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There is an urgent need to improve early accessibility to psychoeducational interventions for informal caregivers of individuals with eating disorders (EDs). We adapted the BREF programme, a short, single-family, psycho-educational intervention originally developed for caregivers in severe mental disorders, to EDs (BREF-ED) and assessed at diagnosis announcement. We hypothesised that it has a good acceptability and effectiveness in reducing short-term caregivers’ self-reported levels of burden and depressive symptoms.
Methods
Data of caregivers who participated in the BREF-ED programme were analysed. Adherence, satisfaction, and perceived usefulness were evaluated. Changes in self-reported burden and depression symptoms were measured pre-, post-, and 3 months after the intervention using the Zarit Burden Interview (ZBI) and Center for Epidemiological Studies – Depression scale (CES-D).
Results
Of the 53 caregivers included in the study, 52 participants completed the BREF-ED programme. As compared to baseline, ZBI scores showed a significant reduction after the intervention (Cohen’s d = 0.61, p < 0.001), and at the 3-month assessment (Cohen’s d = 0.62, p < 0.001). The CES-D scores also significantly decreased by the end of the third session (Cohen’s d = 0.83, p < 0.001) and at the 3-month follow-up (Cohen’s d = 0.77, p < 0.001). Satisfaction scores were high, with 90.1% of participants reporting being “very satisfied” and 9.9% “satisfied.”
Conclusions
Preliminary findings demonstrated high adherence rates, caregiver satisfaction, and a positive impact on burden and related depressive symptoms immediately after the programme and at short-term follow-up. This time- and resource-efficient programme has the potential for easy dissemination.
Autologous hematopoietic stem cell transplant (HCT) cancer caregivers experience significant burden and stress with limited tailored resources. Mindfulness interventions hold promise in alleviating caregiver distress. Predicated on our previous work with allogeneic HCT caregivers, this single-arm trial tested the feasibility and acceptability of a modified mindfulness-based intervention, AutoFOCUS, among autologous HCT caregivers.
Methods
Participants received the 6-session AutoFOCUS face-to-face via telehealth, with assessments at baseline, end of treatment, and 1-month post-treatment. Feasibility was assessed through recruitment, retention, and session attendance, and acceptability was measured via satisfaction and intent to continue using skills learned. Exploratory outcome measures included distress, anxiety, perceived stress, affect, and post-traumatic growth. Data from the smartphone app that supplemented the face-to-face component of the intervention were collected. In-depth interviews gathered participant feedback.
Results
Twenty-six caregivers (mean age = 57.7 years, 89% female) were enrolled and 19 completed at least 4 sessions, 14 completed all 6 sessions, and 22 completed the 1-month follow-up. High satisfaction (M = 3.56/4; SD = 0.43) and intent to utilize the skills learned in the future (M = 8.58/10; SD = 1.81/4) were reported. Significant reductions in distress (p < .001, (effect sizes [ES]) = 0.99), anxiety (p = .032, [ES] = 0.53), perceived stress (p = .035, [ES] = 0.52), and negative affect (p = .008, [ES] = 0.69) were reported, along with a significant increase in post-traumatic growth (p = .009, [ES] = 0.67) from baseline to end of treatment. App use was moderate. Interview results highlighted positive perceptions and supported quantitative results.
Significance of results
AutoFOCUS was feasible and acceptable. Future studies should explore the efficacy of this treatment on a larger scale with a comparison condition.
People from ethnic minority groups are more likely to be impacted by global disasters than White ethnic groups due to pre-existing vulnerabilities. A lack of trust in mainstream support services, which have often accounted poorly for the needs of those communities, contributes to further discrimination and disadvantage.
Aims
This study was conducted in 2022, soon after the COVID-19 pandemic, to survey the overall well-being and healthcare needs of UK families with a Black ethnic background.
Method
A total of 2124 parents completed an online survey that included measures of psychological well-being, children’s difficulties, family healthcare needs and perception of support both before and after the COVID-19 pandemic.
