Following a significant brain injury it is not only the person who has to adjust to changes but also family members/carers. The extent to which families/carers experience distress and manage to adjust to the changes following brain injury varies considerably. Family members/carers may experience a significant change to the individual roles they held prior to the brain injury. A partner may find they have to take over tasks such as taking full responsibility for the parenting role, all the household chores, DIY, gardening and managing finances etc, which may have previously been shared with the injured person. The family may become increasingly socially isolated as friends and other family members who were initially very supportive in the early stages of recovery but may have returned to their own normal routines and are unable to provide the same level of support over a prolonged period. Potential changes in the brain injured person’s personality and behaviour may also lead to estrangement from previously close and supportive family members/friends.
The associated stress of changes in responsibility and roles can lead to mental and physical health issues for family members/carers. There is a significant risk of significant disruption within the family potentially leading to the breakdown of relationships. Health and social care professionals need to provide not only patient/person centred care, but also family-centred care giving information and support to partner, parents, children or siblings.
There are an estimated 657,000 carers in Scotland, of which 100,000 are young carers (Carers Trust Scotland, 2012). These figures are likely to be higher as they do not identify ‘hidden’ carers. A hidden carer describes the person who does not recognise this role despite having caring responsibilities.
NHS Education for Scotland (NES) and Scottish Social Services Council (SSSC) define a carer as ‘’someone who provides unpaid support to a family member or friend. They may care for an older person, someone who is disabled, has a long-term illness, mental health problems or is affected by alcohol or drug misuse. Carers can be any age, from children to older people, and from every community and culture.”
A set of core principles for working with carers has been developed by Equal Partners in Care (EPiC).
Family members/carers should be encouraged to develop coping strategies which include:
- Looking after their physical health (e.g. diet, exercise and relaxation),
- Making time for his/herself each day.
- Engaging in social activities to reduce the risk of social isolation.
- Seeking help from professionals as necessary e.g. GP, Counsellor, Social Worker and/or voluntary organisation.
Voluntary agencies can be very helpful in supporting carers and family members. Some examples are Headway and Carers Trust Scotland (formerly The Princess Royal Trust for Carers).