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

Abstract

BackgroundPrevious 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.MethodsSemi-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.ResultsMost 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.ConclusionThis 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.

Network and Social Support in Children With Chronic Diseases: Understanding the Child's Perception

“…The financial impact brought by the disease, commonly affects, the aggravation of the situation experienced, and one of the difficulties in chronic condition is the increased costs related to transport for the treatament. 17 Children realize this need and the support received for to minimize the problem. So it is important that there is always a source of social support to minimize the family expenses with treatment and to promote appropriate follow-up of treatment and continuity of care.…”

The Relationship between Burden and Depression in Spouses of Chronic Kidney Disease Patients

“…Regardless of the type of the disease, it is a multidimensional phenomenon affecting caregivers physically, emotionally, and socially [9]. Findings of previous studies highlight the need to focus on the health of caregivers, since it is possible that they are even more influenced emotionally from the chronic disease than the patient [10]. As Adelman et al point out [11], caregivers become the invisible patient and therefore physicians must recognize the importance of family caregiving since the health of their patients depends on the quality of home-based caregiving.…”

Inflammatorisk fordøyelsessykdom - fra partnerens synsvinkel

“…Dette gjelder både følelsesmessig, sosialt og økonomisk. Studier viser at ulike pårørende-grupper kan oppleve mange av de samme utfordringene (Golics, Basra, Salek & Finlay, 2013), men samtidig er det viktig å få fram de spesifikke utfordringene som er relatert til ulike sykdommer. Vi har ikke funnet studier om pårørendes erfaringer med å leve med et familiemedlem som har en inflammatorisk fordøyelsessykdom.…”

“…Men denne type savn kan også vaere typisk for andre partnergrupper. Andre studier om partnere til personer med kroniske lidelser generelt fremhevet tap av den intime relasjonen som en negativ konsekvens av sykdommen (Golics et al, 2013). En svensk studie har gitt grunn for å framheve at saerlig kvinnene midt i livet har et behov for å bli elsket som ektefelle, og ikke kun vaere omsorgsgiver (Eriksson & Svedlund, 2006).…”

“…Kroniske sykdommer kan påvirke pårørende negativt på mange ulike måter, uavhengig av hvilken sykdom det er snakk om, både økonomisk, følelsesmessig og sosialt (Golics et al, 2013). Det kan likevel vaere at denne type sykdom skaper spesielle utfordringer for partneren og samlivet.…”