The impact of patients' chronic disease on family quality of life: an experience from 26 specialties

Catherine Jane Golics, Mohammad Khurshid Azam Basra, M Sam Salek, Andrew Yule Finlay, Catherine Jane Golics, Mohammad Khurshid Azam Basra, M Sam Salek, Andrew Yule Finlay

Abstract

Background: Previous studies have assessed family quality of life in individual disease areas and specialties. The aim of this study was to investigate the impact of disease on family members of patients over a wide range of specialties and identify key impact areas. This information is essential in order to reveal the extent of this impact and to allow strategies to be developed to support the family members of patients with chronic disease.

Methods: Semi-structured interviews were carried out with 133 family members of mostly chronically ill patients from 26 medical specialties. Family members were invited to discuss all areas of their lives that had been affected by having an unwell relative. Thematic analysis was carried out using NVivo9® software.

Results: Most family members were female (61%), the partner or spouse of the patient (56%), or the parent (22%). Their mean age was 56.1 years (range: 21-85 years) and the mean duration of the patient's disease was 8.9 years (range: 1 month to 60 years). Ten key themes of family quality of life were identified from interviews. The median number of themes reported by family members was six (range: 1-10). The key themes included: emotional impact (mentioned by 92% of subjects), daily activities (91%), family relationships (69%), sleep and health (67%), holidays (62%), involvement in medical care and support given to family members (61%), work and study (52%), financial impact (51%), social life (37%), and time planning (14%). Relationships between the themes were identified.

Conclusion: This large scale multi-specialty study has demonstrated the significant, yet similar, impact that illness can have on the quality of life of patients' family members. Family quality of life is a previously neglected area of health care which needs to be addressed in order to provide appropriate support for the patient and the family unit.

Keywords: emotional impact; family activities; financial impact; greater patient; secondary impact of disease; social impact.

Figures

Figure 1
Figure 1
Flow diagram describing the analytical process. Notes: NVivo9® qualitative data analysis software (QRS international, Doncaster, Australia).
Figure 2
Figure 2
The ten themes identified in the study and the percentage of family members affected by each.

References

    1. Basra MKA, Finlay AY. The family impact of skin diseases: the Greater Patient concept. Br J Dermatol. 2007;156(5):929–937.
    1. Guyatt GH, Feeny DH, Patrick DL. Measuring health-related quality of life. Ann Intern Med. 1993;118(8):622–629.
    1. Poston D, Turnbull A, Park J, Mannan H, Marquis J, Wang M. Family quality of life: a qualitative inquiry. Ment Retard. 2003;41(5):313–328.
    1. Swanberg JE. Making it work: informal caregiving, cancer, and employment. J Psychosoc Oncol. 2006;24(3):1–18.
    1. Kornblith AB, Herr HW, Ofman US, Scher HI, Holland JC. Quality of life of patients with prostate cancer and their spouses. The value of a data base in clinical care. Cancer. 1994;73(11):2791–2802.
    1. Weitzenkamp DA, Gerhart KA, Charlifue SW, Whiteneck GG, Savic G. Spouses of spinal cord injury survivors: the added impact of caregiving. Arch Phys Med Rehabil. 1997;78(8):822–827.
    1. Youngblood NM, Hines J. The influence of the family’s perception of disability on rehabilitation outcomes. Rehabil Nurs. 1992;17(6):323–326.
    1. Bryman A. Social Research Methods. Oxford; Oxford University Press; 2001.
    1. Kerr C, Nixon A, Wild D. Assessing and demonstrating data saturation in qualitative inquiry supporting patient-reported outcomes research. Expert Rev Pharmacoecon Outcomes Res. 2010;10(3):269–281.
    1. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.
    1. Gabriel Z, Bowling A. Quality of life from the perspectives of older people. Ageing Soc. 2004;24(5):675–691.
    1. Bowen C, MacLehose A, Beaumont JG. Advanced multiple sclerosis and the psychosocial impact on families. Psychol Health. 2011;26(1):113–127.
    1. Osse BH, Vernooij-Dassen MJ, Schade E, Grol RP. Problems experienced by the informal caregivers of cancer patients and their needs for support. Cancer Nurs. 2006;29(5):378–388.
    1. Demi A, Bakeman R, Moneyham L, Sowell R, Seals B. Effects of resources and stressors on burden and depression of family members who provide care to an HIV-infected woman. J Fam Psychol. 1997;11(1):35–48.
    1. Hagedoorn M, Buunk BP, Kuijer RG, Wobbes T, Sanderman R. Couples dealing with cancer: role and gender differences regarding psychological distress and quality of life. Psychooncology. 2000;9(3):232–242.
    1. Lewis FM. Strengthening family supports: cancer and the family. Cancer. 1990;65(Suppl 3):752–759.
    1. Rolland JS. In sickness and in health: the impact of illness on couples’ relationships. J Marital Fam Ther. 1994;20(4):327–347.
    1. Eghlileb AM, Davies EE, Finlay AY. Psoriasis has a major secondary impact on the lives of family members and partners. Brit J Dermatol. 2007;156(6):1245–1250.
    1. Elliott BE, Luker K. The experiences of mothers caring for a child with severe atopic eczema. J Clin Nurs. 1997;6(3):241–247.
    1. Boeije HR, Van Doorne-Huiskes A. Fulfilling a sense of duty: how men and women giving care to spouses with multiple sclerosis interpret this role. Community Work Fam. 2003;6(3):223–244.
    1. Brown I, Anand S, Fung WLA, Isaacs B, Baum N. Family quality of life: Canadian results from an international study. J Dev Phys Disabil. 2003;15(3):207–230.
    1. Langa KM, Chernew ME, Kabeto MU, et al. National estimates of the quantity and cost of informal caregiving for the elderly with dementia. J Gen Intern Med. 2001;16(11):770–778.
    1. Clarke SA, Skinner R, Guest J, et al. Health-related quality of life and financial impact of caring for a child with thalassaemia major in the UK. Child Care Health Dev. 2010;36(1):118–122.
    1. Davis E, Shelly A, Waters E, et al. The impact of caring for a child with cerebral palsy: quality of life for mothers and fathers. Child Care Health Dev. 2010;36(1):63–71.
    1. Lapidus CS, Kerr PE. Social impact of atopic dermatitis. Med Health R I. 2001;84(9):294–295.
    1. Gannoni AF, Shute RH. Parental and child perspectives on adaptation to childhood chronic illness: a qualitative study. Clin Child Psychol Psychiatry. 2010;15(1):39–53.
    1. Lieberman MA, Fisher L. The impact of chronic illness on the health and well-being of family members. Gerontologist. 1995;35(1):94–102.
    1. Given BA, Given CW, Kozachik S. Family support in advanced cancer. CA Cancer J Clin. 2001;51(4):213–231.

Source: PubMed

赞助者和合作者

医疗条件

药物干预

3
订阅