Hostname: page-component-586b7cd67f-dsjbd Total loading time: 0 Render date: 2024-11-24T11:02:48.072Z Has data issue: false hasContentIssue false

Burden, attitudes and social support in the families of patients with long-term physical diseases

Published online by Cambridge University Press:  11 October 2011

Lorenza Magliano*
Affiliation:
Dipartimento di Psichiatria. Università di Napoli SUN, Napoli
Andrea Fiorillo
Affiliation:
Dipartimento di Psichiatria. Università di Napoli SUN, Napoli
Corrado De Rosa
Affiliation:
Dipartimento di Psichiatria. Università di Napoli SUN, Napoli
Claudio Malangone
Affiliation:
Dipartimento di Psichiatria. Università di Napoli SUN, Napoli
Mario Maj
Affiliation:
Dipartimento di Psichiatria. Università di Napoli SUN, Napoli
Gruppo Di Lavoro
Affiliation:
Gruppo di Lavoro: A. Alelti (Cremona), M. Arioli (Abbiategrasso, MI), L. Augello (Fondi, LT), S.L. Benzi (Tortona, AL), M. Bertelli (Firenze), G. Boine (Settimo Torinese. TO), M. Calvari (Lanusei, Nil), C. Cangiano (Gragnano, NA), S. Cesano (Torino), R. Ciavarella (Foggia), M. Dell'Anna (Ferentino, FR), G. Farsaci (Pace del Mela, ME), A. Figura (La Spezia), E. Gulisano (Catania), L. Mandelli (Milano), S. Marini (Fermo, AP), A. Merenda (Palermo), C. Mezzaluna (Ascoli Piceno), E. Mori (Livorno), M. Poppi (Portomaggiore, FE), L. Ragonese (Castel del Piano, GR), B. Saccottelli (Barletta, BA), O. Salemi (Como), A. Sambuco (Squinzano, LE), A. Trisolini (Vetralla, VT), N. Trudii (Oristano), M. Virgili (Bonnio, SO), R. Zaralti (Roma), L. Zen (Angri, SA)
*
Address for correspondence: Professor L. Magliano. Istituto di Psichiatria. Università di Napoli SUN. Largo Madonna delle Grazie, Fax +39-81-5666523 E-mail [email protected]

Summary

Aims – To describe in a sample of 646 relatives of patients with physical long-term illnesses: a) the relatives' burden of care; b) the relatives' attitudes towards the patients; c) the social and professional support received by the families. Methods – The study has been carried out in 30 Italian geographic areas randomly selected taking into account geographic location and population density. The sample has been consecutively recruited in 139 specialised units for the treatment of chronic heart, brain, diabetes, kidney, and lung diseases. Family burden was evaluated in relation to: a) family's socio-demographic variables and patients' clinical variables; b) relatives' attitudes toward the patient; c) social and professional support; d) geographic area and population density. Outcome measuresFamily Problems Questionnaire, physical illness version (QPF-O) and Social Network Questionnaire (QRS). Results – The consequences of caregiving most frequently reported were constraints in social and recreational activities, and feelings of loss. Burden was more marked in relatives of patients with higher physical disabilities, with neurological illnesses, and in relatives with lower support by their social network. Conclusions – These data highlight the need to provide psychological and practical support to caregivers of patients with long-term physical diseases on the basis of the evaluation of their needs for care.

Declaration of Interest: none of the five authors has had any interest or received any form of support, including that from drug companies and honoraria for lectures and consultancies, potentially in conflict with this scientific work, in the last 2 years.

