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Long term conditions

The following resources examine the care needs and issues for carers of people with chronic long term conditions.

Click on the title of any resource to find out more about the source of the information such as the type of reference, ISBN/ISSN, publication year, keywords. A number of these fields can be used to find further resources i.e. with the same keywords, or by the same author using the links on the right-hand side and within the Key Information box.

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Problematic caregiving activities among family carers of older adults with disabilities

Background: Family carers of older adults with disability often both experience stress that may affect their ability to provide care, and find some caregiving activities differentially challenging. Objectives: The objectives of this research are to identify the caregiving activities that are most problematic to carers and to explore the reasons why carers found these activities challenging. Methods: Participants were past or current carers aged 19 years and older. Using an explanatory sequential mixed-methods approach, data were collected through a survey and open-ended interviews. Findings: Thematic analysis revealed that an activity was likely to be more problematic if it had to be coordinated with other caregiving needs or where a care recipient's disability was severe.

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Prevalence and factors associated with psychological distress among family caregivers: A cross‐sectional study

Purpose: This study was aimed to examine the prevalence and factors associated with psychological distress among Saudi family caregivers. Design and Methods: This was a cross‐sectional, descriptive correlational study conducted on 163 participants. The Kessler Psychological Distress Scale‐6 was used to collect data. Bivariate and multivariate analyses were run in SPSS. Findings: Results indicated that psychological distress was significantly associated with employment status, education level, monthly money spent on caring, time spent on caregiving, and chronic disease type variables. Practice Implications: Implementing effective programs to raise family caregivers' understanding of psychological distress and improve their engagement in treatment is important.

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Predictors of health service use by family caregivers of persons with multimorbidity

Background: Informal caregivers of patients with multiple chronic conditions are socially good, promoting the sustainability of a large part of home care provision. However, this very demanding activity causes health problems that increase their own need for health services. This study analyses the use of health services by informal carers, comparing it with the use made by the general population with similar characteristics. Methodology: Cross‐sectional analytical study carried out in the Malaga‐Valle Guadalhorce Primary Health Care District (Spain). Healthcare demand and perceived health were measured in the family caregivers, compared to the general population. Strobe Statement for observational studies has been used to strength the report of the results. Results: Final sample consisted of 314 family caregivers together with a subsample of 2.290 non‐caregivers taken from data of the National Health Survey. This subsample was paired by gender with our sample. Formal caregivers make fewer annual visits to the health services, with respect to the general population, regardless of the perceived level of health. The difference of the means between those who perceive their health as very poor was 0.11 (95% CI: 0.01 to 0.20) consultations with the family doctor, 0.21 (95% CI: 0.15 to 0.26) consultations with medical specialists and 1.70 (95% CI: 1.52 to 1.87) emergency room attention. Three independent factors were identified that predispose to the increased use of health services: background of greater education achievement (OR 8.13, 95% CI: 1.30 to 50.68), non‐cohabitation with the care recipient (OR 3.57, 95% CI: 1.16 to 11.11) and a more positive physical quality of life component (OR 1.06; 95% CI: 1.03 to 1.09). Discussion and Implications: Intrinsic components of the caregiver reveal their independent relationship with the provision of informal care and the use of health services. A broader vision is needed for the factors that influence the health of these caregivers to develop multipurpose interventions and improve the consistency and effectiveness of the health services offered to the caregiver.

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Predictors of Caregiver Burden in Huntington's Disease

Objective: Huntington's disease (HD) is a genetic neurodegenerative condition that is characterized by cognitive, motor, and psychiatric dysfunction. Objectives: The purpose of this study was to explore which disease characteristics influence caregiver burden in HD. Methods: Fifty participants with HD and 50 of their caregivers participated in the study at the University of South Florida. Participants were administered a neuropsychological battery, the Unified Huntington's Disease Rating Scale (UHDRS) motor exam, and the Frontal Systems Behavior Scale (FrSBe) self-report. Caregivers completed the Caregiving Appraisal Scale and the FrSBe family-report. Results: There were significant correlations between caregiver burden and caregiver age and sex, UHDRS motor scores, cognitive functioning, and self and caregiver-reported FrSBe scores. The significant variables were entered into a regression model and explained 63.1% of the variance in caregiver burden scores. Caregiver age, cognitive functioning, and caregiverreported FrSBe scores continued to be significant predictors of caregiver burden, whereas the other variables were no longer significant. Conclusions: There were significant relationships between caregiver burden, cognitive functioning, and frontally mediated behaviors, but not motor scores. The results suggest that possible interventions for caregiversmay include education to caregivers on howto cope with apathy/executive dysfunction and cognitive decline. Caregiver agewas associated with burden, with younger age being associated with increased burden when controlling for symptom severity. This has implications for this population in that HD typically has a younger age of onset than other neurodegenerative diseases and therefore, these caregivers may be particularly at risk for caregiver burden.

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Participation in Informal Caregiving Among People With Arthritis: Findings From a Canadian Longitudinal Study on Aging

Objective: Despite the joint pain and significant dysfunction that characterizes arthritis, many people with arthritis continue to carry out everyday duties and responsibilities. The objective of the present study was to describe participation in informal caregiving (unpaid assistance to someone with a health issue or limitation) among people with arthritis. Methods: Analysis of baseline data from the Canadian Longitudinal Study on Aging (CLSA), a nationally representative sample of people ages 45–85 years (n = 21,241), was performed. A questionnaire covering sociodemographic, health, and caregiving variables was completed by each study participant. Caregiving variables examined characteristics of the person who received the most care from the questionnaire respondent, as well as the types of caregiving (e.g., hands-on versus hands-off tasks) and amount of care provided (e.g., hours per week). Results: There was no difference in the proportion of people with and without arthritis who provided informal care (46%). Individuals with arthritis reported worse health, but this did not affect the likelihood of providing care, nor the types or amount of care provided. Caregivers with and without arthritis were most likely to provide fewer than 7 hours per week of care, and the most common type of care was characterized as hands-off, particularly transportation assistance. Men were just as likely to provide care as women but were less likely to provide high intensity care or perform hands-on tasks. Conclusion: Despite reporting worse health on average, people with arthritis were just as likely as people without arthritis to provide informal care. The need to provide informal care among people with arthritis may impact their ability to engage in self-management activities for their arthritis. 

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More GP contacts and poorer health of informal caregivers with low socioeconomic status in Germany: Results from the population-based DEGS1 and the cross-sectional GPCare-1 study

Objectives: Informal caregivers are known to have poorer mental health. Risk factors for caregiver burden include low education, female gender, cohabitation with the care recipient and lack of resources. General practitioners (GPs) have an important role in supporting caregivers. Methods: Drawing on data from two surveys, associations between caregivers' socioeconomic status (SES), psychophysical health and GP contacts are analysed. Design Cross-sectional study. The study draws on data from two surveys (German Health Interview and Examination Survey for Adults, DEGS1 and General Practice Care-1, GPCare-1). Setting Germany. Participants DEGS1: German general population (18+ years) n=7987. GPCare-1: general practice patients (18+ years) n=813. Primary outcome Psychophysical health, GP contacts and communication. Methods Using representative DEGS1 data, the prevalence of informal caregivers, caregivers' burden, chronic stress, various health conditions and frequency of GP contacts were evaluated stratified by SES. Data from the GPCare-1 study addressed caregivers' experiences and communication preferences with GPs. Results: In the DEGS1, the prevalence of caregivers was 6.5%. Compared with non-caregivers, caregivers scored significantly higher for chronic stress (15.45 vs 11.90), self-reported poor health (37.6% vs 23.7%) and GP visits last year (3.95 vs 3.11), while lifestyle and chronic diseases were similar. Compared with caregivers with medium/high SES, those with low SES had a significantly lower prevalence of high/medium caregiver burden (47.9% vs 67.7%) but poorer self-reported health (56.9% vs 33.0%), while other characteristics did not differ. In the GPCare-1 study, the prevalence of caregivers was 12.6%. The majority of them felt that their GP takes their problems seriously (63.6%) without difference by SES. Conclusion: Caregivers with low SES constitute an especially high-risk group for psychological strain, requiring special GP attention to support their needs. 

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Optimizing the Meaningful Engagement of Older Adults With Multimorbidity and Their Caregivers as Research Partners: A Qualitative Study

Background: It is widely recognized that the engagement of older adults with multimorbidity and their caregivers as partners in health care research is important and invaluable. Objectives: The objective of this study was to examine how researchers can best engage and support older adults with multimorbidity and informal friend or family caregivers of older adults with multimorbidity as research partners in health care research teams. Methods: The persona-scenario method was used for participants to create fictional stories. These stories were analyzed to shed light on specific strategies that can support older adults and caregivers as partners on health care research teams, such as a patient-centered approach, identifying and addressing barriers to engagement, and clarifying roles and responsibilities on the research team. Results and conclusions: The results from this study can be used to inform research, policy, and education on supporting older adults with multimorbidity and caregivers of older adults with multimorbidity as research partners. 

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Interventions to Support Informal Caregivers of People with Chronic Obstructive Pulmonary Disease: A Systematic Literature Review

Background: Chronic obstructive pulmonary disease (COPD) imposes tremendous challenges for both patients and informal caregivers. Caregivers are key players in the management of COPD. Recently, COVID-19 further increased reliance on informal caregivers who urgently need specific support. Objectives: This systematic literature review aimed to systematically describe the content and explore the effects of interventions to support informal caregivers of people with COPD. Methods: A mixed-methods systematic review was conducted. PubMed, Scopus, Web of Science, and EBSCO were searched. Studies implementing interventions supporting informal caregivers of people with COPD were included. Data were extracted and analysed in outcome domains and categories using framework analysis. Results: Twenty (14 quantitative, 4 mixed-methods, and 2 qualitative) studies were included. Informal caregivers were mainly female (86%). Caregiving context was poorly/never described. Interventions included patient-caregiver dyads and never caregivers only. Informal caregivers were invited to participate if available. Interventions were delivered across all COPD phases (acute/stable/advanced) and settings (inpatient/outpatient/home), with a wide range of total length, frequency, and duration of sessions. All included education about the disease and its management. Discharge/action plans (n = 12); adherence to therapy and healthy lifestyles (n = 9); and family concerns and psychosocial issues (n = 7) were also commonly addressed. Only 9 (45%) studies reported caregiver-related outcomes, and overall positive effects were observed in 7/9 outcome domains, using a high variety of qualitative and qualitative methods. Often categories were addressed but not assessed. Conclusion: Interventions have a narrow scope (i.e., education) and have not been specifically designed to support informal caregivers. Current evidence showed positive effects, but high methodological heterogeneity exists. Future studies need to explore caregiver-tailored, taking into consideration gender differences; multicomponent; and flexibly administered interventions to effectively support COPD caregivers. 

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Informal carers in Sweden – striving for partnership

Background: Informal carers have an important role in society through their care and support of their long-term ill relatives. Providing informal care is challenging and can lead to caregiver burden; moreover, many support needs of the carers are not met, leading to confusion, disappointment and frustration. We conducted an interview study to clarify the meaning of support given and received by informal carers to relatives with chronic obstructive pulmonary disease or chronic heart failure. Methods: We purposively selected and recruited informants via participants in another study, thereby conducting interviews over the phone from June 2016 to May 2017. In total, we conducted 14 interviews with 12 informants. All interviews were transcribed verbatim and the content was analysed using a phenomenological hermeneutical approach. Result and conclusion: Our comprehensive understanding of the meaning of support for these carers is twofold: it is a self-evident struggle for the good life of their relatives and that they want to be carers in partnership. The healthcare system must recognize the efforts of carers and include them in the strategic planning and operational stages of care and treatment for people with long-term illness.

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Income-related inequalities in informal care: Evidence from the longitudinal healthy longevity survey in China

Objectives: This report aims to examine income-related inequalities in informal care among older people with functional limitations in China. Methods: Data are drawn from the 2005, 2008, 2011, and 2014 waves of the Chinese Longitudinal Healthy Longevity Survey. Erreygers concentration index, concentration index, and horizontal inequity index are used to examine inequalities in informal care. A random effects model is then used to investigate the relationship between household income and informal care. Results: There is no significant association between household income and the probability of receiving informal care. However, we observed a significant positive association between household income and hours of informal care received, indicating that those with higher household income receive more hours of informal care compared to those with lower household income. The degree of this inequality increases as the number of functional limitations increases. Discussion: Lower household income is associated with lower intensity of informal care received, particularly for older people with more functional limitations. Policies are required to support low-income older people with more functional limitations. 

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Impacts and Burden of Niemann pick Type-C: a patient and caregiver perspective

Background: Niemann-Pick disease type C (NPC) is a debilitating condition that impacts patients’ and caregivers’ quality of life (QOL) and reduces the patient’s life expectancy. Objectives: Since there is little qualitative research from the perspective of patients and family caregivers, this study explored the impact of NPC on patients’ and caregivers’ daily lives to understand the burden of disease. Results: A survey of caregivers for patients with NPC and adult patients with NPC (n = 49; patient age: 13 months–65 years) assessed NPC severity, importance of NPC symptoms, and how symptoms impacted patients’ and caregivers’ activities of daily living (ADLs) and health-related QOL (HRQOL). Follow-up interviews with a subset of survey participants (n = 28) explored the ranking of NPC symptom importance and impact on ADLs and HRQOL. Findings indicated that the most important manifestations of NPC were ambulation, swallowing, speech, fine motor skills, and cognition, which were those that had the most significant impact on ADLs and HRQOL. A wide range of ADLs were affected by NPC, mainly eating/drinking and the ability to perform daily tasks, including self-care, communicating, participating in school or work, and moving indoors as well as outside the home. Along with these impacts, there was an increased risk of experiencing dangerous or life-threatening situations leading to loss of patient independence and additional caregiver burden, often requiring changes in lifestyle such as giving up work. All aspects of patients’ and caregivers’ HRQOL were affected. Participants reported feelings of social isolation, loss of enjoyment in activities (patients), and feelings of sadness or worry (caregivers). Conclusions: Ambulation, swallowing, speech, fine motor skills, and cognition are important manifestations of NPC. ADLs and HRQOL were impaired in the majority of patients as well as their caregivers. The findings were independent of current age, age of onset of symptoms, and level of NPC disease-related disability; however, the impact increased at higher levels of disease disability. Knowing the impact of NPC on patients and caregivers is important for understanding the lived experience of NPC and for identifying potential areas of support. 

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Health-Related Quality of Life: A Comparative Analysis of Caregivers of People with Dementia, Cancer, COPD/Emphysema, and Diabetes and Noncaregivers, 2015-2018 BRFSS

Background: Many informal caregivers experience significant caregiving burden and report worsening healthrelated quality of life (HRQoL). Caregiver HRQoL may vary by disease context, but this has rarely been studied. Objectives: Informed by the Model of Carer Stress and Burden, we compared HRQoL outcomes of prevalent groups of caregivers of people with chronic illness (i.e., dementia, cancer, chronic obstructive pulmonary disease [COPD]/emphysema, and diabetes) and noncaregivers and examined whether caregiving intensity (e.g., duration and hours) was associated with caregiver HRQoL. Methods: Using 2015-2018 Behavioral Risk Factor Surveillance System data, we identified caregivers of people with dementia (n = 4,513), cancer (n = 3,701), COPD/emphysema (n = 1,718), and diabetes (n = 2,504) and noncaregivers (n = 176,749). Regression analyses were used to compare groups. Results: Caregiver groups showed small, nonsignificant differences in HRQoL outcomes. Consistent with theory, all caregiver groups reported more mentally unhealthy days than noncaregivers (RRs = 1.29-1.61, ps < .001). Caregivers of people with cancer and COPD/emphysema reported more physically unhealthy days than noncaregivers (RRs = 1.17-1.24, ps < .01), and caregivers of people with diabetes reported a similar pattern (RR = 1.24, p = .01). However, general health and days of interference of poor health did not differ between caregivers and noncaregivers. Across caregiver groups, most caregiving intensity variables were unrelated to HRQoL outcomes; only greater caregiving hours were associated with more mentally unhealthy days (RR = 1.13, p < .001). Conclusions: Results suggest that HRQoL decrements associated with caregiving do not vary substantially across chronic illness contexts and are largely unrelated to the perceived intensity of the caregiving. Findings support the development and implementation of strategies to optimize caregiver health across illness contexts. 

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Reciprocal burden: Adults with drug-resistant epilepsy reflect upon informal caregiver support (vol 89, pg 85, 2021)

Objectives: To explore how a sample of people with uncontrolled seizures describe their experiences of receiving informal supportive care. Methods: Using constructivist grounded theory, in-person, semi-structured interviews were conducted in 35 adults with drug-resistant epilepsy. These 20 (57%) women and 15 (43%) men were aged 18–68 years (mean= 35.6 years), with a range of verbal comprehension scores. The majority, 28 (80%) lived in nuclear family settings. Results: Unpredictable seizures disrupted personal autonomy and generated unique challenges for everyday life. While supportive care was deemed necessary to survival, subjective reflections around the implications of care-receiving and caregiving, were ultimately experienced as mutually burdensome. Four dynamic and interactive dimensions revealed a mirrored, interactive perspective of what it meant to be a care-recipient: assuming responsibility; protecting and supervising; acknowledging reliance and setting boundaries. Care-recipience was not one-sided, but included actively hiding personal struggles as a way to shield the caregiver from the emotional and physical demands of caregiving. Relationship dynamics between caregivers and care-recipients played a major role in treatment decision-making. A clinically useful Theory of Reciprocal Burden resulted from our study. Conclusions: This study adds an explanatory dimension to the concept of illness burden from the perspective of care-recipients. Relationship dynamics play a key role in patient-centered epilepsy care, with clinical implications for guiding supportive caregiving, fostering independence and promoting self-management strategies.

 

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Family caregivers’ perceived communication self-efficacy with physicians

Objective: Family-centered health care requires successful communication between patient, family caregivers, and healthcare providers. Among all providers, physicians are most likely to interact with caregivers. Using the Family Caregiver Communication Typology, this study examined perceived communication self-efficacy with physicians among four types of caregivers: Manager, Partner, Carrier, and Lone. Method: A cross-sectional online survey included the Family Communication Typology Tool, Communication Perceived Self-Efficacy Scale, the Caregiver Quality of Life-Revised Index, and the Generalized Anxiety Disorder (GAD-2) questionnaire. Results: An online survey of 220 family caregivers currently caring for an adult family member revealed significant differences in communication self-efficacy among family caregiver communication types, revealing that Partner caregivers have the highest perceived communication self-efficacy, and that for some caregiver types, higher perceived communication self-efficacy is associated with certain quality of life dimensions. Conclusions: Differences in communication self-efficacy with physicians among the four caregiver communication types (Manager, Partner, Carrier, and Lone) provide further evidence that the typology represents variance in caregiver communication abilities. Development of future medical curricula targeting communication skill training should include an overview of the typology and communication strategies as these may increase effective communication between physicians and caregivers.

