Predictors of Participation Restriction in Midlife Caregivers: An Exploratory Study

Mid-life family caregivers (CGs) are at risk for participation restrictions (reduced engagement in valued roles and activities) due to competing demands of work, parenting, and family caregiving responsibilities. When CGs experience participation restrictions, quality of care for care recipients (CR) decreases, yet CG burden and risk for poor health increases. The purpose of this study was to identify the factors contributing to decreased participation in mid-life CGs. Participants were CGs aged 45-64 years (n = 677) from the National Study of Caregiving/National Health and Aging Trends Study. We used multivariate logistic regression to determine attributes of CGs, CRs, and the care situation that independently contribute to participation restrictions. We found that negative aspects of caregiving (OR = 1.51, 95% CI = 1.33, 1.71) and CR depression and anxiety (OR = 0.90, 95% CI = 0.83, 0.99) significantly predicted participation restrictions (p < 0.05). Positive aspects of care (OR = 0.87, 95% CI = 0.74, 1.01), frequency of helping with chores (OR = 1.30, 95% CI = 0.98, 1.70), frequency of providing personal care (OR = 1.24, 95% CI = 0.97, 1.59), and frequency of providing help getting around the home (OR = 1.30, 95% CI = 0.97, 1.75) showed trends for association with participation restrictions (p < 0.10). We identified factors that are related to participation restriction in mid-life CGs. Some of these factors (e.g., positive and negative aspects of caregiving, frequency of assistance provided) are potentially modifiable intervention targets that could bolster participation in this at-risk group.

THE ART OF CARING: EXPLORING HOW DEMENTIA CARE PARTNERS MANAGE CARE CHALLENGES AND FIND RESILIENCE

Approximately 15 million Americans serve as family caregivers for a person with Alzheimer’s disease or another form of age-related dementia and this care can take a physical and emotional toll. Understudied is the process of how families actually provide care in response to care challenges, and how to find respite and resilience amidst care challenges. This symposium considers how caregivers handle daily challenges related to dementia including activities of daily living, behavioral and psychological symptoms of dementia, general health and medical comorbidities. In addition to characterizing care partner’s distinct styles of management (Leggett et al.) and knowledge and capacity to manage health care (Sadak et al.), the papers also provide perspective on positive aspects of care management such as the impact of respite on positive mood (Wylie et al.), the moderating role of relationship quality on responses to behavioral and psychological symptoms of dementia (Chunga et al.) and finally how caregivers’ problem-related, self-growth, and help-related behaviors compose their resilience to care challenges (Zhou et al.). To conclude, our discussant Dr. Laura Gitlin will offer insight on cross-cutting implications across studies and offer perspective on how research, intervention science, and clinical practice may better account for caregiver management styles to promote growth and resilience in caregivers and their care partners with dementia.

The influence of psychological factors on the burden of caregivers of patients with advanced cancer: Resiliency and caregiver burden

ABSTRACTObjective:The aim of our study was to identify the influence of such psychological factors as emotional intelligence and perceived competence on caregiver burden in those who care for patients with advanced cancer.Method:A total of 50 informal caregivers completed self-report assessments of resilience, perceived competence, emotional regulation, positive aspects of care, emotional distress, and burden. We conducted a quantitative study with a cross-sectional design. Descriptive statistics were obtained. Associations between the different variables were assessed using nonparametric and multiple regression analyses.Results:Participants were mainly female (88%) and had an average of 20 months of caregiving. Their mean age was 47 years (range = 20–79). More than half of scored high on resilience, positive aspects of caring, and emotional distress, moderately on perceived competence, and low on burden. Most caregivers used cognitive restructuring and social support as coping strategies. Inverse negative correlations were observed among emotional distress, emotional state, and burden with perceived competence and positive aspects of caring (p < 0.05). Significant differences were obtained for emotional distress, cognitive restructuring, and resiliency. Multiple regression analyses demonstrated that perceived competence, resiliency, and positive aspects of caring were the main predictors of burden.Significance of Results:Resilience, perceived competence, emotional regulation, and positive aspects of care constitute protective factors against caregiver burden. Taken together, these aspects should be promoted by the healthcare staff in order to facilitate caregiver adaptation and well-being.

