Caring for relatives with serious mental illness: the development of the Experience of Caregiving Inventory
Abstract
The aim of this study was to develop a practical, comprehensive, and valid self-report measure of the experience of caring for a relative with a serious mental illness. The notion of caregiver "burden' was rejected; instead caregiving was conceptualised within a 'stress-appraisal-coping' framework. A 66-item version of the Experience of Caregiving Inventory (ECI) was derived from analyses of responses from 626 caregivers, and then tested on an independent sample of 63 relatives of patients with schizophrenia recently in acute care. The extent to which the ECI complied with the stress-coping model was tested, especially the degree to which it, in association with coping, predicted psychological morbidity in carers. Ten sub-scales with good internal consistency resulted from our analyses, eight negative (difficult behaviours; negative symptoms; stigma; problems with services; effects on the family; the need to provide backup; dependency; loss) and two positive (rewarding personal experiences; good aspects of the relationship with the patient). The ECI, in conjunction with coping style, predicted a large proportion of the variance in the General Health Questionnaire (GHQ). We concluded that the ECI taps salient dimensions of caregiving distinct from, although linked with, coping and psychological morbidity. It has potential as a useful outcome measure for interventions aimed at promoting caregiver well-being.
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The ten scales of the Experience of Caregiving Inventory showed satisfactory reliability with Cronbach's α ranging from 0.74 to 0.91.
“The ten scales showed satisfactory reliability with Cronbach’s α ranging from 0.74 to 0.91.”
The internal reliability coefficients of the caregivers were 0.81 for the ECI-positive and 0.92 for the ECI-negative.
“The internal reliability coefficients of the caregivers were 0.81 for the ECI-positive and 0.92 for the ECI-negative.”
Cites
Development and validation of brief measures of positive and negative affect: The PANAS scales.
Watson, D., Clark, L. A., & Tellegen, A. (1988) · Journal of Personality and Social Psychology · doi:10.1037/0022-3514.54.6.1063 · Cited by 32,433 · see citing works
Eysenck, H. J. (1985) · Behaviour Research and Therapy · doi:10.1016/0005-7967(85)90087-7 · Cited by 32,026 · see citing works
“Stress: appraisal and coping,”
Folkman, S. (2013) · Encyclopedia of Behavioral Medicine · doi:10.1007/978-1-4419-1005-9_215 · Cited by 27,833 · see citing works
Pearlin, L. I., & Schooler, C. (1978) · Journal of Health and Social Behavior · doi:10.2307/2136319 · Cited by 7,791 · cited 1× · see citing works
“Mastery (Pearlin and Schooler 1978) measures the degree to which a subject is confident in his ability to help himself and to manage both expected and unexpected circumstances, e.”
BackgroundPearlin, L. I., & Schooler, C. (1978) · PubMed · Cited by 6,764 · see citing works
A scaled version of the General Health Questionnaire
Goldberg, D. P., & Hillier, V. F. (1979) · Psychological Medicine · doi:10.1017/s0033291700021644 · Cited by 5,494 · see citing works
Folkman, S., & Lazarus, R. S. (1985) · Journal of Personality and Social Psychology · doi:10.1037//0022-3514.48.1.150 · Cited by 4,845 · see citing works
Folkman, S., & Lazarus, R. S. (1985) · Journal of Personality and Social Psychology · doi:10.1037/0022-3514.48.1.150 · Cited by 4,845 · see citing works
Brugha, T. S., Bebbington, P., Tennant, C., & Hurry, J. (1985) · Psychological Medicine · doi:10.1017/s003329170002105x · Cited by 1,108 · see citing works
The Schizophrenic Patient in the Community and His Effect On the Household
Hoenig, J., & Hamilton, M. W. (1966) · International Journal of Social Psychiatry · doi:10.1177/002076406601200301 · Cited by 466 · see citing works
Social support: Conceptualization, measurement, and implications for mental health.
