Exploring carer burden amongst those caring for a child or adolescent with an eating disorder during COVID-19

Background Carer burden amongst carers of youth with an eating disorder is substantial and if not addressed can lead to negative outcomes for the patient, carer and family. The Coronavirus Disease 2019 (COVID-19) pandemic has made caring for youth with an ED even more onerous and preliminary research is beginning to emerge demonstrating the profound negative impact the pandemic is having upon individuals with EDs and their carers. Main In this review, we briefly summarize what is known about carer burden in families where a young person has an ED, consider the additional impact consequent to COVID-19 and highlight the need for interventions aimed at alleviating this. Pre-COVID-19 research identifies high levels of psychological and physical strain amongst those caring for a child with an ED. Themes are beginning to emerge as to why COVID-19 may further exacerbate carer burden: (1) reduced access to ED services; (2) increased physical vulnerability and exacerbation of psychiatric co-morbidity amongst youth with EDs; (3) increased practical demands placed on carers; and (4) social isolation and decreased social support. Conclusion The COVID-19 pandemic poses a specific threat to the mental health of youth with EDs and their carers. Given the salient role families play in caring for youth with an ED, attending to carer burden is imperative. Supporting carers through all phases of their child’s ED journey by offering adaptive and flexible supportive services which accommodate time constraints, geographic barriers and possible COVID-19 spread is essential.

Cross-sectional study evaluating burden and depressive symptoms in family carers of persons with age-related macular degeneration in Australia

ObjectivesWe aimed to analyse the degree of carer burden and depressive symptoms in family carers of persons with age-related macular degeneration (AMD) and explore the factors independently associated with carer burden and depressive symptoms.MethodsCross-sectional study using self-administered and interviewer-administered surveys, involving 96 family carer–care recipient pairs. Participants were identified from tertiary ophthalmology clinics in Sydney, Australia, as well as the Macular Disease Foundation of Australia database. Logistic regression, Pearson and Spearman correlation analyses were used to investigate associations of explanatory factors (family caregiving experience, carer fatigue, carer quality of life and care-recipient level of dependency) with study outcomes—carer burden and depressive symptoms.ResultsOver one in two family carers reported experiencing mild or moderate-severe burden. More than one in five and more than one in three family carers experienced depressive symptoms and substantial fatigue, respectively. High level of care-recipient dependency was associated with greater odds of moderate-severe and mild carer burden, multivariable-adjusted OR 8.42 (95% CI 1.88 to 37.60) and OR 4.26 (95% CI 1.35 to 13.43), respectively. High levels of fatigue were associated with threefold greater odds of the carer experiencing depressive symptoms, multivariable-adjusted OR 3.47 (95% CI 1.00 to 12.05).ConclusionsA substantial degree of morbidity is observed in family carers during the caregiving experience for patients with AMD. Level of dependency on the family carer and fatigue were independently associated with family carer burden and depressive symptoms.Trial registration numberThe trial registration number is ACTRN12616001461482. The results presented in this paper are Pre-results stage.

Respite, renewal, retirement and tensions: Australian Men's Sheds and the impact on significant others

The health and wellbeing benefits of Men's Sheds to the men who participate have had significant research attention for over a decade. However, there has been little research into the broader impacts of Men's Sheds, particularly in relation to the impacts on significant others in the lives of the men who participate. Our paper aims to redress this lack of research by focusing on the interrelated perceptions and experiences of men and those closest to them in four Men's Sheds in regional Victoria, Australia. The research shows that the partners and carers of ‘shedders’ reported that the men's participation not only benefited the men but also had benefits for their significant others. The study also showed that the partners of shedders in the study found that their individual and joint adjustment to retirement was in some cases assisted by the men enjoying the social and structured environment of the Men's Shed, while in other cases it was seen by partners as an over-commitment and impacting negatively on the marriage. The findings also shed some important light on some tensions experienced by the partners associated with carer burden and adjustments to retirement.

Perceived Help-Seeking Difficulty, Barriers, Delay, and Burden in Carers of People with Suspected Dementia

Because of an often complicated and difficult-to-access care system, help-seeking for people with suspected dementia can be stressful. Difficulty in help-seeking may contribute to carer burden, in addition to other known stressors in dementia care. This study examined the relationship between perceived help-seeking difficulty and carer burden, and the barriers contributing to perceived difficulty. We interviewed 110 carers accessing a community-based dementia assessment service for suspected dementia of a family member for their perceived difficulty, delays, and barriers in help-seeking, and carers burden in terms of role strain, self-criticism, and negative emotions. Linear regression models showed that perceived help-seeking difficulty is associated with carer self-criticism, while carer role strain and negative emotions are associated with symptom severity of the person with dementia but not help-seeking difficulty. Inadequate knowledge about symptoms, service accessibility, and affordability together explained more than half of the variance in perceived help-seeking difficulty (Nagelkerke R2 = 0.56). Public awareness about symptoms, support in navigating service, and financial support may reduce perceived difficulty in help-seeking, which in turn may reduce carer self-criticism during the early course of illness.

