Caring for patients with Huntington disease - a survey of caregivers’ experiences and views

• Autorzy: Domaradzki J.
• Języki publikacji: EN

Abstrakty

EN

Introduction. Despite the growing interest in the consequences of caring for patients with Huntington disease (pHD), little is known about the family caregivers of such patients in Poland. Identification of their needs can improve caregivers’ wellbeing, the quality of care and condition of pHD. The aim of this study was to understand the social functioning of family caregivers of pHD and their perception of the caregiving role. Materials and methods. Data was collected from 55 family caregivers of pHD. A structured questionnaire was used consisting of 86 questions subsumed into five domains: ‘Problems’ and ‘Feelings related to caregiving’, ‘Attitude toward caregiving’, ‘Satisfaction with life’ and ‘Perception of healthcare services’. Correlations between the different scales and other characteristics were measured as potential predictors of the burden. Non-parametric statistical methods were used in the analysis. Results. Most respondents experienced a high (50.9%) or moderate (30.95%) feeling of burden. Although 70.9% of caregivers perceived caregiving positively, for many it was a source of negative feelings. Only 10.9% of respondents declared that caregiving decreased their QoL. Carers’ perception of caregiving was mostly influenced by their negative experiences with the healthcare system. Respondents’ domicile, religious practices, age, income, marital status, time of diagnosis and of caregiving, patient’s age and stage of disease also influenced their experiences. Conclusions. Health professionals and policy planners should focus on monitoring caregivers’ health, identifying their needs, sources of distress, and supporting caregivers’ coping strategies. They should also be better educated about the clinical and practical aspects of HD.

Słowa kluczowe

EN

carer; patient; human disease; neurodegenerative disease; Huntington's disease; brain disease; behavioural disturbance; experience

• Wydawca: -
• Czasopismo: Journal of Pre-Clinical and Clinical Research
• Rocznik: 2015
• Tom: 09
• Numer: 2
• Opis fizyczny: p.133-139,ref.

Twórcy

autor

Domaradzki J.

• Laboratory of Health Sociology and Social Pathology, Chair of Social Sciences, Karol Marcinkowski University of Medical Sciences, 79 Dabrowskiego St., 60-529 Poznan, Poland

