Caregiving Demands Research Articles

THE ROLE OF RELATIONSHIP FACTORS IN HARMFUL CAREGIVER BEHAVIORS: OLDER CHILDREN CARING FOR PARENTS WITH DEMENTIA

Abstract Elder abuse by family caregivers is an often-overlooked phenomenon that affects many older adults. Especially, retirement-aged children caring for their oldest-old parents with dementia may be at greater risk of engaging in harmful or abusive behaviors, given their own age-related health issues and other competing caregiving demands. Most of the elder abuse literature has focused on general demographic predictors of elder abuse, regarding the caregiver, care recipient, and the care environment. Less attention has been paid towards relationship factors, which may play a large role among these parent-child dyads. This study examined how relationship factors are associated with potentially harmful caregiver behaviors (PHCB; e.g., screaming), which have been identified as “early warning signs” for elder abuse. Relationship factors of interest include positive and negative relationship quality measured by caregivers’ mean scores on the support and conflict subscales on the Quality of Relationship Inventory (QRI). We conducted in-depth interviews with 88 caregivers (65+) who are caring for their parents with dementia (90+) as the part of the Boston Aging Together Study. Regression models revealed that relationship conflict was significantly associated with higher levels of PHCB, accounting for caregiver, care recipient, and care environment characteristics. The creation of screeners to identify “high conflict” care dyads could prove useful in the early detection and intervention of potential elder abuse cases, given that caregivers may be more willing to report negative aspects of their relationship (e.g., fighting) than more obviously harmful or abusive behaviors.

IT WAS TERRIBLE, I DIDN'T SLEEP FOR TWO YEARS: A MIXED-METHODS EXPLORATION OF SLEEP AMONG HOSPICE FAMILY CAREGIVERS

Abstract Due to overnight caregiving demands and inadequate social support, over 1.2 million hospice family caregivers in the U.S. and millions more worldwide are at risk of poor sleep and resulting negative effects on health. Sleep problems are a modifiable source of global health inequities. The purpose of this study was to describe hospice family caregiver sleep experiences, efforts to improve sleep, and effects of sleep. Developed using the Symptom Management Model, this mixed methods study featured a concurrent nested design prioritizing qualitative reflexive thematic analysis. In 2021, 47 family caregivers of hospice care-recipients from two randomized clinical trials in the United States (NCT03712410, NCT02929108) were interviewed. Sleep-related questions from PHQ-9 and GAD-7, and self-rated health and energy were administered at baseline. Three themes emerged: quality of sleep, factors influencing sleep, and effects of sleep. Hospice family caregivers commonly experienced “interrupted” sleep with frequent night-waking due to “on-call” “vigilance” and anxiety overnight and, sometimes, in bereavement. Negative effects included exhaustion, mental and physical health decline, and reduced performance. 72.5% described sleep quality as “fair” or “poor.” At baseline, 35.5% of caregivers were bothered by trouble falling asleep, staying asleep, or sleeping too much at least “more than half the days” in a week. Caregivers were reluctant to take sleep medications. Over half quit jobs or reduced work hours to provide care; few reported adequate support. Hospice family caregivers commonly experience disordered sleep with negative effects. Clinicians must assess sleep, offer tailored sleep interventions, and provide more supports to hospice family caregivers.

FAMILY PREPAREDNESS AT HOSPITAL DISCHARGE OF THE PERSON LIVING WITH DEMENTIA

Abstract Family care partners face increased and more complex caregiving demands at the time of hospital discharge for persons living with dementia. This study examined family care partners’ needs for preparation and factors associated with the degree of preparation for caregiving. Care partners who were younger (t=3.26, p=.001), demonstrated anxiety (t= 2.6, p=.010) and depression (t =4.6, p <.001), and were caring for a person in pain (t=2.3, p=.023) had lower scores on the Preparation for Caregiving Scale. Care partners described the least preparation to care for the patients’ emotional needs (M= 2.8, SD=1.2) and deal with the stress of caregiving (M= 2.7, SD=1.2). Content analysis of nurses’ transitional care notes converged with these findings, while also describing a lack of preparation to advocate for information from medical providers. Findings suggest the need to attend to the psychological and informational needs of care partners, while considering patient well-being and comfort.