Results
Seventy per cent of parents reported high levels of stress, depression and anxiety, and over half identified high emotional and relational difficulties in their children. Higher levels of distress in parents correlated with greater difficulties in children and poorer parent–child relationships. Community support was associated with greater parental well-being and fewer child difficulties. Parents sought support from formal support networks when health issues were perceived as more severe.
Conclusions
This study engaged a large sample of families from Black ethnic backgrounds, but recruitment may have been biased by sociodemographic characteristics. Levels of psychological distress were high, possibly due to pre-existing and enduring exposure to difficult life circumstances. Support from community networks was perceived as helpful, especially by those with milder levels of psychological distress. The strong association between parents’ and children’s well-being suggests that family-focused interventions could be beneficial, especially if culturally adapted.
Before COVID-19, breast cancer patients in the UK typically received 15 radiotherapy (RT) fractions over three weeks. During the pandemic, adoption of a 5-fraction treatment prescription and more advanced treatment techniques like surface-guided RT, meant a change in the duration and number of hospital visits for patients accessing treatment. This work sought to understand how breast cancer patients’ time in the RT department has changed, between 2018 and 2023.
Methods:
Appointments for CT simulation, mould room, and RT, from January 2018 to December 2023, were extracted from the Mosaiq® Oncology Management System. Appointments lasting between 5 minutes and 5 hours were analysed. Total visit time was calculated from check-in to completion on the quality checklist.
Results:
In total, 29,523 attendances were analysed over 6 years. Average time spent in the department decreased during the pandemic but has since increased 12·4% above pre-COVID-19 levels. Early morning and late afternoon appointments resulted in the shortest visits, with early afternoon appointments leading to the longest visits. On average, patients spend the longest in the department on a Monday, and the least amount of time on a Friday. Friday was the least common day to start a 15-fraction treatment, whereas Tuesday and Friday were equally uncommon for the 5-fraction regime.
Conclusions:
During the COVID-19 pandemic, the number of visits a patient makes for breast cancer RT and related services dropped, and remained lower post-COVID-19, due to fewer treatment fractions being prescribed. Average time spent in the department initially decreased but has since increased beyond pre-COVID-19 levels.
This study aimed to examine the impact of perceived caregiver burden and associated factors on the anger levels and anger expression styles of family caregivers for patients receiving palliative care at home.
Methods
This cross-sectional and exploratory correlational type study was conducted with 343 family caregivers. Data were collected face-to-face between March and September 2022 using a Caregiver and Care Recipient Information Form, the Burden Interview, and the Trait Anger and Anger Expression Scale.
Results
There was a significant from very weak to weak correlation between the caregiver burden scores and trait anger, anger-in, anger-out, and anger control scores. The caregiver burden increased trait anger, anger-in, and anger-out while decreasing anger control. The caregiver burden, daily caregiving hours, presence of another dependent at home, presence of a separate room for the care recipient, income level, chronic illness of caregiver, duration of caregiving per month, and care recipient gender explained 17.2% of the total variation in anger control scores.
Significance of results
The caregiver burden levels and anger expression styles of family caregivers vary depending on the characteristics of both the caregiver and the care recipient. Family members may experience an increase in perceived caregiver burden, which can lead to elevated levels of trait anger, suppression of anger, and reduced anger control. Healthcare professionals should monitor the family caregivers’ caregiver burden and anger levels. Family caregivers should be encouraged and given opportunities to express their feelings and thoughts about caregiving. Strategies aimed at reducing the caregiver burden and coping with feelings of anger should be planned for the family members of patients receiving palliative care at home.
