'It terrifies me, the thought of the future': listening to the current concerns of informal carers of people with a learning disability

Journal of Intellectual Disabilities : JOID
Ian Mansell, Christine Wilson

Abstract

The aim of this article is to report findings from a study that asked carers for their views on a wide range of topics. Issues relevant to the current concerns of carers are reported here. A mixed method triangulated design yielded both quantitative and qualitative data. A total of 647 members of a parent/carer federation were sent a questionnaire with a section on 'current concerns'. The response rate was 23 percent (151 participants). Two focus groups were held with 15 carers who had completed the questionnaire. Issues of concern to carers included access to health and social care information and services; quality and quantity of respite care; suitable educational provision; independence and quality of life (for a person with learning disability); and what would happen to the person with learning disability when the carer was no longer able to carry out their caring role.

References

Feb 13, 2002·Kennedy Institute of Ethics Journal·UNKNOWN National Reference Center for Bioethics Literature
Jan 6, 2010·Journal of Intellectual Disabilities : JOID·Ian Mansell, Christine Wilson

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Citations

Jun 13, 2012·Maturitas·Anthea InnesKaren Watchman
May 4, 2013·Health & Social Care in the Community·Rosemary TozerAniela Wenham
Mar 31, 2015·Journal of Applied Research in Intellectual Disabilities : JARID·Deborah DavysCarol Haigh
Aug 10, 2013·International Journal of Nursing Studies·K M McPhersonC Cummins
Jul 22, 2016·Journal of Intellectual Disabilities : JOID·Kris Southby
Mar 7, 2014·Journal of Intellectual Disabilities : JOID·Gemma Louise Willingham-Storr
Apr 17, 2013·British Journal of Nursing : BJN·Catherine Hayes, Glenn Batey
Feb 29, 2020·Irish Journal of Psychological Medicine·Emma StauntonLouise Sharkey
Mar 25, 2021·Journal of Applied Research in Intellectual Disabilities : JARID·Gemma RogersPaul Willner

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