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Factors associated with informal caregiving and its effects on health, work, and social activities of adult informal caregivers in Malaysia: findings from the National Health and Morbidity Survey 2019

Background: The increase in the elderly population, chronic and degenerative diseases, as well as accidents at work and on the road in Malaysia would result in an increased demand for informal care. Objectives: This paper aimed to determine the associated factors of informal caregiving and its effects on health, work and social activities of adult informal caregivers in Malaysia. Methods: The data from the 2019 National Health and Morbidity Survey (NHMS), a nationwide cross-sectional survey with a two-stage stratified random sampling design, was used in this research. The study included respondents who were 18 years and older (n = 11,674). Data were obtained via face-to-face interviews using validated questionnaires. Descriptive and complex sample logistic regression analyses were employed as appropriate. Results: 5.7% of the adult population were informal caregivers. Provision of informal care were significantly associated with the female sex (OR = 1.52, 95% CI [1.21, 1.92]), those aged 36–59 years (OR = 1.61, 95% CI [1.15, 2.25]), and those who reported illness in the past 2 weeks (OR = 1.79, 95% CI [1.38, 2.33]). The risk of having their health affected were associated with female caregivers (OR = 3.63, 95% CI [1.73, 7.61]), those who received training (OR = 2.10, 95% CI [1.10, 4.00]) and those who provided care for 2 years or more (OR = 1.91, 95% CI [1.08, 3.37]). The factors associated with the effects on work were ethnicity, received training and had no assistance to provide the care. In terms of effect on social activities, female caregivers (OR = 1.96, 95% CI [1.04, 3.69]) and caregivers who received training were more likely (OR = 2.19, 95% CI [1.22, 3.93]) to have their social activities affected. Conclusion: Our study revealed that sex, age, and self-reported illness were factors associated with being an informal caregiver in Malaysia. Informal caregivers faced effects on their health, work, and social activities which may be detrimental to their well-being. This understanding is crucial for planning support for caregivers.

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Psychological consequences for family caregivers of patients receiving hemodialysis: threat or opportunity?

Background: Family caregivers of patients receiving hemodialysis experience physical and psychological disorders. They are unfortunately neglected. Objectives: The aim of this study was to explain the psychological consequences for family caregivers of patients receiving hemodialysis. Methods: This qualitative inductive conventional content analysis research approach was conducted in Tehran, Iran. Nineteen hemodialysis patient caregivers were enrolled via purposive sampling. Data collection was conducted through in-depth and semi-structured interviews until reaching data saturation. All interviews were recorded, transcribed, imported into the Open Code Software, and analyzed using the Graneheim and Lundman methods. Results: The results included two main categories: (1) threats to the psychological integrity; (2) development of capabilities. The first main category comprised the sub-categories of “care-related negative feelings and emotions,” care-related stress and its behavioral impacts on care, “psychological disorders arising from care provision,” and “impaired quality and quantity of sleep.” The second main category comprised of the sub-categories of “care-related positive feelings and emotions” and “coping strategies.” Conclusions: The present study showed that though caring for hemodialysis patients threatens the caregiver’s psychological integrity, it provides the opportunity of development capabilities. 

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Supporting families and carers of people living with multiple sclerosis: a rapid realist review and realist evaluation

Background: Supportive interventions are needed for the family and carers of people with multiple sclerosis. Methods: A rapid realist review and realist evaluation explored what helps, who it helps, when and how. Literature analysis was synthesised with a thematic analysis of qualitative interviews and focus groups with 49 family and carers of people with multiple sclerosis. Results: The resulting model summarised a family of interventions that could help people develop their capabilities and expand their resources, resulting in more positive outcomes. Conclusions: This may prevent or delay a 'tipping point' where capacity to care is overwhelmed by caring roles.

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Exploring learning processes associated with a cancer pain self-management intervention in patients and family caregivers: A mixed methods study

Objectives: Explore learning processes associated with a psychoeducational pain selfmanagement intervention. Background: Self-management of cancer pain is challenging for patients and their family caregivers (FCs). While psychoeducational interventions can support them to handle these tasks, it remains unclear how learning processes are hampered or facilitated. Methods: A convergent parallel mixed methods design with qualitative data collection embedded in a randomized controlled trial (RCT) was used. Outpatients with cancer and FCs were recruited from three Swiss university hospitals. The six-week intervention consisted of education, skills building, and nurse coaching. Quantitative data on pain management knowledge and self-efficacy were analyzed using multilevel models. Patients and FCs were interviewed post-RCT regarding their learning experiences. Qualitative data analysis was guided by interpretive description. Finally, quantitative and qualitative data were integrated using case level comparisons and a meta-matrix. Results: Twenty-one patients and seven FCs completed this study. The group-by-time effect showed increases in knowledge (p = 0.035) and self-efficacy (p = 0.007). Patients' and FCs' learning through experience was supported by an intervention nurse, who was perceived as competent and trustworthy. After the study, most intervention group participants felt more confident to implement pain self-management. Finally, data integration showed that declining health hampered some patients' pain self-management. Conclusions: Competent and trustworthy nurses can support patients' and FCs' pain self-management by providing individualized interventions. Using a diary, jointly reflecting on the documented experiences, and addressing knowledge deficits and misconceptions through the use of academic detailing can facilitate patients' and FCs' learning of critical skills.

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Stress and Coping Among Family Caregivers of Patients With a Destination Therapy Left Ventricular Assist Device: A Multicenter Mixed Methods Study

Background: Family caregivers of patients with a destination therapy left ventricular assist device play a central and formalized role in postimplant care. Objectives: We aimed to characterize longitudinal stress, predictors and correlates of stress, and coping processes among left ventricular assist device caregivers. Methods: We performed a sequential, exploratory, mixed-methods study from 6 diverse left ventricular assist device programs. The primary outcome for the quantitative analysis was the Perceived Stress Scale-10 at 6 months (0-40). Based on the quantitative findings and guided by the Transactional Model of Stress and Coping, semistructured interviews explored causes of stress and coping processes. Integration was performed during the qualitative and interpretation phase. Results: A total of 96 caregivers met inclusion criteria for quantitative analysis. Mean (SD) Perceived Stress Scale score was 14.3 (5.5) preimplant and 11.8 (6.9) at 6 months. Preimplant, only decreased preparedness for caregiving was associated with higher Perceived Stress Scale score at 6 months. At 6 months, increased caregiver depressive symptoms, decreased caregiver preparedness for caregiving, and lower patient quality of life were associated with higher Perceived Stress Scale score. Qualitative analysis of 25 caregivers revealed the causes of stress coalesced around 3 themes: (1) lack of preparedness to be a caregiver, (2) uniqueness of stress for the caregiver and patient situation, and (3) caregiving responsibilities physically and emotionally impacting caregivers. To cope with stress, most caregivers employed emotion-focused coping. Conclusions: In family caregivers of patients with a left ventricular assist device, higher perceived stress was associated with lower caregiver preparedness, higher caregiver depressive symptoms, and lower patient quality of life. Emotion-focused coping strategies were common for caregivers. Future work should better prepare caregivers for this role and support them through the caregiving experience. Registration: URL: https://www.clinicaltrials.gov; Unique identifier: NCT02344576.

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The Supportive Care Needs of Primary Caregivers of Lung Transplant Candidates

Background: Caring for people with advanced illness has an impact on caregivers' physical, psychological, and emotional health. Patients being evaluated for lung transplantation or those on the transplant waitlist are required to have identified social support. However, little is known about the caregivers' specific supportive care needs. Objective: The aim of this study was to determine the supportive care needs of informal caregivers of patients who are being evaluated for or awaiting lung transplantation. Methods: A cross sectional survey of the caregivers of lung transplant candidates using the Carers' Support Needs Assessment Tool (CSNAT) was conducted. Results: The sample (n = 78) included caregivers from a single-center academic institution in the United States. Participants were predominantly Caucasian and female, mean age 58 years (SD:13). Most were the patient's spouse or partner and over half reported needs in the following areas: what to expect in the future; who to call with healthcare concerns; financial, legal and work issues; and caregivers' feelings and worries. When asked if they need more support in these areas, up to one-third indicated they needed "quite a bit more" or "very much more," with substantial needs regarding what to expect in the future, who to call with healthcare concerns, and financial, legal, or work issues. Conclusion: A substantial portion of lung transplant caregivers express need for more support. Future research should focus on testing strategies to promote regular assessment of these needs and examining the effectiveness of interdisciplinary interventions to address them.

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Exploring experiences of family caregivers for older adults with chronic illness: A scoping review

Background and objectives: A Scoping Review was conducted to explore key issues that underpin the experiences of family caregivers of older adults with chronic illness. The review aims to identify the gap in literature and synthesise evidence on this topic. Globally, family caregivers of older adults with chronic illness experience burden. Evidence suggests that family caregivers’ needs are poorly understood and remain largely under recognised by healthcare services. Moreover, little is known about the experience of family caregivers caring for older adults with multiple chronic conditions. Methods: Data bases used included: (EBSCOhost, CINAHL, Science Direct, SCOPUS, MEDLINE, PubMed, ISI web of science and grey literature. 3352 records were identified, 58 full-text articles were assessed for eligibility, and 11 papers included in the literature review. Data are narratively synthesized. Conclusions: This review provides findings that suggest further research. 

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Exploration of caregiver experiences of conservatively managed end‐stage kidney disease to inform development of a psychosocial intervention: The acorn study protocol

Background: End‐stage kidney disease (ESKD) is an overwhelming illness that impacts not just patients, but also their informal carers. Patients who opt for conservative management rather than dialysis experience difficult symptoms and the psychosocial consequences of their condition. Informal carers of patients who choose conservative management can also experience high levels of psychosocial burden, yet there is little guidance on how best to support informal carers, and no evidence on psychosocial interventions to address unmet needs.  Objectives: The aim of this study is to explore the experiences and unmet needs of informal carers of patients with ESKD receiving conservative management in order to inform the development of a psychosocial intervention. Methods: This qualitative study will consist of three stages: (I) semi‐structured interviews with informal carers in England and Northern Ireland, (II) focus groups with healthcare professionals and informal carers, and (III) national workshops to refine the components of a psychosocial intervention. Discussion: Informal carers of patients with ESKD who are receiving conservative management experience a high psychosocial burden, but there is limited evidence on how best to provide support, particularly as the patient nears the end of life. To our knowledge this study will be the first to address this gap by exploring the experiences and unmet needs of informal carers, with the aim of informing the development of a psychosocial intervention to support the health and wellbeing of informal carers. 

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Every Cloud Has a Silver Lining: Exploring Experiential Knowledge and Assets of Family Caregivers

Background: Family caregivers of patients with chronic conditions often subject themselves to drastic life changes. The quality of life of the caregivers often decreases noticeably at the beginning of the caregiving trajectory, because they typically reorient their lives to focus on the patient's health status. As a result, previous studies viewed caregivers primarily as people who need help and focused on how technologies can support them. However, in our study, we found that caregivers are also capable of developing their own experiential knowledge and strategies, which have been invisible in previous caregiver studies. Methods: By conducting in-home interviews with fourteen family caregivers, we present the types of new knowledge and coping strategies family caregivers have developed from their lived experiences during everyday caregiving tasks. Findings: These include 1) establishing new mindsets, 2) developing mindful activities, 3) building relationship management strategies, and 4) sharing experiences with people in their own networks. Conclusions: Based on our findings, we call for an asset-based approach that will help researchers notice the capabilities of caregivers. This approach could enable researchers to be more reflexive in the incorporation of caregivers' devalued knowledge within their system designs. 

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Hispanic Caregivers' experience of pediatric type 1 diabetes: A qualitative study

Background & Objective: It is widely recognized that Type 1 Diabetes (T1D) outcomes are worse among Hispanic children; however, little is published about the perspectives of these patients and their caregivers. Our intent was to characterize the lived experience of Hispanic caregivers of children with T1D, focusing on the role of language and culture and their perspectives on current medical care and alternative care models. We studied Hispanic caregivers of patients (age 2–17 years) with T1D of greater than 6 months' duration. Research Design and Methods: We completed semi-structured interviews and focus-groups of a purposive sample of 20 members of our population of interest. We developed a codebook and completed multidisciplinary consensus coding, then conducted iterative thematic analysis using qualitative software and discussion to generate themes. Results: We gathered data from 20 Hispanic caregivers of T1D patients (11.37 ± 3.00 years old, 4.80 ± 2.84 years since diagnosis). 85% of caregivers were female, 80% preferred Spanish, and 15% were college-educated. Our analysis yielded 4 themes across the participants: (1) Culturally-based nutrition challenges, (2) Social isolation and lack of support for T1D care, (3) Hesitancy to fully embrace diabetes technology, and (4) Deferential views of care experience and providers. Overarching all of these themes was support for Hispanic group-based models of care tailored to address these concerns. Conclusions: The unique concerns among Hispanic caregivers of children with T1D suggest the importance of culturally tailored interventions to improve care. With successful implementation, such interventions could diminish widening disparities in healthcare outcomes. 

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The Association of Positive or Negative Religious Coping Methods With Psychological Distress and Quality of Life Among Parents of Infants With Congenital Heart Disease

Objective: The purpose of this study was to evaluate whether positive and negative religious coping methods were associated with psychological distress and quality of life in parents of infants with congenital heart disease (CHD). Methods: This descriptive, cross-sectional study was conducted at a provincial hospital in Fujian, China. Clinical data from 115 parents of infants with CHD were collected. Chinese Sociodemographic Forms, Brief RCOPE, Beck Depression Interview (BDI), and the Short Form Health Survey (SF-36) were used in this study. Results: The sex of caregivers in infants with CHD was an independent predictor of BDI scores. The positive religious coping score and the negative religious coping score were both independent predictors of the BDI score (beta = -5.365, P = 0.006 and beta = 4.812, p = 0.017). The correlation between the quality-of-life scores and positive or negative religious coping scores indicated that positive religious coping scores were significantly positively correlated with Vitality, Social Functioning, and Mental Health scores. There was a significant negative correlation between negative religious coping scores and mental health scores. Conclusions: Positive or negative religious coping methods may be associated with psychological distress and quality of life among parents of infants with CHD. It is suggested that more attention should be devoted to the influence of religious coping methods on parents of infants with CHD, and the use of religious resources should be encouraged.

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Labor market participation and productivity costs for female caregivers of minor male children with Duchenne and Becker muscular dystrophies

Introduction/Aims: Duchenne and Becker muscular dystrophies (DBMD) are X-linked neuromuscular disorders characterized by progressive muscle weakness, leading to decreased mobility and multisystem complications. We estimate productivity costs attributable to time spent by a parent caring for a male child under the age of 18 y with DBMD, with particular focus on female caregivers of boys with Duchenne muscular dystrophy (DMD) who have already lost ambulation. Methods: Primary caregivers of males with DBMD in the Muscular Dystrophy Surveillance and Research Tracking Network (MD STARnet) were surveyed during 2011–2012 on family quality of life measures, including labor market outcomes. Of 211 respondents, 96 female caregivers of boys with DBMD were matched on state, year of survey, respondent's age, child's age, and number of minor children with controls constructed from Current Population Survey extracts. Regression analysis was used to estimate labor market outcomes and productivity costs. Results: Caregivers of boys with DBMD worked 296 h less per year on average than caregivers of unaffected children, translating to a $8816 earnings loss in 2020 U.S. dollars. Caregivers of boys with DMD with ≥4 y of ambulation loss had a predicted loss in annualized earnings of $23,995, whereas caregivers of boys with DBMD of the same ages who remained ambulatory had no loss of earnings. Conclusions: Female caregivers of non-ambulatory boys with DMD face additional household budget constraints through income loss. Failure to include informal care costs in economic studies could understate the societal cost-effectiveness of strategies for managing DMD that might prolong ambulation. 

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Investigating the relationship between quality of life and hope in family caregivers of hemodialysis patients and related factors

Background: Family caregivers of hemodialysis patients are the first and most crucial source of care at home. They experience many problems in the care of hemodialysis patients, which can affect their quality of life and hope, affecting the quality of care provided to patients. Objectives: This study aimed to determine the relationship between quality of life and hope in family caregivers of hemodialysis patients. Methods: A cross-sectional (descriptive-analytical) study performed on 300 family caregivers in the east of Mazandaran province in Iran. Data were collected using the Family Caregiver Quality of Life (FQOL), SF8 and adult hope scale. Data analysis was performed in SPSS version 16, and a P-value of below 0.05 was considered statistically significant. Results: The results showed that, there was a direct and significant relationship between hope and quality of life. However, the quality of life was significantly lower in suburban residents, the unemployed, spouses, people with lower education and income levels, caregivers who cannot leave their patients alone, those living with their patients in the same house, and those taking care of male patients, compared to other participants (P < 0.05). Suburban residents, the unemployed, people with an insufficient level of income, and those living with their patients in the same house had significantly lower hope, compared to other subjects. Conclusion: Since an increase of hope and quality of life of caregivers can cause improved quality of patient care, it is recommended that hope-based educational programs and interventions be implemented for caregivers. 

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The Palliative Care Information Needs of Patients with Amyotrophic Lateral Sclerosis and their Informal Caregivers: A Scoping Review

Background: Amyotrophic Lateral Sclerosis (ALS) is a fatal neurodegenerative disease, associated with impaired quality of life for patients and caregivers. As treatment is largely supportive, early involvement of palliative care (PC) is recommended as standard of care. Despite this, literature surrounding PC information needs is limited. Objectives: To explore the PC information needs of patients with ALS and their caregivers and identify gaps in the literature. Methods: A scoping review using MEDLINE, EMBASE, CINAHL and PsycINFO databases (2000-2019) was conducted. Articles examining PC information needs as stated by ALS patients and/or current/bereaved caregivers were included. Studies examining other diagnoses and those focused on healthcare workers were excluded. Thematic synthesis was used to summarize and identify prevalent domains and themes in the literature. Results: 581 articles underwent primary screening, with thirty-two ultimately included (26 original articles, six reviews). Fourteen examined information needs of both patients and caregivers, 13 caregivers only, 5 patients only. The most common PC information needs were as follows: for patients, disease course/prognosis (n = 10), general disease information (n = 9), decision-making (n = 7) and symptoms (n = 6); for caregivers, services and resources (n = 15), disease course/prognosis (n = 14), general disease information (n = 13) and skills (n = 10). There was substantial variability in information needs, both between patients and caregivers and among members of the same group. Conclusion: ALS patients and caregivers have unique and varying PC information needs. Future research should better characterize these needs to improve patient and caregiver quality of life. The delivery of information must be tailored to individual patient or caregiver preferences. 

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The Perspectives of Patients with Chronic Diseases and Their Caregivers on Self-Management Interventions: A Scoping Review of Reviews

Background: Self-management (SM) interventions are supportive interventions systematically provided by healthcare professionals, peers, or laypersons to increase the skills and confidence of patients in their ability to manage chronic diseases. Objectives: (1) to summarise the preferences and experiences of patients and their caregivers (informal caregivers and healthcare professionals) with SM in four chronic diseases and (2) to identify and describe the relevant outcomes for SM interventions from these perspectives. Methods: We conducted a mixed-methods scoping review of reviews. We searched three databases until December 2020 for quantitative, qualitative, or mixed-methods reviews exploring patients’ and caregivers’ preferences or experiences with SM in type 2 diabetes mellitus (T2DM), obesity, chronic obstructive pulmonary disease (COPD), and heart failure (HF). Quantitative data were narratively synthesised, and qualitative data followed a three-step descriptive thematic synthesis. Identified themes were categorised into outcomes or modifiable factors of SM interventions. Results: We included 148 reviews covering T2DM (n = 53 [35.8%]), obesity (n = 20 [13.5%]), COPD (n = 32 [21.6%]), HF (n = 38 [25.7%]), and those with more than one disease (n = 5 [3.4%]). We identified 12 main themes. Eight described the process of SM (disease progression, SM behaviours, social support, interaction with healthcare professionals, access to healthcare, costs for patients, culturally defined roles and perceptions, and health knowledge), and four described their experiences with SM interventions (the perceived benefit of the intervention, individualised care, sense of community with peers, and usability of equipment). Most themes and subthemes were categorised as outcomes of SM interventions. Conclusion: The process of SM shaped the perspectives of patients and their caregivers on SM interventions. Their perspectives were influenced by the perceived benefit of the intervention, the sense of community with peers, the intervention’s usability, and the level of individualised care. Our findings can inform the selection of patient-important outcomes, decision-making processes, including the formulation of recommendations, and the design and implementation of SM interventions. 