Dimensions of Patient Experience and Overall Satisfaction in Emergency Departments

Objective: To determine the correlation between individual patient experience dimensions and overall patient satisfaction using text-based analysis of subjective comments of patients treated in emergency departments. Methods: Open-ended comments from 331 patients who visited the emergency departments of 4 hospitals were used for coding different dimensions of patient experience. Regression coefficients were calculated to assess the relationships between dimensions of patient experiences with overall satisfaction. Results: Positive and negative experience of nursing, communications, and infrastructure influence the overall satisfaction. Positive experience attributes of overall care quality influence overall satisfaction, whereas negative experience of the same does not have any influence. Further, experiences of interactions with doctors and scheduling do not have any effect on overall satisfaction in emergency departments. Conclusions: Emergency departments may get higher overall patient evaluations by focusing on positive aspects of care, nursing, communication, and infrastructure attributes. Doctors and scheduling (emergency) may be considered as expected quality attributes and so not surprising that they did not play a role in overall satisfaction.

Distress of the Caregiver in Acquired Brain Injury: Positive aspects of care to moderate the effects of psychological problems

Acquired brain injury (ABI) causes numerous problems, including cognitive and personality changes, which can be quite stressful for caregivers. In this study, we aimed to adapt an instrument to measure caregivers’ distress, the Relative Version of the Head Injury Behaviour Scale (HIBS; Godfrey et al., 2003) to the Spanish language and to determine whether the positive aspects of caregiving moderate the effects of the psychological problems of ABI on caregivers’ distress. Moderation analyses indicated that positive aspects of caregiving involving one's outlook on life reduced the association between psychological problems and caregivers’ distress. The findings suggest that although the caregiver role is a source of distress, this role can also become a source of satisfaction, actually contributing to reducing caregivers’ distress. The importance of promoting the positive aspects of caregiving in rehabilitation programmes is discussed.

Caregiving experiences and knowledge about dementia in Portuguese clinical outpatient settings

ABSTRACTBackground: Important public health and clinical issues remain unanswered concerning disease-related knowledge and caregiving experiences in dementia. The aim of this study is to describe these dimensions in Portuguese clinical settings and analyze the link between knowledge and burden, and also between knowledge and positive caregiving experiences.Methods: We studied a non-randomized sample of 116 caregivers of outpatients with ICD10-DCR diagnosis of dementia. Comprehensive assessments included Dementia Knowledge Questionnaire (DKQ), Zarit Burden Interview (ZBI), Caregiving Activity Survey (CAS), Positive Aspects of Caregiving (PAC) and General Health Questionnaire-12 (GHQ). Portuguese translations for DKQ, ZBI and PAC scales had been developed; validity aspects were documented, as well as test-retest reliability coefficients for ZBI (ICC = 0.93) and PAC (ICC = 0.85).Results: Most caregivers were close relatives, female and living with the patient. Although positive aspects of care were reported, burden and distress levels were moderate to high. Knowledge needs were not striking. Distress was moderately correlated to burden, but no associations were found between caregivers' knowledge and ZBI, PAC or GHQ. DKQ scores did not predict PAC nor ZBI scores. A relationship was found between ZBI, as dependent variable, and PAC, GHQ and CAS.Conclusions: A large proportion of caregivers in this sample, albeit informed about dementia, were at risk of high burden and distress. Knowledge about dementia may not be protective of burden per se, nor did it influence positive aspects of caregiving.

Older male carers and the positive aspects of care

ABSTRACTOlder men are becoming more visible in care-giving research but there are still few studies that focus expressly on the extent to which care-giving has made positive contributions to their life and has been rewarding. Drawing on data from in-depth personal interviews, this Portuguese study analyses the positive statements in the personal descriptions of the care-giving experience of 53 elderly men who were caring for chronically-ill wives. It also explores the differences between the positive references made by the men who were caring for a wife who had dementia and those made by men whose wives had physical impairments. Using open coding and content analysis, positive aspects were identified in 32 of the 53 care-giving situations. The most prevalent themes were ‘satisfaction’ and ‘perceived social honour’. The findings show that positive returns from the caring experience and role were strongly associated with previous good marital relationships and the husband's good self-rated health, and manifested in both specific coping strategies and global and situational meaning-making processes. The study demonstrates that much more can be learnt about the positive dimensions of care in older men's lives, and that such understanding can inform and strengthen formal and therapeutic support.