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Intellectual disability

Staff and family views of alternative respite services for adults with intellectual disabilities – aims, outcomes and experiences

Background: Respite care has traditionally been conceptualised as a short residential break which allows families a break from caring responsibilities. In recent years, alternative respite services have been developed which promote greater social integration and normalisation for people with intellectual and other disabilities.

Wed, 06/22/2022 - 13:44

The reported effects of the COVID-19 pandemic on people with intellectual disability and their carers: a scoping review

Background: People with an intellectual disability are a vulnerable group during COVID-19 due to multi-morbidity, frailty, underlying conditions/health problems, social circumstances and limitations in understanding. This place them at greater risk of more severe outcomes from COVID-19. Objective: To chart the evidence of the effects of the COVID-19 pandemic on people with intellectual disability and their carers reported in the research.

Thu, 06/09/2022 - 19:14

Mediating effects of family functioning on the relationship between care burden and family quality of life of caregivers of children with intellectual disabilities in Mongolia

Background: Intellectual disabilities are characterized by constant and complex needs for care that place a heavy burden on the families of affected individuals and affect their overall quality of life. We evaluated the mediating effects of family functioning on the relationship between care burden and the family quality of life of caregivers of children with intellectual disabilities in Mongolia. Methods: Data were collected from a sample of 150 caregivers of children with intellectual disabilities from October 2017 to November 2017.

Wed, 06/08/2022 - 14:38

Health promotion in adults with Down’s syndrome: Experiences of caregivers

Background: Individuals with Down’s syndrome rely on caregivers to support lifestyle behaviour change. It is therefore important to understand how caregivers put health recommendations into practice. Methods: Through conducting semi-structured interviews, the present study sought to understand the facilitators and barriers that caregivers faced when implementing health promotion advice.

Fri, 06/03/2022 - 12:47

Feeling of grief and loss in parental caregivers of adults diagnosed with intellectual disability

Background: The diagnosis of intellectual disability in children can produce complex grief‐related feelings in their parents. Previous studies have focused on the moment of the diagnosis or the early life of the children, and little research has been conducted on their feelings of grief in adulthood. The objective was to analyse the process of grief/loss in parents of adult offspring with intellectual disability. Method: The intentional sampling included sixteen parents who responded to semi‐structured interviews.

Mon, 05/30/2022 - 21:51

The experience of being a father of a son or daughter with an intellectual disability: Older fathers' perspectives

Background: As life expectancy for people with an intellectual disability increases, there is a growing cohort of older father carers. This study aimed to gain a more in‐depth understanding of older father carers' experiences of parenting. Methods: Semi‐structured interviews were conducted with 7 older fathers (M = 63.9 years) and analysed using constructivist grounded theory. Results: Three conceptual categories were identified. "Wearing different hats: how fathers' sense of identity had altered over the years.

Sun, 02/27/2022 - 16:13

Determining the informational needs of family caregivers of people with intellectual disability who require palliative care: A qualitative study

Objectives: People with intellectual disabilities are living longer, and many require palliative care. There is a lack of evidence regarding information needs which may exist for their family caregivers. This study aimed to determine the informational needs of family caregivers of people with intellectual disabilities who require palliative care. Methods: A qualitative, exploratory design was underpinned by the Transactional Model of Stress and Coping and the Transformative Paradigm.

Tue, 02/08/2022 - 12:30

The Crisis Facing Older People Living with Neurodiversity and Their Aging Family Carers: A Social Work Perspective

This commentary addresses barriers to care among older adults living with neurodiversity (ND), and their aging family carers in the context of the COVID-19 pandemic in Canada. Factors contributing to inequities are described and the significant negative consequences of current policy decisions on the social and mental health of older adults with ND and their aging family carers are highlighted. The commentary calls for a collective social work response that highlights the critical role of support and advocacy necessary to redress social exclusion. 

Wed, 02/02/2022 - 10:58

COVID-19 IDD: A global survey exploring family members' and paid staff's perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers

Background : This protocol outlines research to explore family members' and paid staff's perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers. Evidence suggests that people with intellectual and developmental disabilities experience disparities in healthcare access and utilisation. This disparity was evident early in the pandemic when discussions arose regarding the potential exclusion of this population to critical care.

Thu, 03/18/2021 - 20:30

Supporting people with an intellectual disability and dementia: A constructivist grounded theory study exploring care providers’ views and experiences in the UK

Background There is a need to better understand the experiences and support needs of paid and family carers of people with an intellectual disability and dementia, and the role of Intellectual Disability Dementia Care Pathways (IDDCPs). This study explored the experiences of carers, and IDDCPs and other support structures within those experiences. Methods A constructivist grounded theory methodology was implemented. Data were obtained through 23 semi‐structured interviews with two family carers, eight paid carers and eight healthcare professionals.

Thu, 01/14/2021 - 10:04

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