Low quality of life and psychological wellbeing contrast with moderate perceived burden in carers of people with severe multiple sclerosis

Giordano, Andrea; Cimino, Vincenzo; Campanella, Angela; Morone, Giovanni; Fusco, Augusto; Farinotti, Mariangela; Palmisano, Lucia; Confalonieri, Paolo; Lugaresi, Alessandra; Grasso, Maria Grazia; Ponzio, Michela; Veronese, Simone; Patti, Francesco; Solari, Alessandra

doi:10.1016/j.jns.2016.05.016

Cited by 30 publications

(28 citation statements)

References 36 publications

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“…Other factors are related to the individual who is being cared for, such as severity of their neuropsychiatric symptoms [16], patients' level of empathy [17], and frequency of disturbing behaviours [18]. Further, a number of carerrelated variables have been found to influence the relationship between caregiving and psychological distress, including gender, resilience [12], sense of competence [14], coping style [19], carer anxiety, household income, and living with the care recipient [20]. Finally, the important role of social support in the carer stress process has also been recognised [21].…”

Section: Mental Health Of Carersmentioning

confidence: 99%

Psychological distress among carers and the moderating effects of social support

et al. 2020

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Background: Carers provide both practical and emotional support and often play an important role in coordination of care for recipients. The demands of caring may lead to increased levels of stress for the carer, which can affect mental health and quality of life. This study examined the relationship between being a carer and psychological distress (assessed using the Kessler Psychological Distress Scale [K10]), and explored the moderating effect of social support in that relationship using a large sample. Methods: The study used data from the 45 and Up study, a large cohort study of individuals aged 45 years and over in New South Wales, Australia, and applied multiple regression methods and moderation analysis. The sample for the current study comprised 267,041 participants drawn from the baseline dataset, with valid data on the primary outcome (carer status). Results: The mean age of participants was 62.73 (±11.18) years, and 4.23% and 7.13% were identified as full-time and part-time carers, respectively. Compared to non-carers, full-time carers had K10 scores that were on average, higher by 1.87, while part-time carers' K10 scores were on average higher by 1.60 points. A perception of social support reduced the strength of the relationship between carer status and psychological distress by 40% for fulltime carers and 60% for part-time carers. Conclusions: The findings have important implications, for both prevention and treatment of psychological problems among carers. In terms of prevention, they suggest that public health campaigns focused on increasing awareness regarding the psychological burden faced by carers would be useful. In terms of intervention, potential treatments that focus on improving social support networks may be helpful. The results are particularly important in the current context of an ageing population in Australian and other developed countries, where caregiving is likely to play an increasing role in the care and support services.

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Section: Mental Health Of Carersmentioning

confidence: 99%

Psychological distress among carers and the moderating effects of social support

et al. 2020

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“…In previous research on caregiver strain many different measures of caregiver strain or quality of life were used, making it difficult to compare outcomes. These measures include the Zarit Burden Interview (Giordano et al, 2016), General Health Questionnaire (Figved et al, 2007), Neuropsychiatric Inventory distress scale (Figved et al, 2007), Caregiver Strain Index (Chipchase and Lincoln, 2001;Khan et al, 2007), Care Burden Scale (Knight et al, 1997), Palliative Care Outcome Scale-Symptoms-MS (Giordano et al, 2016), caregiver self-reported burden of care (Khan et al, 2007) and a 5-point Likert item for caregiver burden (Buchanan et al, 2011). In the current study we used the Modified Caregiver Strain Index, which provides a useful method for detecting strain levels among informal caregivers (Thornton and Travis, 2003).…”

Section: Strengths and Limitationsmentioning

confidence: 99%

“…Research into positive aspects of caregiving for caregivers is scarce; the few studies that have been done report an increased sensitivity towards another person's needs and problems, companionship and a sense of fulfilment (Cohen et al, 2002;Knight et al, 1997). Other studies have found negative effects of caregiving on the caregiver's physical and mental health, social participation and financial situation (Buchanan et al, 2011;Buhse, 2008;Giordano et al, 2016;McKeown et al, 2003). Aspects of caregiving that were most negatively rated by spouses of persons with MS concerned worries about the future, the time burden involved and the fact that caregiving leads to more restrictions to life and less time available for the rest of the family (Knight et al, 1997).…”

Section: Introductionmentioning

confidence: 99%

“…Several studies examined caregiver and/or care recipient characteristics involved with caregiver strain when providing informal care for a person with MS. From the caregiver's perspective, an increased ability to cope with caregiving and satisfaction with social support were associated with less caregiver strain (Knight et al, 1997), while a higher number of caregiving hours, more restrictions to the caregiver's ability to perform daily activities, higher carer anxiety, low household income and living with the care recipient were associated with higher caregiver strain (Buchanan et al, 2011;Giordano et al, 2016). Studies were inconsistent on whether male or female caregivers experience more strain (Buchanan et al, 2011;Giordano et al, 2016;Knight et al, 1997;Perrin et al, 2015). In terms of characteristics of the person with MS, the most distressing MS symptoms for spousal caregivers were motor problems and gait disturbance, sudden mood changes, the partner upsetting other people, incontinence and pain (Knight et al, 1997).…”