Type
Original Articles
Copyright
Copyright © Cambridge University Press 2004

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Bibliografia

Barrowclough, C., Tarrier, N. & Johnstone, M. (1996). Distress, expressed emotions, and attributions in relatives of schizophrenia patients. Schizophrenia Bulletin 22, 691702.CrossRefGoogle ScholarPubMed
Belasco, A.G. & Sesso, R. (2002). Burden and quality of life of caregivers for haemodialysis patients. American Journal of Kidney Disease 39(4). 805812.CrossRefGoogle Scholar
Bobak, N., Blane, D. & Marmott, M. (2000). Social determinants of health: their relevance in the European contest. Retrieved August 30, 2004, from http://www.rhpeo.org/ijhp-articles/e-proceedings/verona/2/index.htmGoogle Scholar
Brodaty, H., Green, A. & Koschera, A. (2003). Meta-analysis of psycho-social interventions for caregivers of people with dementia. Journal of American Geriatric Society 51, 18.CrossRefGoogle Scholar
Carter, J.H. & Nutt, J.G. (1998). Family caregiving. A neglected and hidden part of health care delivery. Neurology 51, 12451246.CrossRefGoogle ScholarPubMed
Chappel, N.L. & Reid, R.C. (2002). Burden and well-being among care-givers: examining the distinction. Gerontologist 42 (6), 772780.CrossRefGoogle Scholar
Christensen, A.J.. Wiebe, J.S.. Smith, T.W. & Turner, C.W. (1994). Predictors of survival among hemodyalisis patients: effect of perceived family support. Health Psychology 13, 521525.CrossRefGoogle Scholar
Coen, R.F., O'Boyle, C.A., Coakley, D. & Lawlor, B.A. (1999a). Dementia carer education and patient behaviour disturbance. International Journal of Geriatric Psychiatry 14,302306.3.0.CO;2-1>CrossRefGoogle ScholarPubMed
Coen, R.F., O'Boyle, C.A., Swanwick, G.R.J. & Coakley, D. (1999b). Measuring the impact on relatives of caring for people with Alzheimer's disease: quality of life, burden and well-being. Psychology and Health 14, 253261.CrossRefGoogle Scholar
Connell, C.M., Janevic, M.R. & Gallant, M.P. (2001). The costs of caring: impact of dementia on family caregivers. Journal of Geriatric Psychiatry and Neurology 14(4), 179187.CrossRefGoogle ScholarPubMed
Dennis, M., O'Rourke, S., Lewis, S., Sharpe, M. & Warlow, C. (1998). A quantitative study of emotional outcome of people caring for stroke survivors. Stroke 29 (9), 18671872.CrossRefGoogle ScholarPubMed
Donaldson, C. & Burns, A. (1999). Burden of Alzheimer's disease: hel-ping the patient and caregiver. Journal of Geriatric Psychiatry and Neurology 12(1), 2128.CrossRefGoogle ScholarPubMed
Dunkin, J.J. & Handerson-Halley, C. (1998). Dementia caregiver burden. A review of the literature and guidelines for assessment and intervention. Neurology 51, Suppl. 1. S53–S67.CrossRefGoogle ScholarPubMed
Hagedoorn, M., Buunk, B.P., Kuijer, R.G., Wobbes, T. & Sanderman, R. (2000). Couples dealing with cancer: role and gender differences regarding psychological distress and quality of life. Psycho-Oncology 9(3). 232242.3.0.CO;2-J>CrossRefGoogle ScholarPubMed
Harrison, C.A., Dadds, M.R. & Smith, G. (1998). Family caregivers' criticism of patients with schizophrenia. Psychiatric Sendees 49. 918924.Google ScholarPubMed
Hatched, L., Friend, R., Symister, P. & Wadhwa, N. (1997). Interpersonal expectations, social supports and adjustmenl to chronic illness. Journal of Personal and Social Psychology 73. 560573.CrossRefGoogle Scholar
Hauser, S.T., Jacobson, A.M., Lavori, P., Herskowitz, R.D., Milley, J.E. & Wertilieb, D. (1990). Adherence among children and adolescents with insulin-dependent diabetes mellitus over a four-year longitudinal follow-up: II. Immediate and long-term linkages with the family milieu. Journal of Paediatric Psychology 15. 527542.CrossRefGoogle Scholar
Hodgkinson, R. & Lester, H. (2002). Stresses and coping strategies of mother living with a child cyst fibrosis: implications for nursing professionals. Journal of Advanced Nursing 39 (4).377383.CrossRefGoogle Scholar
