Service user participation is an increasingly important part of social care. Choice, personalisation, involvement and participation in decision-making for service users are all central to best practice and are key elements of social care policy.
In recent years there has been substantial progress in the extent to which service user involvement is embedded in social care services, particularly learning disability and mental health services for working age adults.
However, frail elderly people, and especially those with dementia, are often still experiencing poor levels of engagement, choice and participation in the decisions that affect them.
Many people working in social care struggle to know how to support people with cognitive or communication impairments so they can be involved in a meaningful way in decisions about how they are treated and cared for.
In addition, many providers and practitioners are unaware of the specific legal obligations that they are under in relation to service user engagement and, as a result, providers risk being found in breach of their regulatory requirements by the Care Quality Commission (CQC).
This article sets out some straightforward guidance about how to engage service users, with a particular focus on those with cognitive or communication impairments.
Benefits of engagement
Participation and engagement operate at many levels; they can range from individual control over day-to-day decisions such as what to wear, what to eat and how to spend one’s time, to being involved collectively in decision-making about how a service is run. Examples include involvement in decisions about staff recruitment, operating hours or décor choices and the scope of the services.
There is substantial evidence of the positive impact and benefits of participation and engagement on confidence, self-esteem, quality of life, mental and physical health and satisfaction with the services provided.1
Many engagement activities fail to achieve benefits because they are ad-hoc and episodic, perhaps using inappropriate methods, and/or the organisation fails to recognise that effective engagement is a fundamental starting point of care provision.
Involvement and engagement is most enduring when it is a practical manifestation of the underlying culture and values of the organisation and is supported by clear and visible leadership, undertaken by staff competent in the activity and appropriately resourced.2
The relevant values that should underpin involvement work include:
- a holistic appreciation of, and respect for, the emotional, social, spiritual and artistic dimensions of the individual, irrespective of their communication or cognitive abilities
- a commitment to social inclusion based on securing people’s rights, promoting ordinary living and ensuring that people are empowered and have as much choice and control as possible.
- provide appropriate information to service users in relation to their care and treatment
- encourage and support them to understand the choices available to them, the risks and benefits and to express their views
- regularly seek the views of service users about the standard of care and treatment provided and accommodate those views as far as is reasonable and practicable.
- conduct an individual assessment of any support that a service user requires to enable them to participate on an equal footing
- design the involvement and engagement methods to support inclusion and remove barriers to participation
- gain the support of carers or family members while avoiding their views being used as a proxy
- understand the need for any staff training
- consider the format information is provided in, for example font size, easy read, language, audio or through discussion
- provide the necessary resources such as dedicated staff time and access to interpreters, signers, advocates or communication aids.
How to carry out participation and engagement
Beyond day-to-day care planning and provision, before embarking on any engagement activity, it is essential to be clear about why you are involving people and what you want to achieve. This will help you to decide the levels of involvement that are right for the task and who to involve, which in turn will enable you to assess the methods that are appropriate and the support that service users will require to participate. Consideration also needs to be given at the outset to what will be done with the information that emerges and how it will be used in decision-making processes and to support learning, either about the issues under discussion or the engagement methodology.
It is crucially important to identify how you will provide and record feedback to service users about what has happened as a result of their engagement and ensure that they feel that their contribution is valued and listened to. This is a key factor in achieving the wider benefits of engagement on self-esteem, health and satisfaction referred to earlier.
Involvement work must also be underpinned by the principles of ethical practice, including those of informed consent and confidentiality. The practical implications of these principles need to be considered carefully before beginning any engagement activity, particularly an activity involving people with cognitive and communication impairments.
People with dementia in particular continue to experience great disadvantage in being provided with the support they need to express their views. There is good evidence that people with dementia can express their views and wishes and recount their experiences of care services with the right support.3 Beyond the more obvious technique of one-to-one discussion, semi-structured questionnaires filled in by staff as part of a discussion and semi-structured interviews which elicit the service user’s ‘story’ about an aspect of their care experience have been shown to be effective methods.
Ensuring people don’t feel under pressure or that they have to give the ‘right answer’ is important. This can sometimes be overcome by staff recording responses after rather than during the discussion, or using tape recordings so that it becomes a natural dialogue from which information is collated.
In designing effective methods of engagement for people with cognitive and communication impairment, the following practical issues should be considered:
- ensure service users are supported by someone who they have had time to get to know and trust and who understands how they communicate
- ensure staff conducting the process have been fully briefed and trained
- ask people what they wish to offer their views about; let them guide the agenda
- provide explanations in a suitable manner with regular prompts and reminders for those with cognitive impairment
- ensure each person consents throughout the process
- ensure the environment is conducive to participation, for example comfortable physical position, background noise, lighting levels, time of day
- consider how tiring it can be for service users to participate and allow breaks as necessary
- use a gentle pace and straightforward language and use a range of communication tools and techniques including non-verbal communication or prompts such as photos or holding the discussion in a relevant place (for example if asking about meals hold the discussion in the dining area).
It can be difficult to sustain staff motivation and momentum when involving people with cognitive and communication difficulties. The reasons for this are often cited as pressures on staff time, a lack of staff confidence in their abilities to support the service user or a lack of belief that the process makes a difference or adds to what they know about clients’ views from day-to-day caring.
It can be helpful to have key members of staff who are acknowledged experts or champions. But, most of all, effective service user engagement, especially for those who require support to offer their views, relies on clear managerial focus and commitment.
1. P Attree, Health and social care in the community, 12, 2 (2004), 155–161.
Patient and public involvement in health: The evidence for policy implementation, (Department of Health & C Farrell, 2004)
J Carpenter, J Schneider, F McNiven, T Brandon, R Stevens, and D Wooff, British journal of social work, 34 (3): 313–333, 2004.
K J Hagglund, M J Clark, J E Farmer, and A K Sherman, Disability and rehabilitation, 26 (9): 518–527, 2004.
M J Bull, H E Hansen, and C R Gross, Applied nursing research, 13 (1): 19–28, 2000.
2. Practice guide: the participation of adult service users, including older people, in developing social care, Social Care Institute for Excellence, 2007.
3. Practice guide: the participation of adult service users, including older people, in developing social care, Social Care Institute for Excellence, 2007.
Listen to Us: Involving People with Dementia in Planning and Developing Services, Dementia
About the author
Fiona Wood is a Director of Gairnswood Ltd which provides consultancy on CQC regulation and health and social care service quality improvement. She was formerly National Head of Improvement Reviews for the Healthcare Commission and Director of operations for the National Commission for Patient and Public Involvement in Health. www.cqc-registration.co.uk
This article was first published in the July 2012 issue of Quality & Compliance Magazine.