In this section, how mental illness impacts on the family will be discussed. This will begin with some general information about how the family is affected before moving on to more clearly defined areas specifically carer burden. Throughout this section we have used the term ‘Family’ and ‘Carer’ to mean those who are involved in supporting people who have a mental health problem. Care that is provided by family is often described and ‘informal care’ and those who provide it as ‘informal carers’.
After engagement with these eLearning materials you will:
What is informal care and who are informal carers?
Thinking about the concept of informal care what do you think it is?
While there is no universally accepted definition of Informal care, it is often described as care that is delivered outside the formal or voluntary structures and it frequently occurs in the home (Victor, 2004) (Adams, 2007). While most of what has been written about Informal Care has been written in the context of caring for older people with dementia, informal care occurs across the life span and family members can become carers in a number of contexts caring for a wide range of disabilities including mental health difficulties.
Informal carers on the other hand have been quite well described and The Australian Government – Australian Institute of Health and Welfare (2008) define informal carers as any person, such as a family member, friend or neighbour, who is giving regular, ongoing assistance to another person without payment for the care given. Rethink Mental Illness build on this definition and differentiate between Informal care and professional care. They extend their definition of informal carers to include close friends as well as members of the family:
Informal carers refers to family or close friends who provide a variety of emotional and practical supports. This caring is generally unpaid and carried out on a voluntary basis. However some carers will receive statutory benefits such as a carer allowance, direct payment or personal budget. Paid practitioner carers refers to people employed to support people with mental health problems, often in their own homes, with everyday tasks such as cleaning, shopping, getting dressed and cooking according to an agreed plan of care. This group is also commonly referred to as ‘care workers’ or ‘care assistants’.
Given the definitions that have been presented, what do you think constitutes informal care?
In answering this activity you may have mentioned that informal care comprises of components such as being unpaid, happens 24 hours a day, seven days a week, is time consuming, selfless, challenging, stressful and rewarding. While caring may be rewarding, carers may also experience the stress of social isolation, physical and emotional strain, and reduced education and employment potential. Use of the adjective 'informal' does not imply that the care provided is thought to be casual or lacking in structure and process. Rather, it is a means of distinguishing the care of a person by family, friends and neighbours from care that is provided by formal agencies or institutions, paid for by the receiver or provided by (necessarily) trained professionals (Australian Institute of Health and Welfare, 2015).
Watch the following film which provides an overview of carers in the United Kingdom.
Critical thinking question
In the short film, Dr Van Niekerk suggests that many mental health carers don’t recognise themselves as carers, why do you think this is? Spend a few minutes thinking about this before you move on. Some points to consider are below:
As mentioned earlier, caring occurs across the lifespan and the experience of being a carer can be different for children and young people, adults and older people. To get an understanding of what this might be like watch the three short videos below and think about the questions that follow:
Critical thinking question
Each of the videos presents a different perspective on being a carer. What are the differences and similarities between each of the carers’ individual stories? Spend a few minutes thinking about this before you move on. Some points to consider are below:
We reviewed the following articles and in these studies, the participants who were caring for people with mental health problems experienced many challenges and often these were perceived as a burden. A range of experiences were described and while there was some descriptions of positive perceptions of caring experiences, generally there were perceived as negative and disrupted the participants sense of equilibrium. You can click on the link to read more about the article. You may have access to the full text of the article depending on local rules about copyright.