Leaving for living? Factors and dynamics behind Bangladeshi female migration to the Gulf states

ABSTRACT The paper explores the factors that cause female labour migration to the Gulf states from Bangladesh. Grounded on Amartya Sen’s concept of well-being in terms of capability and Marta Nussbaum’s further interpretation on that, the paper focuses on the cases of Bangladeshi returned and intended female domestic workers and analyses the factors influencing the decision of transnational labour migration. The study follows a qualitative method including in-depth semi-structured interviews, coupled with some focus group discussions, participant observation, and secondary data analysis. The paper unveils different external and internal factors influencing women’s decision on migration. Global demand for female domestic workers and caregivers is rising in many nations. In response to that, many countries including Bangladesh have relaxed restrictions on women’s transnational labour migration and facilitate their involvement in the global care industry. Furthermore, socio-economic, and personal drivers play a role for migrating to the Gulf states.

The demands of caregivers of children with acute lymphoblastic leukaemia in different therapy stages and the exploration of possible interventions: A longitudinal investigation survey at a Tertiary Medical Institution.

To describe the demands of family caregivers of children with ALL at different therapy stages and explore the possible interventions to address their care demands. A longitudinal investigation study. A total of 157 family caregivers of children treated in the Haematological oncology ward of a tertiary medical hospital in China between March and December in 2020 were included in this study. The Comprehensive Needs of Caregivers of Cancer Patients and Families Taking Care of Children Scale was used to investigate the family caregivers of children with ALL. The family caregivers completed the questionnaire accompanied by a researcher within two weeks of each therapy stage, which included the induction, consolidation and continuation stages. Family caregivers of children with ALL had many demands that varied based on the stage of therapy. Family caregivers in the induction therapy stage needed more information about their children's disease, having the highest score in information demands (35.60 ± 5.85). The family caregivers in the consolidation therapy stage needed more information on symptom management and socio-economic support, having the highest score in care and support demands (36.14 ± 5.12). The family caregivers in the continuation therapy stage (including interim and maintenance therapy stages) focused more on their own and the children's social adaptation, so they scored the highest for psychosocial demands (35.96 ± 5.69). Family caregivers of children with ALL had different demands that varied based on the stage of therapy. Medical personnel should be aware of the primary needs of family caregivers at different therapy stages to provide early interventions and support based on their demands, ultimately improving the physical and mental condition of family caregivers and the quality of care.

The Experience of Parental Caregiving for Children With Medical Complexity.

Children with medical complexity (CMC) have complex chronic conditions with significant functional impairment, contributing to high caregiving demand. This study seeks to explore impacts of parental caregiving for CMC. Fifteen caregivers of CMC followed at a tertiary care hospital participated in semi-structured interviews. Interviews were concurrently analyzed using a qualitative description framework until thematic saturation was reached. Codes were grouped by shared concepts to clarify emergent findings. Four affected domains of parental caregiver experience with associated subthemes (in parentheses) were identified: personal (identity, physical health, mental health), family (marriage, siblings, family quality of life), social (time limitations, isolating lived experience), and financial (employment, medical costs, accessibility costs). Despite substantial challenges, caregivers identified two core determinants of personal resilience: others' support (hands-on, interpersonal, informational, material) and a positive outlook (self-efficacy, self-compassion, reframing expectations). Further research is needed to understand the unique needs and strengths of caregivers for this vulnerable population.

Family Caregivers of Adult Cancer Patients in Oman: Predictors of Caregivers' Self-efficacy for Cancer Pain and Related Symptom Management at Home.

