Differences in impact of long term caregiving for mentally ill older adults on the daily life of informal caregivers: a qualitative study

BMC Psychiatry

Pim Cuijpers²  Mieke HF Grypdonck³  Marja J Aartsen¹  Marian I Zegwaard⁴ 

[1] Faculty of Social Sciences, VU-University Amsterdam the Netherlands, Amsterdam, the Netherlands;Clinical Psychology, VU-University Amsterdam, Amsterdam, the Netherlands;Nursing Science, Ghent University, Ghent, Belgium;Department of Psychiatry of the Elderly, Altrecht Mental Health Care, Oude Arnhemseweg 260, Zeist 3705 BK, the Netherlands

关键词: Psychiatric nursing;    Loss;    Gain;    Informal caregiver;    Mental illness;    Older adults;   

Others  :  1124091
DOI  :  10.1186/1471-244X-13-103

 received in 2012-09-18, accepted in 2013-03-14,  发布年份 2013

【 摘 要 】

Background

Owing to the policy of extramuralization of care in most Western countries older people with severe mental illness have to rely more and more on informal caregivers for daily care. Caregivers themselves are often aged, and although caregiving implies an impact on daily life that exceeds the boundaries of usual informal care, the impact differs across caregivers. Some caregivers seem to suffer more than others, and the differences cannot be fully understood by factors currently known to exacerbate the burden of caregiving. In order to help caregivers reduce the impact of caregiving it is important to gain a deeper understanding of factors influencing the burden and its impact on the caregiver’s life. With this in mind, the aim of the study is to explore and understand differences in the impact of long-term caregiving on the quality of life of caregivers who look after older adults with severe mental illness.

Methods

A qualitative, associative, inductive strategy and continuous simultaneous coding were used to interpret the data of 19 semi-structured interviews.

Results

We identified an underlying psychological factor “perceived freedom of choice” which explains the gross differences in impact, leading to a definition of two main types of caregivers. Depending on how people perceive freedom of choice to provide care, the consequences of caregiving can be characterized as a process of gain (type 1) or loss (type 2). Four influential factors deepen the impact of caregiving for the type 2 caregivers, and two subtypes are identified for this category. Consequences of caregiving are most readily seen in a deteriorating quality of the relationship with the care recipient and in the psychosocial well-being of the caregiver.

Conclusions

The concept of freedom of choice adds to our understanding of the differences and explains the variation in impact on the caregivers’ life. The type 1 caregiver generally experiences gain whereas type 2 generally experiences loss, which puts the latter group typically at risk of becoming overloaded. Whether people perceive that they have freedom of choice in caregiving is an important consideration in evaluating the type of intervention needed to support caregivers.