|Ali L., Hedman Ahlström, B. Krevers B. & Skärsäter I. (2012). Daily life for young adults who care for a person with mental illness: a qualitative study. Journal of Psychiatric and Mental Health Nursing, 19 (7):610-617||In this study the participants describe how they often had no option but to support their friends or family member who had a mental health problem. While this was often stressful and unpredictable, the participants were aware of their own limitations as caregivers and reached out for assistance when the role became too much for them. The carers also required support to care for their relatives and friends with mental health problems.|
|Hedman Ahström, B. Skärsäter I. & Danielsson E. (2011). Children’s view of a major depression affecting a parent in the family. Issues Mental Health Nursing, 32(9):560-7||In this study the children and young adults interviewed described their sense of responsibility and of their loneliness when they described their family life with one parent affected by major depression. This negatively impacted on the children’s own needs and in some cases they had to assume a parent role. The study concludes that children need support in order to manage his sense of responsibility and this support need to be cognisant of the carers ages and levels of maturity.|
|McAndrew, S., Warne, T., Fallon, D. & Moran, P. (2012). Young, gifted, and caring: a project narrative of young carers, their mental health, and getting them involved in education, research and practice. International Journal of Mental Health Nursing, 21(1):12-9||The young carers experiences of caring for people with mental health problems were divided into four themes: 1) Excluded from being included; professional decision-making. 2) Stuck in the here and now, ignoring the future; failure of others to understand the effect that caring has on young people’s futures. 3) A hole in the net; lack of appropriate support for young carers. 4) Ensuring the hidden is on the agenda; recognizing who the young carers are (McAndre et al. 2012: 16). Services need to be sensitive to younger carers needs which are often diverse and complex.|
|Schmid, R., Schielein, T. , Binder, H. Hajaki, G. & Spiessl, H. (2009). The forgotten caregivers: Siblings of schizophrenic patients. International Journal of Psychiatry in Clinical Practice, 13: 326-337||The participants reported carer burden and the three most often reported burdens were “Handling the symptoms of illness", "Emotional burden due to the illness of the sibling" and "Uncertainty in judging what amount of stress the patient can cope with".|
|Small, N., Harrison, J. & Newell, R.2010. Carer burden in schizophrenia: considerations for nursing practice. Mental Health Practice 14 (4), 22-25.||This small study suggests that the burden for caring within the family is not shared equally. The participants described aspects of their role which they find is stressful. They also feel that they support they get from professionals is inadequate and sometimes there is conflict between the service users and carers opinions. It is suggested that there should be greater support for family caregivers.|
|Tranvag, O. & Kristoffersen, K. (2008) Experience of being the spouse/cohabitant of a person with bipolar affective disorder: A cumulative Process over time. Scandinavian Journal of Caring Science 22, 5 – 18.||The aim of this study was to identify spouses/cohabitants experiences of living with a person with bi-polar disorder over time. The article describes the participants’ journey which began with a lack of understanding to reconciliation and new hope. Along that journey many negative experiences such as anger, frustration, loneliness physical health implications, grief and loss were encountered.|
|Tweedell, D., Forchuck, C., Jewell, J. & Steinnagel, L. 2004. Families’ experience During Recovery or Nonrecovery From Psychosis. Archives of Psychiatric Nursing vol XVIII, 1 (Feb), 17-25.||For the families in this study, the participants described the impact of caring for someone with a ‘chronic mental illness’ and the negative effects it had in terms of marital arguments, social isolation health and financial problems.|
|Wade, J. (2006) ‘Crying alone with my child’: Parenting a school age child diagnosed with bipolar disorder. Issues in Mental Health Nursing 27, 885 – 903||In this study, the parents spoke about their unrelenting fear, frustration, loneliness and hurt. The article concludes that mental health nurses are well placed to support carers but need to make themselves more visible as part of the mental health team.|
|Wilson, R.L., Cruickshank, M. & Lea, L. (2012) Experiences of families who help young rural men with emergent mental health problems in a rural community in New South Wales. Contemporary Nurse, 42 (2), 167 -177.||The findings of this study suggest that families develop skills to support their sons’ mental health although caring did involve considerable psychological burden. This burden was sometimes seen as intolerable and had the participants questioning how long they could go on for. The supports that the carers sought often included non-medical professions such as teachers and collaboration between these and mental health professionals could enable early and meaningful intervention.|
EUFAMI, The European Federation of Families of People with Mental Illness is a democratic organisation, registered in Belgium as an international non-profit organisation. They have an ongoing commitment to improving care and welfare for people affected by mental illness. They also enable their member organisations to act jointly at a European Level, combining their efforts and sharing experience.
In 2015 they published results of a large study exploring the experiences of family carers of people with a severe mental illness. The results are available on the following website:
Spend some time perusing the findings of the study on the website. If your country was included in the study spend some time exploring those findings. How do they correspond with other countries?
In September 2015, EUFAMI published their Family Charter. Spend some time reading the charter and consider how you might be able to assist in realising some of the declarations.
When mental illness enters the family by Dr. Lloyd Sederer.
