Exploring person-centredness in residential services with older people with intellectual disabilities, their family members and staff

: a mixed methods study

Abstract

Background: The importance of recognising the older person with an intellectual disability as a unique and valued citizen, living a connected and fulfilling life, is one of the foundations for this study. The principles of person-centred practice are strongly connected to intellectual disability services but are typically associated with person-centred planning. Key principles of person-centredness include choice, relationships and staff engagement. Policy changes in Ireland since 2011 has shifted the focus of care from large residential settings to living in a home environment within a community setting, created in partnership with staff. Previous research within intellectual disabilities services has focused on person-centred planning as a process. This study used an evidence-based person-centred framework as the theoretical lens to explore the concept of person-centeredness in practice.

Aim and objectives: This study explored how person-centredness is perceived and experienced within residential services. Older people with intellectual disabilities, their families and staff were research participants in the study. The objectives were:
1. To examine staff practice and understanding of person-centredness within
their day-to-day work.
2. To gain insight from older people with intellectual disabilities and their family
members on person-centredness.
3. To synthesise the experiences of older people and family members with
those of staff to expand the understanding of person-centred practice for
older people with intellectual disabilities.

Methodology: A two-phase sequential mixed-methods approach was adopted for this research study. In phase one, a quantitative survey, the Person-Centred Practice Inventory-Staff, instrument was distributed to registered nurses and healthcare assistants working in residential services in one region of the Republic of Ireland. Phase two included 15 in-depth interviews with older people with intellectual disabilities and six in-depth interviews with their family members. Two focus groups and three semi-structured interviews were conducted with staff working in residential services.

Findings: The data from both quantitative and qualitative phases were analysed and integrated at the interpretative phase of the study. The 229 completed Person-Centred Practice Inventory-Staff questionnaires were analysed and the data revealed that staff reported they were person-centred in their practice and delivered person-centred care. In the qualitative data analysis with older people and the family members, they shared that they valued this time in their lives for comfort and enjoyment. They spoke of the importance of belonging and connection to home, family and community. The focus groups and interview data with staff revealed that they felt services were not always structured to realise person-centeredness in practice, despite this they reported a commitment to their role. The concept of ‘othering’ emerged from the data analysis finding that the attribution of negative characteristics impacted on how people with intellectual disabilities are perceived within communities and services.

Implications for practice: It should be a central aim within intellectual disability services to establish participatory processes in practice to create the foundation for the development of an in-depth understanding and implementation of person-centeredness. Future planning in collaboration with older people and their families is important to promote active ageing and belonging to their communities. The right to choose where to live and with whom should be recognised. The impact of ‘othering’ of people with intellectual disabilities needs to be meaningfully discussed in partnership with people with intellectual disabilities, their families and service providers at operational and strategic levels.

Date of Award	Feb 2022
Original language	English
Sponsors	Health Services Executive
Supervisor	Owen Barr (Supervisor), Vidar Melby (Supervisor) & Paul Slater (Supervisor)