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Intellectual disability

Caring for a family member with intellectual disability into old age: Applying the sociocultural stress and coping model to Italian and Greek migrants in Australia

Background: Little is known about how older parent caregivers from culturally and linguistically diverse (CALD) backgrounds experience caring for their family member with intellectual disability into late life. Method: In‐depth semi‐structured interviews were carried out with N = 19 family caregivers aged 50–91 from ten Italian and four Greek families. The Sociocultural Stress and Coping Model was used as a framework to interpret their experiences.

Mon, 11/23/2020 - 13:31

Carer experiences of services for adults with intellectual disabilities and Co-morbid mental ill health or challenging behaviour

The aim of this study was to examine carer experiences with mental health services for individuals with dual disabilities in Australia. This qualitative study involved semi-structured interviews with nine parents with an adult offspring with an intellectual disability in 2016. Parents who had received a mental health service for their offspring within the past two years in Australia with adequate spoken English were included. Parents were asked four open ended questions relating to their experiences of mental health services for their offspring.

Mon, 11/23/2020 - 13:26

Effect of the COVID‐19 pandemic on the mental health of carers of people with intellectual disabilities

Introduction: The measures implemented to manage the COVID‐19 pandemic have been shown to impair mental health. This problem is likely to be exacerbated for carers. Method: Informal carers (mainly parents) of children and adults with intellectual disabilities, and a comparison group of parents of children without disabilities, completed an online questionnaire. Almost all the data were collected while strict lockdown conditions were in place.

Thu, 11/19/2020 - 12:27

The Impact of Lifelong Family Care on Family Caregivers’ Perceptions of the Sexuality of Young Adults with Intellectual Disabilities in the Western Cape of South Africa

This paper presents findings of a constructivist grounded theory study conducted within the Western Cape Province of South Africa. The study explored how family caregivers respond to sexuality issues of their young adults with intellectual disabilities (ID). Indepth interviews and focus group discussions were used as methods of data collection. Twenty-five family caregivers participated in the study. The family caregivers’ perceptions highlight how the lifelong care relationship and the living arrangements attached to it may become a hindrance to people with ID exercising sexual autonomy.

Thu, 07/30/2020 - 12:12

Balancing personal wishes and caring capacity in future planning for adults with an intellectual disability living with family carers

Most people with intellectual disabilities (IDs) live at home with family, and most carers and care recipients wish to continue this arrangement. However, despite worry about what will happen when carers are unable to continue caring, most families do not plan for the future. The Future Care Road Map (FCRM) pilot study sought to enhance future care planning for families of adults with ID. Twelve families were facilitated through the FCRM process to establish future care plans, including future living and care arrangements.

Sun, 01/12/2020 - 17:52

Intellectual disability and autism: socioeconomic impacts of informal caring, projected to 2030

Background Intellectual disability and autism spectrum disorder (ASD) influence the interactions of a person with their environment and generate economic and socioeconomic costs for the person, their family and society. Aims To estimate costs of lost workforce participation due to informal caring for people with intellectual disability or autism spectrum disorders by estimating lost income to individuals, lost taxation payments to federal government and increased welfare payments.

Fri, 11/22/2019 - 17:47

Efficacy of a psychoeducational intervention in caregivers of people with intellectual disabilities: A randomized controlled trial (EDUCA-IV trial)

Background: People with intellectual disabilities (ID) are usually cared for by their own parents, families or informal caregivers. Caring for a person with ID can have a negative impact on caregivers' mental health (burden, depression, anxiety). The main aim of the EDUCA-IV trial was testing the efficacy of a psychoeducational intervention program (PIP) versus standard practice and to see whether the PIP intervention would reduce the caregiver's burden at post-intervention (4 months) and at follow-up (8 months).

Wed, 10/09/2019 - 12:24

Validation of an instrument to assess informal caregivers' perceptions about the delivery of patient-centred care to people with intellectual disabilities in residential settings

BACKGROUND: Validated instruments are needed to assess the delivery of patient-centred care (PCC) to people with intellectual disabilities (PWIDs) needing 24-h care in residential settings. Eight dimensions of PCC have been identified: taking patients' preferences into account; access to care; emotional support; physical comfort; information and education; involvement of family and friends; coordination of care; and continuity and secure transition.

Mon, 10/07/2019 - 11:58

Siblings caring for siblings with Intellectual Disabilities: Naming and negotiating emotional tensions

Extended longevity among adults with Intellectual Disabilities (ID) and increasing rates of diagnosis of Autism Spectrum Disorders (ASD) mean that parents are unlikely to remain primary carers throughout the lifecourse of adults with ID and ASD. In the context of decreased funding for disability services and policy moves toward de-congregated living, non-disabled (ND) siblings of people with ID/ASD are increasingly likely to be drawn into support and care roles for their siblings.

Tue, 09/10/2019 - 17:05

The Significance of Person-Centered Care for Satisfaction With Care and Well-Being Among Informal Caregivers of Persons With Severe Intellectual Disability

Person‐centered care (PCC) delivery and co‐creation of care (establishing productive patient‐professional interaction) are expected to lead to better patient outcomes. Given the prominent role of informal caregivers in care delivery processes to persons with intellectual disabilities (PWID), they are expected to benefit from person‐centered care (PCC) and co‐creation of care as well. This study aims to identify the relationship between PCC, co‐creation of care and outcomes among informal caregivers of PWID.

Tue, 09/10/2019 - 11:56