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

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.     

Enablers of psychological well‐being for refugees and asylum seekers living in transitional countries: A systematic review

The purpose of this systematic review was to locate and synthesise existing peer‐reviewed quantitative and qualitative evidence regarding enablers of psychological well‐being among refugees and asylum seekers living in transitional countries and for whom migration status is not final. Systematic searches were conducted in nine databases: Academic Search Premier, CINAHL, Embase, Emcare, Medline, Psychology and Behavioral Science, PsycINFO, Scopus, and Web of Science. Search terms were related to refugees and asylum seekers, enablers, and psychological well‐being. Studies were limited to those conducted in the last 20 years, with participants who were refugees and asylum seekers with no legal residency status, aged 16 years and above, and living in transit host countries without UNHCR resettlement programmes. This systematic review was conducted between March and June 2018 and followed the PRISMA guidelines. Results were screened by two reviewers at two stages: title and abstracts, and full‐text. Critical appraisal and data extraction were also completed by two reviewers. Initial database searching yielded 3,133 results. Following the addition of two records from relevant reference lists and the removal of duplicates, a total of 1,624 results were included for screening. A total of 16 articles were deemed eligible for inclusion in this review, reporting on a collective sample of 1,352 participants. Twelve qualitative and four quantitative studies identified eight enablers of psychological well‐being: social support; faith, religion and spirituality; cognitive strategies; education and training opportunities; employment and economic activities; behavioural strategies; political advocacy; and environmental conditions. Despite many challenges associated with forced displacement and the transit period, this review highlights multiple factors that promote well‐being and suggest areas for intervention development and resource allocation.     

The interaction of personality disorders and eating disorders: a two-year prospective study of patients with longstanding eating disorders

OBJECTIVE: The current study aimed to investigate the relation between personality disorders and symptoms of both eating disorders and general psychopathology over time. METHOD: Seventy-four patients, with a mean age of 30 years and admitted to a hospital for treatment of a chronic eating disorder, were assessed using the Eating Disorder Inventory (EDI), the Eating Disorder Examination (EDE), the Symptom Check List-90-Revised (SCL-90-R), and the Structured Clinical Interview for DSM-IV Axis II disorders (SCID-II) at admission, and after 1 and 2 years. RESULTS: At the 2-year follow-up, there was considerable reduction in both personality and symptoms (effect size = 0.83-0.94). Panel modeling using structural equation modeling techniques indicated that symptomatic changes generally preceded changes in the personality disorder. DISCUSSION: Eating disorder symptoms and general symptomatology had direct effects on a dimensional personality disorder index. Thus, personality disorders may be at least partially a consequence of general symptomatology in chronic eating disorders. Symptom improvement appears to precede changes in personality in this sample of patients with chronic eating disorders.     

Psychological well‐being among mothers of children with cerebral palsy

Little is known about the proportion of mothers of children with cerebral palsy (CP) who experience distress, particularly in terms of depressed and anxious moods. The present study aimed to address this issue by examining the level of maternal anxious and depressed moods. The associations between maternal psychological well‐being and self‐efficacy and perception of children’s eating, sleeping and mobility were also examined. The sample comprised 78 mothers (mean age, 37 years; standard deviation, 7.91) of children with CP aged < 16 years of age. Data were collected by self‐administered questionnaires based on standard measures of anxious and depressed moods that were mailed to mothers. Results showed 29.8%, 26% and 11.7% of mothers were at low, moderate, and high risk of clinically anxious mood compared with population female norms of 23%, 13%, and 3%, respectively. A total of 22.1% and 19.5% of mothers were at low and moderate risk of clinically depressed mood compared with norms of 9% and 4%, respectively. Anxious and depressed moods were inversely associated with generalised self‐efficacy (p = 0.001) and anxious mood was inversely associated with children’s sleeping difficulties. In conclusion, levels of maternal psychological well‐being are a cause for concern and warrant exploration of interventions that will reduce maternal distress, and increase self‐efficacy.     

Factors that contribute to adult children caregivers' well‐being: a scoping review

