Service users’ experiences, understanding and hopes about care in an inpatient intellectual disability unit: a qualitative study

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.

“When other people try to understand”: exploring the experiences of people with intellectual disabilities, who also have mental health problems

“…This highlighted that SUs were able to identify specific staff qualities that led them to feel supported, and behaviours that caused them more distress. These findings support previous research, which identified that SUs recognised helpful qualities in staff members, while also sharing experiences where they felt more vulnerable (Clarkson et al , 2009; Kroese et al , 2013; Lloyd et al , 2013). This suggests that despite the LD Professional Senate (2015) stating that staff needed to be well trained, this may not have happened across the services.…”

“…A further study by Strnadova ´and Evans (2012) interviewed 55 participants, which identified that positive relationships with family and staff gave SUs some control in their lives. Furthermore, through semi-structured interviews, Lloyd et al (2013) found that a secure base with a staff member enabled SUs to develop independence as an inpatient, but not all SUs had access to this support. These studies are hard to replicate as the structure of the focus groups/interviews were not included.…”

10,000 Voices: service users’ experiences of adult safeguarding

“…Service user involvement in the planning and evaluation of services has been established as a core principle in adult social care, and is gaining momentum in adult safeguarding. Increased service user involvement has been evaluated as promoting better care, and contributing to higher levels of user satisfaction (Claire Lloyd et al , 2013). It has become embedded within a range of health and social care (HSC) policies and legislation.…”

“Whose safeguarding is it anyway?” service user engagement in safeguarding processes

“…Service user engagement in the planning and evaluation of services has been established as a core principle in adult social care and is gaining momentum in adult safeguarding (Butler and Manthorpe, 2016). Increased service user involvement has been evaluated as promoting better care and contributing to higher levels of user satisfaction (Claire Lloyd et al , 2013). This involvement from service users and the public has also extended to health and social research, as noted by Hughes and Duffy (2018).…”