35 years and interventions focused on transition to occupations, including education, employment, leisure pursuits, or socializing/relationships. The search yielded 3459 records, which were screened by three independent raters. Twenty-three articles met the inclusion criteria. Studies focused primarily on employment ( n =18), postsecondary education ( n = 10), and socializing/relationships ( n = 13). Programs experience and outcomes varied. Enabling factors included organizations, transition-focused programs, and social networks. Barriers included low expectations, lack of programs/supports, and limited literacy skills. Future studies must include richer descriptions of programs/services and participants, while more work is required to explore long-term outcomes.

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Parents perception and experience of transitioning to adulthood for their child diagnosed with an intellectual disability

Cited by 5 publications

References 36 publications

Family Caregiver Adaptation during the Transition to Adulthood of Individuals with Intellectual Disabilities: A Scoping Review

Family Caregiver Adaptation during the Transition to Adulthood of Individuals with Intellectual Disabilities: A Scoping Review

The PTM framework and parents of children with intellectual disability diagnoses: experiences of generating narratives

Transition to Adulthood for Individuals With Complex Communication Needs: A Scoping Review

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