The Role of Family Caregivers: A EUFAMI Viewpoint

Abstract

The experience of stigma and discrimination against people with mental illness is by no means confined to them but extends to their families who take responsibility for their care. That responsibility is growing, yet the needs of family carers and the burdens of care they assume are neither sufficiently recognised nor understood and therefore not adequately provided for.

Guiding Principles for Family Support

• Bert Johnson 

1. EUFAMI (European Federation of Associations of Families of People with Mental Illness), Diestsevest 100, Leuven, 3000, Belgium

   Bert Johnson

This chapter sets out six principles as guidance to enable the crucial role of family caregivers to be acknowledged and their own needs to be met.

Principle 1

Carers’ essential role and expertise should be recognised and respected.

• They should be listened to without bias or prejudice and be taken seriously.

• They should be recognised as someone who is providing support to the person for whom you care.

• They should be treated as someone who has relevant and important knowledge about the person for whom they care.

• All staff should be aware of the distress and anxiety that caring can cause and help carers cope with this.

• They should be asked to give their opinion – this should be respected and valued and where necessary kept confidential.

• Their views should be taken into account in the decisions about the person they care for.

• They should be told how the information they provide will be used.

• They should be able to choose whether they wish to take on, or continue with, the role of carer.

Principle 2

Carers should be given the information that they need to help them provide care.

• They should be helped to obtain, within a reasonable time, the information that they need to get help and support for themselves and the person for whom they care.

• The information should be clear and accurate.

• The information should be provided in a way which is helpful to them – for example orally, in writing or on tape, in their own language, through an interpreting service or in discussion with a qualified professional.

Principle 3

Carers should be involved in planning and agreeing the care plan for the person they care for.

• Their views about the needs of the person for whom they care should be sought and taken into account.

• They should be involved in the decisions made about themselves and (with his or her consent) the person for whom they care, including the preparation of a care plan.

• Even if the person they care for is unwilling for them to be involved in planning and agreeing his or her care, they should be told who to contact in an emergency or in a crisis.

• They should be told of their rights regarding a carer’s assessment.

• They should be given a copy of the care plan of the person for whom they care (with his or her consent). This should state the responsibilities of all the people who are involved in providing care.

• If they feel that the care plan is not working or is being improperly implemented, they should be given the opportunity to state their views and to be listened to and be involved in the discussions on the action to be taken to address the problems they have identified.

• When the person they care for is receiving care and treatment in hospital, they should be involved in planning and agreeing the discharge plan, including the date of discharge.

• So far as possible, meetings should be held at a time that suits them and the person they care for.

Principle 4

Carers’ needs as carers should be recognised, responded to and reflected in the care plan.

• All staff should recognise that they may have additional commitments to that of their caring role, such as looking after their children or going to work.

• Their ethnicity and culture, religion, gender, sexual preference, age and other characteristics should be respected and taken into account but without general assumptions being made about them.

• If they require assistance in communicating their views, they should be given the appropriate assistance, for example if English is not their first language, they should be assisted by a qualified interpreter.

• If they are told that they are not entitled to a carer’s assessment, they should be told why.

• If they have a carer’s assessment, this should:

  • If they so wish, be carried out separately from the assessment of the needs of the person for whom they provide care

  • Allow them to have someone to support them while the assessment is taking place

  • Give them the opportunity to assess their own needs

  • Assess their needs without the assumption being made that they are willing or able to take on a caring role or to continue to provide the same level of care

  • Consider how their caring role affects their relationship with other family members and friends and their ability to hold down a job

  • Address their own health and wellbeing, their need for emotional and other support and how they would like to be helped in providing care

  • Consider whether they would like to take a break from caring and if so, look at what type of support they think would enable them to do this

• When they have a carer’s assessment, they should be given a copy of their assessment and care plan.

• They should have their needs regularly reviewed, as circumstances require, but at least annually and, if they so wish, this should be carried out separately from the review of the needs of the person for whom they care.

Principle 5

Carers should be provided with appropriate help and support when they need it.

• They should be told of their rights regarding a carer’s assessment.

• They should be told who to contact if they need help and to know that their request will be responded to within a reasonable time.

• Their contribution should be valued and incorporated into the planning, development and evaluation of services.

• Where plans such as hospital admission are being considered, they and the person they care for should be given the opportunity to consider alternative care.

• They should be given information about what to do and whom to contact in times of crisis.

• They should be told about opportunities to take a break from caring.

• They should be given details of local support groups and advocacy services.

• They should be helped to get advice about housing and employment issues and financial matters, including entitlement to benefits and training for carers.

• They should be given a copy of their own care plan in a form which they find useful.

• The services that they receive should be of good quality, appropriate to their needs and provided within an agreed time.

• They should be advised on what action to take if they are not happy with the assessment or the decisions made as a result of the assessment or if they think that the care plan is not being implemented properly.

Principle 6

Carers should be actively involved in the planning, development and evaluation of services.

• They should be given the opportunity to state their views on the quality of services provided and on the range of services which need to be developed.

• They should be told how their views will be taken into account as part of an ongoing evaluation process.

• Their contribution should be valued and incorporated into the planning, development and evaluation of services.

• Where they are invited to meetings, they should be offered help in arranging alternative care for the person they care for and receive payment for travel and alternative care costs.

• They should be given adequate notice of meetings, consultation periods and other relevant events.

• They should be told how the particular consultation process will work.

• They should be told how the information they provide will be used.

• They should receive feedback on the outcome of the consultation within 6 months of completing the consultation.