Turner, R. J., Frankel, B. G., & Levin, D. (1983) · Cited by 438 · see citing works
Fadden, G., Bebbington, P., & Kuipers, L. (1987) · The British Journal of Psychiatry · doi:10.1192/bjp.150.3.285 · Cited by 419 · see citing works
The Life Skills Profile: A Measure Assessing Function and Disability in Schizophrenia
Rosen, A., Hadži-Pavlović, D., & Parker, G. B. (1989) · Schizophrenia Bulletin · doi:10.1093/schbul/15.2.325 · Cited by 416 · see citing works
The Burden on the Family of a Psychiatric Patient: Development of an Interview Schedule
Pai, S., & Kapur, R. L. (1981) · British Journal of Psychiatry · doi:10.1192/bjp.138.4.332 · Cited by 407 · see citing works
Raw versus relative scores in the assessment of coping strategies
VITALIANO, P. P., Maiuro, R. D., Russo, J. E., & Becker, J. (1987) · Journal of Behavioral Medicine · doi:10.1007/bf00845124 · Cited by 370 · see citing works
Measuring the burden of psychiatric illness on the family: an evaluation of some rating scales
Platt, S. D. (1985) · Psychological Medicine · doi:10.1017/s0033291700023680 · Cited by 301 · see citing works
Objective and subjective dimensions of family burden
Schene, A. H. (1990) · Social Psychiatry and Psychiatric Epidemiology · doi:10.1007/bf00782883 · Cited by 209 · see citing works
Instruments measuring family or caregiver burden in severe mental illness
Schene, A. H., Tessler, R. C., & Gamache, G. (1994) · Social Psychiatry and Psychiatric Epidemiology · doi:10.1007/bf00796381 · Cited by 202 · see citing works
Living with psychiatric patients: Implications for the mental health of family members
Noh, S., & Turner, R. J. (1987) · Social Science & Medicine · doi:10.1016/0277-9536(87)90229-2 · Cited by 184 · see citing works
Platt, S. D., Weyman, A., Hirsch, S. R., & Hewett, S. (1980) · Social Psychiatry and Psychiatric Epidemiology · doi:10.1007/bf00577960 · Cited by 183 · see citing works
Psychological costs of schizophrenia to the family
Hatfield, A. B. (1978) · Social Work · doi:10.1093/sw/23.5.355 · Cited by 181 · see citing works
Burdens and gratifications of caregiving: Appraisal of parental care of adults with schizophrenia.
Bulger, M. W., Wandersman, A. H., & Goldman, C. R. (1993) · American Journal of Orthopsychiatry · doi:10.1037/h0079437 · Cited by 128 · see citing works
Expressed emotion research in schizophrenia: theoretical and clinical implications
Kuipers, L., & Bebbington, P. (1988) · Psychological Medicine · doi:10.1017/s0033291700009831 · Cited by 128 · see citing works
Psychosocial factors in Parkinson's disease
MacCarthy, B., & Brown, R. G. (1989) · British Journal of Clinical Psychology · doi:10.1111/j.2044-8260.1989.tb00810.x · Cited by 126 · see citing works
Problems and Coping Strategies of Elderly Spouse Caregivers
Barusch, A. S. (1988) · The Gerontologist · doi:10.1093/geront/28.5.677 · Cited by 114 · see citing works
Creer, C., Sturt, E., & Wykes, T. (1982) · Psychological Medicine Monograph Supplement · doi:10.1017/s0264180100001624 · Cited by 26 · see citing works
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Cited by
Sorted by citations
Yesufu-Udechuku, A., Harrison, B., Mayo-Wilson, E., Young, N., Woodhams, P., Shiers, D., Kuipers, E., & Kendall, T. (2015) · British Journal of Psychiatry · doi:10.1192/bjp.bp.114.147561 · Cited by 294 · see citing works
Garety, P. A., Fowler, D. G., Freeman, D., Bebbington, P., Dunn, G., & Kuipers, E. (2008) · British Journal of Psychiatry · doi:10.1192/bjp.bp.107.043570 · Cited by 296 · see citing works
Burden of care and general health in families of patients with schizophrenia