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Effects of a social support family caregiver training program on changing blood pressure and lipid levels among elderly at risk of hypertension in a northern Thai community

Background: Hypertension is becoming increasingly prevalent among the elderly. Family caregivers play an important role in caring for elderly people and empowering them to care for themselves. Objectives: This study’s goal was to see how social support training for family caregivers affected changes in hypertension, total cholesterol, and high-density lipoprotein (HDL), and how such support led to the prevention of hypertension behaviors among the elderly in rural areas. Methods: This was a quasi-experimental study with 268 elderly people at risk of hypertension and their caregivers. Sixty seven pairs of elderly people and their caregivers were assigned to the intervention and control groups. Baseline data were collected in November 2020. The intervention group received the Social Support Family Caregiver Training Program (SSFCTP), while the control group received a regular program from the local health authority. The activity lasted 12 weeks, with home visits and telephone check-ups along the way, and data collection took place after the program ended. The final data were collected three months after the end of the intervention. Results: An analysis of repeated measures ANOVA showed the overall effect of the SSFCTP on knowledge, self-efficacy, health care behaviors, and blood pressure among elderly people during three different time periods (p<0.05). Furthermore, the intervention program had a time-dependent effect on knowledge, blood pressure, and total cholesterol levels (p<0.05). In terms of caregiver outcomes, there was an overall difference among the degrees of knowledge, self-efficacy, and behaviors toward health care displayed by elderly hypertensive patients during the three different time periods (p<0.05). The average knowledge and self-efficacy of the participants improved after the intervention. As a result, better self-care behaviors and lower blood pressure and total cholesterol levels were observed among the elderly participants after the intervention. Conclusions: The programs emphasized the importance of caregivers’ roles in providing social support, boosting confidence, and encouraging participation in caring, monitoring, and assisting the elderly in controlling blood pressure and other health issues.

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Dyadic Research of Patients and Their Family Caregivers in the Context of Chronic Illness: Current Status and Challenges

Objectives: This narrative review aims to provide an introduction and overview of dyadic research within the context of chronic illness. In addition, some methodological considerations and future directions for conducting dyadic research are presented. Methods: The focus of this review is on adult participants in dyads and with chronic illness based on the previous studies and literatures on dyadic science. Results: Theory of Dyadic Illness Management and Dyadic Regulation-Connectivity Model (DR-CM) may be appropriate for performing dyadic research. At present, there is a lack of qualitative and quantitative knowledge on the dyadic approach for research on chronic diseases. Dyadic health interventions for building collaborative relationships within a dyad may be beneficial to improve dyadic health outcomes. This article addressed some of the challenges regarding recruitment, data collection, and analysis when it comes to planning dyadic research pertaining to chronic illnesses. Conclusion: Healthcare professionals should prioritize needs and preferences at the dyadic level when designing effective chronic disease management. Particularly, it is critical to regularly monitor the dyadic relationships or type of dyadic care during illness trajectories. More research should be undertaken on patient-family caregiver dyads in chronic care, considering the various types of chronic diseases and cultural diversities. 

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Do caregivers who connect online have better outcomes? A systematic review of online peer-support interventions for caregivers of people with stroke, dementia, traumatic brain injury, Parkinson's disease and multiple sclerosis

Background and Objectives: This systematic review aimed to identify and appraise the evidence for online peer-support interventions for caregivers of stroke survivors (with and without aphasia), and people with dementia, traumatic brain injury (TBI), Parkinson's disease and multiple sclerosis. Research Design and Methods: Systematic review conducted in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Five databases were systematically searched up until September 2020: EMBASE, PubMed, CINAHL, Scopus and Web of Science. Two reviewers independently screened titles, abstracts and full-text articles. The methodological quality of included studies was assessed using Physiotherapy Evidence Database (PEDro) and Mixed-Methods Appraisal Tool (MMAT) scales. Interventions were described using the Template for Intervention Description and Replication (TIDieR) checklist. Results: A total of 3026 records were identified from database searches. Following screening, 18 studies reporting 17 interventions were included in this review. Most studies (n = 13) reported interventions for caregivers of people with dementia. All studies incorporated an element of peer support as part of the intervention, however, most interventions (n = 15) comprised both psychosocial and educational elements. Statistically significant changes were reported for 11 interventions in one or more of the following domains: caregiver knowledge, mental health, stress, depression, distress, burden, self-efficacy, mastery, helplessness and perceived support. Qualitative outcomes included perceived reductions in stress and increased emotional and informational support. Discussion and Implications: Positive changes in caregiver outcomes were identified in response to multi-component online interventions (i.e., peer support in addition to education). Peer support was often poorly described, limiting the conclusions that could be drawn about the intervention components which result in better outcomes. Online interventions may provide an accessible and effective means of supporting caregivers.

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Development and Psychometric Testing of the Caregiver Self-Efficacy in Contributing to Patient Self-Care Scale

Objectives: Caregiver self-efficacy-a caregiver's belief in his/her ability to contribute to patient self-care-is associated with better patient and caregiver outcomes in single chronic conditions. It is, however, unknown if caregiver self-efficacy improves patient and caregiver outcomes in multiple chronic conditions (MCCs) because there is no instrument to measure this variable. We developed the 10-item Caregiver Self-Efficacy in Contributing to patient Self-Care (CSE-CSC) scale for that purpose, and we tested its psychometric characteristics in caregivers of patients with MCCs. Methods: In this cross-sectional multisite study, we tested the structural validity of the CSE-CSC scale with exploratory and confirmatory factor analysis, and we tested construct validity by correlating CSE-CSC scores with those of the Caregiver Contributions to Self-Care of Chronic Illness Inventory. We also tested reliability, and precision of the CSE-CSC scale. Results: The 358 enrolled caregivers (mean age 54.6 years; 71.5% female) cared for patients with an average of 3.2 chronic conditions. Structural validity was good, and it showed 2 factors within the scale. Construct validity showed significant correlations between scores of the CSE-CSC scale and the Caregiver Contributions to Self-Care of Chronic Illness Inventory. Reliability coefficients were between 0.90 and 0.97. Measurement error yielded satisfactory results. Conclusions: The CSE-CSC scale is valid, reliable, and precise in measuring caregiver self-efficacy in contributing to patient self-care in MCCs. Because caregiver self-efficacy is a modifiable variable, the CSE-CSC scale can be used in clinical practice and research to improve patient and caregiver outcomes.

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Determinants of the need for respite according to the characteristics of informal carers of elderly people at home: results from the 2015 French national survey

Background: The demographic and social changes associated with population aging and the increasing incidence of chronic diseases underscore the importance of the role of informal carers. The number of informal carers is increasing and negative consequences associated with providing care, such as burnout, are known. However the influence of socioeconomic and psychological factors on the need for respite have not been well characterized to date. Informal care represents an essential component of health care systems and long-term care. Objectives: The purpose of this study was to shed light on how the characteristics of informal carers affect the need for respite. Methods: We used data from a nationally representative survey, Capacités Aides et Resources des Seniors (CARE - ménage), collected in 2015 by the National Institute for Statistics and Economic Studies (INSEE) and the Directorate for Research, Studies, Assessment and Statistics (DREES). The determinants of the need for respite among the characteristics of informal caregivers were explored using a probit model. To handle missing data, sensitivity analyses were performed using multiple imputations. Results: Our study included N = 4033 dyads of informal carers and care recipients. The mean age was 61 for carers. The majority of carers were female, married, the child of the care recipient. Almost 27% reported a need for respite. A worse health status, feeling of loneliness, having a lack of time for oneself and needing to provide more than 30 h of care per month very significantly increased the need for respite irrespective of whether or not the carer lived with the care recipient (p < 0.01). Providing care to other persons was likely to induce a greater need for respite (p < 0.01). Cohabitation of the informal carer and the care recipient was likely to increase the need for respite (p < 0.05). Conversely, however, being closely acquainted with the care recipient showed a reduced need for respite in comparison with that of carers who are married to their care recipient (p < 0.05). Conclusions: These findings provide useful information for policymakers, physicians and other health professionals for reducing carers’ risk of exhaustion and burnout and for referring carers to the relevant service, e.g. psychological intervention, respite care support, training support and education support. 

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

Objectives: We 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. Methods: Cross-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. Results: Over 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). Conclusions: A 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 number: The trial registration number is ACTRN12616001461482. The results presented in this paper are Pre-results stage. 

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Development and psychometric evaluation of the perceived care tension questionnaire for caregivers of hemodialysis patients: A mixed method study

Background: The complex, multifaceted care environment and the threatening situation of caring for hemodialysis patients cause tension in their family caregivers. Due to the severe tension, family caregivers are likely to ignore their basic needs and only pay attention to the patient's needs and related issues. This study was conducted with the aim of designing and evaluating the Perceived Care tension Questionnaire for Caregivers of Hemodialysis Patients (PCTQHFC). Methods: The present study was a sequential exploratory mixed methods study of scale development variant conducted in two phases: qualitative and quantitative. This study was conducted in 2019 in Shahrekord. The qualitative phase included item development and scale development. In the quantitative phase (Item Analysis), the validation characteristics of the tool were examined using face, content and construct validity, and its reliability by internal consistency and stability. Findings were performed using software SPSS 18. Results: Principal components analysis with orthogonal rotation to generate factors, showed that five factors, namely emotional exhaustion, inadequate social support, care burden, confusion and ambiguity and lack of adaptability skills had an eigenvalue of higher than 1, so that they explained, respectively, 75.98%, 61.36%, 72.49%, 76.33%, and 70.31% of the total variance. The internal consistency was obtained 0.811 and the inter-class correlation coefficient for the whole instrument 0.832. Conclusion: PCTQHFC is a culturally appropriate measure with strong psychometric properties. The instrument designed in this study measures the care tension of hemodialysis patients. Therefore, researchers, health-care providers, and community health policymakers can plan and implement interventions to reduce the tension of caregivers of hemodialysis patients by analyzing and identifying the tensions of caregivers. 

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Digital personal assistants are smart ways for assistive technology to aid the health and wellbeing of patients and carers

Background: Digital health solutions such as assistive technologies create significant opportunities to optimise the effectiveness of both health and social care delivery. Assistive technologies include ‘low-tech’ items, such as memory aids and digital calendars or ‘high-tech’ items, like health tracking devices and wearables. Depending on the type of assistive devices, they can be used to improve quality of life, effect lifestyle improvements and increase levels of independence. Acceptance of technology among patients and carers depends on various factors such as perceived skills and competencies in using the device, expectations, trust and reliability. Objectives: This service evaluation explored the impact of a pilot service redesign focused on improving health and wellbeing by the use of a voice-activated device ‘smart speaker’, Alexa Echo Show 8. Methods: A service evaluation/market research was conducted for a pilot service redesign programme. Data were collected via a survey in person or telephone and from two focus groups of patients (n = 44) and informal carers (n = 7). The age of the study participants ranged from 50 to 90 years. Also, the participants belonged to two types of cohort: one specifically focused on diabetes and the other on a range of long-term health conditions such as multiple sclerosis, dementia, depression and others. Results: The device had a positive impact on the health and social well-being of the users; many direct and indirect benefits were identified. Both patients and carers had positive attitudes towards using the device. Self-reported benefits included: reminders for medications and appointments improved adherence and disease control; increased independence and productivity; and for those living alone, the device helped combat their loneliness and low mood. Conclusion: The findings from the study help to realise the potential of assistive technology for empowering supporting health/social care. Especially, the season of COVID-19 pandemic has highlighted the need for remote management of health, the use of assistive technology could have a pivotal role to play with the sustainability of health/social care provision by promoting shared care between the care provider and service user. Further evaluation can explore the key drivers and barriers for implementing assistive technologies, especially in people who are ageing and with long-term health conditions. 

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Clinicians for CARE: A Systematic Review and Meta-Analysis of Interventions to Support Caregivers of Patients With Heart Disease

Background: Caregivers provide critical support for patients with chronic diseases, including heart disease, but often experience caregiver stress that negatively impacts their health, quality of life, and patient outcomes. Objectives: We aimed to inform health care teams on an evidence-based approach to supporting the caregivers of patients with heart disease. Methods and Results: We conducted a systematic review and meta-analysis of randomized controlled trials written in English that evaluated interventions to support caregivers of patients with heart disease. We identified 15,561 articles as of April 2, 2020 from 6 databases; of which 20 unique randomized controlled trials were evaluated, representing a total of 1570 patients and 1776 caregivers. Most interventions focused on improving quality of life, and reducing burden, depression, and anxiety; 85% (17 of 20) of the randomized controlled trials provided psychoeducation for caregivers. Interventions had mixed results, with moderate non-significant effects observed for depression (Hedges' g=-0.64; 95% CI, -1.34 to 0.06) and burden (Hedges' g=-0.51; 95% CI, -2.71 to 1.70) at 2 to 4 months postintervention and small non-significant effects observed for quality of life and anxiety. These results were limited by the heterogeneity of outcome measures and intervention delivery methods. A qualitative synthesis of major themes of the interventions resulted in clinical recommendations represented with the acronym "CARE" (Caregiver-Centered, Active engagement, Reinforcement, Education). Conclusions: This systematic review highlights the need for greater understanding of the challenges faced by caregivers and the development of guidelines to help clinicians address those challenges. More research is necessary to develop clinical interventions that consistently improve caregiver outcomes.

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Characteristics of dyadic care types among patients living with multiple chronic conditions and their informal caregivers

Objectives: To examine the distribution of dyadic care types in multiple chronic conditions, compare self-care and caregiver contributions to patients' self-care in each care type and identify the patient and caregiver characteristics associated with each care type. Methods: Secondary analysis of a multicentre, cross-sectional study. Patient-caregiver dyads were enrolled from outpatient clinics and community settings. The Dyadic Symptom Management Type Scale was used to categorize dyads by type. Self-care, self-efficacy, comorbidities and cognitive impairment were measured in patients, whereas caregiver contributions to patient self-care, self-efficacy, caregiver burden and hours of caregiving were measured in caregivers. Sociodemographic characteristics perceived social support and mutuality were measured in both patients and caregivers. Univariate and multivariate analyses were performed. Results: A sample of 541 patient-caregiver dyads was examined. The most frequent dyadic care type was the collaborative-oriented (63%). In the patient-oriented type, patients scored higher on self-care compared with caregivers; in the caregiver-oriented and collaborative types, caregivers scored higher than patients supporting the typology. The patient-oriented type was associated with younger, healthier male patients with better cognitive status, who scored higher for mutuality and whose caregivers scored lower for burden. The caregiver-oriented type was associated with older, less educated patients, with caregivers experiencing higher burden and unemployment. The collaborative type was associated with sicker patients, with the caregiver more probably to be female and employed, with higher perceived social support, mutuality and burden. The incongruent dyadic care type was associated with lower caregiver mutuality. Conclusions: In the context of multiple chronic conditions, clinicians should consider targeting any educational interventions aimed at improving patient self-care and caregiver contributions to self-care by dyadic care types. 

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Humanistic and socioeconomic burden of COPD patients and their caregivers in Malaysia

Background: Chronic obstructive pulmonary disease (COPD) is associated with substantial humanistic and socioeconomic burden on patients and their caregivers. COPD is expected to be 7th leading cause of disease burden till 2030. Objectives: The objective of the current study was to assess the humanistic and socioeconomic burden of COPD patients and their caregivers in Malaysia. The burden includes the cost of management of COPD, QOL of COPD patients and their caregivers, work productivity and activity impairment of COPD patients and their caregivers due to COPD. Methods: One hundred and fifty COPD patients and their caregivers from the chest clinic of Penang Hospital were included in the study from August 2018 to August 2019. Caregiving cost was estimated using the replacement cost approach, while humanistic and social burden was assessed with the help of health status questionnaires. Results: Overall, 64.66% and 7.1% of COPD patients reported to depend on informal caregivers and professional caregivers respectively. COPD patients reported dyspnoea score as 2.31 (1.31), EQ-5D-5L utility index 0.57 (0.23), CCI 2.3 (1.4), SGRQ-C 49.23 (18.61), productivity loss 31.87% and activity impairment 17.42%. Caregivers reported dyspnoea score as 0.72 (0.14), EQ-5D-5L utility index 0.57 (0.23), productivity loss 7.19% and social activity limitation as 21.63% due to taking care of COPD patients. Conclusions: In addition to the huge direct cost of management, COPD is also associated with substantial burden on society in terms of compromised quality of life, reduced efficiency at the workplace, activity impairment and caregiver burden. 

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The impact of coronavirus disease 2019 on emotional and behavioral stress of informal family caregivers of individuals with stroke or traumatic brain injury at chronic phase living in a Mediterranean setting

Background: Even in nonpandemic times, persons with disabilities experience emotional and behavioral disturbances which are distressing for them and for their close persons. Objectives: We aimed at comparing the levels of stress in emotional and behavioral aspects, before and during coronavirus disease 2019 (COVID-19), as reported by informal family caregivers of individuals with chronic traumatic brain injury (TBI) or stroke living in the community, considering two different stratifications of the recipients of care (cause and injury severity). Methods: We conducted a STROBE-compliant prospective observational study analyzing informal caregivers of individuals with stroke (IC-STROKE) or traumatic brain injury (IC-TBI). IC-STROKE and IC-TBI were assessed in-person before and during COVID-19 online, using the Head Injury Behavior Scale (HIBS). The HIBS comprises behavioral and emotional subtotals (10 items each) and a total-HIBS. Comparisons were performed using the McNemar's test, Wilcoxon signed-rank test or t-test. Recipients of care were stratified according to their injury severity using the National Institutes of Health Stroke Scale (NIHSS) and the Glasgow Coma Scale (GCS). Results: One hundred twenty-two informal caregivers (62.3% IC-STROKE and 37.7% IC-TBI) were assessed online between June 2020 and April 2021 and compared to their own assessments performed in-person 1.74 ± 0.88 years before the COVID-19 lockdown. IC-STROKE significantly increased their level of stress during COVID-19 in five emotional items (impatience, frequent complaining, often disputes topics, mood change and overly sensitive) and in one behavioral item (overly dependent). IC-TBI stress level only increased in one behavioral item (impulsivity). By injury severity, (i) mild (14.7%) showed no significant differences in emotional and behavioral either total-HIBS (ii) moderate (28.7%) showed significant emotional differences in two items (frequent complaining and mood change) and (iii) severe (56.6%) showed significant differences in emotional (often disputes topics) and behavioral (impulsivity) items. Conclusions: Our results suggest specific items in which informal caregivers could be supported considering cause or severity of the recipients of care.