Family caregivers (FCGs) contribute significantly to the management of pain and other symptoms experienced by their family member with cancer and may not receive preparation to meet the changing patient needs. The aim of this study was to identify the predictors of FCG self-efficacy (SE) for pain and related symptom management of adult family members with cancer. Data were collected from 165 Omani FCGs. The questionnaire comprised the caregiver cancer pain and related symptom management SE scale, the Katz index, Caregiver Reaction Assessment, and Family Pain Questionnaire. Electronic medical records provided data on patients' cancer diagnosis, pain, and symptoms. Predictors of SE were examined using linear regression analysis. Most FCGs were female (58.2%) and children of the patient (53.9%). Most patients were on chemotherapy or palliative care (82.4%) and had at least stage 3 cancer (58.8%). Family caregivers reported average SE. The predictors of SE were as follows: patients' functional status (β = 40.90, P = .001), patients' pain intensity (β = -15.10, P = .036), FCGs' confidence in controlling the patients' pain (β = 28.80, P = .000), FCGs' self-rated health (β = -25.90, P = .038), and interaction of FCGs' knowledge level with patients' pain intensity (β = -1.31, P = .008), caregiving hours (β = -0.10, P = .025), and impact of caregiving on FCGs' physical health (β = 1.29, P = .031). Family caregivers' health status, knowledge, caregiving demands, patient functional status, and pain intensity have a significant effect on caregivers' symptom management. A deliberate model of care that includes supportive interventions to enhance the abilities of FCGs with symptom management is needed in Oman.

Formal care of the elderly and health outcomes among adult daughters.

Health-care expenditures and the demand for caregiving are increasing concerns for policy makers. Although informal care to a certain extent may substitute for costly formal care, providing informal care may come at a cost to caregivers in terms of their own health. However, evidence of causal effects of care responsibilities on health is limited, especially for long-term outcomes. In this paper, we estimate short and long-term effects of a formal care expansion for the elderly on the health of their middle-aged daughters. We exploit a reform in the federal funding of formal care for Norwegian municipalities that caused a greater expansion of home care provision in municipalities that initially had lower coverage rates. We find that expanding formal care reduced sickness absence in the short run, primarily due to reduced absences related to musculoskeletal and psychological disorders. The reduction in sickness absence is concentrated among workers with little work flexibility (e.g., shift workers), whereas there are no effects for workers with more flexible jobs. We were unable to detect effects on long-term health and healthcare utilization outcomes. Our results imply that sickness absence uptake could be hiding a need for more flexibility around work for people with caregiving responsibilities.

Gendered Impact of Caregiving Responsibilities on Tenure Track Faculty Parents' Professional Lives.

Navigating a career while raising a family can be challenging, especially for women in academia. In this study, we examine the ways in which professional life interruptions due to child caregiving (e.g., opportunities not offered, professional travel curtailed) affect pre- and post-tenure faculty members' career satisfaction and retention. We also examine whether sharing caregiving responsibilities with a partner affected faculty members' (particularly women's) career outcomes. In a sample of 753 tenure track faculty parents employed at a large research-intensive university, results showed that as the number of professional life interruptions due to caregiving increased, faculty members experienced less career satisfaction and greater desire to leave their job. Pre-tenure women's, but not pre-tenure men's, career satisfaction and intention to stay were negatively affected when they experienced at least one professional life interference. Pre-tenure men's desire to stay in their job and career satisfaction remained high, regardless of the number of professional life interferences they experienced. Sharing parenting responsibilities with a partner did not buffer the demands of caregiving on pre-tenure women's career outcomes. Our work highlights the need to consider the varied ways in which caregiving affects faculty members' careers, beyond markers such as publications, and how institutions can support early career stage women with family-friendly practices.

The lived experience of carers who assist people with disability in Ernakulam, Kerala, India

Purpose Family members are preferred providers of care for people with disability in India. Despite this, research which evaluates the impact of caregiving is limited. This qualitative study provides a comprehensive, in-depth exploration of the lived experience of carers who provide assistance to persons with a disability in Southwest India. Methods In this qualitative study, 20 carers who assist persons with disability were purposively selected to undertake semi-structured interviews across a variety of domains. Data analysis was informed by Attride-Stirling’s thematic network analysis. Results Five global themes were identified which included; carers commitment to caring; concurrent demands of caregiving; mental and physical health of carers; networks and sources of non-financial support; and finances – strains and supports. Conclusions This study provides an in-depth exploration of the lived experience of carers in Kerala, India which will inform the future development of interventions to assist primary carers. Implications for rehabilitation Family members are preferred providers of care for people with disability in India. By understanding the issues that affect carers who assist people with disability, it is possible to develop more effective, targeted, and sustainable interventions, that meet the needs of carers and alleviate some of their burden. Improving the health and wellbeing of carers needs to be urgently addressed in order to improve outcomes for those with disability – whom they care for.

