Issues faced by carers of people with a mental illness from culturally and linguistically diverse backgrounds: Carers' and practitioners' perceptions
Rosanna Rooney
School of Psychology, Curtin University of Technology, Perth WA
Bernadette Wright
Transcultural Mental Health Services, Department of Psychiatry, Royal Perth Hospital, Perth WA
Krissa O'Neil
Formerly Eastern Perth Public and Community Health Unit, Perth WA
PP: 132 - 144
Abstract
This paper involves the examination of the perceptions of carers from culturally and linguistically diverse (CALD) backgrounds regarding their conceptualisations of mental illness, stress and support, stigma, and pathways to seeking help. The carers' and the treating practitioners' perceptions of these issues are then compared.
The research involved semi-structured interviewing and qualitative analysis in an interpretative phenomenological approach. In-depth interviews were conducted with the carers of nine clients with a mental illness, from Italian, Vietnamese, Indian and Spanish-speaking backgrounds. The health professionals of the clients were also interviewed, and included psychiatrists and nurses.
A number of difficulties experienced by carers from CALD backgrounds were highlighted. These included a lack of involvement in the treatment process, insufficient communication from health professionals, lack of understanding about mental illness, lack of support, increased stress, and a lack of understanding of explanatory models between carer and practitioner. The development of a preventative intervention strategy that is culturally compatible with the carer's perception of caregiving is needed. From a preventative perspective, the mental health of primary carers, particularly those from disadvantaged communities, needs to be addressed.
Keywords
multicultural mental health, carers, mental illness, culturally and linguistically diverse backgrounds, CALD
Article Text
Further research is needed to determine the extent of needs and difficulties of primary caregivers from culturally and linguistically diverse (CALD) backgrounds caring for family members with a mental illness. Although studies have recently addressed issues for CALD carers of people with a mental illness (e.g., Bentelspacher, Chitran & Rahman, 1994; Gibbs, Dawson, Forsyth et al., 2004; Glendy & Mackenzie, 1998; Gorman, Brough & Ramirez, 2003; Greenwood, Feryad, Burns & Frances, 2000; Kadri, Manoudi, Berrada & Moussaoui, 2004), further work is needed on a range of cultural groups and mental illness diagnoses (Schulze & Rossler, 2005).
Researchers have begun to investigate perceptions of CALD carers both quantitatively and qualitatively. A relatively high degree of distress has been reported in carers from CALD backgrounds caring for people with a mental illness. For example, in a survey of Malay families caring for a relative with schizophrenia, Salleh (1994) found that 23 percent of carers had developed neurotic disorders resulting from stress. Wong, Tsui, Pearson et al. (2004) found that the higher the perceived family burden of mental illness in Chinese carers, the higher the level of distress, suggesting that the perception of burden is a risk factor for higher levels of stress in carers.
Quantitative studies to date have indicated mixed findings about the amount of stigma experienced by participants. For example, Asai (1983) found that 66 percent of Japanese families were 'paying no attention' to what others thought about the behaviour of their relative with a mental illness, suggesting a lower level of stigma. In contrast other researchers have suggested that stigma is high, for example, for Chinese in Canada for first onset psychosis (Ryder, Bean & Dion, 2000) and for Moroccan families with regard to schizophrenia (Kadri et al., 2004).