Gutiérrez-Maldonado, J., Caqueo-Urízar, A., & Kavanagh, D. J. (2005) · Social Psychiatry and Psychiatric Epidemiology · doi:10.1007/s00127-005-0963-5 · Cited by 256 · see citing works
Sin, J., Gillard, S., Spain, D., Cornelius, V., Chen, T., & Henderson, C. (2017) · Clinical Psychology Review · doi:10.1016/j.cpr.2017.05.002 · Cited by 192 · see citing works
Expressed emotion at first-episode psychosis: investigating a carer appraisal model
Raune, D., Kuipers, E., & Bebbington, P. E. (2004) · British Journal of Psychiatry · doi:10.1192/bjp.184.4.321 · Cited by 160 · see citing works
Shiraishi, N., & Reilly, J. (2019) · Social Psychiatry and Psychiatric Epidemiology · doi:10.1007/s00127-018-1617-8 · Cited by 142 · see citing works
Mental and physical illness in caregivers: Results from an English national survey sample
Smith, L., Onwumere, J., Craig, T., McManus, S., Bebbington, P., & Kuipers, E. (2014) · British Journal of Psychiatry · doi:10.1192/bjp.bp.112.125369 · Cited by 114 · see citing works
Expressed emotion as an adaptation to loss: Prospective study in first-episode psychosis
Patterson, P., Birchwood, M., & Cochrane, R. (2005) · British Journal of Psychiatry · doi:10.1192/bjp.187.48.s59 · Cited by 106 · see citing works
Influence of carer expressed emotion and affect on relapse in non-affective psychosis
Kuipers, E., Bebbington, P., Dunn, G., Fowler, D., Freeman, D., Watson, P., Hardy, A., & Garety, P. (2006) · British Journal of Psychiatry · doi:10.1192/bjp.bp.104.007294 · Cited by 102 · see citing works
The role of family therapy in the management of schizophrenia: challenges and solutions
Rus-Calafell, M., Caqueo-Urízar, A., Urzúa, A., Escudero, J., & Gutiérrez-Maldonado, J. (2015) · Neuropsychiatric Disease and Treatment · doi:10.2147/ndt.s51331 · Cited by 89 · see citing works
“(c) Care givers’ experience: This includes the establishment of a good relationship with the patient and positive personal outcomes.(45,47) Despite the relative clarity that seems to exist regarding the impact of schizophrenia on family members, it is necessary to consider the customs and traditions of each family gro…”
Szmukler, G., Kuipers, E., Joyce, J., Harris, T., Leese, M., Maphosa, W., & Staples, E. (2003) · Social Psychiatry and Psychiatric Epidemiology · doi:10.1007/s00127-003-0652-1 · Cited by 88 · see citing works
Self-citationCaregiving and Illness Beliefs in the Course of Psychotic Illness
Onwumere, J., Kuipers, E., Bebbington, P., Dunn, G., Fowler, D., Freeman, D., Watson, P., & Garety, P. (2008) · The Canadian Journal of Psychiatry · doi:10.1177/070674370805300711 · Cited by 65 · see citing works
Boydell, J., Onwumere, J., Dutta, R., Bhavsar, V., Hill, N., Morgan, C., Dazzan, P., Morgan, K., Pararajan, M., Kuipers, E., et al. (2014) · Early Intervention in Psychiatry · doi:10.1111/eip.12041 · Cited by 66 · see citing works
Sin, J., Henderson, C., Woodham, L. A., Sesé Hernández, A., & Gillard, S. (2019) · Journal of Medical Internet Research · doi:10.2196/14374 · Cited by 52 · see citing works
Evaluating a model of caregiving for people with psychosis
Joyce, J., Leese, M., Kuipers, E., Szmukler, G., Harris, T., & Staples, E. (2003) · Social Psychiatry and Psychiatric Epidemiology · doi:10.1007/s00127-003-0618-3 · Cited by 60 · see citing works
Self-citationGleeson, J., Lederman, R., Koval, P., Wadley, G., Bendall, S., Cotton, S., Herrman, H., Crisp, K., & Alvarez-Jimenez, M. (2017) · Frontiers in Psychology · doi:10.3389/fpsyg.2017.00485 · Cited by 50 · see citing works
Self-citationBarton, K., & Jackson, C. (2008) · Australian & New Zealand Journal of Psychiatry · doi:10.1080/00048670802203434 · Cited by 47 · see citing works