Exploring Caregiver and Parental Roles as Radiation Oncologists in Canada

<h3>Purpose/Objective(s)</h3> Caregiving and parental responsibilities present multiple challenges for physicians including personal, family, professional, and financial. Our objective was to describe the experiences of Canadian radiation oncologists (RO) with caregiving/parental roles and to illustrate challenges that exist, whilst dealing with professional work. <h3>Materials/Methods</h3> An online survey was administered (November – January 2022) to registered staff RO members of the Canadian Association of Radiation Oncology (CARO). The survey consisted of 57 multiple choice and 7 open-ended questions on demographics, parental and other family caregiver roles. Descriptive statistics summarized survey responses and thematic analysis was used to analyze open-ended questions. Qualitative data was analyzed using SAS with Chi-square and Wilcoxon rank sum tests, a two-sided p-value of <0.05 was deemed statistically significant (SS). <h3>Results</h3> Of the 271 CARO members, 103 staff RO responded (38%): 45% female and 55% male. Most participants were <50 years old (78, 76%), Canadian MD graduates (75, 73%) with <15-years of practice (76, 74%). The majority (76%) of respondents identified as having a parental and/or non-parental caregiving role (8%). There was no difference between respondents' gender and number of children (median 2 (range: 1-4), p=0.5). A SS higher proportion of females compared to males took parental leave for each pregnancy, with more females (71%) receiving financial support (employment insurance, employer contribution and/or paid vacation) compared to males (44%) for the 1^st and 2^nd parental leave only. Median duration of parental leave by female's vs males for 1^st and 2^nd child was 26 vs 4 weeks and 22 vs 4 weeks. Half of female respondents (52%) identified as having a positive parent mentor at work compared to 26% of male respondents (p=0.02). A higher proportion of females described having a child negatively impacted their career (50% vs 28%, p=0.06) with similar gender proportions describing attendance at conferences (77% vs 65%, p=0.3) and early/late work meetings (79% vs 76%, p=0.7) affected by having children. Respondents described balancing work-life, dealing with sudden illness of children and bringing children to pre- and post-school activities as examples of daily challenges experienced. Few respondents (8%; 4 females, 4 male) identified having a non-parental caregiving role, with 6 (75%) having both dependent child and adult caregiving roles. Challenges identified in caring for an older adult included taking time off during work hours to attend medical appointments, older adult being unable to drive, and ongoing medical concerns. <h3>Conclusion</h3> Caregiving and parental responsibilities are not gender unique, but competing work and family roles may impact genders differently. Further studies to understand the gender differences and to determine strategies to support and address ongoing challenges of RO's balancing career and family caregiving demands are required.

Applying a social-ecological model to understand factors impacting demand for childhood vaccinations in Nigeria, Uganda, and Guinea

Vaccines have reduced child mortality across the world, but low levels of demand for vaccination threatens to undermine progress. Existing frameworks to understand demand tend to prioritise primary caregivers' decision-making processes. We aimed to build a wider understanding of vaccine demand by applying an adapted socio-ecological model to analyse 158 interviews with primary caregivers and fathers of young children, and community influencers in Nigeria, Uganda, and Guinea. We found that several factors come together to inform a primary caregiver's demand for vaccination, including their familial and social relationships, their interactions with government and healthcare institutions, and the wider social and cultural norms in their communities. The study suggests that interventions targeted at families and communities instead of individuals could be effective. The results could be used to ensure that vaccine demand frameworks used by researchers and intervention designers are comprehensive and consider a wider range of influences on the primary caregiver.

“There's no amount of tea in the world that is going to fix the patriarchy right now”: The gendered impacts of the COVID-19 pandemic for women in the gender-based violence sector

• The COVID-19 pandemic re-entrenched the gendered, de-valued roles that women occupy in society. • Staying in shelter during the pandemic hindered autonomy and decision-making for mothers. • Staff and leaders working at GBV agencies experienced increased caregiving demands and stress. • Self-care narratives during the pandemic trivialized the experiences of women working in the GBV sector. • There was an absence of a gendered lens for systems and organizations in policy decisions impacting the GBV sector.