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Caregivers’ experiences of contributing to patients’ self‐care in Chronic Obstructive Pulmonary Disease: A thematic synthesis of qualitative studies

Objectives: To identify, analyze and synthesize qualitative studies on caregivers’ experiences of contributions to the self‐care of patients with Chronic Obstructive Pulmonary Disease (COPD). Background: COPD patients perform daily self‐care behaviours to manage the disease. With aging and disease progression, patients need to rely on the contributions of informal caregivers, usually family members, for disease management. Caregivers’ normal or habitual contributions to patients’ self‐care have not yet been completely investigated. Methods: Thematic synthesis of qualitative studies.Data sourcesCINAHL, EMBASE, PubMed, PsycINFO, Web of Science, Scopus, Emcare and OpenGrey databases were searched from inception to September 2020. The search was restricted to English‐language papers.Review methodsStudies were critically appraised using the Critical Appraisal Skills Programme checklist. The initial line‐by‐line codes were aggregated into descriptive themes from which analytical themes were derived. Results: Fifteen papers from nine countries, published 2009–2020, were included. Six analytical themes encompassing 22 descriptive themes were identified and grouped in two overarching themes describing caregivers’ experiences of contributions to patients’ self‐care during the stable and exacerbation phases of COPD. In the stable phases, caregivers contribute through maintaining disease stability, promoting healthy behaviours, fostering normal life and helping perform daily activities. During exacerbations, caregivers contribute through assessing, monitoring and managing symptoms in collaboration with patients or autonomously. They contribute by performing actions, motivating patients, organizing care, sensing variations in symptoms, acquiring knowledge and educating patients, making decisions, communicating and collaborating with healthcare providers and patients and advocating for patients. Conclusion: This thematic synthesis enlarges knowledge of caregivers’ contributions to patients’ self‐care in COPD, detailing the ways by which caregivers provide care to patients. Impact: Contributing daily to the self‐care of a family member with COPD is a complex experience. Nurses need to acknowledge the importance of caregivers’ contributions to patient disease management and develop effective educational interventions to support them.

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Older adults with chronic illness – Caregiver burden in the Asian context: A systematic review

Background: Upsurge in life expectancy, filial responsibility of caring, and healthcare advances have increased the older adult population in Asia. The last decade has witnessed nuclear families' proliferation in Asia, leaving family caregivers with more accountability and responsibility. This review explores the pattern of caregiver burden among caregivers of older adults with chronic illness in Asia. Methods: PRISMA guidelines serves as the framework for this systematic review. Studies from selected databases assessed caregivers' physical state, psychological dysfunction, and or burden as an outcome measure. The Newcastle - Ottawa Quality Assessment Scale appraised the quality of the selected studies. Results: The review included 12 research articles. Caregivers consistently report mild to a moderate burden. Care recipient with functional dependency, comorbidities, memory, and sleep impairments, escalate caregiver burden. Caregiver variables intensifying burden were advancing age, male gender, spouse as a care recipient, longer care provision duration, and no assistance. Conclusion: Optimal levels of emotional well-being, significant family/social support, and self-preparedness among caregivers are grounds for their empowerment. Practical Implications: A paradigm shift from 'caregiver burden' to 'caregiver resilience' is advocated. Routine screening, preventive measures (skill-building and psychosocial empowerment), and restorative services (respite care and problem-based home visiting) for caregivers are forecasted. 

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Exploring the experiences of living with Lewy body dementia: An integrative review

Objectives: Lewy body dementia is a common neurodegenerative dementia with unique challenges in managing day-to-day life. A more in-depth multifaceted picture of the Lewy body dementia lived experience will enable identification of best practice and future research direction. The review aim was to explore experiences of people living with Lewy body dementia and their family carers. Methods: Integrative review method informed by Whittemore and Knafl, supported by the information retrieval framework PALETTE. A convergent integrated approach enabled synthesis of key findings and theme identification. Data sources: Medline, CINAHL, PsycINFO, AMED, and ALOIS databases were systematically searched to find studies published between 1995 and 2020. Review Methods: Twenty-six articles from twenty studies were synthesized (from 1583 retrieved). Quality and relevance were appraised using the Mixed-Methods Appraisal Tool and Gough's ‘Weight of Evidence’ framework. Data management was supported by ATLAS.ti 8 and COVIDENCE software. Results: Four themes were identified: living with an uncertain diagnosis and prognosis; fear of the now – worry for the future; living with behavioural and psychiatric symptoms; and maintaining a social and emotional life. People reported difficulty finding information and support around diagnosis, disease progression and managing complex symptoms. The result is increased caregiver burden, grief and stress and reduced quality of life. Conclusion: Delayed diagnosis and complex symptom burden means people are not getting the timely support and information they need to live and die well. Current evidence is largely quantitative, with a focus on family caregiver burden and unmet need. The challenge remains in how to capture a more holistic picture of the lived experience for people living with Lewy body dementia and those who care for them. Impact: This review highlighted current knowledge and identified gaps in exploring the lived experience for people with Lewy body dementia and their families.

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Deriving implications for care delivery in parkinson’s disease by co-diagnosing caregivers as invisible patients

For persons with Parkinson’s disease, the loss of autonomy in daily life leads to a high level of dependency on relatives’ support. Such dependency strongly correlates with high levels of perceived stress and psychosocial burden in informal caregivers. Global developments, such as demographic change and the associated thinning infrastructure in rural areas cause a continuously growing need for medical and nursing care. However, this need is not being adequately met. The resulting care gap is being made up by unpaid or underpaid work of informal caregivers. The double burden of care work and gainful employment creates enormous health-related impairments of the informal caregivers, so that they eventually become invisible patients themselves. Expectedly, those invisible patients do not receive the best care, leading to a decrease in quality of life and, in the end, to worse care for PD patients. Suggested solutions to relieve relatives, such as moving the person affected by Parkinson’s to a nursing home, often do not meet the wishes of patients and informal caregivers, nor does it appear as a structural solution in the light of demographic change against an economic background. Rather, it requires the development, implementation and evaluation of new, holistic approaches to care that make invisible patients visible. 

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Burden of informal care in stroke survivors and its determinants: a prospective observational study in an Asian setting

Background: Informal caregiving is an integral part of post-stroke recovery with strenuous caregiving demands often resulting in caregiving burden, threatening sustainability of caregiving and potentially impacting stroke survivor’s outcomes. Objectives: Our study aimed to examine and quantify objective and subjective informal care burden after stroke; and to explore the factors associated with informal care burden in Singapore. Methods: Stroke patients and their informal caregivers were recruited from all five tertiary hospitals in Singapore from December 2010 to September 2013. Informal care comprised of assistance provided by informal caregivers with any of the activities of daily living. Informal care burden was measured by patients’ likelihood of requiring informal care, hours of informal care required, and informal caregivers’ Zarit’s Burden Score. We examined informal care burden at 3-months and 12-months post-stroke. Generalized linear regressions were applied with control variables including patients’ and informal caregivers’ demographic characteristics, arrangement of informal care, and patients’ health status including stroke severity (measured using National Institute of Health Stroke Scale), functional status (measured using Modified Rankin Scale), self-reported depression, and common comorbidities. Results: Three hundred and five patients and 263 patients were examined at 3-months and 12-months. Around 35% were female and 60% were Chinese. Sixty three percent and 49% of the patients required informal care at 3-months and 12-months point, respectively. Among those who required informal care, average hours required per week were 64.3 h at 3-months and 76.6 h at 12-months point. Patients with higher functional dependency were more likely to require informal care at both time points, and required more hours of informal care at 3-months point. Female informal caregivers and those caring for patients with higher functional dependency reported higher Zarit’s Burden. While informal caregivers who worked full-time reported higher burden, those caring for married stroke patients reported lower burden at 3-months point. Informal caregivers who co-cared with foreign domestic workers, i.e.: stay-in migrant female waged domestic workers, reported lower burden. Conclusions: Informal care burden remains high up to 12-months post-stroke. Factors such as functional dependency, stroke severity, informal caregiver gender and co-caring with foreign domestic workers were associated with informal care burden.

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An App-Based Just-in-Time Adaptive Self-management Intervention for Care Partners (CareQOL): Protocol for a Pilot Trial

Background: Care partners (ie, informal family caregivers) of individuals with health problems face considerable physical and emotional stress, often with a substantial negative impact on the health-related quality of life (HRQOL) of both care partners and care recipients. Given that these individuals are often overwhelmed by their caregiving responsibilities, low-burden self-management interventions are needed to support care partners to ensure better patient outcomes. Objective: The primary objective of this study is to describe an intensive data collection protocol that involves the delivery of a personalized just-in-time adaptive intervention that incorporates passive mobile sensor data feedback (sleep and activity data from a Fitbit [Fitbit LLC]) and real time self-reporting of HRQOL via a study-specific app called CareQOL (University of Michigan) to provide personalized feedback via app alerts. Methods: Participants from 3 diverse care partner groups will be enrolled (care partners of persons with spinal cord injury, care partners of persons with Huntington disease, and care partners of persons with hematopoietic cell transplantation). Participants will be randomized to either a control group, where they will wear the Fitbit and provide daily reports of HRQOL over a 3-month (ie, 90 days) period (without personalized feedback), or the just-in-time adaptive intervention group, where they will wear the Fitbit, provide daily reports of HRQOL, and receive personalized push notifications for 3 months. At the end of the study, participants will complete a feasibility and acceptability questionnaire, and metrics regarding adherence and attrition will be calculated. Results: This trial opened for recruitment in November 2020. Data collection was completed in June 2021, and the primary results are expected to be published in 2022. Conclusions: This trial will determine the feasibility and acceptability of an intensive app-based intervention in 3 distinct care partner groups: care partners for persons with a chronic condition that was caused by a traumatic event (ie, spinal cord injury); care partners for persons with a progressive, fatal neurodegenerative disease (ie, Huntington disease); and care partners for persons with episodic cancer conditions that require intense, prolonged inpatient and outpatient treatment (persons with hematopoietic cell transplantation). Trial Registration: ClinicalTrials.gov NCT04556591; https://clinicaltrials.gov/ct2/show/NCT04556591 International Registered Report Identifier (IRRID): DERR1-10.2196/32842

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Are informal family caregivers stigmatized differently based on their gender or employment status?: a German study on public stigma towards informal long-term caregivers of older individuals

Background: Stigma and informal caregiving are determinants for health and wellbeing, but few studies have examined stigma towards informal caregiving. Public stigma may be expressed differently towards caregivers depending on their gender and employment status due to societal norms. Therefore, this study analyzes if there is a difference in public stigma shown by the general population toward informal caregivers of care recipients aged 65 years or older based on the observed caregiver’s gender or working status. Methods: A cross-sectional study was conducted in Germany. Data from 1038 adult participants from the general population in Germany were assessed with an Online-Survey. They were recruited with a quota-system based on the German micro census. Participants were randomly assigned to one of 16 vignettes describing a caregiving situation, which varied in the caregiver’s gender and working status, and care recipient’s gender and type of impairment. After reading the vignette, they were asked to provide sociodemographic information and complete three questionnaires on public stigma assessing their emotional (Emotional Reactions), behavioral (Social Distance) and cognitive reaction (Statements on informal caregivers) to the caregiver described in the vignette. Regression analyses, adjusted for sociodemographic data of the participants, were conducted. Results: Findings indicated an association between reading about male caregivers and increased social distance, compared with reading about female caregivers. Reading about working caregivers was associated with decreased social distance and increased appreciative statements, compared to reading about non-working caregivers. Analyses after stratifying by gender of the caregiver in the vignette indicated an association between reading about female working caregivers and increased appreciative statements, compared to reading about female non-working caregivers. When stratifying by working status, an association was found between reading about male working caregivers and increased social distance, when compared to reading about female working caregivers. Conclusions: This study’s findings indicate that gender and working status of the perceived informal caregivers are of relevance to the public stigma directed towards these caregivers. Male and non-working informal caregivers were shown more public stigma than female and working informal caregivers. Thus, interventions to reduce public stigma, in particular towards male and non-working caregivers, are recommended.

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Acceptance and perception of digital health for managing nutrition in people with Parkinson's disease and their caregivers and their digital competence in the United States: A mixed‐methods study

Background and aims: This mixed‐methods study examined participants' acceptance and perception of using digital health for managing nutrition and participants' digital competence. The results will be formative for making digital nutrition education more effective and acceptable for people with Parkinson's disease (PwPD) and their informal caregivers. Methods: Qualitative data were collected through in‐person semi‐structured, dyadic interviews, and questionnaires from 20 dyads (20 PwPD and their caregivers) in the Northeastern United States and analyzed throughout the 2018 to 2019 academic year. Interview transcripts were deductively coded using the framework analysis method. Phrases related to acceptance of digital health were sub‐coded into accept, neutral, or reject and those related to perceptions of digital health were sub‐coded into perceived usefulness, perceived ease of use, and awareness of digital health. Quantitative data were analyzed using independent samples t tests and Fisher's exact tests. Qualitative codes were transformed into variables and compared to digital competence scores to integrate the data. An average acceptance rate for digital health was calculated through examining the mean percent of phrases coded as accept from interview transcripts. Results: Twenty‐five of 40 (62.5%) participants used the internet for at least 5 health‐related purposes and the average acceptance rate was 54.4%. Dyads rejected digital health devices if they did not see the added benefit. The majority of participants reported digital health to be useful, but hard to use, and about half felt they needed education about existing digital health platforms. There was no difference in digital competence scores between PwPD and their caregivers (28.6 ± 12.6). Conclusion: Findings suggest that dyads accept and use technology but not to its full potential as technology can be perceived as hard to use. This finding, combined with digital competence scores, revealed that education is warranted prior to providing a digital nutrition intervention.

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A systematic review of psychosocial interventions for Latinx and American Indian patient-family caregiver dyads coping with chronic health conditions

Background: Latinx and American Indians experience high rates of chronic health conditions. Family members play a significant role as informal caregivers for loved ones with chronic conditions and both patients and family caregivers report poor psychosocial outcomes. Objectives and Methods: This systematic review synthesizes published studies about psychosocial interventions for Latinx and American Indian care dyads to determine: (i) the benefits of these interventions; (ii) their distinguishing features or adaptations, and; (iii) recommendations for future intervention development. Findings: Out of 366 records identified, seven studies met inclusion criteria. Interventions demonstrated benefits to outcomes such as disease knowledge, caregiver self-efficacy and burden, patient and caregiver well-being, symptom distress, anxiety and depression, and dyadic communication. Distinguishing features included tailoring to cultural values, beliefs, and delivery preferences, participants’ level of acculturation, and population-specific issues such as migratory stressors and support networks. Conclusions: Based upon this review, six recommendations for future intervention development are put forth. 

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A systematic literature review of the disease burden in patients with recessive dystrophic epidermolysis bullosa

Background/objective: Recessive dystrophic epidermolysis bullosa (RDEB) is a genetic collagen disorder characterized by skin fragility leading to blistering, wounds, and scarring. There are currently no approved curative therapies. The objective of this manuscript is to provide a comprehensive literature review of the disease burden caused by RDEB. Methods: A systematic literature review was conducted in MEDLINE and Embase in accordance with PRISMA guidelines. Observational and interventional studies on the economic, clinical, or humanistic burden of RDEB were included. Results: Sixty-five studies were included in the review. Patients had considerable wound burden, with 60% reporting wounds covering more than 30% of their body. Increases in pain and itch were seen with larger wound size. Chronic wounds were larger and more painful than recurrent wounds. Commonly reported symptoms and complications included lesions and blistering, anemia, nail dystrophy and loss, milia, infections, musculoskeletal contractures, strictures or stenoses, constipation, malnutrition/nutritional problems, pseudosyndactyly, ocular manifestations, and dental caries. Many patients underwent esophageal dilation (29–74%; median dilations, 2–6) and gastrostomy tube placement (8–58%). In the severely affected population, risk of squamous cell carcinoma (SCC) was 76% and mortality from SCC reached 84% by age 40. Patients with RDEB experienced worsened quality of life (QOL), decreased functioning and social activities, and increased pain and itch when compared to other EB subtypes, other skin diseases, and the general population. Families of patients reported experiencing high rates of burden including financial burden (50–54%) and negative impact on private life (79%). Direct medical costs were high, though reported in few studies; annual payer-borne total medical costs in Ireland were $84,534 and annual patient-borne medical costs in Korea were $7392. Estimated annual US costs for wound dressings ranged from $4000 to $245,000. Patients spent considerable time changing dressings: often daily (13–54% of patients) with up to three hours per change (15–40%). Conclusion: Patients with RDEB and their families/caregivers experience significant economic, humanistic, and clinical burden. Further research is needed to better understand the costs of disease, how the burden of disease changes over the patient lifetime and to better characterize QOL impact, and how RDEB compares with other chronic, debilitating disorders. 

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Caregiver empowerment program based on the adaptation model increase stroke family caregiver outcome

Objective: Post-stroke disability and psychosocial disorders cause burdens for the families of stroke patients, including physical and financial burdens. The physical and psychological health of family caregivers determines the quality of care they provide to patients. The purpose of this study was to identify the effectiveness of the Caregiver Empowerment Program Based on the Adaptation Model (CEP-BAM) in increasing the family caregiver's coping ability against various problems and reducing their burden while caring for the stroke patient. Methods: This research was a quasi-experimental study with pre- and post-test control group design. The intervention group received CEP-BAM, while the control group received a conventional intervention in the form of a discharge planning program for family caregivers in the hospital. The samples were caregivers who care for and facilitate the recovery of stroke patients during their convalescence at home. We selected the samples from the population using the stratified random sampling method. The number of samples completed in the study was 40 in the intervention group and 40 in the control group. Measurement of outcome variables (coping and caregiver burden) was carried out 4 times including pre-test before the intervention, post-test 1 at 4 months after the intervention, post-test 2 at 5 months after the intervention, and post-test 3 at 6 months after the intervention. Results: There were significant differences in caregiver's coping (P = 0.016) and caregiver's burden (P = 0.009) in measurements between the two groups. Conclusions: The CEP-BAM interventions were effective in increasing adaptive coping strategies and reducing the burden of caregivers 4 months and continuing 6 months after the intervention. 

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What support does a mobile, assistive app provide for informal caregivers? A qualitative analysis of the MoCaB app user experience

Background: In the joint project "Mobile Care Backup'' funded by the German Federal Ministry of Education and Research, the smartphone-based app "MoCaB'' was developed in close cooperation with informal caregivers. It provides individualized, algorithm-based information and can accompany and support caring relatives in everyday life. After a multi-step development, informal caregivers tested the MoCaB app in a home setting at the end of the research project. Objectives: The goal was to find out how the test persons evaluate MoCaB and in which form the app can provide support to informal caregivers. Methods: Eighteen test persons caring for relatives participated in a four-week test of MoCaB. Guideline-based qualitative interviews to record usage behavior and experiences with the app were conducted after two and four weeks of testing, transcribed and analyzed using qualitative content analysis. Results: The test persons described the care-related information as helpful. The individualized, algorithm-based mode of information delivery and the exercises provided for family caregivers were generally rated as helpful, but their use depends on the individual usage style. Three dimensions can describe the effects of MoCaB: 1) expansion of care-relevant knowledge, 2) stimulation of self-reflection, and 3) behavior towards the care recipients. Discussion: With few exceptions, the testing caregivers felt that the MoCaB app was enriching. The support dimensions have an effect at different points in everyday life and vary in intensity, depending on the duration of the existing care activity and the individual preferences of the users. Conclusion: The way in which caregivers used the app was not always consistent with the expected behaviors. This demonstrates the relevance of open-ended, qualitative research methods in the evaluation of health apps.