Families from CALD backgrounds may view the consequences of the caregiving role as both 'rewarding and stressful' (Guarnaccia & Parra, 1996) or they perceive the illness as a chance to 'give and receive' (Stern, Doolan, Staples et al., 1999). The variation in appraisal of caregiving experiences may be explained by the cognitive stress and coping model proposed by Lazarus & Folkman (1984), which has been explored by Wong et al. (2004) with Chinese carers. According to this theory, the meaning attributed to the stressor can affect the person's behavioural and emotional responses. Wong et al. found that when illness aetiology in their loved ones is attributed to something tangible or less insidious (in this case, use or mis-use of traditional Chinese medicine) carers had better levels of mental health symptomatology. It was suggested that the traditional Chinese medical framework places less emphasis on psychosocial elements (e.g. family) contributing to mental illness, which in turn may decrease the level of shame and guilt experienced by the carers. However, this could not be tested explicitly with the quantitative methodology used. These findings suggest that traditional explanatory models (Kleinman, 1978) of mental health and illness need to be further explored in a range of cultural contexts as they may be integral to the degree of perceived stigma experienced by individuals and communities. Explanatory models (Kleinman, 1978) have been defined as sets of beliefs regarding mental health problems and encounters with health professionals, including aspects such as conceptualisation of mental health and mental illness, experiences with mental health professionals, how the community and family should be treated or included, and the type of intervention received.
Using quantitative methodology with CALD participants has been associated with the problem of missing culturally specific information such as styles of coping (Nehra, Chakrabarti, Paramanand & Sharma, 2005). There is therefore a strong need to undertake further exploration of caring for a person with a mental illness using qualitative methodology; few studies to date have been conducted and measures have not yet been developed to adequately assess the carer's situation.
Several qualitative studies have been undertaken that involve CALD carers of people with a mental illness. For example, Greenwood et al. (2000) carried out 24 interviews with clients and their carers from a variety of 'Asian' backgrounds and included those who had been diagnosed with a mental illness and were currently receiving in-patient care in Britain. They found that participants objected to being described as 'Asian' as it may misrepresent many important facets of their identity, such as being Buddhist or British. In addition, they reported explanatory models of mental illness containing both Western and Eastern aspects.
Bentelspacher et al. (1994) investigated coping strategies and adaptation and support in Malaysian, Chinese and Indian family carers for relatives with schizophrenia, and found cultural differences in aspects such as use of family support. In addition they found a tendency for families to under-utilise mental health services that were Western-based. A study by Gibbs et al. (2004) included Māori families' perceptions of their relatives who had a mental health problem, but carers' perceptions were not clearly outlined. However, the study showed that by including perceptions of mental health professionals, as well as those of the clients and carers, a third perspective from the level of service delivery was able to be obtained and could be useful in future studies. Glendy & Mackenzie (1998) investigated the perceptions of Chinese family carers of relatives with a mental illness and found that family carers had a relatively low level of understanding of mental illness and were in need of greater support.
The results of these studies suggest that carers from CALD backgrounds face problems with support and understanding of mental illness. Further investigation is needed in a range of backgrounds to see if these problems exist in other cultural contexts and to clarify the nature of the needs and problems. A review of the research to date indicates a need for qualitative studies of CALD carers from a range of backgrounds so that such issues can more easily be explored, without the constraints of pre-determined questionnaires.
The aim of the current research is to investigate the experiences of CALD background carers of people with a mental illness, including: their perceptions of the aetiology and treatment of the mental illness, stress and support, stigma, pathways to seeking help, and experiences with mental health service providers. The carers' and the treating practitioners' perceptions of these issues are then compared. The inclusion of the perspective of the health professional provides an overview that can be useful in planning for service delivery aspects of carers' needs. This research utilised semi-structured interviewing and qualitative analysis as outlined by Smith (1995) in an interpretative phenomenological approach.
... continues ...
References
American Psychiatric Association (1994) Diagnostic and Statistical Manual of Mental Disorders 4th edn. Washington DC: American Psychiatric Association.
Asai K (1983) Responses of Japanese families to mental disorder. International Journal of Social Psychiatry 29(4), 257-263.
Ayalong L (2004) Cultural variants of caregiving or the culture of caregiving. The Journal of Cultural Diversity 11, 131-138.
Bakshi L, Rooney R and O'Neil K (1999) Reducing Stigma about Mental Illness in Transcultural Settings: A Guide. Canberra: Australian Transcultural Mental Health Network.
Barrett RJ (1997) Cultural formulation of psychiatric diagnosis: Death on a horse's back. Adjustment disorder with panic attacks. Culture, Medicine and Psychiatry 21, 497-511.
