Defining good care: experiences of older people with sight loss and residential care

It is estimated that as many as half of the 400,000 older people who live in care homes have some form of sight loss (RNIB, 2014).

Although there is a growing body of research into the issues of sight loss in older age there remains little which focuses explicitly on the perspectives of older people with sight loss who are living in residential care. The impact of sight loss on physical and psychosocial well-being and older people’s quality of life are not well acknowledged in policy or practice settings.

There are currently no statutory requirements for care homes specifically relating to visual impairment. Although needs relating to sight loss relate to the requirement to provide person-centred care, there is no particular mention of visual impairment within the Care Quality Commission (CQC) guidance and eye health indicators are not included in their assessment criteria for care homes.

This study aimed to begin to address the gap in evidence by giving a voice to older care home residents with sight loss as well as exploring the perspectives of their relatives and care staff. In particular, it explored questions around how residents with sight loss experience support (or lack of support), how daily routines and the physical environment of the setting contribute (or not) to well-being for residents with sight loss, which aspects of practices within the setting are valued and considered helpful, and how relationships can support living well with sight loss within residential care.

This project was commissioned by Thomas Pocklington Trust (TPT) to address the evidence gap by focusing on the lived experiences of older people with sight loss and their everyday needs within care homes. An extensive review of research on sight loss in care homes was undertaken as part of this study. It has been written up separately to accompany this main report (see Banks and Ward 2016).

The research aims were:
> To contribute to improved standards of care and practice in residential care for older people living with sight loss.
> To generate understanding of living in care homes from the lived experiences of older people with sight loss;
> To gather the views of older people with sight loss, family members, friends and care home staff on good practice in residential care;
> To produce understanding about good standards of care and practice for older people with sight loss living in care homes and to make recommendations for an agenda for action.

The project adopted an approach based in the principles of co-production and involved Visually Impaired (VI) people in several ways. As a qualitative piece of research it focused on the lived experiences of older people living with sight loss in care homes. VI older people were also involved in an advisory capacity as members of an ‘Experts by Experience’ panel (EEP).

The researchers also worked with a Project Advisory Group (PAG) which included stakeholders from the sight loss and care sectors and VI members of staff from TPT. The PAG offered specialist guidance on the sight loss sector and ensured that a range of different perspectives were captured in the research process.

The research was carried out in seven care homes (six residential care homes and one nursing home). The majority of the homes were in the charitable sector, and there was one run by a local authority and one in the private sector.

Summary of findings (2017):
> Complexity of needs within care homes. In addition to visual impairment residents were experiencing other health conditions
including hearing loss, memory loss and confusion, and mobility difficulties. They clearly had emotional needs and some experienced poor mental health and depression.
> Challenges of living within a care home. Many spoke about the transition of moving in to the care home and the adjustments of living in a communal environment with less personal space. The extent to which residents were supported with orientation and the physical environment varied.
> A number of things were identified that positively contributed to a resident’s quality of life which included:
i. Greater awareness about what it means to live with sight loss, particularly from staff, but also other residents.
ii. Support from others: family, befrienders, and staff. Relationships with others are crucial in counteracting feelings of isolation. Many residents talked about wanting more time to just talk with staff and highlighted the importance of having company.
iii. More knowledge of aids and adaptions, and technology that could help residents maintain their interests or develop new ones.
iv. Better connections with local external organisations such as sight loss societies and rehabilitation services.
> Person-centred care and properly executed care plans should be able to pick up on issues, such as changes to existing eye conditions or the development of sight problems. But this would depend on staff having awareness and training about picking up the signs of sight loss. Residents, relatives and staff all raised issues in relation to adequate training and awareness of the impact of having sight loss and the need for more training was identified in most homes in the study.
> The wider context of the care sector and the issues of staff recruitment and retention, increased costs, less public funding for
social care inevitably impacts on staff time available to do anything beyond basic care tasks.

Conclusions and recommendations
Care home staff awareness of sight loss
Staff recognised the need for more awareness and training on visual impairment but were not aware of any existing training or where to find training resources. The identified need for visual awareness training of care home staff coupled with evidence that residents do not always like to ask for help increases the possibility that deterioration in vision will go undetected. There needs to be greater awareness and understanding of sight loss so that residents who develop sight problems after moving into the home receive diagnosis and treatment where appropriate. There needs to be greater awareness and understanding of the impacts of
sight loss so that residents with sight loss receive better support including facilitation with social interaction and communication in daily living activities.

Multiple health conditions and complex needs
All of the residents in the study were living with other health conditions and problems. It was clear that residents’ sight loss calls attention to a lot of the other problems, particularly around social interaction and isolation. Increased understanding and awareness about the particular impact of sight loss on social interactions and relationships would improve people’s quality of life within care home settings. Small basic things, such as introducing yourself when entering the room of the person with sight loss or telling people that their food is being placed in front of them, can make a big difference at an individual level.

Meaningful activities
There is a need to think about what meaningful activity means for people with sight loss and who are likely to also have other health conditions.
Activities that are focused on ‘doing’ or making things might be difficult or problematic for people with sight loss. This adds to a sense of frustration, anxiety and distress particularly in what might be quite traumatic circumstances, such as adjusting to sudden sight loss.

Aids and assistive technology
There is a lack of knowledge within homes about aids and assistive technology that might help residents with sight loss. Residents who used aids had found and funded these themselves so a better general understanding about what exists would benefit more residents. Many people may be unfamiliar with technology and lack confidence to use devices, and giving residents opportunities to try them out would be beneficial.

Befriending and support
People in care homes may be amongst the most marginalised within society. Assumptions that once people are living in a care home they no longer require social support and services may prevent care home residents’ access to services that may be available to older people living in the community. Greater links with the wider community, particularly with local organisations with specialist knowledge on sight loss, could be really beneficial for care home residents and potentially provide vital
support services, such as befriending.

Understanding experiences of sight loss through co-production
Hearing the voices of older people is a powerful way of helping care providers and practitioners understand what living with sight loss is like within the setting of a care home. The Experts by Experience Panel contributed personal experiences and knowledge and worked with the researchers on the design of the research and on the analysis and interpretation of the data. The PAG drew together a wide range of professional and personal experiences from people working in the sight loss and care sectors. Members provided valuable contextual information which contributed to the interpretation of the data and ways in which the research could impact on changing practice.

Recommendations
There is a clear need for training in sight loss awareness for staff in care homes. Care home managers expressed a preference for in-house training and the development of the ‘Looking Out for Sight’ visual awareness training by Wiltshire Sight, commissioned by TPT, could help to address the lack of sight loss awareness in care homes.

Support through local sight loss societies would help with the social isolation residents with sight loss experience. Local societies have expertise to offer advice and support about aids and technology to care home residents.

Improving practice in care homes will need a stronger regulatory framework for training and standards in relation to sight loss.
Organisations who work with people with sensory loss could work together strategically to influence statutory bodies.

Co-produced research has an important role to play in generating knowledge and understanding about the experiences of VI people. This project has highlighted good practice for the sight loss sector in how to do this. For example, it shows how time and resources are required for co-production to work effectively and in ethically sound ways which do not result in tokenism.