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A psychometric evaluation of the Caregiver Contribution to Self-Care of Heart Failure Index in a Thai population

Background: Caregivers are major contributor to the self-care of patients with heart failure. The Caregiver Contribution to Self-Care of Heart Failure Index (CC-SCHFI) measures these contributions across three scales: self-care maintenance (symptom monitoring and treatment adherence); self-care management (dealing with symptoms); and confidence in contributing to the self-care (self-efficacy in managing self-care) of patients with heart failure. Informal caregivers play a vital role in supporting family members with heart failure in Thailand, yet no validated tool exists to measure their contribution. We examined the psychometric properties of the CC-SCHFI in a Thai population. Methods: The CC-SCHFI was translated into Thai using a standard forward and backward translation procedure. A cross-sectional design was used to examine the psychometric properties of the Thai version of the CC-SCHFI in 100 family caregivers of heart failure patients in Southern Thailand. Confirmatory factor analysis was used to assess construct validity, and factor score determinacy coefficients were computed to evaluate internal consistency reliability. Results: The Thai version of the CC-SCHFI demonstrated acceptable internal consistency (composite reliability of each scale ranged from 0.76 to 0.99). Reliability estimates were adequate for each scale (McDonald’s omega ranged from 0.75 to 0.96). Confirmatory factor analysis supported the original factor structure of the instrument, with good fit indices for all three scales (comparative fit index = 0.98–1.00; root-mean-square error of approximation = 0.00–0.07). Conclusions: The Thai version of the CC-SCHFI appears to be a valid and reliable instrument for measuring caregiver contributions to self-care maintenance and self-care management as well as contributing to caregiver confidence in the self-care of Thai heart failure patients. 

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A New Stage of the Caregiving Career: Informal Caregiving after Long-term Institutionalization

Background and Objectives: The "unexpected career"of caregiving has previously been conceptualized in stages: community care through institutional placement/residence, ending with death of the care recipient. Transition programs such as Money Follows the Person (MFP) created a new stage of the caregiving career, caring for someone post-long-term institutionalization, about which little is known. Using Pearlin's Caregiver Stress Process Model, this study explores effects on caregivers from the return of their loved ones to the community after a long-term institutional stay. Research Design and Methods: Cross-sectional surveys of 656 caregivers of persons transitioned through Connecticut's MFP program 2014-2018, completed 6 months posttransition. Results: Regardless of the age/disability of the care recipient, and despite experiencing high caregiving intensity, caregivers experienced less burden, anxiety, and depression, and higher benefits of caregiving than demonstrated in literature for the general caregiving population. Most felt less stressed than before and during the participant's institutional stay. Factors associated with worse outcomes included worry about safety, strained finances, missing work, and desiring additional services. Black and Hispanic caregivers experienced lower burden and anxiety and higher benefits of caregiving than White caregivers. Discussion and Implications: By providing community supports to participants, transition programs can have broad ancillary benefits for caregivers and improve outcomes in the Pearlin model, lessening potentially deleterious effects of an unexpected return to intensive caregiving duties after institutional placement. Positive results for Black and Hispanic caregivers may reflect cultural expectations in caring for family that buffer the adverse effects of caregiving. 

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A multicenter study on quality of life of the “greater patient” in congenital ichthyoses

Background: Autosomal recessive congenital ichthyoses (ARCI) are a genetically heterogeneous group of rare and chronic disorders characterized by generalized skin scaling and hyperkeratosis, erythroderma, and palmoplantar keratoderma. Additional features include ectropion, eclabium, ear deformities, foul-smell, joints contractures and walking problems, recurrent infections, as well as pruritus and pain. No curative therapy is available and disease care mainly relies on daily application of topical emollients and keratolytics to the whole-body surface. Altogether, disease signs and symptoms and treatment modalities have a major impact on quality of life of patients and their caregivers. However, very few studies have evaluated the family disease burden in ARCI. Methods: We have performed an Italian multicenter cross-sectional study to assess the secondary disease impact on family members of pediatric and adult patients with ARCI, using a validated dermatology-specific questionnaire, the family dermatology life quality index (FDLQI). Disease severity was assessed by the dermatologist in each center. Results: Seventy-eight out of 82 patients who were accompanied by at least one family member filled the FDLQI. Forty-eight (61.5%) patients were aged less than 18 years. The mean FDLQI score was 10.3 (median 10), and the most affected dimensions were (1) time needed for care, (2) extra-housework, and (3) household expenditure. Higher total FDLQI score significantly correlated with more severe disease score (P = 0.003). Features associated with greater family burden included recurrent infections (P = 0.004), foul-smell (P = 0.009), palmoplantar keratoderma (P = 0.041), but also presence of scales on the face (P = 0.039) and ear deformities (P = 0.016). Conclusions: Our findings highlight the major socio-economic and psychological burden imposed by ARCI on the QoL of family caregivers. In addition, they show that global evaluation of disease impact also on family members is an essential part of patient-reported outcomes. Finally, our data underline the need to develop specific measures for family support. 

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Validation of the German version of the Family Reported Outcome Measure (FROM-16) to assess the impact of disease on the partner or family member

Background: The Family Reported Outcome Measure (FROM-16) assesses the impact of a patient’s chronic illness on the quality of life (QoL) of the patient’s partner or family members. Objective: The aim of the study was to translate, explore the structure of and validate the FROM-16. Methods: The questionnaire was translated from English into German (forward, backward, four independent translators). Methods: Six interviews with family members were conducted to confirm the questionnaire for linguistic, conceptual, semantic and experiential equivalence and its practicability. The final German translation was tested for internal consistency, reproducibility and test validity. Criterion validity was tested by correlating the scores of the FROM-16 and the Global Health Scale (GHS). Principal component analysis, factor analysis, and confirmatory factor analysis was used to assess the questionnaire’s structure and its domains. Reliability and reproducibility were tested computing the intraclass correlation coefficient (ICC) using one sample t-test for testing the hypothesis that the difference between the scores was not different from zero. Results: Overall, 83 family members (61% female, median age: 61 years) completed the questionnaire at two different times (mean interval: 22 days). Internal consistency was good for the FROM-16 scores (Cronbach’s α for total score = 0.86). In those with stable GHS, the ICC for the total score was 0.87 and the difference was not different from zero (p = 0.262) indicating reproducible results. A bi-factor model with a general factor including all items, and two sub-factors comprising the items from the original 2-factor construct had the best fit. Conclusions: The German FROM-16 has good reliability, test validity and practicability. It can be considered as an appropriate and generic tool to measure QoL of a patient’s partner or family member. Due to the presence of several cross-loadings we do not recommend the reporting of the scores of the two domains proposed for the original version of FROM-16 when using the German version. Thus, in reporting the results emphasis should be put on the total score. Trial registration: Retrospectively registered: DRKS00021070. 

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A comparison of caregiver burden between long-term care and developmental disability family caregivers

Background: As the United States’ population ages and health concerns rise, the family caregiver occupation will continue to be an integral part of the health care system. Aims: It is important to examine the burden that family caregivers experience so they can seek out additional training and services to maintain their own well-being. The researchers examined caregiver burden from a perspective of developmentally disabled and long-term care. Methods: The researchers examined difference in Zarit scores, guilt, burden and personal strain for 72 caregivers of people with developmental disability (DD) or people with long-term care (LTC) needs. The researchers also examined differences in these based on whether the individual was caregiving for family or “others”. Results: For DD, there were significant differences in Zarit, role strain and personal strain; caring for others has significantly lower scores on these. Role strain was significantly higher than personal strain, which was significantly higher than guilt for both LTC and DD groups. Conclusions: Given these findings, it is important to support family caregivers first and foremost with role strain, especially for those caring for family members with DD. This support could be given through personal counselling, caregiver training, non-profit social service resources, and support groups for family caregivers. 

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A scoping review of unmet needs of caregivers of patients with pulmonary fibrosis

Background: Pulmonary fibrosis is an incurable lung disease that leads to significant morbidity. In many patients, pulmonary fibrosis is progressive causing debilitating dyspnea that impairs patients' ability to perform everyday tasks and maintain independence. Informal caregivers provide invaluable support for patients with pulmonary fibrosis; however, support for the caregiver is inadequate. Objective: The purpose of this scoping review is to identify unmet needs for caregivers of pulmonary fibrosis patients. Findings: During the past 18 months, there has been an increase in studies about the impact of pulmonary fibrosis on the caregiver or carer of the patient with pulmonary fibrosis. These carers experience caregiver burden which includes negative psychological and physical effects on caregiver health because of the challenge in caring for someone with pulmonary fibrosis. Caregivers describe the need for help navigating the healthcare system. This includes supportive and informational needs, lack of access to comprehensive patient-centred care, geographically accessible specialty centres and psychological support for both patient and caregiver. 

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Evaluation of care burden and caregiving preparedness in caregivers of patients with epilepsy: A sample in eastern Turkey

Aim: This study was conducted to evaluate the care burden and caregiving preparedness in caregivers of patients with epilepsy. Methods: This descriptive, cross-sectional study evaluated the caregivers of patients with epilepsy who were referred to the neurology outpatient clinic of a university hospital in Erzurum, eastern Turkey, between February 2020 and February 2021. The study was carried out with 147 volunteers among the patients with epilepsy who were referred to the neurology outpatient clinic between the specified dates. The data were collected with Caregiver Question Form, the Brief Disability Questionnaire (BDQ), the Burden Interview (BI), and the Preparedness for Caregiving Scale (PCS). Results: The mean BI score of the caregivers who participated in the study was 43.14 +/- 18.08, their mean PCS score was 14.12 +/- 7.76, and their mean BDQ score was 10.53 +/- 4.65. In the regression analysis conducted, it was found that being married, having little knowledge of patient care, undertaking all of the roles in caregiving and having caregiving duration of 24 months and longer had a negative effect on PCS total score, while having an undergraduate degree and higher had a positive significant effect. It was found that having an undergraduate degree and higher had a negative effect on BI total score, while all of the roles undertaken in caregiving had a positive significant effect on BI total score. It was found that PCS had a negative significant effect on BI total score (p < 0.001). Conclusion: Caregivers of patients with epilepsy had a moderate level of burden and caregiving preparedness, and the patients cared for had a moderate level of disability. Caregiver burden increased as disability of patients with epilepsy and the tasks undertaken in caregiving increased, whereas burden decreased as caregiver education and caregiving preparedness increased.

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The determinants of caregiver use and its costs for elderly inpatients in Korea: a study applying Andersen’s behavioral model of health care utilization and replacement cost method

Objectives: The average annual healthcare expenditure among elderly patients in Korea is increasing rapidly in indirect healthcare sectors, requiring an understanding of factors related to the use of both formal and informal caregivers. Objectives: This study analyzed the characteristics of caregiver use and caregiving costs among elderly patients hospitalized due to acute illness or exacerbation of chronic diseases. Methods: A total of 819 study participants were selected from the 2017 Korea Health Panel Study Data. Replacement costing methods were applied to estimate the hours of informal caregiver assistance received by elderly inpatients. Elderly inpatients’ predisposing, enabling, and need factors were studied to identify the relationship between caregiver uses, based on Andersen’s behavior model. A two-part model was applied to analyze the factors related to care receipt and to estimate the incremental costs of care. Results: Elderly inpatients who used tertiary hospitals (OR: 2.77, p-value < 0.00) and received financial support (OR: 2.68, p-value < 0.00) were more likely to receive support from a caregiver. However, elderly inpatients living alone were lesser to do so (OR: 0.49, p-value < 0.00). Elderly inpatients with Medicaid insurance (β:0.54, p-value = 0.02) or financial aid (β: 0.64, p-value < 0.00) had a statistically positive association with spending more on caregiving costs. Additionally, financial support receivers had incremental costs of $627 in caregiving costs than nonreceivers. Conclusions: This study presented significant socioenvironmental characteristics of formal and informal caregiver use and the related expenditures. Healthcare management plans that encompass multiple social levels should be implemented to ease the caregiver burden. 

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Correlation between burden and quality of life among family caregiver of patients undergoing hemodialysis

Background: In Indonesia, taking care of sick family member is an obligation for other family members. Family caregivers not only involve in patients’ physical health, but also psychological and financial aspect that sometimes also cause burden for them. However, most of them often ignore their health status and wellbeing. Objectives: Therefore, current study aimed to identify the correlation between burden and quality of life among family caregiver of patients having hemodialysis. This was a cross sectional study in 80 family caregivers. Methods: Data were collected using Zarit Burden Inventory and SF-36. Pearson Correlation test was performed. It is found that most of the caregiver of patient undergoing hemodialysis was the spouse (62.8%). As many as 53.8% family caregiver experienced no burden in taking care of patients. Overall, they showed a moderate score in 8 domain of quality of life. Burden was significantly correlated with general health (p = 0.001), bodily pain (p = 0.002), social functioning (p = 0.035), role-functioning physical (p = 0.043), and role-functioning emotional (p = 0.048). Conclusions: To sum up, most of family caregiver felt no burden in taking care of patients undergoing hemodialysis and it is correlated with their quality of life. Thus, in taking care patients undergoing hemodialysis, nurses should also pay attention to their family caregiver. 

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Timely Communication Through Telehealth: Added Value for a Caregiver During COVID-19

Objective: This caregiver case study applies the lens of relational coordination theory (RC) to examine the value of telehealth as a medium of care coordination for a pediatric patient with hypermobile Ehlers-Danlos Syndrome (hEDS) during the COVID-19 pandemic. Background: The COVID-19 pandemic has placed an unprecedented burden on the delivery of healthcare around the globe and has increased the reliance on telehealth services. Delivering telehealth requires a high level of communication and coordination within and across providers as well as between providers, patients and their families. However, it is less clear how telehealth impacts the coordination of care. In this paper, we provide insight into the quality of care coordination between providers and an informal caregiver following policy changes to the provider payment structure in Massachusetts. Methods: This paper employs a single-case, autoethnographic study design where one of the authors uses their experiential insights, as mother of the patient, to inform a wider cultural and political understanding of the shift to remote caregiving for a pediatric patient with hEDS. Data was collected using reflective journaling, interactive interviews, and participant observation and analyzed using content analysis. Results: Findings revealed four interrelating roles of the caregiver including, logistics support, boundary spanner, home health aide, and cultural translator. The adoption of telehealth was associated with improved timeliness and frequency of communication between the caregiver and providers. Findings about the impact of telehealth adoption on accuracy of communication were mixed. Mutual respect between the caregiver and providers remained unchanged during the study period. Conclusions: This paper highlights areas where payer policy may be modified to incentivize timely communication and improve coordination of care through telehealth services. Additional insight from the perspective of an informal caregiver of a patient with a rare chronic disease provides an understudied vantage to the care coordination process. We contribute to relational coordination theory by observing the ways that caregivers function as boundary spanners, and how this process was facilitated by the adoption of telehealth. Insights from this research will inform the development of telehealth workflows to engage caregivers in a way that adds value and strengthens relational coordination in the management of chronic disease. 

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Caregiving Stress and Self-Rated Health during the COVID-19 Pandemic: The Mediating Role of Resourcefulness

Background: Family caregivers faced unprecedented circumstances and experienced increased levels of stress during the COVID-19 pandemic. Resourcefulness can minimize the effect of stress on health outcomes. Objectives: The purpose of this study was to examine the associations between caregiving stress during the pandemic, resourcefulness, and self-rated health and assess the mediating effect of resourcefulness. Methods: A convenience sample of 70 family caregivers of adults with chronic and/or disabling conditions was recruited using social media groups and professional networking platforms. Data were collected using an online survey and analyzed using linear regression. Mediation analysis was conducted using the PROCESS macro. Results: Higher levels of caregiving stress during the pandemic and lower levels of resourcefulness were associated with worse self-rated health, while controlling for age, employment status, and weekly caregiving hours. Resourcefulness mediated the relationship between caregiving stress and self-rated health. Our findings highlight the importance of assessing the psychological impact of the pandemic on family caregivers’ outcomes. Conclusions: Resourcefulness skills can be targeted to improve the health and well-being of family caregivers during and beyond the pandemic.

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Eldercare in Japan: Cluster Analysis of Daily Time-Use Patterns of Elder Caregivers

Methods: Using the data of the 2006 Japanese Survey on Time Use and Leisure Activities, we perform cluster analysis and identify seven unique patterns of daily time-use patterns of co-resident family elder caregivers: (1) ‘Overworkers’, (2) ‘Full-time Workers’, (3) ‘Part-time Workers’, (4) ‘Intensive Caregivers’, (5) ‘Houseworkers’, (6) ‘Leisurely’, and (7) caregivers, who needed medical attention on the diary day (‘Emergency Diaries’). Results: Our results show that the ‘Houseworkers’ and ‘Intensive Caregivers’ spend the most time on adult caregiving activities. Care activities for ‘Houseworkers’ are more likely to coincide with longer housework hours, increasing the total unpaid work volume. Conclusions: The analysis of demographic profiles suggests that similar daily patterns on weekdays and weekends do not belong to people with the same demographic characteristics. For instance, although on weekdays, ‘Leisurely Caregivers’ are mostly represented by the elderly taking care of other elderly, people of any age can belong to this category on weekends. Among all types of caregivers, only 'Intensive Caregivers' are as likely to be men as they can be women, suggesting that when the need for eldercare increases, family caregivers of any gender will step in.

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"Together We Stand": A Pilot Study Exploring the Feasibility, Acceptability, and Preliminary Effects of a Family-Based Psychoeducational Intervention for Patients on Hemodialysis and Their Family Caregivers

Objectives: This pilot study aimed to assess the feasibility, acceptability, and preliminary effects of a family-based psychoeducational intervention for patients undergoing hemodialysis (HD) and their family members. Methods: This was a single-group (six dyads), six-week, pre-post pilot study, delivered in a multifamily group format. Feasibility was based on screening, eligibility, content, retention, completion, and intervention adherence rates. Acceptability was assessed at post-intervention through a focus group interview. Self-reported anxiety and depression and patients' inter-dialytic weight gain (IDWG) were also measured. The screening (93.5%), retention (85.7%), and completion (100%) rates were satisfactory, whereas eligibility (22.8%), consent (18.4%), and intervention adherence (range: 16.7-50%) rates were the most critical. Results: Findings showed that participants appreciated the intervention and perceived several educational and emotional benefits. The results from the Wilcoxon Signed-Rank Test showed that a significant decrease in anxiety symptoms (p = 0.025, r = 0.646) was found, which was followed by medium to large within-group effect sizes for changes in depression symptoms (p = 0.261, r = 0.325) and patients' IDWG (p = 0.248, r = 0.472), respectively. Conclusions: Overall, the results indicated that this family-based psychoeducational intervention is likely to be feasible, acceptable, and effective for patients undergoing HD and their family caregivers; nonetheless, further considerations are needed on how to make the intervention more practical and easily implemented in routine dialysis care before proceeding to large-scale trials.

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“A World Upside Down”: Experiences of Informal Caregivers During the COVID-19 Pandemic

Background: The caregiving process may result in negative outcomes for caregivers. The coronavirus disease 2019 pandemic has contributed additional challenges for family caregivers of older adults with chronic illnesses. Little is known about the additional impact of the pandemic on caregivers. Objectives: The purpose of the current study was to understand the effects of the pandemic on the caregiving experience. Methods: A qualitative descriptive content analysis was conducted on nine blogs of caregivers of older adults. Blogs were identified using purposive sampling. Bloggers were American, middle-aged, and caring for an older adult with dementia. Findings: Caregivers reported “a world upside down” and change that contributed to uncertainty; the need for support; and how isolation, depressive symptoms, and threat contributed to negative psychological well-being. Managing and struggling in response to caregiving challenges and wishing for resolution were also reported. Conclusions: Blogs of caregivers of older adults with chronic illness yielded important information that may be useful to clinicians. 

