Skip to content

Toggle service links
Subscribe to RSS - Intellectual disability

You are here

  1. Home
  2. Intellectual disability

Intellectual disability

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

Placement decisions of families co-residing with an adult relative with an intellectual disability

Placement behaviours of families of adults with intellectual disabilities has received little or no attention of researches to date. A prospective design was adopted to examine changes in placement decisions of 75 family carers over a 12-month period. Factors associated with changes were also examined. Over 12 months, 30 families moved closer to considering an out of home placement. Of these 14 had placed their relative in out of home care. Proactive coping strategies were significantly associated with an increased likelihood of continued home care.

Sat, 12/12/2020 - 15:24

Experiences With the Mental Health Service System of Family Caregivers of Individuals With an Intellectual/Developmental Disability Referred to START

People with intellectual and developmental disabilities (IDD) frequently have behavioral or mental health needs, but experience obstacles to treatment. Family caregivers are often responsible for coordinating the care of individuals with IDD. This study examined family caregiver experiences using intake data from a national tertiary crisis intervention model designed for people with IDD and mental health needs. Caregivers (n = 488) completed the Family Experiences Interview Schedule. Less than half of families reported satisfaction with the mental health services received.

Mon, 11/30/2020 - 12:13

Communication experiences of family caregivers of hospitalized adults with intellectual and developmental disabilities-A qualitative study

Aim: To explore communication experiences between family caregivers of adults with intellectual and developmental disabilities (I/DD) and healthcare personnel during hospitalization.; Design: A qualitative descriptive study approach with interviews of family caregivers was used.; Method: Face-to-face, semi-structured interviews were conducted from June-September 2015 with ten family caregivers of adults with I/DD. Participants were recruited through an advocacy organization in the north-eastern United States.

Mon, 11/23/2020 - 15:05

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

Page 1 of 4