Making sense of it all: From the loss of one’s bearings to the search for meaning and hope
The impact of mental illness on family members has been documented for nearly fifty years. While research on the subject has helped us to better understand how family members experience this situation and to develop services to meet their needs, it has also made it possible to recognize how unsettling this event can be.
It is unsettling because family members find it difficult to make sense of seeing one of their own change radically as a result of mental illness. It doesn’t make sense to see one of their own engage in behaviours that are concerning, worrisome, and can sometimes put their safety and the safety of others at risk. It doesn’t make sense that one of their own can no longer function in everyday life or assume the roles expected of them by society. It makes no sense at all for family members to see one of their own lose their bearings and enter into a state of suffering, all while being confronted by their own inability to alleviate it.
In addition, family members often feel a sense of loss over the person with the illness, their relationship with this person and the family life they have imagined and desire. This loss of bearings experienced by family members as well as by the person with a mental illness requires readjustment, reorganization on several levels and, eventually, finding new meaning in this situation affecting both personal and family life.
This text provides reference points to help conceptualize the family member experience and guide them in their search for meaning and hope.
Conceptual reference points for understanding how mental illness affects family members
The burden experienced by families coping with mental illness
Beginning in the 1960s, research on the concept of family burden first documented the impact of mental illness on family members (Grad & Sainsbury, 1968; Hoenig & Hamilton, 1966). This research helped identify the range of concrete, observable consequences of mental illness on family members (objective burden), such as the disruption of everyday family life and the impact on family and social relationships, work and leisure time and finances (Atkinson & Coia, 1995; Schene, 1990). It also made it possible to document the emotional reactions felt by family members experiencing this sort of situation (subjective burden), such as guilt, worry, helplessness and sense of loss, as well as its impact on physical and mental health (Shene, 1990). The main contribution of this work has been to highlight the significant strain felt by family members who undertake a supportive role. This research has also helped to normalize the responses of family members reacting to a particularly difficult situation to the best of their knowledge (Fadden et al., 1987, Maurin & Boyd, 1990).
A life experience with both negative and positive aspects
Although burden continues to be a prominent notion in literature regarding the impacts of mental illness on family members, researchers have pointed out that use of this notion can be pejorative to people with a mental illness due to its failure to recognize the potential positive aspects of the experience (Ricard et al., 1995; Addington et al., 2003). In response to these findings and based on Lazarus and Folkman’s 1984 Model of Stress and Coping, researchers have proposed a more nuanced and comprehensive view of how family members who assume a support role experience the challenges of mental illness. In this understanding of the family experience, being involved in a support role is not seen as a burden, but rather a life experience in itself, where both negative and positive aspects can be identified (Szmulker et al., 1996; Lefley, 1996). While still recognizing the challenges associated with the role of caregiver or assistant, a more global view of family members’ experience while giving support allows us to provide new reasons for hope by identifying the sources of learning, value and satisfaction that can be associated with this role.
Positive aspects of the family member experience can be grouped into two broad categories. Firstly, family members are able to identify sources of learning and personal growth related to their experience. Some discover personal skills, such as patience, tolerance, and self-confidence, that they were not aware they possessed (Bulger et al., 1993; Veltman et al., 2002; Morin, 2010). Others find that they have become more understanding of people who are experiencing difficulties and more altruistic both with their loved one and other people in their lives and that they are less likely to judge others (Bulger et al., 1993; Veltman et al., 2002; Morin, 2010). In retrospect, family members feel that this experience gave them the opportunity to learn about themselves and, most importantly, discover an inner strength they were not aware they had (Bulger et al., 1993; Schwartz & Gidron, 2002; Veltman et al., 2002; Morin, 2010).
Secondly, there are also positive aspects to be gained in terms of the family member’s relationship with their loved one who has the illness. Family members recognize the courage and strength that their loved one must summon when battling the suffering associated with their mental illness. Despite the challenges they face on a daily basis, they express admiration and pride in the tenacity they demonstrate in times of adversity (Veltman et al., 2002; Morin, 2010). The person with the mental illness’s contribution to family life, the sharing of common interests with family members and the mutual support that can develop are also sources of satisfaction within the family member experience (Greenberg et al., 1994; Schwartz & Gidron, 2002).
In addition, a nuanced and global view of the family experience allows for focus on the skills families possess for coping with this particularly difficult situation. Thus, beyond the unsettling aspects that family members experience, it is possible for them to find new footing by learning new ways of doing everyday tasks and by fostering a new relationship with the person who has a mental illness, in particular, by temporarily revising their expectations and hopes for him or her. The sources of satisfaction and appreciation that may emerge from their role as a supportive assistant to their loved one may also allow families to attribute new meaning to the situation.