The ageing of the population will increasingly result in reliance on the family for care in the community. Existing reviews have provided insights into the needs and health outcomes of family caregivers, but are disproportionately skewed towards spousal caregivers. Presently, a large majority of family caregivers are adult children. Adult children are distinct from spousal caregivers in terms of the combination of roles they occupy and the relationship they have with the care recipient. These unique considerations can have important implications for their well‐being. A growing body of literature has investigated the factors that contribute to adult children caregivers' (ACCs) well‐being; however, no reviews to date have synthesised this body of literature or appraised its methodological quality. Our objective was to identify the range and types of factors that contribute to ACC well‐being across studies. A scoping review was conducted. Medline, Psycinfo, EMBASE and CINAHL databases (January 1996–August, 2012) were systematically searched for studies investigating ACC well‐being. Inclusion/exclusion criteria were applied, methodological quality was appraised, the data were charted and a narrative synthesis was conducted. Fifty‐five studies met our inclusion criteria. Factors that contribute to ACC well‐being were found to be either: (i) care recipient‐related (e.g. nature of limitations, amount of care required); (ii) caregiver‐related (e.g. psychological dispositions of the ACC); or (iii) socially embedded (e.g. parent–child relationship, multiple role involvement, social support available to the ACC). Socially embedded factors that contribute to ACC well‐being have received the most attention in the literature. Among these factors, ACC well‐being is uniquely impacted by the quality of the parent–child relationship and combination of roles occupied. The majority of studies were cross‐sectional. Future studies should therefore employ a longitudinal design to inform our understanding of the changes that take place in the parent–child relationship and multiple role involvement across the care‐giving trajectory.     

Allowing for heterogeneity in monetary subjective well‐being valuations

Recent research on ‘happiness’ regression equations has shown how monetary values can be put on the well‐being effects of many life events (like health problems, marriage or the death of a spouse). Potentially, such work has practical implications for policy‐makers and the courts. However, this article argues that we need to be careful in such work to use the appropriate statistical method. It goes beyond previous research and allows for heterogeneity in the subjective well‐being scales. Using less restrictive models than the current literature, the article argues that standard linear or ordered response models seem consistently to overstate valuations. With data from the UK, it provides new monetary estimates of the well‐being consequences of a number of health problems, social capital indicators, marital status changes and social relationships. Copyright © 2010 John Wiley & Sons, Ltd.     

Prevalence of eating disorders in middle‐aged women

Objective: Little is known about the prevalence and correlates of eating disorders (ED) in middle‐aged women. Method: We mailed anonymous questionnaires to 1,500 Austrian women aged 40–60 years, assessing ED (defined by DSM‐IV), subthreshold ED, body image, and quality of life. We broadly defined “subthreshold ED” by the presence of either (1) binge eating with loss of control or (2) purging behavior, without requiring any of the other usual DSM‐IV criteria for frequency or severity of these symptoms. Results: Of the 715 (48%) responders, 33 [4.6%; 95% confidence interval (CI): 3.3–6.4%] reported symptoms meeting full DSM‐IV criteria for an ED [bulimia nervosa = 10; binge eating disorder = 11; eating disorder not otherwise specified (EDNOS) = 12]. None displayed anorexia nervosa. Another 34 women (4.8%; CI: 3.4–6.6%) displayed subthreshold ED. These women showed levels of associated psychopathology virtually equal to the women with full‐syndrome diagnoses. Discussion: ED appear common in middle‐aged women, with a preponderance of binge eating disorder and EDNOS diagnoses as compared to the “classical” diagnoses of anorexia and bulimia nervosa. Interestingly, middle‐aged women with even very broadly defined subthreshold ED showed distress and impairment comparable to women with full‐scale ED. © 2013 Wiley Periodicals, Inc. (Int J Eat Disord 2014; 47:320–324)     

Monetising the provision of informal long‐term care by elderly people: estimates for European out‐of‐home caregivers based on the well‐being valuation method

Providing informal care can be both a burden and a source of satisfaction. To understand the welfare effect on caregivers, we need an estimate of the ‘shadow value’ of informal care, an imputed value for the non‐market activity. We use data from the 2006–2007 Survey of Health Ageing and Retirement in Europe which offers the needed details on 29,471 individuals in Austria, Belgium, the Czech Republic, Denmark, France, Germany, Italy, the Netherlands, Poland, Spain, Sweden and Switzerland. Of these, 9768 are unpaid non‐co‐resident caregivers. To estimate net costs, we follow the subjective well‐being valuation method, modelling respondents' life satisfaction as a product of informal care provision, income and personal characteristics, then expressing the relation between satisfaction and care as a monetary amount. We estimate a positive net effect of providing mode rate amounts of informal care, equivalent to €93 for an hour of care/week provided by a caregiver at the median income. The net effect appears to turn negative for greater high care burdens (over 30 hours/week). Interestingly, the effects of differences in care situation are at least an order of magnitude larger. We find that carers providing personal care are significantly more satisfied than those primarily giving help with housework, a difference equivalent to €811 a year at the median income. The article makes two unique contributions to knowledge. The first is its quantifying a net benefit to moderately time‐intensive out‐of‐home caregivers. The second is its clear demonstration of the importance of heterogeneity of care burden on different subgroups. Care‐giving context and specific activities matter greatly, pointing to the need for further work on targeting interventions at those caregivers most in need of them.