The spread of false and misleading information, hate speech, and harassment on WhatsApp has generated concern about elections, been implicated in ethnic violence, and been linked to other disastrous events across the globe. On WhatsApp, we see the activation of what is known as the phenomenon of hidden virality, which characterizes how unvetted, insular discourse on encrypted, private platforms takes on a character of truth and remains mostly unnoticed until causing real-world harm. In this book chapter, we discuss what factors contribute to the activation of hidden virality on WhatsApp while answering the following questions: 1) To what extent and how do WhatsApp’s sociotechnical affordances encourage the sharing of mis- and disinformation on the platform, and 2) How do WhatsApp’s users perceive and deal with mis- and disinformation daily? Our findings indicate that WhatsApp’s affordance of perceived privacy actively encourages the spread of false and offensive content on the platform, especially when combined with it being impossible for users to report inappropriate content anonymously. Groups in which such content is prominent are tightly controlled by administrators who typically hold dominant cultural positions (e.g., they are senior and male). Users who feel hurt by false and offensive content need to personally ask administrators for its removal. But this is not an easy job, as it requires users to challenge dominant cultural norms, causing them stress and anxiety. Users would rather have WhatsApp take on the burden of moderating problematic content. We close the chapter by situating our findings in relation to cultural and economic power dynamics. We bring attention to the fact that if WhatsApp does not start to take action to reduce and prevent the real-world harm of hidden virality, its affordances of widespread accessibility and encryption will keep promoting its market advantages, leaving the burden of moderating content to fall on minoritized users.
We study the structure of infinite discrete sets D definable in expansions of ordered Abelian groups whose theories are strong and definably complete, with a particular emphasis on the set $D'$ comprised of differences between successive elements. In particular, if the burden of the structure is at most n, then the result of applying the operation $D \mapsto D'\ n$ times must be a finite set (Theorem 1.1). In the case when the structure is densely ordered and has burden $2$, we show that any definable unary discrete set must be definable in some elementary extension of the structure $\langle \mathbb{R}; <, +, \mathbb{Z} \rangle $ (Theorem 1.3).
Public health crises like Covid-19 profoundly influence informal care-givers of older adults with functional health limitations. This study deepens existing understanding of care-giving processes during the pandemic to uncover insights useful for developing effective care-giving interventions for the post-pandemic era and future public health crises. Specifically, it examined (1) how care-giving activities during the pandemic impacted care-giver psychological wellbeing by affecting caregiving burden and the positive aspects of caregiving and (2) the moderating effect of pandemic-specific factors (i.e., care recipients’ unmet health-care needs due to the pandemic). Multiple-group analyses were conducted on data on 906 informal care-givers of older adults with functional health limitations, obtained from the Covid-19 Supplement and Round 10 Survey of the National Health and Aging Trends Study conducted in the United States. The mean age of participants was approximately 60 years, and most were white women. Positive aspects of care-giving significantly mediated the relationships between providing assistance in activities of daily living (ADL), instrumental ADL, and emotional support and positive affect. Care-giving burden significantly mediated the relationship between assistance in ADL and positive and negative affect. Care recipients’ unmet health-care needs moderated the relationships between assistance in ADL and burden, assistance in ADL and negative affect, and emotional support and positive affect. In sum, this study underscores the positive aspects of care-giving as well as care-giving burden and demonstrates that greater attention should be paid to care-givers caring for individuals with unmet health-care needs during public health crises. The results suggest that more-effective responses to public health crises must be developed, especially within health-care systems.
Edited by
Allan Young, Institute of Psychiatry, King's College London,Marsal Sanches, Baylor College of Medicine, Texas,Jair C. Soares, McGovern Medical School, The University of Texas,Mario Juruena, King's College London
This chapter provides a summary of the prevalence rates, patterns of comorbidity, treatment rates and impact and consequences of mood disorder subtypes in adults and youth. The emergence of evidence of prevalence of mood disorders in community-based samples during the past decade demonstrates that BPS is far more common than earlier estimated. Recent studies of the BPS in youth indicate that the peak prevalence of BPS emerges in late adolescence and early adulthood. Comorbidity between both BPD and MDD with other mental disorders is pervasive, with the greatest co-occurrence for anxiety disorders and substance use disorders. Despite a large increase in the proportion of people with mood disorders who receive professional treatment, there is still a large gap between those with impairing mood disorders who remain untreated. The global burdens of both BPD and MDD are equivalent to that of many other common chronic diseases, and there is tremendous impact of both subtypes of mood disorders at both the individual and societal levels.
