Offering choice to patients is at the heart of the NHS, supported by a set of legal rights (see the Choice Framework) and patient led assessments of care environments have been introduced (PLACE) applying to hospitals, hospices and day treatment centres providing NHS funded care. At present this covers only care environments, not clinical care or how well staff are doing their job.
The authors of this current study point out that the involvement of people with learning disabilities in such processes is at an early stage. There have been approaches such as BILD’s Quality Network and more recently the Q-Kit team which aims to encourage people with Learning Disabilities to talk about what is important to them and identify how their service can be developed and improved.
The researchers here were concerned that previous approaches have often been focused on people moving from insititutional to community based services, or on those people described as having ‘milder’ disabilities. In this study, they aimed to look at the views of people described as having more severe learning disabilities who were resident inpatients in NHS services.
They wanted to know what people thought helped or indeed, hindered their care and supoprt.
What they did was to construct a semi structured interview schedule which they administered to eight individuals who were resident inpatients, five women and three men. The mean age of the respondents was 33 years.
They used qualitative analysis of the transcripts of the interviews to identify the main themes
What they found was that a core category of needing a secure base emerged. Under this, were sub categories of staff personality, helpful relationships, and the concept of balanced care. All of the respondents were able to identify the personal attributes of staff; the clinical means of working and balancing support offered with opportunities for independence and growth.
The responses were detailed and identified a number of factors that helped or hindered.
Interestingly, responses also identified personality factors that might be used in different settings.
They found the respondents identified most styles of personality and approaches to clinical work as having attributes that were valued and appreciated.
The authors conclude that “exploring the views of more profoundly disabled and vulnerable individuals is both viable and of significant clinical value.”
They suggest that this approach should yield helpful information for managers and commissioners in thinking about ways in which in-patient services can be more focused on the needs of residents.
Service users’ experiences, understanding and hopes about care in an inpatient intellectual disability unit: a qualitative study, Lloyd L et al., in Advances in Mental Health and Intellectual Disabilities, 7, 4, 201 – 210