【 授权许可】

   
2013 Zegwaard et al.; licensee BioMed Central Ltd.

【 参考文献 】

• [1]Rose LE, Mallison RK, Walton-Moss B: A grounded theory of families responding to mental illness. West J Nurs Res 2002, 24:516-536.
• [2]Muhlbauer SA: Navigating the storm of mental illness: phases in the family’s journey. Qual Health Res 2002, 12:1076-1092.
• [3]Biegel DE, Schulz R: Caregiving and caregiver interventions in aging and mental illness. Fam Relat 1999, 48:345-354.
• [4]Montgomery RJV, Gonyea JG, Hooyman NR: Caregiving and the experience of subjective and objective burden. Fam Relat 1985, 34:19-26.
• [5]Magliano L, Tosini P, Guarneri M, Marasco C, Catapano F: Burden on the family of care-receivers with obsessive-compulsive disorder: a pilot study. Eur Psychiatry 1996, 11:192-197.
• [6]Sisk RJ: Caregiver burden and health promotion. Int J Nurs Stud 2000, 37:37-43.
• [7]Ohaeri JU: The burden of caregiving in families with a mental illness: a review of 2002. Curr Opin Psychiatry 2003, 16:457-465.
• [8]Pearlin LI, Lieberman MA, Menaghan EG, Mullan JT: The stress process. J Health Soc Behav 1981, 22:337-356.
• [9]Lazarus RS, Folkman S: Stress, Appraisal and Coping. New York: Springer Publishing Company; 1984.
• [10]Chappell NL, Reid R: Burden and well-being among caregivers: examining the distinction. Gerontologist 2002, 42:772-780.
• [11]Zegwaard MI, Aartsen MJ, Grypdonck MHF, Cuijpers P: Perceived burden of informal caregivers of elderly persons with a severe functional psychiatric syndrome and concomitant problematic behaviour: A conceptual model. J Clin Nurs 2011, 20:2233-2258.
• [12]Thompson EH, Doll W: The burden of families coping with the mentally Ill: an invisible crisis. Fam Relat 1982, 31:379-388.
• [13]Noh S, Turner RJ: Living with psychiatric patients: implications for the mental health of family members. Soc Sci Med 1987, 25:263-271.
• [14]Solomon P, Draine J: Examination of grief among family members of individuals with serious and persistent mental illness. Psychiatr Q 1996, 67:221-234.
• [15]Mannion E: Resilience and burden in spouses of people with mental illness. Psychiatr Rehabil J 1996, 20:13-23.
• [16]Stroup TS, Morrissey JP, Ellis AR, Blank M: Correlates of family burden under medicaid managed mental health care. Adm Policy Ment Health 2002, 29:117-128.
• [17]Hunt CK: Concepts in care giving research. J Nurs Scholarsh 2003, 35:27-32.
• [18]Pinquart M, Sörensen S: Associations off stressors and uplifts of care giving with caregiver burden and depressive mood: a meta-analysis. J Gerontol Psychol Sci 2003, 2:112-128.
• [19]Angermeyer MC, Matthias C, Reinhold K, Wilms HU, Wittmund B: Quality of life of spouses of mentally ill people. Int J Soc Psychiatry 2006, 52:278-285.
• [20]Rose LE, Mallinson R, Gerson LD: Mastery, Burden and Areas of Concern among Family Caregivers of Mentally Ill Care-receivers. Arch Psychiatr Nurs 2006, 20:41-51.
• [21]Jeon Y, Madjar I: Caring for a family member with chronic mental illness. Qual Health Res 1998, 8:694-706.
• [22]Marsh DT, Lefley HP, Evans-Rhodes D, Ansell VI, Doerzbacher B, LaBarbera L, Paluzzi JE: The family experience of mental illness: evidence for resilience. Psychiatr Rehabil J 1996, 20:3-12.
• [23]Karp D, Tanarugsachock V: Mental illness, caregiving and emotion management. Qual Health Res 2000, 10:6-25.
• [24]Jones SL, David W: Families and serious mental illness: working with loss and ambivalence. Br J Soc Work 2004, 34:961-979.
• [25]Morse JM, Barrett M, Mayan M, Olson K, Spiers J: Verification strategies for establishing reliability and validity in qualitative research. Int J Qual Meth 2002., 1(2)
• [26]Annells M: Triangulation of qualitative approaches: hermeneutical phenomenology and grounded theory. J Adv Nurs 2006, 56:55-61.
• [27]Wester FPJ: Strategieën voor kwalitatief onderzoek. [Strategies for Qualitative Research]. 1st edition. Bussum: Coutinho; 1995.
• [28]Boeije H: Analysing qualitative research. Thinking and acting. The Hague: Boom publishers; 2006.
• [29]Schötzel-Dorenbos CJM, Meeusen EJ, Olde Rikkert MGM: Integrating unmet needs into dementia health-related quality of life research and care: Introduction of the Hierarchy Model of Needs in Dementia. Aging Ment Health 2010, 14:113-119.
• [30]Vernooij-Dassen M, Leatherman S, Olde Rikkert MGM: Quality of care in frail older people: the fragile balance between receiving and giving. Br Med J 2011, 342:d403.
• [31]Wynaden D: The experience of caring for a person with a mental illness: a grounded theory study. Int J Ment Health Nurs 2007, 16:381-389.
• [32]de Vugt M: Influence of caregiver management strategies on care-receiver behavior in dementia. Int J Geriatr Psychiatry 2004, 19:85-92.
• [33]Kooiker S, de Boer A: Portraits of informal carers. The Hague: The Netherlands Institute for Social Research; 2008.
• [34]Albee GW: A competency model must replace a defect model. In Readings in primary prevention of psychopathology: Basic concepts. Edited by Joffe JM, Albee GW, Kelly LD. Hanover NH: University Press of New England; 1984:228-246.
• [35]Kanuha VK: ‘Being native versus going native’: conducting social work research as an Insider. Soc Work 2005, 5:439-447.