“It was terrible, I didn’t sleep for two years”: A mixed methods exploration of sleep and its effects among family caregivers of in-home hospice patients at end-of-life

Background: Due to overnight caregiving demands; exacerbation of high rates of anxiety, depression, and distress; and inadequate support, millions of family caregivers of patients receiving in-home hospice are at risk of poor sleep and negative health effects. Aim: To describe sleep experiences of family caregivers of in-home hospice patients and perceptions of these experiences on caregivers’ wellbeing in the context of caregiver health and live-in status. Design: Developed using the Symptom Management Model, this mixed methods study featured a concurrent nested design prioritizing qualitative reflexive thematic analysis. Setting/participants: About 47 family caregivers of in-home hospice patients from two randomized clinical trials (NCT03712410, NCT02929108) were interviewed (United States, 2021). Anxiety (GAD-7), depression (PHQ-9), quality-of-life (QOL) (CQLI-R), and self-rated health and energy were reported prior to interviews. Results: Qualitative analysis revealed three themes: compromised sleep quality, factors influencing sleep, effects of sleep. 72.5% of hospice family caregivers described “fair” or “poor” sleep quality, with “interrupted” sleep and frequent night-waking due to “on-call” “vigilance” and anxiety. Negative effects included exhaustion, mental and physical health decline, and reduced caregiver function. Live-in caregivers reported higher mean depression scores (8.4 vs 4.3, p = 0.08), higher mean anxiety scores (7.7 vs 3.3, p = 0.06), and lower mean QOL scores (24.8 vs 33.6, p < 0.001) than live-out caregivers. Anxiety, depression, and QOL worsened as self-reported caregiver sleep quality decreased. Few caregivers had adequate support. Conclusion: End-of-life family caregivers experience disrupted sleep with negative effects and inadequate support. Clinicians must assess sleep, offer sleep interventions, and provide more supports to hospice family caregivers.

Influence of child’s autism on relationships

Background: Although the world has been witnessing a steady increase in the autism population, there is a paucity of research on the maternal experiences of caregiving a child with autism. Aim: The rationale of this study is to explore the maternal experiences of children with autism in Kerala, India. Materials and Methods: Ten mothers of children with autism were interviewed and the transcripts were analyzed using interpretative phenomenological analysis. Findings: Two superordinate themes were identified in the analysis: a) deteriorating marriage, and b) deteriorating social relations. Mothers in the study were affected by their child’s autism, as it reflected on their personal, marital and social aspects of life. Mothers had conspicuous marital strain due to the increasing demands of caregiving and child’s autism influenced their family planning decision-making. Mothers were blamed for their child’s autism and discriminative and judgmental behaviours from the public restricted their social participation. The findings provide an understanding of the maternal experiences in raising a child with autism in Kerala. Conclusion: These findings can be useful for researchers, healthcare providers and policy makers to provide support and address the issues faced by the mothers in raising children with autism.

Mental Health Benefits and Detriments of Caregiving Demands: A Nonlinear Association in the Canadian Longitudinal Study on Aging.

This study examines whether the association between caregiving demands and mental health is non-linear and also, whether this non-linear association is contingent on the marital status of the caregiver. We analyze the data from the Canadian Longitudinal Study on Aging, applying OLS regression and quadratic interaction terms. A lower level of demands is salubriously associated with symptoms of depression and life satisfaction, but this association becomes deleterious at higher levels of demands. Moreover, a connection to a marital partner extends the benefits of caregiving demands and stems the adverse consequences. This research shows that acts of caregiving may not themselves be detrimental. Instead, the degree and way in which caregiving relates to mental health may vary by both the extent of the demands of the caregiving role and familial relationships in which caregivers are embedded.

Modifiable factors of depressive-symptom trajectories from caregiving through bereavement