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Who are the beneficiaries and what are the reasons for non-utilization of care respite and support services? A cross-sectional study on family caregivers

Background: Family caregivers assume substantial caregiving responsibilities for persons with chronic conditions, such as individuals with spinal cord injury, which leads to negative impacts on their lives. Respite care and other services are provided as a temporary relief and support for them. Design of appropriate respite care programs depends on identification of beneficiary subgroups for the different types of service. This study aimed to quantify the uptake of different respite and support services for family caregivers, the reasons for non-use, and to explore the respective predictors. Methods: A cross-sectional survey of family caregivers of persons with spinal cord injury was conducted nationwide in Switzerland. The use of 11 different respite and support services during the previous 12 months was investigated, along with caregivers’ reasons for not using any respite. Classification trees were used to characterize the beneficiaries and reasons for not using respite. Results: About a third of family caregivers used at least one type of respite or support service during the previous 12 months. Utilization of respite care was greater among those who employed professional home care (57% vs 24% of those without professional home care). Marked cantonal differences were also observed in utilization of respite care. The primary reason for not using respite services was “no demand” (80% of non-users of respite services), mainly among caregivers who were less emotionally affected by their caregiving tasks. Conclusions: Utilization of respite and support services depends more on place of residence and use of home care services than on functional status of the care recipient. Accordingly, programs should be tailored to the cultural context of their potential users. This is best achieved through coordination with local health care professionals who can identify needs, provide information, initiate referrals, and integrate the care into a larger support plan.

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What is the present role for general practitioners in dementia care? Experiences of general practitioners, patients and family carers in Portugal

Background: Governments are being challenged to integrate at least part of dementia care into primary care. However, little is known about the current role of general practitioners (GPs) regarding dementia care, especially in countries that do not have dementia strategies in place. Objective: The aim of this study was to explore the experiences of GPs, persons with dementia and their family carers in Portuguese primary care settings, to better understand GPs' contribution to dementia care. Methods: A qualitative interview study of participants recruited from six practices in different social contexts within the Lisbon metropolitan area was carried out. Purposive sampling was used to recruit GPs, persons with dementia and carers. Interviews with GPs explored dementia care comprehensiveness, including satisfactory and challenging aspects. Interviews with patients and carers explored the experience of talking to GPs about cognitive impairments and related difficulties and the type of help received. Thematic analysis of interview transcripts was carried out using the framework approach. Results: Five major themes were identified: GPs have a limited contribution to dementia care, the case of advanced dementia, doctor–patient relationships, doctor–carer relationships and management of chronic conditions other than dementia. Conclusion: General practitioners seemed to contribute little to dementia care overall, particularly regarding symptom management. The exception was patients with advanced stages of dementia, given that specialists no longer followed them up. Remarkably, GPs seemed to be alone within primary care teams in providing dementia care. These findings strongly suggest that Portuguese primary care is not yet prepared to comply with policy expectations regarding the management of dementia.

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Transitioning to Long-Term Care: Family Caregiver Experiences of Dementia, Communities, and Counseling

Objectives: Previous analyses of interventions targeting relationships between family caregivers of people with Alzheimer's disease and related dementias and residential long-term care (RLTC) staff showed modest associations with caregiver outcomes. This analysis aimed to better understand interpersonal and contextual factors that influence caregiver–staff relationships and identify targets for future interventions to improve these relationships. Methods: Using a parallel convergent mixed methods approach to analyze data from an ongoing counseling intervention trial, descriptive statistics characterized the sample of 85 caregivers and thematic analyses explored their experiences over 4 months. Results: The findings illustrated that communication, perceptions of care, and relationships with staff are valued by family caregivers following the transition of a relative with dementia to RLTC. Discussion: The findings deepen understanding of potential intervention targets and mechanisms. These results can inform future psychosocial and psychoeducational approaches that assist, validate, and empower family caregivers during the transition to RLTC.

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Time Effects of Informal Caregiving on Cognitive Function and Well-Being: Evidence From ELSA

Background and Objectives: As informal caregiving becomes prevalent, its consequences for caregivers' cognitive and socioemotional functioning gain more importance for society. There are inconsistent findings regarding the direction of the impact of caregiving-whether caregiving maintains or compromises functioning-and the impact of time-whether the effects accumulate or are stable. In this study, we elucidated 3 time effects of caregiving-concurrent, cumulative, and lagged effects-on cognitive and socioemotional functioning. Research Design and Methods: We used data from Wave 1 (2002–2003) to Wave 8 (2016–2017) in the English Longitudinal Study of Ageing (ELSA) and latent growth curve models with the time-varying predictor to investigate 3 time effects of caregiving on cognitive function (memory and executive function) and well-being (life satisfaction and quality of life). Results: Over and beyond age effects, current caregiving (concurrent effect) was related to worse well-being and better delayed recall. Little robust cumulative effect was found on cognition and well-being. In addition, there were significant and differential lagged effects of caregiving after controlling for concurrent and cumulative effects; that is, caregiving was related to worse well-being and better memory functioning 2–4 years later. Discussion and Implications: The differential concurrent and lagged effects of caregiving on cognitive and socioemotional functioning suggest separate mechanisms for different domains of functioning. The nonsignificant cumulative effects but significant lagged effects imply that even one-time caregiving has long-term (2–4 years) consequences for the caregiver's future functioning, and the mechanism of long-term caregiving effects may be more qualitative than quantitative.

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Telehealth Interventions for Family Caregivers of Persons with Chronic Health Conditions: A Systematic Review of Randomized Controlled Trials

Objective: The purpose of this study was to provide an in-depth analysis of the components and outcomes of telehealth interventions for family caregivers of individuals with chronic health conditions. Methods: A systematic review of 17 databases was conducted for randomized controlled trials published between January 2002 and January 2017. Interventions were analyzed based on type of telecommunication modality, caregiver and care recipient characteristics, intervention components, and caregiver outcomes. Results: A total of 57 articles met criteria for inclusion. Telephone was the most frequently used mode of telehealth delivery and focused primarily on caregivers of older adults with dementia and stroke. Skills training was the most prevalent treatment strategy across telephone, web, and combined telephone and web modalities. Improved psychological functioning was reported most frequently across telehealth modalities. Conclusion: Telehealth is an effective tool in delivering caregiver interventions and leads to significant improvement in caregiver outcomes. Telephone was used most often to deliver cognitive-behavioral and psychoeducational strategies as compared to web and combined telephone and web modalities. Further research is needed to examine the effects of telehealth interventions on caregiving skills and self-efficacy, as well as health outcomes.

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Systematic review of factors associated with hope in family carers of persons living with chronic illness

Aims: To identify factors associated with hope in family carers of persons living with chronic illness. Design: A systematic review of quantitative and mixed method studies on hope in carers of persons living with chronic illness. Data Sources: Five electronic databases (Medline, Cumulative Index to Nursing and Allied Health Literature, Web of Science, ProQuest Dissertations and PsycINFO) were searched from inception to 13 July 2020. Review Methods: Inclusion criteria were the following: (a) study population of adult (18 years of age and older) carers of persons living with chronic illness, (b) hope was measured as a variable, (c) reported factors associated with hope, (d) employed either quantitative or mixed methods design, (e) written in English and (f) was published in peer reviewed journals. All included studies were evaluated for quality using the Mixed Method Appraisal Tool. Results: Twenty-six studies were included in the systematic review. Quality of life, physical and mental health, life satisfaction and the hope of care recipients were found to be positively associated with hope. Carer's coping increased (self-efficacy and caregiver preparedness) as hope increased with a decrease in maladaptive coping strategies. Anxiety, depression, distress, grief and guilt were negatively associated with carers' hope. Carers' hope did not appear to be associated with carer or care-recipient demographic variables. Conclusion: Carers' hope appears to be associated with the carers' over all positive health. The factors associated with carers' hope provide potential areas to focus intervention development such as strategies that increase self-efficacy. More research is needed to clarify if factors such as stage of disease and resilience are associated with hope. Research on carers' hope assessment and intervention development should also focus on factors associated with hope. Impact: The findings underscore the need to assess and work with carers of persons living with chronic illness to enhance their hope.

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SYMPERHEART: an intervention to support symptom perception in persons with heart failure and their informal caregiver: a feasibility quasi-experimental study protocol

Introduction: Symptom perception in heart failure (HF) has been identified as crucial for effective self-care, and is related to patient and health system outcomes. There is uncertainty regarding the feasibility and acceptability of symptom perception support and doubts regarding how to include informal caregivers. This study aims to test the feasibility, acceptability and outcome responsiveness of an intervention supporting symptom perception in persons with HF and their informal caregiver. Methods and analysis: A feasibility study with a quasi-experimental pretest and post-test single group design is conducted. The convenience sample consists of 30 persons with HF, their informal caregivers and six nurses. SYMPERHEART is an evidence-informed intervention that targets symptom perception by educational and support components. Feasibility is measured by time-to-recruit; time-to-deliver; eligibility rate; intervention delivery fidelity rate. Acceptability is measured by rate of consent, retention rate, treatment acceptability and the engagement in the intervention components. Outcome responsiveness includes: HF self-care (via the Self-care of Heart Failure Index V.7.2); perception of HF symptom burden (via the Heart Failure Somatic Perception Scale V.3); health status (via the Kansas City Cardiomyopathy Questionnaire-12); caregivers’ contribution to HF self-care (via the Caregiver Contribution to Self-Care of Heart Failure Index 2); caregivers’ burden (via the Zarit Burden Interview). Clinical outcomes include HF events, hospitalisation reason and length of hospital stay. Descriptive statistics will be used to report feasibility, acceptability, patient-reported outcomes (PRO) and clinical outcomes. PRO and caregiver-reported outcome responsiveness will be reported with mean absolute change and effect sizes. Ethics and dissemination: The study is conducted according to the Declaration of Helsinki. The Human Research Ethics Committee of the Canton of Vaud, Switzerland, has approved the study. Written informed consent from persons with HF and informal caregivers are obtained. Results will be published via peer reviewed and professional journals, and further disseminated via congresses. Trial registration number: ISRCTN18151041.

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Swāsthya, an integrated chronic condition management programme for families of patients with hypertension and diabetes mellitus: a study protocol for a randomised controlled trial

Background: Kerala is known as the diabetes mellitus (DM) and hypertension (HTN) capital of the world, thus compelling health professionals to model strategies, addressing their social, behavioural, and cognitive risk factors and eliminating various barriers to management. This paper describes the protocol of our study that aims to examine the effectiveness and sustainability of an integrated care model for the management of chronic conditions and their risk factors through a family-based intervention. The proposed care model targets to modify systems and processes that predispose to chronic conditions by enhancing social cohesion and social networks, preventing lifestyle risks, developing iterative cognitive interventions, and engaging the family into customised treatment adherence strategies navigated by community health social workers (CHSWs). Methods: A cluster randomised controlled trial (RCT) in selected participants will be conducted involving additional assessments prior to the baseline assessment. The assessment will identify and categorise patients into four risk groups, namely behavioural, social, cognitive, and multiple, based on dominant risks identified. Eligible participants will be randomly allocated (at a ratio of 1:1) into the intervention or control arm. The intervention arm will receive social, behavioural, and cognitive or multiple interventions corresponding to the identified risk groups, whereas the control arm will receive general intervention. Both the groups will be followed up at 6 months and 12 months post baseline to measure outcomes. The primary outcome will be the control of HTN and DM, and secondary outcomes include decreased depression and anxiety and improved functioning, social cohesion, and social network linkages. The sustainability and scalability of this intervention will be assessed through cost effectiveness, acceptability, and user friendliness of the integrated approach by performing a qualitative evaluation. Discussion: This RCT will inform the potential paradigm shift from a medical model of chronic condition management to a multidimensional, multisystem, and multidisciplinary convergence model navigated by CHSWs. Such a model is not currently considered in the management of chronic conditions in Kerala. Trial registration: Trial has been prospectively registered on Clinical Trial Registry of India- CTRI/2020/12/029474 on 1st December 2020.

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Supporting self-care of long-term conditions in people with dementia: A systematic review

Background: Long-term conditions are common in people living with dementia; their self-management is an important determinant of wellbeing. Family carers often support or substitute self-care activities, and act as proxies for self-management, as dementia progresses. Objectives: To conduct the first systematic review of how management of long-term conditions in people with dementia is best enabled and supported, including factors that facilitate or inhibit self-management and management by a proxy. Design: Systematic review. Data Sources We systematically searched MEDLINE, PsychINFO, Embase and Allied and Complementary Medicine databases up to November 2018. Review methods We identified the long-term conditions most prevalent in people with dementia that require an element of self-management. We then developed our inclusion criteria to identify qualitative and quantitative studies describing the self-management (or self-management assisted by family carers) of long-term conditions in people with dementia. Two authors independently rated study validity using a standardised checklist. We synthesised qualitative and quantitative findings using a data driven convergent synthesis approach. Results: We included 12 articles meeting predetermined inclusion criteria: seven qualitative, two case studies, two quantitative and one mixed methods study. We identified four main themes across these studies: (1) dementia symptoms impeding treatment regimens (forgetfulness, decreased understanding, ability to communicate symptoms and behavioural and psychological symptoms); (2) adapting routines to be simpler, (using memory aids and accommodating physical limitations); (3) negotiating self-management support (carer availability and knowledge; balancing needs for safety and empowerment); and (4) interface with professionals, (Routine simplification, condition specific education, and acknowledging carer role). Conclusions: People living with dementia can be supported to manage their own health for as long as possible, through simplifying routines and reminding, but where this can no longer be negotiated, carers take over responsibility for self-management, often due to safety concerns. Empowerment of people with dementia to remain involved in their care reduces the loss experienced by this transition. Communication and partnership between clinicians and carers is critical when supporting people living with a long-term condition and dementia. Care planning for people living with dementia and a long-term condition should include explicit discussion of how these partnerships will work and guidance on strategies carers can use to support people to self-manage long-term conditions.

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Suicidality in family caregivers of people with long-term illnesses and disabilities: A scoping review

Background: An emerging body of international research suggests family caregivers may be a high-risk group for suicide, but the evidence has not been synthesised. Methods: Forty-eight peer-reviewed journal articles were included in this review, spanning low-, middle-, and high-income countries and a variety of illnesses and disabilities. Findings: The proportion of caregivers experiencing suicidal ideation ranged from 2.7% to 71%, with evidence of suicide attempts, deaths by suicide, and deaths by homicide-suicide also reported. Risk and protective factors varied across studies and there was little consideration of differences by caregiving relationship, type of illness/disability, or country. Conclusions: There is sufficient evidence to warrant concern for caregivers around the world and prompt action in policy and practice, but more rigorous research is required to draw clear, nuanced conclusions about risk and inform evidence-based prevention and intervention.

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Structural equation model of affecting factors on elder abuse to patients under hemodialysis by family caregivers

Background: The objectives of the present study were to determine the prevalence of older adults with hemodialysis (HD) abuse by family caregivers and the factors affecting it. Method: This is a correlational-causal study, which is conducted in 2018 in Iran. The sample size was 367 in both groups (the older adults and their family caregivers). Data collection was done using an individual-social information questionnaire for the older adults under hemodialysis and their family caregivers, the questionnaire of elder abuse by family caregivers to the older people under hemodialysis, Zarit Burden Interview and the scale of instrumental activities of daily living (IADL). Data were analyzed by the structural equation model (SEM) method. The Fitness of proposed pattern was measured using the following indexes: chi-square/degree of freedom ratio (CMIN/DF), Normed Fit Index (NFI), comparative fit index (CFI), goodness of fit index (GFI), and standardized root mean squared residual (SRMR). The significant level in this study was considered p < 0.05. Results: The results of the present study showed that more than 70 % of the older adults suffer from elder abuse by family caregivers on average. The highest median elder abuse was related to emotional misbehavior (21.46 ± 6.09) and financial misbehavior (19.07 ± 5.33), respectively. Moderate care burden was experienced by 63.2 % of caregivers. The percentage of older women and men, who needed help with daily activities was 81.4 and 80.5 %, respectively. The results showed that the caregivers’ level of education and care burden with standard beta coefficient of -0.251 and 0.200 and the educational level of older adults and IADL with the best beta coefficient of -0.299 and − 0.234, had the highest regression effect on elder abuse respectively. According to the results, the model-fit indices of the hypothesized model was meet the criteria, with the NFI = 0.951, GFI = 0.970, CFI = 0.967, and SRMR = 0.041. The outcome was suitable for the recommended level, so the hypothetical model appeared to fit the data. Conclusions: The results of the present study showed that the prevalence of elder abuse by family caregivers among the older adults under hemodialysis is high. Providing psychological counseling can reduce the consequences of elder abuse.

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Sociodemographic and clinical variables related to the overburden of the informal caregivers of patients hospitalized for chronic obstructive pulmonary disease exacerbations

Objective: To increase our knowledge of the patient variables related to the overburden of the caregivers of patients with acute exacerbations of chronic obstructive pulmonary disease (AECOPDs). Methodology: This was a cross-sectional study of patients with severe COPD who have informal caregivers. We performed a multivariate analysis of sociodemographic (economic situation, care, dependence, social risk, and use of social services) and clinical (degree of dyspnea, previous hospitalizations, disease impact, pulmonary function, and comorbidity) factors and related these to the burden of informal caregivers, as evaluated using the Zarit scale. Results: The study included 91 patients, age 72.6±8.7 years and 80 were male (89.7%); the mean modified Medical Research Council dyspnea scale (mMRC) score was 2.5±0.8; mean FEV1 was 39.5 ± 13.2%; and 70 patients (76.9%) were dependent for basic activities. Of the informal caregivers, 90 (90.9%) were women, 49 (49.4%) were partners or spouses, and 29 (29.6%) were daughters. The mean Zarit questionnaire score was 51.4±14.2, with 63 of carers (69.2%) perceiving some overburden, and 34 (37.4%) describing the overburden as mild–moderate. The variables related to informal caregiver overburden in the multivariate study were the previous use of social resources [OR = 8.1 (95% CI = 1.03–69.9); p = 0.04], degree of mMRC dyspnea 3–4 [OR =4.7 (95% CI = 1.7–13.2); p = 0.003], and two or more admissions for AEPOC in the previous year [OR = 4.5 (95% CI = 1.7–13.2); p = 0.003]. Of the informal caregivers of patients who had presented two or more of these variables, 92.3% perceived an overburden. Conclusion: The variables associated with overburden are easily accessible in patient medical records, or can be obtained by interviewing patients or their relatives. This informa-tion would allow to detect and assess the overburden of informal caregivers to provide an early warning of this problem. © 2021 Fernández-García et al.

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“She knows me best”: a qualitative study of patient and caregiver views on the role of the primary care physician follow-up post-hospital discharge in individuals admitted with chronic obstructive pulmonary disease or congestive heart failure

Background: Patients with chronic obstructive pulmonary disease (COPD) and congestive heart failure (CHF) are at high-risk of readmission after hospital discharge. There is conflicting evidence however on whether timely follow-up with a primary care provider reduces that risk. The objective of this study is to understand the perspectives of patients with COPD and CHF, and their caregivers, on the role of primary care provider follow-up after hospital discharge. Methods: A qualitative study design with semi-structured interviews was conducted among patients or their family caregivers admitted with COPD or CHF who were enrolled in a randomized controlled study at three acute care hospitals in Ontario, Canada. Participants were interviewed between December 2017 to January 2019, the majority discharged from hospital at least 30 days prior to their interview. Interviews were analyzed independently by three authors using a deductive directed content analysis, with the fourth author cross-comparing themes. Results: Interviews with 16 participants (eight patients and eight caregivers) revealed four main themes. First, participants valued visiting their primary care provider after discharge to build upon their longitudinal relationship. Second, primary care providers played a key role in coordinating care. Third, there were mixed views on the ideal time for follow-up, with many participants expressing a desire to delay follow-up to stabilize following their acute hospitalization. Fourth, the link between the post-discharge visit and preventing hospital readmissions was unclear to participants, who often self-triaged based on their symptoms when deciding on the need for emergency care. Conclusions: Patients and caregivers valued in-person follow-up with their primary care provider following discharge from hospital because of the trust established through pre-existing longitudinal relationships. Our results suggest policy makers should focus on improving rates of primary care provider attachment and systems supporting informational continuity.

