The impact of caring for adults with intellectual disability on the quality of life of parents.
Summary of "The impact of caring for adults with intellectual disability on the quality of life of parents."
Background Because of an increase in life expectancy and de-institutionalisation, many adults with intellectual disability (ID) live with and are cared for by their parents throughout their adult lives. Because of caring demands, the quality of life (QOL) of parents may be affected. The study explored the impact of caring for an adult with ID on the QOL of parents. Methods Participants were 12 parents who were the full-time carers of an adult with ID. Participants were interviewed about the effect of caring on their QOL. Interviews were analysed thematically. Results Caring had a positive impact on QOL by enabling participants to develop relationships and receive support, participate in leisure activities, achieve a sense of personal satisfaction and enable a more positive appraisal of their lives. Caring had a negative impact on participants' QOL by restricting their relationships, leisure activities and employment opportunities. Caring was also associated with financial insecurity, frustrations at the service system and fear of what the future held for their offspring. Conclusions Caring for an adult with ID had both positive and negative effects on parents' QOL. Improving services and service delivery, including the provision of residential services and respite, would address many of the issues that were reported to have a negative impact on parents' QOL.
Affiliation
Department of Occupational Therapy, Monash University, Frankston, Victoria, Australia Centre for Developmental Disability Health Victoria, Monash University, Notting Hill, Victoria, Australia.
Journal Details
This article was published in the following journal.
Name: Journal of intellectual disability research : JIDR
ISSN: 1365-2788
Pages:
Links
- PubMed Source: http://www.ncbi.nlm.nih.gov/pubmed/22233404
- DOI: http://dx.doi.org/10.1111/j.1365-2788.2011.01501.x
Medical and Biotech [MESH] Definitions
National Institute Of Nursing Research (u.s.)
Component of the NATIONAL INSTITUTES OF HEALTH. It conducts and supports clinical and basic research to establish a scientific basis for the care of individuals across the life span, from the management of patients during illness and recovery to the reduction of risks for disease and disability; the promotion of healthy lifestyles; the promotion of quality of life in those with chronic illness; and the care for individuals at the end of life. It was established in 1986.
Quality-adjusted Life Years
A measurement index derived from a modification of standard life-table procedures and designed to take account of the quality as well as the duration of survival. This index can be used in assessing the outcome of health care procedures or services. (BIOETHICS Thesaurus, 1994)
Quality Of Life
A generic concept reflecting concern with the modification and enhancement of life attributes, e.g., physical, political, moral and social environment; the overall condition of a human life.
Wechsler Scales
Tests designed to measure intellectual functioning in children and adults.
Cost Of Illness
The personal cost of acute or chronic disease. The cost to the patient may be an economic, social, or psychological cost or personal loss to self, family, or immediate community. The cost of illness may be reflected in absenteeism, productivity, response to treatment, peace of mind, QUALITY OF LIFE, etc. It differs from HEALTH CARE COSTS, meaning the societal cost of providing services related to the delivery of health care, rather than personal impact on individuals.
PubMed Articles
Background Primary family carers of adults with profound intellectual and multiple disabilities (PIMD) experience a range of considerable demands. Method A census survey was conducted in a city of...
BACKGROUND: Several cross-sectional studies have shown an association between exposure to life events and psychological problems in adults with intellectual disability (ID). To establish life events a...
Caring for a child with severe intellectual disability in China: The example of Rett syndrome.
Purpose: Rett syndrome is one of several genetic disorders known to cause severe intellectual and physical disability, mostly in girls. Girls affected by Rett syndrome appear to develop normally in th...
BACKGROUND: As adults with intellectual disability age, retirement options need to be explored. One option is to attend a mainstream community group for retirees. Support within these groups could com...
The evolving understanding of the construct of intellectual disability.
Abstract This article addresses two major areas concerned with the evolving understanding of the construct of intellectual disability. The first part of the article discusses current answers to five...
Clinical Trials
Healthy Lifestyles for People With Intellectual Disabilities
Relatively few health promotion and disease prevention programs have included or targeted people with disabilities, and even fewer have focused on individuals with intellectual disabilitie...
Comparison of Immediate vs Gradual Switch to Divalproex in Adults With Intellectual Disability
The purpose of this study is to determine whether there is any difference in side effects experienced by individuals with intellectual disorders taking Depakote DR (immediate release form)...
RCT of an Intervention to Improve the Health of Adolescents With Intellectual Disability
People with intellectual disability die five to twenty years earlier than the general population. They also experience high levels of unrecognised disease and receive inadequate levels of...
Quality of Life Study of Helixate NextGen
The aim of this study is to describe Health Related Quality of Life (HRQoL) in adolescents and adults with Hemophilia A treated prophylactically or on-demand with Helixate NexGen. The stud...
Living With Hope Program for Rural Women Caregivers
Family caregivers of terminally ill persons describe hope as inner strength that will help them continue caregiving. Our research team has developed and pilot tested a Living with Hope Pro...