Bibliografia

• 1.Dubas-Ślemp H, Tylec A, Michałowska-Marmurowska H, Spychalska K. Choroba Huntingtona zaburzeniem neurologicznym czy psychiatrycznym? Opis przypadku. Psychiatr Pol. 2012; 46(5): 915–922 (in Polish).
• 2.Williams JK, Skirton H, Barnette JJ, Paulsen JS. Family carer personal concerns in Huntington disease. J Adv Nurs. 2012; 68(1): 137–146.
• 3.Soltysiak B, Gardiner P, Skirton H. Exploring supportive care for individuals affected by Huntington disease and their family caregivers in a community setting. Clin Nurs. 2008; 17(7B): 226–234.
• 4.Roscoe LA, Corsentino E, Watkins S, McCall M, Sanchez-Ramos J. Well-being of family caregivers of persons with late-stage Huntington’s disease: lessons in stress and coping. Health Commun. 2009; 24(3): 239–248.
• 5.Etchegary H. Healthcare experiences of families affected by Huntington disease: need for improved care. Chronic Illn. 2011; 7(3): 225–238.
• 6.Williams JK, Skirton H, Paulsen JS, Tripp-Reimer T, Jarmon L, McGonigal KM, et al. The emotional experiences of family carers in Huntington disease. J Adv Nurs. 2009; 65(4): 789–98.
• 7.Dawson S, Kristjanson LJ, Toye CM, Flett P. Living with Huntington’s disease: need for supportive care. Nurs Health Sci. 2004; 6(2): 123–130.
• 8.Aubeeluck A. Caring for the carers: quality of life in Huntington’s disease. Br J Nurs. 2005; 14(8): 452–4.
• 9.Aubeeluck A, Buchanan H, Strupple EJ. ‘All the burden on all the carers’: exploring quality of life with family caregivers of Huntington’s disease patients.Qual. Life Res. 2012; 21(8):1425–35.
• 10.Pickett T, Altmaier E, Paulsen JS, Caregiver burden in Huntington’s disease. Rehabil Psychol. 2007; 52(3): 311–8.
• 11.Ready RE, Mathews M, Leserman A and Paulsen JS. Patient and caregiver quality of life in Huntington’s disease. Mov Disord. 2008; 23(5): 721–6.
• 12.Banaszkiewicz K, Sitek EJ, Rudzińska M, Sołtan W, Sławek J, Szczudlik A. Huntington’s disease from the patient, caregiver and physician’s perspectives: three sides of the same coin? J Neural Transm. 2012; 119(11): 1361–5.
• 13.O’Connor EJ, McCabe MP. Predictors of quality of life in carers for people with a progressive neurological illness: a longitudinal study. Qual Life Res. 2011; 20(5): 703–711.
• 14.Hans MB, Koeppen AH. Huntington’s chorea. Its impact on the spouse. J Nerv Ment Dis. 1980; 168(4): 209–214
• 15.Lowit A, van Teijlingen ER. Avoidance as a strategy of (not) coping: qualitative interviews with carers of Huntington’s disease patients. BMC Fam Pract. 2005; 14(6): 38.
• 16.Skirton H, Williams JK, Jackson BJ, Paulsen JS. Huntington disease: families’ experiences of healthcare services. J Adv Nurs. 2010; 66(3): 500–510.
• 17.Shakespeare J, Anderson J. Huntington’s disease – falling through the net. Health Trends. 1993; 25(1): 19–23.
• 18.Skirton H, Glendinning N. Using research to develop care for patients with Huntington’s disease. Br J Nurs. 1997; 6(2): 83–90.
• 19.Sparbel KJH, Driessnack M, Williams JK, Schutte DL, Tripp-Reimer T, McGonigal-Kenney M iwsp. Experiences of teens living in the shadow of Huntington disease. J Genet Couns. 2008; 17(4): 327–335.
• 20.McGarva K. Huntington’s disease: seldom seen-seldom heard? Health Bull. 2001; 59(5): 306–308.
• 21.Aubeeluck A, Moskowitz CB. Huntington’s disease. Part 3: family aspects of HD. Br J Nurs. 2008; 17(5): 328–331.
• 22.Kessler S. Forgotten person in the Huntington disease family. Am J Med Genet. 1993; 48(3): 145–150.
• 23.Aubeeluck A, Buchanan H. The Huntington’s disease quality of life battery for carers: reliability and validity. Clin Genet. 2007; 71(5): 434–445.
• 24.Cox M. Quality of life among carers of people with Huntington’s disease. Br J Neurosci Nurs. 2012; 8(5): 288–294.
• 25.Kaptein AA, Scharloo M, Helder DI, Snoei L, van Kempen GM, Weinman J, i wsp. Quality of life in couples living with Huntington’s disease: the role of patients’ and partners’ illness perceptions. Qual Life Res. 2007; 16(5): 793–801.
• 26.Røthing M, Malterud K, Frich JC. Caregiver roles in families affected by Huntington’s disease: a qualitative interview study. Scand J Caring Sci. 2013. doi: 10.1111/scs.12098.
• 27.Cubo E, Mariscal NP, Muñoz CG. Caregiver burden in Huntington’s disease. J Neurol Neurosurg Psychiatry. 2010; 81: Suppl: A43.
• 28.Luczczynska A, Durawa AB. Dudzinska M, Kwiatkowska M, Knysz B, Knoll N. The effects of mortality reminders on posttraumatic growth and finding benefits among patients with life-threatening illness and their caregivers. Psychol Health 2012; 27(10): 1227–1243.
• 29.Zwaanswijk M, Peeters JM, van Beek AP, Meerveld JHCM, Francke AL. Informal caregivers of people with dementia: problems, needs and support in the initial stage and in subsequent stages of dementia: a questionnaire survey. Open Nurs J. 2013; 7: 6–13.
• 30.Gabryelewicz T, Kotapka-Minc S, Mączka M, Motyl R, Sobów T, Szczudlik A, i wsp. Charakterystyka polskiej populacji osób z chorobą Alzheimera i ich opiekunów: Raport z badania obserwacyjnego EX-ON. Psychogeriatr Pol.2006; 3(2): 75–84 (in Polish).
• 31.Morawska JM, Gutysz-Wojnicka A. Problemy opiekunów chorych po udarze mózgu. Udar Mózgu. 2008; 10(2): 83–90 (in Polish).
• 32.Jaracz K, Grabowska-Fudala B, Górna K, Kozubski W. Caregiving burden and its determinants in Polish caregivers of stroke survivors. Arch Med Sci. 2014; 10(5): 941–950.
• 33.Borowiecka-KluzaJE, Miernik-JaeschkeM, Jaeschke R, SiwekM, Dudek D. The affective disorder-related burden imposed on the family environment: an overview. Psychiatr Pol. 2013; 47(4): 635–644.
• 34.Ciałkowska-Kuźnińska K, Kiejna A. Obciążenie opiekunów pacjentów z zaburzeniami psychicznymi. Postepy Psychiatr Neurol. 2012; 21(3): 175–182 (in Polish).
• 35.Domaradzki J. The impact of Huntington disease on family carers - a literature overview. Psychiatr Pol. 2015; 49(5): 931–944.
• 36.Domaradzki J. Doświadczenia opiekunów rodzinnych z systemem opieki medycznej: przypadek choroby Huntingtona [Family caregivers’ experiences with healthcare services: a case of Huntington disease]. Psychiatr Pol. 2016; 50(2) [in print].
• 37.Dorey J, Nicola N De, Tedroff J, Squitieri F, Clay E, Verny C et al. International comparison of Huntington’s disease burden. Value in Health. 2011; 14(7): A324.139

Identyfikatory

DOI

10.5604/18982395.1186494