Predicting personal self-care in informal caregivers

Caregiver research often focuses on negative health outcomes, yet little is known about the self-care practices of caregivers. The present study investigates self-care practices among family caregivers and the relationships between personal self-care, perceived stress, and other health variables. Data were collected from informal caregivers through self-administered Internet and paper surveys that included the Medical Outcomes Study Short Form 36-item Health Survey, Perceived Stress Scale, and Self-Care Practices Scale. Personal self-care was most strongly associated with emotional well-being, pain, perceived stress, and general health. The relevance of study findings to strengthening family caregiver programs and future research is discussed.     

Service use in family caregivers of persons with dementia in Belgium: psychological and social factors

This study aims to investigate whether selected social and psychological characteristics of family caregivers of persons with dementia are related to community-based service use in Belgium. Two aspects were distinguished in service utilisation: volume (number of contacts) and diversity (number of services). Within a selected region, dementia caregivers were traced via the detection of persons with dementia known to community health or social services. A probability diagnosis was made with the Geriatric Mental State and the computer algorithm AGECAT. Family caregivers of persons with dementia (N = 168) were interviewed at home by means of a structured questionnaire. Data were analysed with multiple regression analysis. Co-residence, a positive attitude towards home service use, and increased problem-solving coping were found to be direct predictors of increased diversity of services used, whereas a lower burden of behaviour problems, living apart, and increased avoidance coping were found to be direct predictors of increased volume of service use. Care recipients' behaviour problems and functional status were not found to be related to service use. The results suggest that social and psychological factors have a larger impact on service use in family caregivers of persons with dementia, compared to objective or subjective burden. Interventions to increase awareness of relevant services, to improve attitudes towards their use and support problem-solving coping in family caregivers may be considered to increase the use of appropriate services.     

Self-care experiences of Pakistani patients with COPD and the role of family in self-care: A phenomenological inquiry

Self-care enables patients in improving quality of life and reducing hospital admissions. Research explored the experiences of patients about breathlessness, sleep problems and complication management in chronic obstructive pulmonary disease (COPD). However, the self-care experiences and the role of the family in self-care are underexplored. This study aimed to understand the self-care experiences of patients with COPD and explore the role of the family in self-care. An interpretive phenomenological inquiry was used, and 13 patients were interviewed in 2019 from two hospitals in Pakistan. The inclusion criteria were patients above 30 years of age at any stage of COPD, who received a confirmed diagnosis of COPD and were receiving the treatment, and engaged in self-care at their homes or communities. The interviews lasted for 35–60 min. Ricoeur's interpretation theory was used for data analysis comprising steps explanation, naive understanding and in-depth understanding. Self-care emerged as a complex individual and familial endeavour affected by personal, social and economic factors. Poverty was one of the core determinants of self-care. Patients emphasised the spiritual, cultural and traditional approaches to self-care. Future research is warranted to develop better understanding of spiritual and cultural self-care and how these dimensions of self-care affect patients’ self-care behaviours.     

Maintaining families' well-being in everyday life

The aim of this paper is to discuss how everyday life changes for the family in the event of chronic illness or disability. It changes physically due to loss of body function and socially due to time and other constraints related to treatment or lack of mobility. Equally important, there is a psychological impact due to the uncertainty of the future. The article will explore how family participation can help to maintain well-being in everyday life. The family should therefore focus on their own needs as much as on the needs of the family members who are ill. In order to maintain well-being in everyday life, it is crucial for the family to create routines and spend time doing things that they enjoy. By doing this, the family will create a rhythm of well-being regardless of the critical family situation. Family members and professional caregivers also need to come together at the beginning and during the illness or disability event to discuss changes that could be made day-to-day for all those involved, thereby making for an easier transition into care giving.     

