The caregivers path to empowerment

30th May 2019

Finnish organisation Kakspy ry outline how the recovery approach can be used to support and promote the wellbeing of caregivers. Those involved in the project tell us more.

Kakspy ry the Socialpsychiatric Association of Southeast Finland, has been carrying out a project (2016 -2019) where low-threshold support and advice are provided to the families of people with mental health problems or substance abuse problems. The project has taken an approach where recovery does not mean healing or returning to the way in which things were before a person fell ill, but the discovery of a meaningful life both for the person who fell ill and caregiver, irrespective of the mental illness. The key element in the work is that recovery involves engagement that facilitates the discovery of the person’s own strengths, resources and meaningful social roles that bring satisfaction.

A family approach

An approach that takes the family into account has become more and more common in mental health work, but many people with mental illnesses and their caregivers still feel that the care and services focus on the individual, and the need by the family for comprehensive help is ignored. Caregivers often take care of the person with a mental illness to a certain degree, and this role of the caregiver has an impact on many aspects of life such as work and subsistence, leisure time, family relationships and friendships. A caregiver often has a significant role in and responsibility for the everyday life of a person with a mental illness, and even for arranging care and rehabilitation.

Mental illnesses can involve shame, which can lead to covering up the problems and delays in the seeking of help. A caregiver feels conflicting and burdening emotions such as worry, guilt, stress and fear. If this continues for a length of time or if the burden grows, the caregiver is at a greater risk of burn-out or falling ill, for example with depression. The caregiver needs information and support not only with regard to the illness but also to support their own wellbeing. Professional and peer support and advice can support the family members and give them encouragement and hope.

Using CHIME and peer support

According to Leamy et al. (2011), the key themes of recovery are connectedness; hope,  identity; meaning in life, and empowerment (CHIME). During the project, the professionals and caregivers have worked together with these five themes. The goal has been to find ways that would take into account the needs of caregivers and to support their empowerment.

The work revealed that the path of the hope and empowerment of a caregiver starts by a crisis and a chaos of emotions, and ideally makes progress towards increased understanding and involvement. The support provided by professionals in maintaining hope is important, because the information, support and guidance received by the caregivers promote the understanding and acceptance of the illness as well as confidence in the services and future. A caregiver needs time and opportunities to talk about his or her own situation with a professional, his or her own support network or peers. Peer support helps people to experience togetherness, social cohesion and to find hope in one’s own situation.

Caregivers need support in finding their own boundaries and roles, and in identifying their resources. Transparency, talking about affairs and obtaining support as a caregiver facilitate the formation of a positive identity for a caregiver and can remove the feeling of shame. At best, seeking the resources and dreams of a caregiver promotes the person’s quality of life.

Involvement, opportunities to influence, information and support in the care and rehabilitation of a person with a mental illness are considered as important issues, and at best they promote the wellbeing and empowerment of both parties. Despite the problems, a caregiver can find a meaningful direction of life for himself or herself. This may prompt a desire to make a difference and to help others in a similar situation.

The development work of the project revealed that the recovery approach can be utilised in the promotion of the wellbeing of caregivers. The results of the work will be used in the relevant region together with parties conducting work in mental health and substance abuse and with experts by experience in order to develop the quality of the encounter of caregivers. What is essential in work based on the recovery approach is an insight of the fact that it is not a certain method or model, but it is a matter of values, attitudes and encounter.

Feedback from the project

Connectedness

“I could talk about my own feelings and wellbeing as well.” – caregiver

“The importance of the first meeting is highlighted; presence, relaxed pace and atmosphere.” – professional

Hope

“The fact that someone cares and continues to ask how you’re doing.” – caregiver

”Meeting and relating with others who are in the same kinds of situations.” – caregiver

”The professional’s mission is to help caregivers understand the illnesses.” – professional

Identity

“I’m valuable the way I am, despite my problems.” – caregiver

”Respectful encounters, without judgement.” – professional

Meaning

”Through peer support I found new fulfilment in life.” – caregiver

”Improving the caregiver’s part in treatment and rehabilitation is important.”

-professional

Empowerment

”I have a right to my own life and well-being.” -caregiver

”We’ll help the caregiver find their own voice and find what they need.” -professional

This project is supported by the Funding Centre for Social Welfare and Health Organisations (STEA). Text by Minna Kurttila, Kati Koukonen and Miia Kurttila of Kakspy ry, the Socialpsychiatric Association of Southeast Finland. Photos by Miia Kurttila.