BACKGROUND: The purpose of this review is to synthesize the qualitative literature on the perspectives of those caring for a family member with intellectual disabilities and challenging behaviour, with a focus on their experiences of support services. MATERIALS AND METHODS: A thorough literature search resulted in 17 studies being selected for inclusion in the meta-synthesis. RESULTS: Five primary themes were identified: (i) love, (ii) altered identity, (iii) crisis management, (iv) support is not just 'challenging behaviour' services, and (v) the future: low expectations, high hopes. CONCLUSIONS: Carers spoke of the deep love for their family member and of the chronic strain the demands of caregiving placed upon them. Support services often caused additional problems and high levels of stress for caregivers, although there were also reports of good practice. The findings may inform clinicians and service providers about how best to support families of individuals with challenging behaviour.
BACKGROUND: The purpose of this review is to synthesize the qualitative literature on the perspectives of those caring for a family member with intellectual disabilities and challenging behaviour, with a focus on their experiences of support services. MATERIALS AND METHODS: A thorough literature search resulted in 17 studies being selected for inclusion in the meta-synthesis. RESULTS: Five primary themes were identified: (i) love, (ii) altered identity, (iii) crisis management, (iv) support is not just 'challenging behaviour' services, and (v) the future: low expectations, high hopes. CONCLUSIONS: Carers spoke of the deep love for their family member and of the chronic strain the demands of caregiving placed upon them. Support services often caused additional problems and high levels of stress for caregivers, although there were also reports of good practice. The findings may inform clinicians and service providers about how best to support families of individuals with challenging behaviour.
Authors: Gemma Rogers; Gisela Perez-Olivas; Biza Stenfert Kroese; Varsha Patel; Glynis Murphy; John Rose; Vivien Cooper; Peter E Langdon; Steve Hiles; Clair Clifford; Paul Willner Journal: J Appl Res Intellect Disabil Date: 2021-03-23
Authors: Rachel Lowe; Christovam Barcellos; Patrícia Brasil; Oswaldo G Cruz; Nildimar Alves Honório; Hannah Kuper; Marilia Sá Carvalho Journal: Int J Environ Res Public Health Date: 2018-01-09 Impact factor: 3.390
Authors: Richard P Hastings; Vasiliki Totsika; Nikita K Hayden; Caitlin A Murray; Mikeda Jess; Emma Langley; Jane Kerry Margetson Journal: BMJ Open Date: 2020-02-12 Impact factor: 2.692
Authors: Elizabeth Randell; Richard P Hastings; Rachel McNamara; Roseanna Knight; David Gillespie; Zachary Taylor Journal: Trials Date: 2017-10-05 Impact factor: 2.279