This chapter considers the major causes of mortality and morbidity for adults and describes the significant burden of these non-communicable diseases, their risk factors and potential public health action. While the conditions discussed are relevant to other age groups, those included – cancers, cardiovascular disease, diabetes, obesity, mental health problems and long COVID – have particular relevance for the large proportion of the population of working age. This chapter also focuses on specific actions or policies which can be employed to address each of these non-communicable diseases.
Data on trends in the epidemiological burden of bipolar disorder are scarce.
Aims
To provide an overview of trends in bipolar disorder burden from 1990 to 2019.
Method
Revisiting the Global Burden of Disease Study 2019, we analysed the number of cases, calculated the age-standardised rate (per 100 000 population) and estimated annual percentage change (EAPC) of incidence, prevalence and years lived with disability (YLDs) for bipolar disorder from 1990 to 2019. The independent effects of age, period and cohort were estimated by the age–period–cohort modelling.
Results
Globally, the bipolar disorder-related prevalent cases, incident cases and number of YLDs all increased from 1990 to 2019. Regionally, the World Health Organization Region of the Americas accounted for the highest estimated YLD number and rate, with the highest age-standardised prevalence rate in 1990 and 2019 and highest EAPC of prevalence. By sociodemographic index (SDI) quintiles, all five SDI regions saw an increase in estimated incident cases. Nationally, New Zealand reported the highest age-standardised rate of incidence, prevalence and YLDs in 1990 and 2019. The most prominent age effect on incidence rate was in those aged 15–19 years. Decreased effects of period on incidence, prevalence and YLD rates was observed overall and in females, not in males. The incidence, prevalence and YLD rates showed an unfavourable trend in the younger cohorts born after 1990, with males reporting a higher cohort risk than females.
Conclusions
From 1990 to 2019, the overall trend of bipolar disorder burden presents regional and national variations and differs by age, sex, period and cohort.
Severe mental disorders – such as schizophrenia, bipolar disorder, and substance use disorders – exert a negative impact not only on affected people but also on their carers. To support carers of people with severe mental disorders, several psychosocial interventions have been developed.
Methods
This systematic review and meta-analysis aimed to assess whether psychosocial interventions for carers of persons with schizophrenia, bipolar disorder, or substance use disorders produce benefit/harm with respect to a series of outcomes – including subjective and objective burden, depressive symptoms, well-being/quality of life, sleep, skills/knowledge, self-efficacy, physical health – as compared to standard support/support as usual or other control conditions.
Results
In carers of persons with schizophrenia, psychoeducational interventions were associated with significant improvement in personal burden, well-being, and knowledge about the illness; and a supportive-educational intervention with an improvement in personal burden. In carers of persons with bipolar disorder, psychoeducational interventions were associated with significant improvement in personal burden and depressive symptoms; family-led supportive interventions with an improvement in family burden; family-focused intervention and online “mi.spot” intervention with a significant reduction in depressive symptoms. Psychosocial interventions used for carers of persons with substance use disorders were found to be overall effective on the level of well-being, but the low number of trials did not allow detection of differences between the various psychosocial interventions.
Conclusions
The quality of the evidence ranged from very low to moderate, suggesting the need for further better-quality research.
This study aimed to analyze the different factors that intervene in the task of caring for relatives of people with Alzheimer’s and other dementias. A first objective focused on assessing the relation between burden and anticipatory grief, considering the possibility of social support and the risk of psychopathology. A second objective aimed to examine whether caregiver burden modulates the relationships between anticipatory grief and psychopathology. A cross-sectional design was employed.
Methods
The sample consists of 129 participants who care for a family member with Alzheimer’s and other dementias. A protocol based on a battery of tests has been applied and a mediation analysis was carried out.
Results
The results show a positive relationship between burden and anticipatory grief. Social support could have an indirect relationship with anticipatory grief, based on its effect on the level of psychopathology and caregiver burden. Finally, a modulation model reflects that the relationship between anticipatory grief and psychopathology is strong, the latter having a greater effect as a result variable than as a risk variable. However, it seems that the relationship between grief and psychopathology is better explained directly than not through the modulating effect of the caregiver burden.