A socially prescribed community service for people living with dementia and family carers and its long-term effects on well-being

Support services for people with dementia are variable depending on the area or town they live. People with dementia and family carers can often get very little support after a diagnosis. Services might not be suitable or they may not be aware of the service in the first place. The aim of this study was to evaluate a socially prescribed community service provided to people with dementia and family carers offering physical and mental activities. People with dementia and family carers were recruited from a community centre in the North West of England to complete in this study. Participants provided demographic information and completed the Short Warwick-Edinburgh Mental Well-Being Scale at baseline, and after 3 and 6 months. Postcode data were used to generate an Index of Multiple Deprivation score for information on participants’ socioeconomic background. Data were analysed using paired samples t-tests to compare well-being scores between baseline and follow-up assessments. A total of 25 people with dementia (n = 14) and family carers (n = 11) participated in the service. Visits ranged from 1 to 36, with 22 and 15 participants completing the 3- and 6-month follow-up respectively. Some reasons for discontinuation were lack of transport and other commitments. Most participants lived in some of the most disadvantaged neighbourhoods. Compared to baseline, well-being was significantly higher at both follow-ups. This is one of the first studies reporting the benefits of a social prescribing service in dementia. Future implementation work needs to design an implementation plan so that the service can be implemented in other community centres across the country.     

心理韧性在癌症患者家庭韧性与主观幸福感之间的中介作用

目的 调查癌症患者主观幸福感的现状,并探讨癌症患者的家庭韧性、心理韧性与主观幸福感之间的关系,以及探索心理韧性在家庭韧性和主观幸福感之间所起的作用.方法 采用家庭韧性量表(FRAS),总体幸福感量表(GWB),心理韧性量表(RS-14)对安徽省某两所三甲医院的292名癌症患者进行调查研究.结果 癌症患者的主观幸福感得分...     

Towards conceptual convergence: A systematic review of psychological resilience in family caregivers of persons living with chronic neurological conditions

BackgroundThe demand for family caregiving in persons with chronic neurological conditions (CNCs) is increasing. Psychological resilience may empower and protect caregivers in their role. Thus, a synthesis of resilience evidence within this specific population is warranted.AimIn this systematic review we aimed to: (1) examine the origins and conceptualizations of resilience; (2) summarize current resilience measurement tools; and (3) synthesize correlates, predictors and outcomes of resilience in family caregivers of persons with CNCs.DesignWe sourced English articles published up to July 2020 across five databases using search terms involving CNCs, family caregivers and resilience.ResultsA total of 50 studies were retained. Nearly half (44%) of the studies used trait‐based resilience definitions, while about one third (36%) used process‐based definitions. Twelve different resilience scales were used, revealing mostly moderate to high‐resilience levels. Findings confirmed that resilience is related to multiple indicators of healthy functioning (e.g., quality of life, social support, positive coping), as it buffers against negative outcomes of burden and distress. Discordance relating to the interaction between resilience and demographic, sociocultural and environmental factors was apparent.ConclusionsIncongruity remains with respect to how resilience is defined and assessed, despite consistent definitional concepts of healthy adaptation and equilibrium. The array of implications of resilience for well‐being confirms the potential for resilience to be leveraged within caregiver health promotion initiatives via policy and practice.Patient or Public ContributionThe findings may inform future recommendations for researchers and practitioners to develop high‐quality resilience‐building interventions and programmes to better mobilize and support this vulnerable group.     

Orem自理理论对免疫性血小板减少症患儿心理干预效果的影响

目的 分析Orem自理理论对免疫性血小板减少症(ITP)患儿心理干预效果的影响.方法 选取2014年1月至2016年8月期间在徐州市儿童医院接受治疗的ITP患儿386例,采取随机数字表法将患儿分成对照组和实验组,对照组给予一般常规护理,实验组在对照组的基础上运用Orem自理理论进行护理干预,制订个体化的护理措施及合理的自理计划,比较两组患儿的自我管理水平、汉密尔顿焦虑量表(HAMA)及汉密尔顿抑郁自评量表(HAMD)和满意程度.结果 实验组症状管理、情绪管理、信息管理、日常生活管理、自我效能评分均高于对照组,差异具有统计学意义(t值分别为2.253、2.364、2.320、2.157、2.253,均P<0.05);护理干预后,实验组患者的评分均低于对照组(HAMA:10±3和15±4;HAMD:13±2和19±3),t值分别为2.324和2.205,均P<0.05;实验组和对照组总满意率分别为91.19%和70.47%,实验组高于对照组,差异具有统计学意义(χ2=8.367,P<0.05).结论 Orem自理理论应用于ITP患儿,能够提高患儿自我管理水平,能够改善患儿的抑郁、焦虑状态,干预效果良好.     