Section: Introductionmentioning

confidence: 99%

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Caregiver strain among life partners of persons with mild disability due to relapsing-remitting multiple sclerosis

Hiele

Gorp

Heerings³

et al. 2019

Multiple Sclerosis and Related Disorders

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Background: Multiple sclerosis (MS) is a chronic disorder of the central nervous system with an unpredictable disease course. Life partners often become caregivers, which can be both rewarding and challenging, as the caregiver's physical and mental health is often negatively affected. Previous studies on caregiver strain focused on caregivers of persons with MS with relatively high disability levels, while caregiver strain may already be experienced by life partners living with mildly disabled persons with MS. Objective: The current study examines factors associated with caregiver strain in life partners of persons with mild disability due to relapsing-remitting MS. Methods: We included 173 persons with relapsing-remitting MS (79% female; mean age 42.8 years; 90% employed; median EDSS 2.0) and their life partners. The life partners completed questionnaires on caregiver strain and neuropsychiatric and cognitive functioning of the person with MS. The persons with MS completed questionnaires about demographics, fatigue, personality, physical, cognitive and neuropsychiatric functioning, and underwent neuropsychological and neurological examinations. A linear regression analysis was conducted to examine predictors of caregiver strain. Results: 24% of the life partners experienced above average levels of caregiver strain. A multivariate linear regression analysis revealed that a higher age of the person with MS (β = 0.16, p = 0.04), more physical disability (β = 0.17 p = 0.04), more cognitive and neuropsychiatric problems of the person with MS as reported by

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“…These tasks can represent both a primary burden in terms of perceived workload in care provision, and a secondary burden in terms of their impact on caregivers' psychological and social life (Bayen, Papeix, Pradat-Diehl, Lubetzki, & Joël, 2015;Braithwaite, 1992). Taking care of a person with MS is per se associated with lower levels of health, health-related quality of life (HRQoL) and life satisfaction, as well as higher depression and anxiety; in addition, factors like care recipients' physical and cognitive disability levels and caregiving duration are related to higher burden and lower well-being (Aronson, 1997;Forbes et al, 2007;Giordano et al, 2012Giordano et al, , 2016McKeown, Porter-Armstrong, & Baxter, 2003;Patti et al, 2007;Petrikis, Baldouma, Katsanos, Konitsiotis, & Giannopoulos, 2019;Pozzilli et al, 2004;Rivera-Navarro et al, 2009;Sherman et al, 2007). Interestingly, recent research also showed that caregiving can be associated with positive outcomes such as personal growth, strengthened family and social relations (Delle Fave et al, 2017), and also benefit finding (Pakenham, 2005a(Pakenham, , 2005b.…”

Section: Introductionmentioning

confidence: 99%

The caring experience in multiple sclerosis: Caregiving tasks, coping strategies and psychological well‐being

Bassi

Cilia²,

Falautano

et al. 2019

Health Soc Care Community

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Informal caregivers play a crucial role in supporting persons with multiple sclerosis (MS), a neurodegenerative disease resulting in progressive worsening of physical and cognitive functioning. While research extensively showed that caregiving workload can be perceived as burdensome, little attention was devoted to the relation connecting workload and caregivers’ well‐being. Building on previous literature on stress and coping, the aim of this study was to test the mediational role of coping between caregivers’ tasks and well‐being. A group of 680 caregivers of persons with MS (M age = 46.45; 51.2% women) was recruited in eight Italian MS centres between June 2015 and December 2016. Caregiving tasks related to basic activities of daily living (ADL), instrumental ADL, psycho‐emotional and social‐practical care were assessed through the Caregiving Tasks in MS Scale; coping strategies (avoidance, criticism and coercion, practical assistance, supportive engagement, positive reframing) were investigated through the Coping with MS Caregiving Inventory; well‐being was evaluated through the Psychological Well‐Being Scales. Analyses substantiated a multi‐mediation model including tasks in basic ADL, psycho‐emotional and social‐practical care, and the coping strategies avoidance, criticism/coercion, supportive engagement, positive reframing. Basic ADL care was negatively related to psychological well‐being through lower use of supportive engagement and positive reframing. By contrast, psycho‐emotional and social‐practical tasks were both negatively and positively related to psychological well‐being, through higher use of avoidance and criticism/coercion as well as supportive engagement and positive reframing. Findings suggest that caregiving tasks are not solely detrimental to well‐being, but they may also provide a positive contribution through the adaptive coping strategies supportive engagement and positive reframing. Findings also highlighted task‐specific areas that could be targeted in intervention in order to effectively lighten burden and promote well‐being among caregivers.

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Low quality of life and psychological wellbeing contrast with moderate perceived burden in carers of people with severe multiple sclerosis

Cited by 30 publications

References 36 publications

Psychological distress among carers and the moderating effects of social support

Psychological distress among carers and the moderating effects of social support

Caregiver strain among life partners of persons with mild disability due to relapsing-remitting multiple sclerosis

The caring experience in multiple sclerosis: Caregiving tasks, coping strategies and psychological well‐being

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