Background/purposeThe purpose of this secondary-analysis study was to identify never-before-examined factors associated with distinct depressive-symptom trajectories among family caregivers from end-of-life caregiving through the first 2 bereavement years.Participants/methodsParticipants (N=661) were family caregivers who provided end-of-life caregiving for terminally ill cancer patients. Multinomial logistic regressions were conducted to identify modifiable factors associated with caregivers’ seven previously identified depressive-symptom trajectories: minimal-impact resilience, recovery, preloss-depressive-only, delayed symptomatic, relief, prolonged symptomatic, and chronically persistent distressed. Drawing from the stress-appraisal-coping model, modifiable time-varying factors associated with distinct depressive-symptom trajectories were examined in three domains: (1) stressors, (2) stress appraisal, and (3) available resources (internal coping capacity and external social support).ResultsProfound objective caregiving demands were associated with caregivers’ increased likelihood of belonging to more distressing depressive-symptom trajectories than to the minimal-impact-resilience trajectory. But, stronger negative appraisal of end-of-life caregiving increased odds of caregiver membership in preloss-depressive-only and relief trajectories over the recovery, delayed, and prolonged-symptomatic trajectories. Stronger internal coping capacity and perceived social support buffered the tremendous stress of end-of-life caregiving and permanent loss of a relative, as evidenced by higher odds of being in the minimal-impact-resilience and recovery trajectories.ConclusionFamily caregivers’ distinct depressive-symptom trajectories were linked to their preloss caregiving demands, appraisal of negative caregiving impact, personal coping capacity, and perceived social support. Our results highlight actionable opportunities to improve end-of-life-care quality by boosting family caregivers’ coping capacity and enhancing their social support to help them adequately manage daily caregiving loads/burdens thus relieving the emotional toll before patient death and throughout bereavement.

Challenging behaviour in children with developmental disabilities: an overview of behavioural assessment and treatment methods

SUMMARYChallenging behaviours often co-occur at high rates among those with autism spectrum disorder and intellectual disability. Challenging behaviours, including self-injury, aggression and property destruction, can be associated with social impairment and increased caregiver demands and stress. These behaviours often arise from and are maintained by a combination of biological and environmental risk factors throughout the lifespan. Given the impact of challenging behaviours on development, function-based assessment and intervention approaches are crucial. The prevalence, risk factors, assessment tools and evidence-based treatment options utilised for individuals with developmental disorders are discussed.

Protocol: the complexity of informal caregiving for Alzheimer's disease and related dementias in rural South Africa.

With aging, many people develop Alzheimer's disease or related dementias (ADRD) as well as chronic physical health problems. The consequent care needs can be complicated, with heavy demands on families, households and communities, especially in resource-constrained settings with limited formal care services. However, research on ADRD caregiving is largely limited to primary caregivers and high-income countries. Our objectives are to analyse in a rural setting in South Africa: (1) how extended households provide care to people with ADRD; and (2) how the health and wellbeing of all caregivers are affected by care roles. The study will take place at the Agincourt health and socio-demographic surveillance system site of the MRC/Wits Rural Public Health and Health Transitions Research Unit in Mpumalanga Province, northeast South Africa. We will recruit 100 index individuals predicted to currently have ADRD or cognitive impairment using data from a recent dementia survey. Quantitative surveys will be conducted with each index person's nominated primary caregiver, all other household members aged over 12, and caregiving non-resident kin and non-kin to determine how care and health are patterned across household networks. Qualitative data will be generated through participant observation and in-depth interviews with caregivers, select community health workers and key informants. Combining epidemiological, demographic and anthropological methods, we will build a rich picture of households of people with ADRD, focused on caregiving demands and capacity, and of caregiving's effects on health. Our goal is to identify ways to mitigate the negative impacts of long-term informal caregiving for ADRD when formal supports are largely absent. We expect our findings to inform the development of locally relevant and community-oriented interventions to improve the health of caregivers and recipients, with implications for other resource-constrained settings in both higher- and lower-income countries.

Parents with intellectual disability reporting on factors affecting their caregiving in the wake of the COVID-19 pandemic: A qualitative study.

BackgroundParents with intellectual disability are vulnerable to parenting stress and overwhelming life events. The COVID‐19 pandemic constitutes a potentially overwhelming event, but there is little knowledge concerning the effects on parents' caregiving. The present study aimed to fill this gap.MethodSemi‐structured interviews with 10 Swedish parents with intellectual disability were analysed using thematic analysis.ResultsOne broad caregiving‐related theme: increased caregiving demands and reduced resources for coping resulting in strained parent–child interactions and relationships. Four subthemes highlighted influential factors: pandemic information, professional support, social relationships and informal support, and children's school activities. Strained parent–child interactions were particularly common in the absence of adapted pandemic information, if professional and informal support were compromised, and if the parents had dealt with school‐related changes.ConclusionsFindings support contextual models of caregiving and a stress‐resources perspective, and emphasise the importance of adapted information and support to parents with intellectual disability during crises.