This talk was given at a local TEDx event, produced independently of the TED Conferences. What must families know if they have a loved one with a mental illness? In his talk, Dr. Lloyd Sederer discusses the four things we all must know to help those who may be struggling around us.
– Some guidelines for mental health professionals
NAMI, the National Alliance on Mental Health
NAMI is an American organisation whose mission is to improve the lives of people who are affected by mental illness. Central to their work is supporting families. Take some time to peruse the online supports that are available for families at the links below:
NAMI describe a three stage family emotional response to mental distress. An overview of the model can be viewed here.
As you can see the model consists of different stages:
The model suggests that family members move from viewing the experience as a catastrophe to 'moving into advocacy' which according to Karnieli-Miller et al. (2013:260) 'includes both challenging stigma through education of others and self advocacy and self-care'. The model also provides some suggested strategies that might assist families to work through any difficulties that they might have.
Critical thinking question
The emotional response model described by NAMI suggests a linear progression through a number of stages. What factors might negatively or postively influence a families movement through the process?
Mental health professionals need to be aware of the importance of working with the family and establishing a supportive and emphatic relationship with them. One of the areas that has not been discussed here is the impact of stigma on family and friends. This is known as 'courtesy stigma' and will be addressed in another section. Children and young people may also find themselves in a caring role and have been described in the literature as 'hidden' or 'invisible' children. Their experiences are discussed in more detail in the elearning material called 'Being a child or teenager in a family that experience mental distress'. The emergence of mental distress within a family can be a stressful and highly emotional time for them. Mental health professionals are in a key position to help families to manage this stress during this difficult period and they should make themselves available to address key concerns that they have.
Adams, T. (2007) The families experience of dementia. In Adams T. (Ed) Dementia Care Nursing: Promoting Wellbeing in People with Dementia and their Families. Plagrave Macmillan, Basingstoke.
Ali L., Hedman Ahlström, B. Krevers B. & Skärsäter I. (2012). Daily life for young adults who care for a person with mental illness: a qualitative study. Journal of Psychiatric and Mental Health Nursing, 19 (7):610-617.
Australian Institute of Health and Welfare (2015) Informal Caring available from http://www.aihw.gov.au/informal-care-ageing/ accessed on the 12th October 2015.
Hedman Ahström, B. Skärsäter I. & Danielsson E. (2011). Children’s view of a major depression affecting a parent in the family. Issues Mental Health Nursing, 32(9):560-7.
Karnieli-Miller, O, Perlick, DA., Nelson, A., Mattias, K., Corrigan, P. & Roe D. (2013) Family members' of persons living with a serious mental illness: experiences and efforts to cope with stigma._Journal of Mental Health 22 (3), 254 -262.
McAndrew, S., Warne, T., Fallon, D. & Moran, P. (2012). Young, gifted, and caring: a project narrative of young carers, their mental health, and getting them involved in education, research and practice. International Journal of Mental Health Nursing, 21(1):12-9.
Schmid, R., Schielein, T. , Binder, H. Hajaki, G. & Spiessl, H. (2009). The forgotten caregivers: Siblings of schizophrenic patients. International Journal of Psychiatry in Clinical Practice, 13: 326-337.
Small, N., Harrison, J. & Newell, R.2010. Carer burden in schizophrenia: considerations for nursing practice. Mental Health Practice 14 (4), 22-25.
Tranvag, O. & Kristoffersen, K. (2008) Experience of being the spouse/cohabitant of a person with bipolar affective disorder: A cumulative Process over time. Scandinavian Journal of Caring Science 22, 5 – 18.
Tweedell, D., Forchuck, C., Jewell, J. & Steinnagel, L. 2004. Families’ experience During Recovery or Nonrecovery From Psychosis. Archives of Psychiatric Nursing vol XVIII, 1 (Feb), 17-25.
Victor C. (2004) The Social Context of Ageing: A Textbook of Gerontology. Routlage, London.
Wade, J. (2006) ‘Crying alone with my child’: Parenting a school age child diagnosed with bipolar disorder. Issues in Mental Health Nursing 27, 885 – 903.
Wilson, R.L., Cruickshank, M. & Lea, L. (2012) Experiences of families who help young rural men with emergent mental health problems in a rural community in New South Wales. Contemporary Nurse, 42 (2), 167 -177.
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