Service users’ experiences, understanding and hopes about care in an inpatient intellectual disability unit: a qualitative study
| Date | 12 July 2013 |
| Pages | 201-210 |
| Published date | 12 July 2013 |
| DOI | https://doi.org/10.1108/AMHID-03-2013-0024 |
| Author | Lisa Claire Lloyd,Claire Hemming,Derek K. Tracy |
| Subject Matter | Education,Health & social care |
Service users’ experiences, understanding
and hopes about care in an inpatient
intellectual disability unit: a qualitative study
Lisa Claire Lloyd, Claire Hemming and Derek K. Tracy
Lisa Claire Lloyd is a Research
Assistant in the Psychology
Department at Oxford Brookes
University, Oxford, UK, and the
Cognition, Schizophrenia &
Imaging Laboratory,
Department of Psychological
Medicine, The Institute of
Psychiatry, King’s College
London, London, UK.
Claire Hemming is a Clinical
Psychologist in Specialist
Learning Disability Services,
Leicestershire NHS Trust,
Leicester, UK.
Derek K. Tracy is a Consultant
Psychiatrist at Princess Royal
University Hospital, Oxleas
NHS Foundation Trust,
London, UK and the Cognition,
Schizophrenia and Imaging
Laboratory, Department of
Psychological Medicine,
The Institute of Psychiatry,
King’s College London,
London, UK.
Abstract
Purpose – Service user involvement in evaluating provided services is a core NHS concept. However
individuals with intellectual disabilities have traditionally often had their voices ignored. There have been
attempts to redress this, though much work has been quantitative, and qualitative study has more often
explored populations transitioning to more mainstream care and those with milder disabilities. The authors
set out to explore the views of individuals with more severe intellectual disabilities who were resident
inpatients on what helped or hindered their care.
Design/methodology/approach – The paper uses qualitative analysis through semi-structured interviews
of eight (three male, five female, mean age 33) resident service users with severe intellectual disabilities.
Findings – Sub-categories of staff personality, helpful relationships, and the concept of balanced care
emerged under a core category of needing a secure base. Clients were very clearly able to identify and
delineate: personal attributes of staff; clinical means of working; and the need to balance support with
affording independence and growth. They further noted factors that could help or hinder all of these, and
gave nuanced answers on how different personality factors could be utilized in different settings.
Originality/value – Little work has qualitatively explored the needs of residential clients with severe
intellectual disabilities. The authors’ data show that exploring the views of more profoundly disabled and
vulnerable individuals is both viable and of significant clinical value. It should aid staff in contemplating the
needs of their clients; in seeking their opinions and feedback; and considering that most “styles”of
personality and work have attributes that clients can value and appreciate.
Keywords Intellectual disability, Qualitative study, User involvement, Inpatient, Residential,
Learning disability, Disabilities
Paper type Research paper
Introduction
Service users’ opinions and an evolution of respect
A complimentary relationship between staff and clients based on mutual respect and
collaboration to reach beneficial outcomes is being increasingly encouraged in modern
healthcare, with the concept of the empowered “expert by experience” providing leadership for
their own care (Department of Health, 2005; Hoole and Morgan, 2010; Haigh, 2008). Increased
service user involvement leads to better care, treatment concordance, health outcomes and
higher levels of patient satisfaction (Stringer et al., 2008).
Historically,however, the views and subjective experiences of people with intellectual disabilities
(IDs) have frequently been ignored and even discouraged (Crocker,1969; Raitasuo et al., 1999)
and they continue to be amongst the “most excluded, least independent and most likely to lack
control in everyday life” (Hoole and Morgan, 2010) and suffer “continuing impoverishment
and disempowerment” (Goble, 1999). Nevertheless over the past 10-15 years there has been a
DOI 10.1108/AMHID-03-2013-0024 VOL.7 N O. 4 2013, pp. 201-210, CEmerald Group Publishing Limited, ISSN 2044-1282
j
ADVANCES IN MENTAL HEALTH AND INTELLECTUAL DISA BILITIES
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