Onwumere, J., Kuipers, E., Bebbington, P., Dunn, G., Freeman, D., Fowler, D., & Garety, P. (2009) · Journal of Nervous & Mental Disease · doi:10.1097/nmd.0b013e3181960e57 · Cited by 40 · see citing works
A Pilot Study of an Acceptance-Based Separated Family Treatment for Adolescent Anorexia Nervosa
Merwin, R. M., Zucker, N. L., & Timko, C. A. (2013) · Cognitive and Behavioral Practice · doi:10.1016/j.cbpra.2012.11.001 · Cited by 36 · see citing works
Honary, M., Fisher, N. R., McNaney, R., & Lobban, F. (2018) · JMIR Mental Health · doi:10.2196/11473 · Cited by 28 · see citing works
Gleeson, J., Lederman, R., Herrman, H., Koval, P., Eleftheriadis, D., Bendall, S., Cotton, S. M., & Alvarez-Jimenez, M. (2017) · Trials · doi:10.1186/s13063-016-1775-5 · Cited by 33 · see citing works
Self-citationPsychological Flexibility as a Buffer against Caregiver Distress in Families with Psychosis
Jansen, J. E., Haahr, U. H., Lyse, H.-G., Pedersen, M. B., Trauelsen, A. M., & Simonsen, E. (2017) · Frontiers in Psychology · doi:10.3389/fpsyg.2017.01625 · Cited by 32 · see citing works
Understanding the experience of “burnout” in first-episode psychosis carers
Onwumere, J., Sirykaite, S., Schulz, J., Man, E., James, G., Afsharzadegan, R., Khan, S., Harvey, R., Souray, J., & Raune, D. (2018) · Comprehensive Psychiatry · doi:10.1016/j.comppsych.2018.02.003 · Cited by 30 · see citing works
Tomlinson, E., Onwumere, J., & Kuipers, E. (2014) · Early Intervention in Psychiatry · doi:10.1111/eip.12040 · Cited by 29 · see citing works
Carers' hope, wellbeing and attitudes regarding recovery
Marshall, S., Deane, F., Crowe, T., White, A., & Kavanagh, D. (2013) · Community Mental Health Journal · doi:10.1007/s10597-012-9568-0 · Cited by 24 · see citing works
Anastasiadou, D., Lupiañez-Villanueva, F., Faulí, C., Arcal Cunillera, J., & Serrano-Troncoso, E. (2018) · BMC Psychiatry · doi:10.1186/s12888-018-1664-4 · Cited by 16 · see citing works
Wildman, E. K., MacManus, D., Harvey, J., Kuipers, E., & Onwumere, J. (2023) · Acta Psychiatrica Scandinavica · doi:10.1111/acps.13516 · Cited by 18 · see citing works
Zisman-Ilani, Y., Hasson-Ohayon, I., Levy-Frank, I., Tuval-Mashiach, R., & Roe, D. (2017) · Transcultural Psychiatry · doi:10.1177/1363461517703022 · Cited by 16 · see citing works
- Authors
- Szmukler, G. I., Burgess, P., Herrman, H., Bloch, S., Benson, A., & Colusa, S.
- Affiliations
- Bethlem Royal Hospital (GB)
- The University of Melbourne (AU)
- Venue
- Social Psychiatry and Psychiatric Epidemiology
- Published
- 1996
- Volume
- 31
- Issue
- 3-4
- Pages
- 137-148
- ISSN
- 0933-7954 (ISSN-L)
- 1433-9285
- OpenAlex
- W2019547221
- Cited by
- 453
- References
- 26
- Citations by year
- 2026: 13 · 2025: 9 · 2024: 15 · 2023: 11 · 2022: 13 · 2021: 12 · 2020: 20 · 2019: 14 · 2018: 23 · 2017: 21 · 2016: 24 · 2015: 24 · 2014: 26 · 2013: 29 · 2012: 21
- FWCI
- 6.31
- Type
- journal article
- Language
- en
- Open access
- closed
- Licence
- www.springer.com/tdm (tdm)
- Locations
- Social Psychiatry and Psychiatric Epidemiology (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Social Sciences › Psychology › Clinical Psychology › Family Caregiving in Mental Illness
- Social Sciences › Sociology and Political Science › Family Support in Illness
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Keywords
- caregiver experiences, schizophrenia, coping styles, caregiver burden, stigma, family caregiving, caregiver well-being, outcome measure development
- MeSH terms
- Adaptation, Psychological, Adult, Aged, Mental Disorders, Family Health, Female, Humans, Male, Middle Aged, Surveys and Questionnaires, Sex Factors, Stress, Psychological, Caregivers
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