Predictors of anxiety in family caregivers*

The present study builds on the foundation laid in caring for family caregivers of dependent elderly persons through psycho-educational support. After briefly tracing the development of the programme and its associated evaluation research, an investigation of sociodemographic variables as predictors of caregivers' anxiety is described. In line with previous literature on caregiver stress, it was found that 461 caregivers' pretreatment negative emotional responses were closely related to high levels of anxiety in their particular situations. Less expected were the findings that length of caregiving, relationship to caregiver of care-recipient, residential arrangements, age of caregiver and disability of care-recipient did not contribute significantly to the regression analysis. Even more remarkable was the finding that the strongest predictors of anxiety were the combined factors of masculine gender, unemployment and involvement in fewer than the median number of caregiving responsibilities. Implications and recommendations for research and practice are drawn.     

A comparison of the well-being of family caregivers of elderly patients hospitalized with physical impairments versus the caregivers of patients hospitalized with dementia

OBJECTIVES: This study investigated the differences between the level of well-being of caregivers of older patients hospitalized with dementia and the well-being of caregivers of older patients hospitalized with physical impairments. It also explored the relationships between social roles, religious faith, and well-being. SETTING: Two groups were constructed to compare caregivers' well-being levels: caregivers of patients with dementia and caregivers of patients with physical impairments. The groups were caregivers of patients of two geriatric hospitals in central Israel. Patients were categorized by their medical files according to their medical diagnosis. PARTICIPANTS: A total of 107 caregivers participated in this research. Of that number, 46% were caregivers of patients with physical impairments while the other 54% were caregivers of patients with dementia. The patients with physical impairments suffered from stroke, hip fractures, Parkinson's disease, diabetes, and heart and lung diseases. The patients with dementia suffered from Alzheimer's disease or related dementia. Of the total number of patients, 67% were males and 33% were females. INTERVENTION: The caregivers were asked to fill out a questionnaire that included 90 questions. Some of the questionnaires were given to the caregivers to be filled out at home. MEASUREMENTS: The questionnaire integrated three subcategories: well-being, identity accumulation, and religious faith. RESULTS: Differences were found only in the dimensions of social activity. Caregivers of the patients with physical impairments were found to attend synagogues and clubs more than caregivers of the patients with dementia did. The number of the caregivers' social roles were found to have been significantly related to caregivers' mental health. A negative correlation was found between the intensity of religious faith and the level of the caregivers' spouses' self-rated physical and mental health: those of stronger faith rated their physical health lower and were reported to have more symptoms of stress. CONCLUSION: There are no significant differences between the level of well-being of caregivers of patients with dementia and caregivers of patients with physical impairments. Both groups of caregivers are at great risk of compromised physical and mental health, of decreased social activity, and of financial distresses. Various social roles and religious faith may enhance the caregiver's well-being. However, the spouse's religious faith has negative effects on their own well-being. These results call for welfare services and religious organizations to form support groups for family caregivers. They also make clear that all caregivers should benefit from the same social support if their older relatives are hospitalized.     

