There is ample international research to show that the burden of caring for a family member with mental health problems falls on women. Female family caregivers unassumingly plunge into shouldering these care responsibilities without any access to information, guidance and support. This exposes them to caregiving stressors, strain, anxiety and much distress.
Family-caregiving is a term used for unpaid informal care provided by family members to chronically ill or functionally impaired persons. Caring for a loved one with a mental illness has always been a family function. Despite greater mental health-care services in Malta, changing demographics and health-care practices have shifted the focus of care from institutions to communities. Locally, when we speak about community care, what actually happens is that sufferers of mental illness can be referred by their mental health specialist to a community-based mental health clinic or to mental health clinic days at a Health Centre. The team practice of outreach mental health nurses is also growing. However, the relative who shoulders the daily care responsibilities lacks access to consultations for advice and guidance. Nor are they assessed about their own growing anxiety and risk of depression. Social and health-policy changes have also placed greater emphasis on home and family-care for the chronic mentally ill persons. Family caregiver support measures need to be introduced to safeguard their wellbeing before they too become patients.
The amount of assistance provided by a family-caregiver usually exceeds the level of help provided under ordinary circumstances. Providing care for a mentally ill loved one entails bearing emotional, psychological, physical, social and financial burdens which makes the experience overwhelming and highly stressful.
Several authors have identified emotional and social connectedness of women towards the relative they care for, as well as their sense of family obligation, as the basis for their nurturing caregiving. Women appear to be more concerned about the emotional well-being of the people they love and provide care for. This attachment often motivates them to engage in caregiving. A greater sense of responsibility towards the person who needs their care, altruism and self-sacrifice has also been found to characterise women’s attitudes to providing care.
The Lwien service of the St Jeanne Antide Foundation evolved out of the need felt by the Foundation’s community social work team for specialised guidance and training to enable team members to effectively support families beset by mental health problems. Way back in 2010, the Foundation decided to engage a highly experienced mental health nurse to assist with regular case reviews, care planning, guidance, training, and co-working through joint home visits and office-based sessions.
The decision enabled the Foundation’s social workers to better assist hundreds of families they came in touch with who constantly struggle with the care of a loved one. The team had been steadily realising that family caregivers were willing, but with significant personal sacrifices; shouldering the burden of community care of their loved one without any guidance, support, advocacy, mediation, literature in Maltese and access to non-formal education about caregiving.
Through the Lwien service, the Foundation comes in regular contact with family caregivers in distress whose financial means are diminished, constraining the family to dip into their savings, abandon their job or switch to a less demanding one and do whatever it takes to pay professionals privately so as to cope with the constant strain of caring for their loved one.
Maintaining effective links with the mental health service is crucial to the well-being of family caregivers. Hence, the service constantly liaises with state and NGO service providers in this key sector. Referrals both ways continue to take place. This liaison with mental health services for sufferers is crucial for the maximisation of positive outcomes for the families involved.
St Jeanne Antide Foundation (https://www.antidemalta.org/) is a full member of the Malta Health Network (https://www.maltahealthnetwork.org/)
Nora Macelli is the CEO at St Jeanne Antide Foundation
Who are the family caregivers of persons with severe mental illness?
The typical family caregiver for a person with severe mental illness, who participated in this study, is a woman around 60 years of age, caring for her child with schizophrenia. Eighty per cent of the family caregivers who completed the survey were female. The mean age is 58 years, with one in six caregivers younger than 55 years (14%) and one third older than 65 years (33%). This diversity is also reflected in the working situation, with 43% of the family caregivers being retired, as opposed to 42% working. Three quarters of the family caregivers takes care of a child with severe mental illness (76%), 10% for a partner or spouse and 7% for a sibling. Almost one in five takes caregiving responsibility for more than one person with mental health problems (19%).”
Source: Experiences of Family Caregivers for Persons with Severe Mental Illness: an international exploration. EUFAMI & LUCAS/ Leuven, 2015, page 38. Malta contributed 52 family caregiver responses to this study