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Self-reported burden of caregiver of adults with depression: a cross-sectional study in five Western European countries

Background: Caregiving in depression imposes a complex health and economic burden. Moreover, there is a paucity of studies examining the impact of caregiving for adult relatives with unipolar depression (CG-UD). This study assessed the burden among CG-UD in five western European (EUR5) countries (France, Germany, Italy, Spain and the United Kingdom) compared with caregivers of adults with other chronic comorbidities (CG-OD) and general non-caregiving (non-CG) population. Methods: A retrospective observational study was conducted using the 2016 National Health and Wellness Survey (NHWS) in EUR5. Differences in humanistic burden (health status and health-related quality of life [HRQoL]) and economic burden (work productivity and activity impairments, health care resource utilization [HRU]) were assessed between CG-UD and CG-OD respondents. Caregiver-specific burden (caregiving responsibilities and caregiver reaction assessment [CRA]) was assessed between caregiver groups. Generalized linear models were used to compare between the groups on the outcomes after adjusting for potential confounders. Results: Of the 77,418 survey respondents examined, 1380 identified as CG-UD, 6470 as CG-OD and 69,334 as non-CG. Compared to CG-OD and non-CG, CG-UD, reported significantly lower health status (e.g., EuroQoL-5 Dimensions-5 Levels [EQ-5D-5L]: CG-UD = 0.63, CG-OD = 0.67, and non-CG = 0.73, p < 0.001) and HRQoL (e.g., mental component score: CG-UD = 35.0, CG-OD = 37.8, and non-CG = 40.7, p < 0.001). Although effect sizes were small (d < 0.2), minimal clinically important differences (MCID) were apparent for HRQoL and health status. Increased economic-related burden was observed for work and activity impairment (e.g., absenteeism: CG-UD = 32.6%, CG-OD = 26.5%, and non-CG = 14.8%, p < 0.001) and HRU (e.g., healthcare provider [HCP; mean, past 6 months]: CG-UD = 10.5, CG-OD = 8.6, and non-CG = 6.8, p < 0.001). Caregiving-specific burden was associated with experiencing a greater lack of family support (CG-UD: 2.9 vs CG-OD: 2.8, p < 0.01), impact on finances (CG-UD: 3.0 vs CG-OD: 2.9, p = 0.036), and on the caregiver’s schedule (CG-UD: 3.1 vs CG-OD: 3.0, p = 0.048). Conclusion: Caregivers of persons with chronic disease experience an excess humanistic and economic burden compared to the general population, with a greater burden confronting caregiver for adults with depression. These findings illustrate the far-reaching burden of depression on both the patient and the relatives who care for them.

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Self-Care for Caregivers of Individuals Living With Multiple Sclerosis: Testing Mediation Models of Caregiver Stress, Health, and Self-Care

Background: Individuals with Multiple Sclerosis (MS) often receive home health care, yet little research investigates the health of informal caregivers of individuals with MS. Methods: We tested a mediation model in which associations between caregiver stress and caregiver self-care were explained by each of four a priori caregiver health factors—caregiver negative affect, pain, tiredness, and functional limitations. Participants (n = 60 informal caregivers) were recruited online or in-person from March—July 2018, and completed an online survey assessing demographics and their caregiving experience. Results: After controlling for demographics, only caregiver tiredness mediated the association between caregiver stress and caregiver self-care. Therefore, caregiver tiredness may be an important construct for assessment, intervention, and future research, among caregivers of individuals with MS, and among anyone providing home health care. Conclusions: These findings have research, clinical, and policy implications.

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

Background: 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. Objectives: This study aimed to understand the self‐care experiences of patients with COPD and explore the role of the family in self‐care. Methods: 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. Results: 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. Conclusions: 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.

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Secondary Impacts of COVID-19 Pandemic in Fatigue, Self-Compassion, Physical and Mental Health of People with Multiple Sclerosis and Caregivers: The Teruel Study

Background: The secondary impacts of the COVID-19 pandemic are distress triggers and risk factors for mental health. Conversely, self-compassion skills and compassionate thoughts/behaviors towards suffering may contribute to their alleviation. Both psychological constructs are interrelated in life-threatening diseases such as multiple sclerosis (MS). Methods: The Teruel Study retrospectively evaluated the impact of strict confinement on the 44 people with MS of this Spanish province and 24 caregivers, specifically assessing (1) fears and perceptions; (2) self-compassion (people with MS) and compassion (caregivers); (3) physical and mental health, and fatigue. Results: Despite better housing conditions, people with MS considered confinement very difficult to handle, more than their caregivers, but they were less afraid of COVID-19 and worsening of MS. Still, they recognized worse health than before confinement. Reclusion and lack of walks were the worst of confinement. Caregivers also referred to lack of leisure and uncertainty–fear. All agreed the best was staying with the family, but some found ‘nothing’ positive. Self-compassion remained moderate–high and strongly correlated with their moderate levels of social function, vitality, physical role, and global health. Physical and cognitive fatigue scores were high, and self-compassion negatively correlated with them, explaining a 19% variance in global health. The high compassion of the caregivers did not correlate with any variable.

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Replicating an effective VA program to train and support family caregivers: a hybrid type III effectiveness-implementation design

Background: Caring for a growing aging population using existing long-term care resources while simultaneously supporting and educating family caregivers, is a public health challenge. We describe the application of the Replicating Effective Programs (REP) framework, developed by the Centers for Disease Control Prevention and used in public health program implementation, to scale up an evidence-based family caregiver training intervention in the Veterans Affairs (VA) healthcare system. Methods: From 2018 to 2020, clinicians at eight VA medical centers received REP-guided implementation including facilitation, technical assistance, and implementation tools to deliver the training program. The project team used the REP framework to develop activities across four distinct phases – (1) pre-conditions, (2) pre-implementation, (3) implementation, and (4) maintenance and evolution – and systematically tracked implementation facilitators, barriers, and adaptations. Results: Within the REP framework, results describe how each medical center adapted implementation approaches to fit local needs. We highlight examples of how sites balanced adaptations and intervention fidelity. Conclusions: The REP framework shows promise for national expansion of the caregiver training intervention, including to non-VA systems of care, because it allows sites to adapt while maintaining intervention fidelity. Trial registration NCT03474380. Date registered: March 22, 2018.

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Relieving distressed caregivers (ReDiCare study): study protocol of a randomized pragmatic trial

Background: Providing care for someone with a disease or chronic condition can have a negative psychological, physical, social, and economic impact upon informal caregivers. Despite the socio-economic relevance and more than three decades of caregiver intervention research only very few translational efforts of successful interventions are reported. Still less of these interventions have been implemented into routine services. Objectives: The aim of the ReDiCare study (German acronym BerTA) is to evaluate the effectiveness of a stepped counselling approach for burdened caregivers delivered by care counsellors of two long-term care insurances and registered psychotherapists. Methods/design: A pragmatic randomised controlled trial with 572 caregivers of older adults (≥ 60 years) receiving benefits of one of the two participating long-term care insurances. Participants are assigned (t0) to either the ReDiCare intervention or a control group receiving routine care and counselling. Data are collected at baseline (-t1), 3-month (t1), 9-month (t2) and 15-month (t3). The 9-month post-intervention assessment (t2) is the primary endpoint to evaluate the results on the primary and secondary outcomes, measured by self-reported questionnaires. Depressive symptoms measured with the CES-D are the primary outcome. The main secondary outcomes are physical complaints, utilization of psychosocial resources, caregiver self-efficacy and burden, positive aspects of caregiving and perceived care quality. A process evaluation, including audio tapes, self-report questionnaires and documentation will be conducted to examine internal and external validity of the intervention. Data on direct and indirect costs are collected for the (health) economic evaluation, using a health care perspective and a societal perspective. Discussion: While comparable previous caregiver interventions have been developed and evaluated for specific caregiver groups (e.g. dementia caregivers, stroke caregivers), the ReDiCare study will indicate whether a stepped approach will be effective also in a broader group of caregivers. The intervention is one of the very few translational studies in caregiver intervention research and will provide valuable insights into relevant factors for training, intervention protocol adherence, effectiveness, and costs for future implementation steps. Trial registration Deutsches Register Klinischer Studien (German Clinical Trials Register), DRKS00014593 (www.drks.de, registered 14 May 2018) and International Clinical Trials Registry Platform, DRKS00014593 (https://apps.who.int/trialsearch/).

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Relationship Satisfaction in People with Parkinson’s Disease and Their Caregivers: A Cross-Sectional Observational Study

Background: Parkinson’s disease (PD) is a neurodegenerative disorder, which leads to reduced health-related quality of life (HR-QoL) and autonomy in advanced stages of the disease. Hence, people with PD (PwPD) are in need of help, which is often provided by informal caregivers, especially spouses. This might influence the relationship satisfaction in patients and their spousal caregivers. Additionally, previous studies have shown that a reduced relationship satisfaction may result in mental disorders and reduced physical health. Objectives & Methods: The aim of this study is to identify factors influencing PwPD and their caregivers’ relationship satisfaction in a cross-sectional observational study. Results: Analyses revealed an overall satisfying relationship, measured by the Quality of Marriage Index, in PwPD (n = 84) and their caregivers (n = 79). Relationship satisfaction in PwPD mildly decreased with reduced HR-QoL and more severe depressive symptoms. Reduced relationship satisfaction in caregivers was significantly associated with decreased HR-QoL, higher caregiver burden, more severe depressive symptoms and increased neuropsychiatric symptoms in PwPD. Conclusions: Further studies are needed to investigate the influence of the identified factors over time and if relationship satisfaction has a reciprocal impact on caregiver burden, HR-QoL as well as mental and physical health.

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A qualitative investigation into the impact of hemophagocytic lymphohistiocytosis on children and their caregivers

Background: Primary hemophagocytic lymphohistiocytosis (pHLH) is a rare and life-threatening disorder, which usually occurs during infancy or early childhood and is characterized by abnormal activation of the immune system. However, the burden of pHLH on children and their families has not been previously evaluated. Methods: This qualitative study investigated the impact of pHLH and its treatment on the physical, emotional, and social well-being of patients and caregivers in the USA and UK using interviews to provide a comprehensive insight from the perspective of the caregivers and young survivors. Results: Twenty-one caregivers were enrolled (median [range] age, 41.1 [26-58] years) and represented 20 patients, four from the UK and 16 from the USA. At enrollment, 17 of the 20 patients were alive with a median [range] age of 12.75 [5-31] years at a mean [range] of 7.8 [0.6-11.6] years after diagnosis. In addition, four adult survivors (median [range] age, 23.3 [21-30] years) were also enrolled (total participants n = 25). From noticing initial symptoms to receiving a diagnosis, caregivers reported a mean (range) of 25.9 (0-258) months. pHLH and its treatment had a substantial and long-lasting impact on patients and caregivers, affecting their physical, emotional and social well-being, family relationships, friendships, and ability to work and study. Many of the experiences reported were negative, even after curative treatment, and some participants experienced long-lasting physical and emotional issues. The most noticeable impact of pHLH for patients was on their physical well-being, whereas for caregivers it was emotional well-being. Across all participants there was a sense of isolation due to the illness and its treatment, particularly regarding the patient being immunocompromised and the fear of infection. Areas having a major impact and considered in need of improvement included: delays in diagnosis, lack of patient-specific information on pHLH and a lack of support and understanding about the condition. Conclusions: pHLH placed a substantial burden on patients and caregivers, which for some were long-lasting. This was compounded by the lack of awareness and understanding of pHLH by healthcare professionals, and a lack of accessible information for those affected by pHLH. 

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Psychosocial predictors of adverse outcomes in rural heart failure caregivers

Introduction: Depressive symptoms, negative life changes, poor self-care, and higher caregiver burden are common in caregivers who assist individuals with heart failure (HF) in managing daily activities and disease-related symptoms. Previous research findings suggest social support, problem solving, and family function may influence these outcomes. However, the influence of these factors on outcomes in rural HF caregivers is unknown. The purpose of this study is twofold: (1) to examine whether social support, problem solving, and family function predicted depressive symptoms, caregiving-related life changes, self-care, and caregiver burden in rural HF caregivers; and (2) to compare differences in these variables between rural and urban caregivers. Methods: Rural caregivers (n=114) completed an online researcher-developed sociodemographic and clinical survey and standardized (Likert-type) self-report instruments. Participants were recruited locally from south-eastern USA (using face-to-face and telephone contacts, posted flyers, newspaper advertisements, and social media), nationally (newspaper advertisements and social media sites) and internationally (using social media). Potential participants were directed to the study website to complete the online surveys. These methods recruited participants who lived in 24 states within the USA, as well as from Canada, England, Ireland, Scotland, and Wales. Demographic statistics and Mann--Whitney U-test, as well as bivariate correlations, multivariate linear modelling, and Roy's largest root, were used to analyse data, controlling for covariates. Results: Rural (n=114) caregivers were primarily Caucasian (84.2%), women (58.8%), and 41.45 (±9.013) years old. Social support had significant effects on depressive symptoms (ηp² =0.384, p<0.001), self-care (ηp² =0.108, p=0.001), and life changes (ηp² =0.055, p=0.016), while problem solving showed significant effects on depressive symptoms (ηp² = 0.078, p=0.004) and caregiver burden (ηp² =0.23, p<0.001). Family function had significant effects on life changes (ηp² =0.104, p=0.001), self-care (ηp² =0.088, p=0.002), and caregiver burden (ηp² =0.116, p<0.001). Compared to urban (n=412) participants, rural caregivers experienced significantly less social support (p=0.001), worse problem-solving skills (p=0.003) and family functioning (p=0.009), and greater depressive symptoms (p≤0.01) and subjective burden (p=0.001). There were no significant differences in caregiver self-care (p=0.416) and perceived life changes (p=0.346) among rural and urban caregivers. Conclusion: Both social support and problem solving have significant effects on depressive symptoms in rural HF caregivers, while social support and family function influences self-care. Problem solving and family function also affect caregiver burden, while social support and family functioning influences caregiver life changes. Rural caregivers are often separated by long distances, and have transportation issues and limited access to healthcare providers and support services; therefore, innovative strategies are needed to explore the usefulness of these variables in improving caregiver outcomes.

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Psychosocial impact of Covid-19 outbreak on Italian asthmatic children and their mothers in a post lockdown scenario

Background: Italy was the first European country to fight the Covid-19 outbreak. To limit the transmission of the virus, the Italian Government imposed strict domestic quarantine policies and temporary closure of non-essential businesses and schools from March 10th,2020. Although more and more literature is exploring the impact of the pandemic on non-referred children and families, only a few studies are focused on the psychosocial impact of Covid-19 in chronically ill children and their caregivers. Methods: The present study investigates asthma control and children and mothers’ psychological functioning (i.e.: psychological well-being, fear of contagion, and mothers’ Covid-19 related fears) in 45 asthmatic children aged 7-to-14, compared to a control sample. The subjects were administered an online survey after the lockdown (from 28th May to 23rd August 2020). Results: The analysis shows that asthmatic children presented higher concern in relation to contagion, however, no difference in psychological functioning was displayed between the two cohorts. Mothers reported more Covid-19 related fears, and greater worries according to the resumption of their children’s activities. Moreover, they indicated a global worsening of their psychological well-being during the lockdown. Furthermore, regarding the clinical sample, the multivariate regression model showed that a worsening of mothers' psychological and children’s physical well-being was associated with a worsening of children’s psychological well-being during the lockdown. Conclusions: The results of this study indicate that mothers of asthmatic children can be more prone to experience psychological fatigue in a pandemic scenario. Special programs should be developed to support caregivers of chronically ill children.

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Psychosocial Adjustment to Illness Scale in family caregivers of patients with Parkinson’s Disease: Spanish validation study

Background: Psychosocial adjustment to a complex and disabling long‐term condition like Parkinson´s disease is a complex, dynamic, cyclical and interactive process. Family caregivers, face multiple challenges that require a significant effort in terms of psychosocial adjustment, which must be considered by healthcare professionals in order to provide a holistic care. The patients’ self‐report version of the Psychosocial Adjustment to Illness Scale (PAIS‐SR), which has been validated in Spain for use in Parkinson's disease, is designed to evaluate the psychosocial adjustment of patients. Objectives: Our purpose was to validate the Spanish PAIS‐SR version for caregivers of patients with Parkinson's disease. Methods: An open, national cross‐sectional study with one point‐in‐time evaluation and retest was carried out in 450 family caregivers of patients with Parkinson's disease. Data were collected in Spain from April 2016 to September 2017. Results: The psychometric analysis performed showed that the Spanish version of the PAIS‐SR for caregivers presents adequate indicators of reliability, internal and external validity, and is structured according to the seven‐domain model proposed by the author of the instrument.

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A psychometric evaluation of the Caregiver Contribution to Self-Care of Heart Failure Index in a Thai population

Background: Caregivers are major contributor to the self-care of patients with heart failure. The Caregiver Contribution to Self-Care of Heart Failure Index (CC-SCHFI) measures these contributions across three scales: self-care maintenance (symptom monitoring and treatment adherence); self-care management (dealing with symptoms); and confidence in contributing to the self-care (self-efficacy in managing self-care) of patients with heart failure. Informal caregivers play a vital role in supporting family members with heart failure in Thailand, yet no validated tool exists to measure their contribution. We examined the psychometric properties of the CC-SCHFI in a Thai population. Methods: The CC-SCHFI was translated into Thai using a standard forward and backward translation procedure. A cross-sectional design was used to examine the psychometric properties of the Thai version of the CC-SCHFI in 100 family caregivers of heart failure patients in Southern Thailand. Confirmatory factor analysis was used to assess construct validity, and factor score determinacy coefficients were computed to evaluate internal consistency reliability. Results: The Thai version of the CC-SCHFI demonstrated acceptable internal consistency (composite reliability of each scale ranged from 0.76 to 0.99). Reliability estimates were adequate for each scale (McDonald’s omega ranged from 0.75 to 0.96). Confirmatory factor analysis supported the original factor structure of the instrument, with good fit indices for all three scales (comparative fit index = 0.98–1.00; root-mean-square error of approximation = 0.00–0.07). Conclusions: The Thai version of the CC-SCHFI appears to be a valid and reliable instrument for measuring caregiver contributions to self-care maintenance and self-care management as well as contributing to caregiver confidence in the self-care of Thai heart failure patients.

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Profiles of eHealth Adoption in Persons with Multiple Sclerosis and Their Caregivers

Background: Persons with multiple sclerosis (pwMS) are often characterized as ideal adopters of new digital healthcare trends, but it is worth thinking about whether and which pwMS will be targeted and served by a particular eHealth service like a patient portal. With our study, we wanted to explore needs and barriers for subgroups of pwMS and their caregivers when interacting with eHealth services in care and daily living. Methods: This study comprises results from two surveys: one collecting data from pwMS and their relatives (as informal caregivers) and another one providing information on the opinions and attitudes of healthcare professionals (HCPs). Data were analyzed descriptively and via generalized linear models. Results: 185 pwMS, 25 informal caregivers, and 24 HCPs in the field of MS participated. Nine out of ten pwMS used information technology on a daily base. Individual impairments like in vision and cognition resulted in individual needs like the desire to actively monitor their disease course or communicate with their physician in person. HCPs reported that a complete medication overview, additional medication information, overview of future visits and a reminder of medication intake would be very helpful eHealth features for pwMS, while they themselves preferred features organizing and enriching future visits. Conclusions: A closer look at the various profiles of eHealth adoption in pwMS and their caregivers indicated that there is a broad and robust enthusiasm across several subgroups that does not exclude anyone in general, but constitutes specific areas of interest. For pwMS, the focus was on eHealth services that connect previously collected information and make them easily accessible and understandable.