The search for balance, meaning and hope
The family member experience is punctuated by moments that are difficult and those that are more satisfying. By seeking balance between these two contrasting poles and drawing on moments that are sources of learning and appreciation, it may be possible to give new meaning to this life experience. Although use of the appropriate services can offer some rational meaning by providing support, information about mental illness and daily guidance on the use of certain coping strategies, the true personal meaning of this experience will emerge after steps have been taken toward adapting to this difficult situation. FFAPAMM’s affiliate members located throughout Quebec contribute to the process by supporting family members in their search for balance. They are also there to provide suggestions to guide family members and loved ones in their quest to find meaning and hope.
T.S., M.Serv.Soc. Doctoral candidate in social work Professor in social work Department of Psychosociology and Social Work University of Quebec at Rimouski (UQAR)
Reproduced with permission. Marie-Hélène Morin, 2010 Reproduction prohibited without consent from the author.
Marie-Hélène Morin, t.s., M.Serv.Soc. Doctoral candidate in social work
Professor in social work
Department of Psychosociology and Social Work
University of Quebec at Rimouski (UQAR)
Reproduced with permission. ©Marie-Hélène Morin, 2010
Reproduction prohibited without consent from the author.
Addington, J. Coldham, E. L., Jones, B., Ko, T. & Addington, D. (2003). The first episode of psychosis : the experience of relatives. Acta Psychiatrica Scandinavica, 108(4), 285-289.
Atkinson, J. M. & Coia, D. A. (1995). The response of the family to schizophrenia. In Families coping with schizophrenia (pp.30-42). New York : John Wiley.
Bulger, M. W., Wandersman, A. & Goldman, C. R. (1993). Burdens and gratifications of caregiving : appraisal of parental care of adults with schizophrenia. American Journal of Orthopsychiatry, 63(2), 255-265.
Grad, J. & Sainsbury, P. (1968). The effects that patients have on their families in a community care and a control psychiatric service : a two year follow-up. British Journal of Psychiatry, 114, 265-278.
Greenberg, J. S., Greenley, J. R. & Benedict, P. (1994). Contributions of persons with serious mental illness to their families. Hospital and Community Psychiatry, 45(5), 475-480.
Fadden, G., Bebbington, P. & Kuipers, E. (1987). The burden of care : the impact of functional psychiatric illness on the patient’s family. British Journal of Psychiatry, 150, 285-292.
Hoenig, J. & Hamilton, M. W. (1966). The schizophrenic patient in the community and his effect on the household. The International Journal of Social Psychiatry, 12 (3), 165-176.
Lazarus, R. & Folkman, S. (1984). Stress, appraisal and coping. New York : Springer.
Lefley, H. (1996). Family caregiving in mental illness. Thousand Oaks : Sage Publications.
Maurin, J. T. & Boyd, C. B. (1990). Burden of mental illness on the family : a critical review. Archives of Psychiatric Nursing, 4(2), 99-107.
Morin, M.-H. (2010). Familles et premières psychoses : les facteurs influençant l’adaptation des parents ayant bénéficié d’interventions familiales spécialisées. Thèse de doctorat (en cours). Québec : Faculté des sciences sociales, Université Laval.
Ricard, N., Fortin, F. & Bonin, J.-P. (1995). Fardeau subjectif et état de santé des aidants naturels de personnes atteintes de troubles mentaux en situation de crise et de rémission : rapport de recherche. Montréal : Facultés des sciences infirmières, Université de Montréal.
Schene, A. H. (1990). Objective and subjective dimension of family burden. Social Psychiatry and Psychiatric Epidemiology, 25, 289-297.
Schwartz, C. & Gidron, R. (2002). Parents of mentally ill adult children living at home : rewards of caregiving. Health and Social Work, 27(2), 145-154.
Szmukler, G. I., Burgess, H. H., Benson, A., Colusa, S. & Bloch, S. (1996). Caring for relatives with serious mental illness : the development of the Experience of Caregiving Inventory. Social Psychiatry and Psychiatric Epidemiology, 31, 137-148.
Veltman, A., Cameron, J. I. & Stewart, D. E. (2002). The experience of providing care to relatives with chronic mental illness. Journal of Nervous and Mental Disease, 190(2), 108-114.