Research Realities: Hard to reach groups

The term “seldom heard” is new in social care. It is used to describe groups of people who don’t have a collective voice and are often under-represented in consultation and involvement activities about developing services. As the personalisation agenda moves forward, involving people from seldom-heard groups in developing services and managing their own support will become even more important for social care.

The Social Care Institute for Excellence has identified four main seldom-heard groups: homeless people with addiction problems, people from black and ethnic minorities, people with communication impairments and people with dementia.

These people have been described as hard to reach – suggesting that there is something that prevents their engagement with services. Seldom heard emphasises the responsibility of agencies to reach out to excluded people, ensuring that they have access to social care services and that their voices can be heard.

In its research into the participation of seldom-heard groups, Scie identified two polarised approaches to participation. The first approach viewed participation as a discrete activity that staff planned and carried out in addition to delivering services.

The second approach made no distinction between service delivery and participation, which was part and parcel of everyday activities and relationships.

The research found that it is this integrated approach to participation that is most effective in engaging seldom-heard people who use services.

One of the key components of the integrated or everyday approach is its value base. Efforts of staff to build strong relationships with people who use services – developing trust, mutual understanding and respect – provided the foundation for an integrated approach to participation. Staff did not make assumptions about why or how an individual could be involved. People using services were at the centre of the process.

Interviews with people who use services highlighted the importance they placed on staff who were inclusive, non-judgemental and positive about the potential of the people using services. Strategies for overcoming practical barriers to participation flowed naturally from the value base.

People using services and staff recognised the need for effective practical arrangements, ensuring access to information, services and debates. This way of working became second nature for staff committed to an everyday approach to participation

Resolving differences

The experiences of staff and people who use services reveal tensions between the different sets of expectations both groups have when involved in maximising participation. Resolving these tensions require staff and people using services to negotiate how they work together. The box (below) outlines some of these pairs of tensions that need to be addressed.

Barriers to good practice include:

● A perception that some staff do not believe in the potential of the people they are supporting.

● Too little thinking or communication time for people with impairments.

● An emphasis on meetings and on computer-based communication.

● A perception that a service or group is “not for me”, or concern about being labelled a “person who uses services”.

● Fear that complaining or criticising services will jeopardise the service or an individual’s access to it.

● Lack of interpreters, accessible transport, or information in appropriate formats.

● Poor environments for communication

● Difficult group dynamics.

Overcoming barriers includes:

● Treating people with respect and valuing individual contributions.

● Describing clearly what someone can expect from getting involved and what they are expected to contribute.

● Making sure people know they can say no to getting involved.

● Offering a variety of activities and ways to get involved, such as helping others, learning, socialising.

● Allocating sufficient resources for communication, transport, meetings, support and payment.

Questions that people may have:

● Will I be treated with respect?

● What will I get out of it?

● What can I offer?

● Can I make a difference?

● Are these opportunities relevant, interesting and enjoyable?

● Will I be of help to others like me?

● Will I have problems with communication, transport or other support?

● Can I talk to someone to find out more?

Further information
● SCIE position paper 10: Seldom heard: Developing inclusive participation in social care from

● Resource guide 07: Participation: finding out what difference it makes

● Practice guide 11: The participation of adult service users, including older people, in developing social care

● Position paper 09: Developing measures for effective service user and carer participation

● Report 14: Doing it for themselves: participation and black and minority ethnic service users

● Resource guide 10: Commissioning and providing mental health advocacy for African and Caribbean men

All of the above resources are available from www.scie.org.uk

Research abstracts: seldom-heard groups

Author: Department of Health

Title: Government response to a stronger local voice

Reference: London: Great Britain. Department of Health, 2006. 46p

Abstract
This is the framework that was developed from the Stronger Local Voice consultation. The framework was developed in response to the commitment made to provide a stronger voice for individuals and communities in health and social care services. The purpose of the framework is to make sure that the needs, preferences and involvement of local people, including those that are seldom heard, are central to the planning, development and delivery of health and social care services.

Author:  INNES, Anthea

Title:  Dementia and social inclusion: marginalised groups and marginalised areas of dementia research, care and practice

Reference:London: Jessica Kingsley, 2004. 288p, bibliog

Abstract

Examining issues in dementia research and care that are often neglected or marginalised, the contributors to this book provide fresh perspectives on practice. The authors put dementia care into a socio-cultural framework, highlighting the impact of social change on dementia care over the past two decades and challenging current stereotypes. The contributors address the implications of power relationships between carers and people with dementia and take an in-depth look at a broad spectrum of issues such as the sexuality of people with dementia, communication and risk taking, people with dementia from ethnic minorities, and practice in remote rural communities.

Author: BLAKE, Simon BUTCHER, Joanne

Title:  Young men and participation: alcohol and other drugs and sexual risk taking.

Publisher: WYM Working with Young Men, 4(2), May 2005, pp6-9

Abstract
The National Children’s Bureau are involved in a range of projects and this article summarises knowledge about involving boys and young men and the specific issues affecting them in relation to alcohol and other drugs and the links between sex, alcohol and other drugs. It also includes a short testimony from Sam who has been involved in one of these projects. It ends with a checklist for involving young men.

Author: SEAL, Mike

Title: Not about us without us: client involvement in supported housing

Reference: Lyme Regis: Russell House, 2008. 141p, bibliog

Abstract
For agencies, workers and clients, this book offers theoretical insight and practical help with developing client involvement in running and advising on existing provision of supported housing. It emphasises: the importance of champions, commitment from senior management, independent advocacy, and the need for agencies to be open to ideas about changing their structures.

Author: CLINKS

Title:  Unlocking potential: how offenders, former offenders and their families can contribute to a more effective criminal justice system

Publisher: York: Clinks, 2008. 23p

Abstract
This report identifies five areas that would benefit from greater participation: policy development, commissioning, employment strategies that enable former offenders to obtain work in the criminal justice system, organisational development to enable criminal justice organisations to incorporate a user voices, and family involvement in offender resettlement.