Bentelspacher CE, Chitran S and Rahman M (1994) Coping and adaptation patterns among Chinese, Indian, and Malay families caring for a mentally ill relative. Families in Society 75, 287-294.
Bhui K and Bhugra D (2002) Explanatory models for mental distress: Implications for clinical research and practice. The British Journal of Psychiatry 181, 6-7.
Finley FY (1999) The cultural context: Families coping with severe mental illness. Psychiatric Rehabilitation Journal 21, 230-240.
Glendy S and McKenzie A (1998) Caring for relatives with serious mental illness at home: The experiences of family carers in Hong Kong. Archives of Psychiatric Nursing 12, 228-294.
Gibbs A, Dawson J, Forsyth H, Mullen R and Tanga T (2004) Māori experience of community treatment orders in Otago, New Zealand. Australian and New Zealand Journal of Psychiatry 38, 830-835.
Gorman D, Brough M and Ramirez E (2003) How young people from culturally and linguistically diverse backgrounds experience mental health: Some insights for mental health nurses. International Journal of Mental Health Nursing 12, 194-202.
Greenwood N, Feryad H, Burns T and Frances R (2000) Asian in-patient and carer views of mental health care. Asian views of mental health care. Journal of Mental Health 9(4), 397-408.
Guarnaccia PJ and Parra P (1996) Ethnicity, social status, and families' experiences of caring for a mentally ill family member. Community Mental Health Journal 32(3), 243-260.
Kadri N, Manoudi F, Berrada S and Moussaoui, D (2004) Stigma impact on Morrocan families of patients with schizophrenia. Canadian Journal of Psychiatry 49(9), 625-629.
Kleinman A (1978) Concepts and a model for the comparison of medical systems as cultural systems. Social Science and Medicine 12, 85-73.
Lazarus R and Folkman S (1984) Stress, Appraisal and Coping. New York: Springer.
Nehra R, Chakrabarti S, Paramanand K and Sharma R (2005) Caregiving coping in bi-polar disorder and schizophrenia. Social Psychiatry and Psychiatric Epidemiology 40, 329-336.
Pickett S, Damian A, Vraniak D, Cook J and Cohler J (1993) Strength in adversity: Blacks bear burden better than whites. Professional Psychology: Research and Practice 24(4), 460-467.
Rooney R, O'Neil K and Birdsall K (1997) The stigma surrounding mental illness in transcultural settings. Grant received from the Australian Transcultural Mental Health Network, Commonwealth Department of Health and Aged Care.
Ryder AG, Bean G and Dion KL (2000) Caregiver response to symptoms on first-onset psychosis: A comparative study of Chinese- and Euro-Canadian families. Transcultural Psychiatry 37, 255-265.
Salleh MR (1994) The burden of care of schizophrenia in Malay families. Acta Psychiatrica Scandinavica 89, 180-185.
Seah E, Tilbury F, Wright B, Rooney R and Jayasuriya P (2002) A Cultural Awareness Tool. Canberra: The Australian Transcultural Mental Health Network.
Schulze B and Rossler W (2005) Caregiving burden in mental illness: Review of measurement, findings and interventions in 2004-2005. Current Opinion in Psychiatry 18, 684-691.
Smith JA (1995) Semi-structured interviewing and qualitative analysis. In JA Smith, R Harre and L Van Langenhove (Eds) Rethinking Methods in Psychology (pp.9-26). London: Sage.
Stern S, Doolan M, Staples E, Szmukler GL and Eisler I (1999) Disruption and reconstruction: Narrative insights into the experience of family members caring for a relative diagnosed with serious mental illness. Family Process 38, 353-369.
Wong D, Tsui H, Pearson V, Chen E and Chiu S (2004) Family burdens, Chinese health beliefs, and the mental health of Chinese caregivers in Hong Kong. Transcultural Psychiatry 41, 497-513.
eContent Home