Kinsella, G., Cooper, B., Picton, C. & Murthag, D. (1998). A review of the measurement of caregiver and family burden in palliative care. Journal of Palliative Care 14. 3745.CrossRefGoogle ScholarPubMed
Lazarus, R.S. & Folkman, S. (1984). Stress, Appraisal and Coping. Springer-Verlag: Berlin.Google Scholar
Leinonen, E., Korpisammal, L., Pulkkinen, L.M. & Pakuri, T. (2002). The comparison of burden between caregiving spouses of depressive and demented patients. International Journal of Geriatric Psychiatry 16(4), 387393.CrossRefGoogle Scholar
Magliano, L., Fadden, G., Madianos, M., Caldas de Almeida, J.M., Held, T., Guarneri, M., Marasco, C., Tosini, P. & Maj, M. (1998). Burden on the families of patients with schizophrenia: results of the BIOMED I study. Social Psychiatry and Psychiatric Epidemiology, 33,405412.CrossRefGoogle ScholarPubMed
Magliano, L., Marasco, C.Fiorillo, A., Malangone, C., Guarneri, M., Maj, M. & Working Group (2002). The impact of professional and social network support on the burden of families of patients with schizophrenia in Italy. Ada Psychiatrica Scandinavica 106, 19.CrossRefGoogle ScholarPubMed
Morosini, P.L., Roncone, R., Veltro, F., Palomba, U. & Casacchia, M. (1991). Routine assessment tool in psychiatry: the questionnaire of family attitudes and burden. Italian Journal of Behavioural Sciences 1,95101.Google Scholar
Murray, C.J. & Lopez, A.D. (2000). Progress and directions in refining the global burden of disease approach: a response to Williams. Health Economics 9(1), 6982.3.0.CO;2-I>CrossRefGoogle ScholarPubMed
Ohaeri, J.U. (2003). The burden of caregiving in families with a mental illness: a review of 2002. Current Opinion in Psychiatry 16, 457465.CrossRefGoogle Scholar
Rossi, Ferrario S., Zotti, A. M. & Donner, C.F. (2001). Caregiver strain associated with tracheostomy in chronic respiratory failure. Chest 119(5). 14981502.CrossRefGoogle Scholar
Rossi, Ferrario S., Zotti, A. M., Baroni, A., Cavagnino, A. & Fornara, R. (2002). Emotional reactions and pratical problems of caregivers of hemodialysed patients. Journal of Nephrology 15, 5460.Google Scholar
Rossi, Ferrario S., Zotti, A.M., Ippoliti, M. & Zotti, P. (2003). Caregiving-related needs analysis: a proposed model reflecting current research and socio-political developments. Health and Social Care in the Community 11. 103110.CrossRefGoogle Scholar
Saunders, M.M. (2003). Family caregivers need support with heart failure patients. Holistic Nursing Practice 17(3), 136142.CrossRefGoogle ScholarPubMed
Schneider, J., Murray, J. & Mann, A. (1999). EUROCARE: a cross-national study of co-resident spouse carers for people with Alzheimer's disease: I. Factors associated with carer burden. International Journal of Geriatric Psychiatry 14(8), 651661.3.0.CO;2-B>CrossRefGoogle ScholarPubMed
Schwartz, L.S., Coulson, L.R., Toovj, D., Ljons, J.S. & Flaherty, J.A. (1991). A biopsychosocial treatment approach to the management of diabetes mellitus. General Hospital Psychiatry 13, 1926.CrossRefGoogle Scholar
Smith, E.K.M., McDonald, S.J., Curtis, J.R. & Wardner, H.E. (1969). Haemodialysis in the home: problems and frustration. Lancet, 1, 614617.CrossRefGoogle Scholar
Spruytte, N., Van Audenhove, C., Lammertyn, F. & Storms, G. (2002). The quality of caregiving relationship in informal care for older adults with dementia and chronic patients. Psychology and Psychotherapy: Research and Practice 75, 295311.CrossRefGoogle Scholar
Trief, P.M., Himes, C.L., Orendorff, R. & Weinstock, R. (2001). The marital relationship and psychosocial adaptation and glycemic control of individuals with diabetes. Diabetes Care 24. 13841389.CrossRefGoogle ScholarPubMed
Wearden, A.J., Tarrier, N., Barrowclough, C.Zastowny, T. & Armstrong, A. (2002). A review of expressed emotion research in health care. Clinical Psychology Review. 20 (5). 633666.CrossRefGoogle Scholar