Well-being losses by providing informal care to elderly people: Evidence from 310 caregivers in Shanghai,China

A series of policies aimed toward rational resource allocation of long-term care have being actively discussed since the launch of the social long-term care insurance in Shanghai, and it is important to take a societal perspective for informed decision-making. This study aims to explore factors that are associated with well-being of informal caregivers in Shanghai, and to provide empirical evidence of application of an established well-being valuation method to monetise informal caregivers' well-being losses in a developing country. 310 informal caregivers of applicants for social long-term care insurance in Shanghai were interviewed. Univariate and multivariate analyses were conducted to explore the associated factors with life satisfaction of the caregivers. The monetary values of an additional hour of caregiving with and without specification of care tasks were estimated by the well-being valuation method. Life satisfaction was consistently associated with monthly income, health status, and caring hours of the caregivers. The money needed to compensate one additional hour of caring per week was 12.58 CNY (0.3% of the monthly income), and 96.95 CNY (2.0% of the monthly income) for activities of daily living (ADL) tasks. Income, health status, and caregiving are significantly associated with well-being of informal caregivers. Caregivers in relatively poor health condition and/or involved in more ADL tasks should be particularly considered in supporting policies in Shanghai.     

Measuring health and well-being effects in family caregivers of children with craniofacial malformations

Purpose  

This research explores the sensitivity of three generic instruments for preference-weighting health states of family caregivers of children with craniofacial malformations (CFM). We also examine the construct validity of the new CarerQol instrument measuring caregiver burden and general quality of life.     

Exploring household income as a predictor of psychological well-being among long-term colorectal cancer survivors

Purpose  The purpose of this analysis was to determine the unique contribution of household income to the variance explained in psychological well-being (PWB) among a sample of colorectal cancer (CRC) survivors. Methods  This study is a secondary analysis of data collected as part of the Health-Related Quality of Life in Long-Term Colorectal Cancer Survivors Study, which included CRC survivors with (cases) and without (controls) ostomies. The dataset included socio-demographic, health status, and health-related quality of life (HRQOL) information. HRQOL was assessed with the modified City of Hope Quality of Life (mCOH-QOL)-Ostomy questionnaire and SF-36v2. To assess the relationship between income and PWB, a hierarchical linear regression model was constructed combining data from both cases and controls. Results  After accounting for the proportion of variance in PWB explained by the other independent variables in the model, the additional variance explained by income was significant (R ² increased from 0.228 to 0.250; P = 0.006). Conclusions  Although the study design does not allow causal inference, these results demonstrate a significant relationship between income and PWB in CRC survivors. The findings suggest that for non-randomized group comparisons of HRQOL, income should, at the very least, be included as a control variable in the analysis.     

Supportive family contexts: promoting child well-being and resilience

Prevention and intervention programmes for children at risk aim to improve child well-being and resilience. They do so using both direct and indirect strategies, intervening with children but also considering broader contextual factors (such as family dynamics). Children's subjective well-being comprises five main components (physical health, mental health, self-regulation, social competence, and cognitive competence) and is predicted by person, relationship, and contextual factors. Children's resilience, or ability to beat the odds under adverse conditions, is predicted by similar protective factors. Family well-being (FWB) is one of the strongest and most consistent predictors of child well-being and resilience. Aspects of FWB (including adult health and well-being, family self-sufficiency, and family resiliency) have been shown to impact child well-being through positive parent–child interactions. However, risk factors (including poverty and living in geographic locales with limited resources or high levels of neighbourhood violence) can threaten both family and child well-being. Strategies are offered for promoting FWB as a means of supporting resilience and well-being in children at risk for violence, abuse, or neglect.     

Attitudes,myths, and realities: Helping family and professional caregivers cope with sexuality in the Alzheimer's patient

Alzheimer's is an afliction of more than the individual. Even as the individual's incapacitation grows, associated caregivers, usually the spouse, also experience tremendous lifestyle changes. Intimacy is a frequent casualty amidst feelings of sadness, anger, confusion, depression, grief and loss. This paper examines how knowledge about the course of the disease enhances tolerance and empathy, mediating some of the situation's negatives with regard to the changing physical and psychological relationship. It more specifically looks at discrepencies between the acceptability of sexual behaviors in homes versus in residential facilities.