Significance of results
The results obtained encourage us to think that an approach focused on intervening in the anticipatory grief may be an opportunity to reduce or buffer other caregiving outcomes, especially those related to the perception of caregiver burden and psychopathology.
We aimed to examine the burden of mental disorders in Pakistan over the past three decades. We used the crude data of disability-adjusted life-years (DALYs) obtained from the Global Burden of Disease Study database (1990–2019) to represent burden. Data were retrieved on 26 January 2021. Data for adults of reproductive age (aged 15–49 years) were analysed to discuss and interpret the disease burden. An analysis was conducted on total DALYs separately for the genders for ten mental disorders reported in Pakistan.
Results
DALYs increased drastically with the onset of reproductive age. Depressive disorder was the most reported mental disorder, contributing 3.13% (95% CI 2.25–4.24) of total DALYs, and varied significantly between genders: females 3.89% (95% CI 2.73–5.29) versus males 2.37% (95% CI 1.62–3.25).
Clinical implications
A nationwide high-quality epidemiological surveillance system should be implemented to monitor mental disorders and offer culturally appropriate preventive services.
The aim of the present cross-sectional study was to investigate the associations between caregivers’ attachment styles, family functioning, the care setting and pre-loss grief symptoms, the burden, and the caregivers’ belief of patients’ awareness of the terminal cancer diagnosis.
Methods
A total of 101 caregivers of patients with terminal cancer in residential hospice care and home care were interviewed and completed self-report questionnaires.
Results
Insecure attachment style and home care setting were associated with worse psychological effects in caregivers of patients with terminal cancer. Moreover, family cohesion can promote low social burden and the patient’s awareness of their terminal condition.
Significance of results
This study highlighted the importance of evaluating the caregiver’s attachment style, family functioning, and the setting of care during the terminal phase of the patient’s life. These findings will be useful to planning interventions to prevent burden and the pre-loss grief symptoms in the caregivers.
Family members of people with mental illness (MI) may experience a host of psychological adversities such as increased stress, burden, and reduced wellbeing. However, relatively little is known about siblings. This study aimed to characterise the experience of distress (viz. depressive and anxiety symptoms), burden, and wellbeing in siblings of people with MI.
Methods
Studies reporting on quantitative measures of depression, anxiety, burden, or wellbeing in siblings; and/or qualitative findings on siblings’ experience were eligible. The literature search was conducted up until 20th October 2022.
Results
Sixty-two studies comprising data from 3744 siblings were included. The pooled mean percentage of depressive symptoms fell in the mild range at 15.71 (k = 28, N = 2187, 95% CI 12.99–18.43) and anxiety symptoms fell in the minimal range at 22.45 (k = 16, N = 1122, 95% CI 17.09–27.80). Moderator analyses indicate that siblings of people with a schizophrenia spectrum disorder experience greater depressive symptoms than siblings of people with other types of MI (β = −16.38, p < 0.001). Qualitative findings suggest that individuals may be particularly vulnerable during their siblings’ illness onset and times of relapse. Limited communication, confusion about MI, and the need to compensate may contribute to siblings’ distress and/or burden. Siblings’ experience of wellbeing and caregiving were closely related.
Conclusion
This review highlights the complex psychological experience of siblings and the need for greater research and clinical support for this important yet often overlooked cohort.
This chapter discusses a second source of care and support policy tension – the tension between supporting the claims of carers and supporting those of people with disabilities. Organized carer movements in Australia, the UK and other liberal welfare states have argued successfully for policy support on the basis of the burden of providing intensive care to older persons and/or children and adults with disabilities. Disability studies scholars and activists have challenged this characterization of disability as an individual deficit and source of burden, arguing instead that disability is a consequence of a failure to accommodate difference and recognize the rights of people with disabilities. They have advocated instead for policies that enable people with disabilities to be independent and choose how they live. Each approach has some benefits for one constituency at the expense of others. Support for carers to ‘care’ can produce disempowering arrangements for people with disabilities, while independent living arrangements sought by people with disabilities may disempower support workers if they do not have appropriate pay and conditions. Calls for choice and independent living have also coincided with the neoliberal marketization of care and support, resulting in a narrowing of choice that is only available to some.