Perceived Help-Seeking Difficulty, Barriers, Delay, and Burden in Carers of People with Suspected Dementia

Because of an often complicated and difficult-to-access care system, help-seeking for people with suspected dementia can be stressful. Difficulty in help-seeking may contribute to carer burden, in addition to other known stressors in dementia care. This study examined the relationship between perceived help-seeking difficulty and carer burden, and the barriers contributing to perceived difficulty. We interviewed 110 carers accessing a community-based dementia assessment service for suspected dementia of a family member for their perceived difficulty, delays, and barriers in help-seeking, and carers burden in terms of role strain, self-criticism, and negative emotions. Linear regression models showed that perceived help-seeking difficulty is associated with carer self-criticism, while carer role strain and negative emotions are associated with symptom severity of the person with dementia but not help-seeking difficulty. Inadequate knowledge about symptoms, service accessibility, and affordability together explained more than half of the variance in perceived help-seeking difficulty (Nagelkerke R2 = .56). Public awareness about symptoms, support in navigating service, and financial support may reduce perceived difficulty in help-seeking, which in turn may reduce carer self-criticism during the early course of illness.

Is health literacy of family carers associated with carer burden, quality of life, and time spent on informal care for older persons living with dementia?

Introduction Family carers are cornerstones in the care of older people living with dementia. Family carers report extensive carer burden, reduced health-related quality of life (HRQoL), and extensive time spent on informal care (Time). Health literacy (HL) is a concept associated with people’s ability to access health services, and navigate the healthcare system. This study’s aim was to investigate HL among family carers, and investigate the associations between HL and carer burden, HRQoL, and Time spent on informal care. Method We designed a self-administered survey comprising validated instruments, including the Health Literacy Scale (HLS-N-Q12) to measure HL, Relative Stress Scale (RSS) to measure carer burden, the EQ-5D-5L instrument to measure HRQoL, and some modified questions from the Resource Utilization in Dementia (RUD) questionnaire to measure time spent on informal care (Time). Descriptive analysis in addition to bivariate and multiple linear regressions were undertaken. In multiple linear regression analysis, we used HL as the independent variable to predict the outcomes (carer burden, HRQoL, Time). Analyses were adjusted for the effects of explanatory independent variables: age, gender, education levels, urban residency, having worked as health personnel, caring for someone with severe/mild dementia, and being born abroad. Findings In a non-probability sample of 188 family carers from across Norway, most of them female and over the age of 60, we found high levels of HL. In the bivariate analysis, carer burden and HRQoL (EQvalue) showed significant associations with HL. In the multiple regression analyses, HL was statistically significantly associated with carer burden (B = -0.18 CI:-0.33,-0.02 p = 0.02), HRQoL (EQvalue: B = 0.003 with 95% CI: 0.001, 0.006 p = 0.04), and Time (B = -0.03 with 95% CI: -0.06, 0.000, p = 0.046), after adjusting for the effect of independent variables. Conclusion This is one of the first studies to investigate the associations between HL and different outcomes for family carers of older people living with dementia. Additional research into the associations identified here is needed to further develop our understanding of how to support family carers in their roles. Targeted support that increases family carers’ HL may have potential to enhance their ability to provide sustainable care over time.

Factors Related to Sleep Disturbances for Informal Carers of Individuals With PD and Dyadic Relationship: A Rural Perspective

This study examines factors related to sleep disturbances, and the dyadic sleep relationship, in a convenience sample of 29 persons with Parkinson disease (PD) and spouse carer dyads living in regional Queensland. Carers completed questionnaires on sleep, depression, anxiety, carer burden, and well-being. Regarding carers, 66% reported sleep disturbances related to nocturnally care demands. Less than half of informal carers with a disturbed sleep had informed a health professional of this problem. Medication was the most commonly advised sleep intervention (44%). Sleep disturbances in informal carers correlated with increasing carer burden, depression scores, anxiety scores, poor quality of life, negative cognitions related to their sleep disturbance, and poor sleep hygiene. Regarding patient-carer dyads, 59% reported both the individuals having problematic sleep disturbances. Patient sleep disturbance correlated with informal carer increase in depression and anxiety scores, and poor carer burden. Informal carer’s sleep disturbance correlated with patient anxiety scores and severity of complications from PD therapy. Evidence-based sleep interventions addressing such dyads in rural areas warrant future study.