Community stroke rehabilitation teams (CSRT) provide an individualized home-based rehabilitation service to patients recovering from stroke.
Objective:
To examine whether there is an improvement in the social participation of patients who received a rehabilitation program provided by CSRT. The secondary objectives were to show if there is an improvement in the patients’ quality of life and a reduction in the caregiver burden.
Methods:
Retrospective cohort study, pragmatic in real-care conditions. The rehabilitation program delivered by the CSRT was adapted to the needs of the patients and caregivers. The outcome questionnaires included: the Frenchay Activity Index (FAI), the Minizarit, the EuroQol EQ5D, and the Barthel Index. The primary outcome measure was the FAI.
Results:
We included 206 patients followed by the CSRT over the 2018–2020 study period, for whom the primary endpoint was present. The mean age was 66.3 ± 12.7 years, the post-stroke delay was 16.4 ± 32.7 months, and the Barthel index was 66.42 ± 12.6. The duration of the rehabilitation program was on average 162 ± 109 days. We observed a significant improvement in the FAI, from 12.9 ± 10.4 to 17.85 ± 12.4 (p < 0.00001); in the EuroQol, from 57.51 ± 19.96 to 66.36 ± 18.87 (p < 0.00001); in the mini-Zarit, from 2.49 ± 1.75 to 2.06 ± 1.67 (p = 0.0002); and in the Barthel index, from 66.42 ± 12.67 to 84.81 ± 23.70 (p < 0.001).
Conclusion:
Patients who received a rehabilitation program by the CSRT have an improvement in their social participation, and their informal caregivers have a reduction in their burden.
Graeme Laurie stepped down from the Chair in Medical Jurisprudence at the University of Edinburgh in 2019. This edited collection pays tribute to his extraordinary contributions to the field. Graeme has often spoken about the importance of ‘legacy’ in academic work and has forged a remarkable intellectual legacy of his own, notably through his work on genetic privacy, human tissue and information governance, and the regulatory salience of the concept of liminality. The chapters in this volume animate the concept of legacy as a lens of analysis for the study and practice of medical jurisprudence. In this light, legacy reveals characteristics of both benefit and burden, as both a facilitator of and an encumbrance to the development of law, policy and regulation. Overall, the contributions reconcile the ideas of legacy and responsiveness and show that both dimensions are critical to achieve and sustain the health of medical jurisprudence itself as a dynamic, interdisciplinary and policy-engaged field of thinking.
Natural caregivers of patients with schizophrenia are often subjected to stigma by virtue of their association with patients. Affiliate stigma expose caregivers to community rejection, isolation and may have a negative impact on their psychological wellbeing.
Objectives
This study aimed to assess perceived stigma and burden in a Tunisian population of natural caregivers of patients with schizophrenia and to identify risk factors for developing such disorders.
Methods
We conducted a cross-sectional, descriptive and analytical study, including 80 natural caregivers of patients with schizophrenia. We used the Stigma Devaluation Scale (SDS) to assess stigma and the Zarit Burden Interview (ZBI) to evaluate burden.
Results
The average age of natural caregivers was 55.7 years. The sex ratio (M/F) was 0.86. The mean score of perceived stigma in patients was 24.7. That of perceived stigma in caregivers was 15.34. Assessing the burden on caregivers estimated an average score of 58, corresponding to a severe burden. Medium to high burden was found in 78% of participants. Perceived stigma scores were significantly higher among illiterate caregivers, those linking schizophrenia to hereditary causes, among parents, and in case of daily contact with the patient. Scores of perceived stigma in caregivers were also significantly correlated with burden score.
Conclusions
Natural caregivers of patients with schizophrenia are exposed to affiliate stigma and experience an important level of burden. Our findings emphasize the need to support natural caregivers of persons with schizophrenia and to develop strategies to combat stigmatization among patients as well as their natural caregivers.