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Professional home care and the objective care burden for family caregivers of persons with spinal cord injury: Cross sectional survey

Background: Spinal cord injury imposes high demands on family caregivers providing long-term care. Professional home care has been suggested for family caregivers’ relief. However, it is not clear whether professional home care can achieve the goal of relieving family caregivers. Objective: To quantify to what extent professional home care was used as a relief or replacement for family caregivers, using the case of care for persons with spinal cord injury in Switzerland. Design: Cross-sectional survey. Setting: Community setting in Switzerland. Participants: 717 family caregivers of persons with spinal cord injury living at home. Methods: Linear regression analyses were applied to investigate the relationship between care hours by family caregivers and the use of professional home care. Percentages of family caregivers that assisted in different tasks, and their time investment in the tasks, were contrasted between those with and without professional home care. Multiple logistic regression compared the likelihood of specific tasks being assisted by family caregivers dependent on whether professional home care was in place. The reasons given for not hiring more professional home care despite unmet needs were described with relative frequencies. Results: Adjusted for non-utilization, care hours of family caregivers had a positive, but insignificant, relationship with the hours of professional home care (Coef. = 0.21, 95% CI: –0.05–0.47). Assistance in activities of daily living was more frequent in family caregivers with professional home care. Eating and drinking assistance was provided by 47% of family caregivers with professional home care (versus 18% of those without professional home care). The most frequent task in instrumental activities of daily living was housekeeping (88% of family caregivers with professional home care and 83% of those without professional home care). After adjusting for characteristics of the caregivers and care recipients, significantly lower odds of assistance were found in washing feet (OR 0.39, 95% CI: 0.22–0.71), transferring to the toilet or bathtub (OR 0.53, 95% CI: 0.29–0.96), and climbing stairs (OR 0.26, 95% CI: 0.09–0.69). Higher odds of assistance were found in respiratory care (OR 2.22, 95% CI: 1.04–4.74) and bladder management (OR 1.99, 95% CI: 1.05–3.76) with professional home care in place. No significant difference was found in other tasks. Conclusion: Professional home care is a strong support to caregivers in high care demand situations, but it is not a replacement. The present study recommends further relief, empowerment, and acknowledgement for family caregivers. 

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PRN Medicines Management for Older People with Long-Term Mental Health Disorders in Home Care

Background: Older people with long-term mental health conditions who receive care in their own home are vulnerable to the inappropriate use of medications and polypharmacy given their underlying health conditions and comorbidities. Inappropriate use of pro re nata (PRN) medications in these older people can enhance their suffering and have negative consequences for their quality of life and well-being, leading to readmission to healthcare settings and the increased cost of health care. Methods: This narrative review on published international literature aims at improving our understanding of medicines management in home care and how to improve PRN medication use among older people with long-term health conditions in their own home. Results: Accordingly, the improvement of PRN medicines management for these older people requires the development of an individualised care plan considering ‘reduction of older people’s dependence on PRN medications’, ‘empowerment of family caregivers’, and ‘support by healthcare professionals.’ PRN medication use should be reduced through deprescription and discontinuation strategies. Also, older people and their family caregivers should be encouraged to prioritize the use of non-pharmacologic methods to relieve physical and psychological problems. Conclusions: Besides the empowerment of family caregivers through role development, education and training about PRN medications, and involvement in decision-making, they need support by the multidisciplinary network in terms of supervision, monitoring, and home visits.

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Patient and caregiver experiences of living with acute hepatic porphyria in the UK: a mixed-methods study

Background: This study used quantitative and qualitative research methods to analyze how acute hepatic porphyria (AHP) affects patients with varying annualized porphyria attack rates. The overall impact of AHP on patients and caregivers, including their quality of life, was explored. The nature and treatment of acute attacks, experiences of long-term heme arginate treatment and access to other appropriate treatment, and the extent of and treatment for chronic symptoms were also investigated within this study. Methods: Patient and caregiver data were collected via an online survey of members of the British Porphyria Association, followed by an optional 1-h telephone interview. Results: Thirty-eight patients and 10 caregivers responded to the survey. Of those, 10 patients and three caregivers completed follow-up interviews. Overall, 19 patients (50%) had experienced an acute attack within the previous 2 years, and the severity and types of symptoms experienced during or between acute attacks varied considerably. There were no clear definitions among patients for ‘mild’ or ‘severe’ attacks. Treatments and treatment settings used to manage attacks also varied. Following unsatisfactory care experiences at hospitals, some patients reported avoiding further hospital services for later attacks. Therefore, using settings of care as a measure of attack severity should be avoided. Ninety-four percent of patients also experienced chronic symptoms, which were as varied as acute attacks. Pain was the predominant chronic symptom and was managed with opioids in severe cases. Regardless of AAR, porphyria heavily impacted the daily lives of patients and caregivers. Although patients experiencing frequent attacks generally endured a greater impact on their daily life, patients with less frequent attacks also experienced impacts on all domains (social, leisure activities, relationship with family, relationships, psychological wellbeing, finances, employment, and study). Caregivers were most affected in the finance, relationships with family, and employment domains, and just over half of the caregivers reported a moderate impact on their psychological wellbeing. Conclusions/implications: The burden of illness with AHP is high across all patients, regardless of frequency of attacks, and AHP negatively affects patients and caregivers alike.

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Parkinson’s Disease and Deep Brain Stimulation Have an Impact on My Life: A Multimodal Study on the Experiences of Patients and Family Caregivers

Background: Parkinson’s disease (PD) has a large impact on patients’ physical and mental health, which also greatly affects their family caregivers. Deep brain stimulation (DBS) has emerged as an effective treatment for PD, but different authors have expressed their concerns about the potential impact of DBS on personality and identity. Objectives: Our study aims at better understanding how patients and family caregivers experience life with PD and DBS, the impact of both on their personal and social lives, and their perception of the changes that have occurred as a result of the disease and the treatment. Methods: Our study applies a multimodal approach by means of narrative semi-structured interviews and drawings. Findings: Seven principal themes have been identified: “everyone’s Parkinson’s is different”, “changing as a person during the disease”, “going through Parkinson’s together”, “DBS improved my life”, “I am treated with DBS but I have Parkinson’s still”, “DBS is not perfect”, and “being different after DBS”. PD is perceived as an unpredictable and heterogeneous disease that changes from person to person, as does the effect of DBS. While DBS side-effects may have an impact on patients’ personality, behavior, and self-perception, PD symptoms and drug side-effects also have a great impact on these aspects.

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Parent–Child Relationship Quality as a Mediator of the Association between Perceived Stress and Diabetes Self-Management in Adolescents With Type 1 Diabetes

Background: Diabetes self-management is suboptimal in adolescents with type 1 diabetes (T1D), including those in China. Objectives: The aim of the study was to investigate the impact of parent–child relationship quality on diabetes self-management. Data were collected by a self-report survey among 122 Chinese adolescents from April to July 2017. The data were analyzed using a one-way analysis of variance, descriptive analyses, correlation analyses, and mediation analyses. Results: The mean age was 13.8 (range, 10–18) years, and the mean diabetes duration was 4.1 (±3.1) years. About half of the adolescents with T1D experienced high levels of perceived stress. Parent–child relationship quality mediated the associations between perceived stress and collaboration with parents, diabetes care activities, and diabetes communication on aspects of diabetes self-management (p s < 0.05). Conclusion: To reduce the negative impacts of perceived stress on diabetes self-management in this population, parent–child relationship quality should be considered an important element of family-based interventions and clinical practice.

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Parent Perspectives on Educational and Psychosocial Intervention for Recent-Onset Type 1 Diabetes in Their School-Age Child: A Qualitative Study

Objective: The recent-onset period of type 1 diabetes (T1D) in early school-age children should include comprehensive, parent-focused T1D education as well as family-centered resources and support to help with adjustment. Here, we present parent/caregiver perspectives on specific areas of concern during the recent-onset period of T1D and their preferred timing for different topics related to T1D education. Methods: Parents/caregivers of 5- to 9-year-old children with T1D completed a card-sorting task and qualitative interview to describe ongoing areas of concern and preferred educational topics during the first year after T1D diagnosis. Results: Thirteen parents/caregivers (aged 35.1 ± 6.9 years) of a child with T1D (aged 8.9 ± 0.8 years, 11.3 ± 7.0 months post-diagnosis) completed the card-sorting task, and 11 completed the qualitative interview. Parents/caregivers endorsed four preferred stages of education: basic education and T1D survival skills during month 1 post-diagnosis, application and practice of T1D skills from months 1–3, access to community supports to cope with anxiety and distress from months 3–6, and support to build autonomy and manage burnout beyond month 6 post-diagnosis. Parents/caregivers endorsed four main themes for ongoing concerns: anxiety, autonomy, distress, and support. Conclusion: Parents endorsed four time points for education and psychosocial services within the first year of a T1D diagnosis. Parents/caregivers may benefit the most from psychosocial interventions 3–6 months post-diagnosis, once they have had sufficient time to develop basic T1D management skills. These findings support the need for regular parent psychosocial screening and access to scalable psychosocial interventions in the first year post-diagnosis of T1D.

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Parent Experiences With Electronic Medication Monitoring in Pediatric Asthma Management: Qualitative Study

Background: Electronic medication monitoring (EMM) is a digital tool that can be used for tracking daily medication use. Previous studies of EMM in asthma management have been conducted in adults or have examined pediatric interventions that use EMM for less than 1 year. To understand how to improve EMM-enhanced interventions, it is necessary to explore the experiences of parents of children with asthma, recruited from outpatient practices, who completed a 12-month intervention trial. Objective: The objective of our study was to use qualitative inquiry to answer the following questions: (1) how did using an EMM-enhanced intervention change parents'/caregivers’ experiences of managing their child’s asthma, and (2) what do parents recommend for improving the intervention in the future? Methods: Parents were recruited from the intervention arm of a multicomponent health intervention enhanced by Bluetooth-enabled sensors placed on inhaler medications. Semistructured interviews were conducted with 20 parents of children aged 4-12 years with asthma. Interviews were audio-recorded, transcribed, and inductively analyzed using a constant comparative approach. Results: Interview participants reflected an even mix of publicly and privately insured children and a diverse racial-ethnic demographic. Parents discussed 6 key themes related to their experience with the EMM-enhanced intervention for the management of their child's asthma: (1) compatibility with the family's lifestyle, (2) impact on asthma management, (3) impact on the child’s health, (4) emotional impact of the intervention, (5) child’s engagement in asthma management with the intervention, and (6) recommendations for future intervention design. Overall, parents reported that the 12-month EMM intervention was compatible with their daily lives, positively influenced their preventive and acute asthma management, and promoted their child's engagement in their own asthma management. While parents found the intervention acceptable and generally favorable, some parents identified compatibility issues for families with multiple caregivers and frustration when the technology malfunctioned. Conclusions: Parents generally viewed the intervention as a positive influence on the management of their child's asthma. However, our study also highlighted technology challenges related to having multiple caregivers, which will need to be addressed in future iterations for families. Attention must be paid to the needs of parents from low socioeconomic households, who may have more limited access to reliable internet or depend on other relatives for childcare. Understanding these family factors will help refine how a digital tool can be adopted into daily disease management of pediatric asthma.

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On the way home: a BCI-FES hand therapy self-managed by sub-acute SCI participants and their caregivers: a usability study

Background: Regaining hand function is the top priority for people with tetraplegia, however access to specialised therapy outwith clinics is limited. Here we present a system for hand therapy based on brain-computer interface (BCI) which uses a consumer grade electroencephalography (EEG) device combined with functional electrical stimulation (FES), and evaluate its usability among occupational therapists (OTs) and people with spinal cord injury (SCI) and their family members. Methods: Users: Eight people with sub-acute SCI (6 M, 2F, age 55.4 ± 15.6) and their caregivers (3 M, 5F, age 45.3 ± 14.3); four OTs (4F, age 42.3 ± 9.8). User Activity: Researchers trained OTs; OTs subsequently taught caregivers to set up the system for the people with SCI to perform hand therapy. Hand therapy consisted of attempted movement (AM) of one hand to lower the power of EEG sensory-motor rhythm in the 8-12 Hz band and thereby activate FES which induced wrist flexion and extension. Technology: Consumer grade wearable EEG, multichannel FES, custom made BCI application. Location: Research space within hospital. Evaluation: donning times, BCI accuracy, BCI and FES parameter repeatability, questionnaires, focus groups and interviews. Results: Effectiveness: The BCI accuracy was 70–90%. Efficiency: Median donning times decreased from 40.5 min for initial session to 27 min during last training session (N = 7), dropping to 14 min on the last self-managed session (N = 3). BCI and FES parameters were stable from session to session. Satisfaction: Mean satisfaction with the system among SCI users and caregivers was 3.68 ± 0.81 (max 5) as measured by QUEST questionnaire. Main facilitators for implementing BCI-FES technology were “seeing hand moving”, “doing something useful for the loved ones”, good level of computer literacy (people with SCI and caregivers), “active engagement in therapy” (OT), while main barriers were technical complexity of setup (all groups) and “lack of clinical evidence” (OT). Conclusion: BCI-FES has potential to be used as at home hand therapy by people with SCI or stroke, provided it is easy to use and support is provided. Transfer of knowledge of operating BCI is possible from researchers to therapists to users and caregivers. Trial registration Registered with NHS GG&C on December 6th 2017; clinicaltrials.gov reference number NCT03257982, url: https://clinicaltrials.gov/ct2/show/NCT03257982.

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Older Caregivers With HIV: An Unrecognized Gap in the Literature

Background: Although the number of older people living with HIV (PLWH) is growing, prior research has focused on older PLWH as care recipients and psychosocial factors (e.g., stigma, social support) associated with their HIV care. Literature on HIV caregiving mainly focuses on family members providing care to PLWH or children of parents with HIV. There is a gap in the literature in terms of older PLWH's roles as caregivers to their family members. Thanks to combination antiretrovirals that helpPLWHlive longer and have healthier lives, many olderPLWHnow find themselves in a position to provide care to family members. To help olderPLWHage successfully, it is important to understand their role as caregivers while they juggle responsibilities with their own health care needs. Objectives: This article elucidates this gap in the literature on older PLWH who are caregivers and provides direction for a research agenda and potential clinical implications.

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A Nurse-Led Education Program for Pneumoconiosis Caregivers at the Community Level

Background: Pneumoconiosis is an irreversible chronic disease. With functional limitations and an inability to work, pneumoconiosis patients require support from family caregivers. However, the needs of pneumoconiosis caregivers have been neglected. Objectives & Methods: This study aimed to evaluate the effectiveness of a nurse-led education program, which involved four weekly 90-min workshops led by an experienced nurse and guided by Orem’s self-care deficit theory. A single-group, repeated-measure study design was adopted. Caregivers’ mental health (Hospital Anxiety and Depression Scale, HADS, four single items for stress, worriedness, tiredness, and insufficient support), caregiving burdens (caregiving burden scale, CBS), and unmet direct support and enabling needs (Carer Support Needs Assessment Tool, CSNAT) were measured at the baseline (T0), immediately after (T1), and one month after intervention (T2); 49, 41, and 28 female participants completed the T0, T1, and T2 measurements. Mean age was 65.9 years old (SD 10.08) with a range between 37 and 85 years old. Results: The program improved the caregivers’ mental wellbeing, and reduced their caregiving burdens and their unmet support and enabling needs, both immediately (T1) and one-month after the intervention (T2). In particular, the intervention improved the caregivers’ mental wellbeing significantly, specifically depression symptoms, stress, and tiredness immediately after the intervention; and reduced most of their unmet support needs and unmet enabling needs one-month after the intervention. Conclusions: This was the first nurse-led program for pneumoconiosis caregivers and should serve as a foundation for further studies to test the program with robust designs.

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Non-spousal family support, marital status, and heart problems in adulthood

Background: Support from one's spouse has long been documented as a significant determinant of health for married individuals. However, non-spousal family support may play an important role in health particularly for unmarried individuals. Objectives: Therefore, this study examined whether the association between non-spousal family support and diagnosis of heart problems differed by marital status and whether gender and education moderated these associations. Results: Data came from the first two waves of the Midlife in the United States (MIDUS) study. This study selected respondents who participated in both waves of MIDUS and were not diagnosed with a heart problem at Wave 1 (N = 3,119). Participants reported whether they had any heart trouble. Discrete-time event history analysis was used to examine the risk of heart problems between MIDUS Waves 1 and 2. A higher level of non-spousal family support was associated with a lower risk of developing a heart problem only among unmarried women and unmarried individuals with high school education or less, and not for married individuals. Conclusions: Findings highlight the importance of considering specific sources of family support when studying heart health, and the health-protective role of non-spousal family support for those who are not married.

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Needs and Experiences of Children and Adolescents with Pediatric Multiple Sclerosis and Their Caregivers: A Systematic Review

Background: In the present study we conduct a systematic review to evaluate the needs and experience of people with pediatric multiple sclerosis (MS) and their caregivers. Methods: The literature search was conducted across 10 academic databases, adhering to PRISMA-P guidelines. Quality appraisal was conducted using the mixed method appraisal test for individual studies, and GRADE-CERQual to establish overall confidence of findings. Results were analyzed using a process of narrative synthesis. Results: We identified 26 studies which included 2253 children/adolescents with MS (CAMS) and 1608 caregivers. MS was reported to negatively impact experiences for CAMS in domains such as of school performance, social relationships, mental health, and overall physical functioning. Specifically, fatigue and social support were reported as the most important barriers and facilitators for CAMS, respectively. In terms of caregiver experience, negative impacts were reported on social functioning, mental health, and quality of life. Additionally, lack of awareness concerning MS was one of the biggest challenges reported. Caregivers expressed needs for psychological and social support. Conclusions: This study provides the first evidence regarding the needs and experiences of CAMS and their caregivers. Findings can be used to address policy gaps for supporting families affected by pediatric MS.

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The multiplicity of caregiving burden: a qualitative analysis of families with prolonged disorders of consciousness

Objective: To understand the multiple and sometimes conflicting roles substitute decision makers (SDMs) of individuals in a vegetative state (VS), minimally conscious state (MCS), or with locked-in syndrome (LIS) perform while caring for a loved one and the competing priorities derived from these roles. Methods: We conducted semi-structured qualitative interviews using a constructive-grounded theory design. Twelve SDMs, who were also family members for 11 patients, were interviewed at two time points (except one) for a total of 21 in-depth interviews. Results: Participants described that caregiving is often the central role which they identify as their top priority and around which they coordinate and to some extent subordinate their other roles. In addition to caregiving, they participated in a wide variety of roles, which were sometimes in conflict, as they became caregivers for a loved one with chronic and complex needs. SDMs described the caregiver role as complex and intense that lead to physical, emotional, social, and economic burdens. Conclusion: SDMs report high levels of burdens in caring for a person with a prolonged disorder of consciousness. Lack of health system support that recognized the broader context of SDMs lives, including their multiple competing priorities, was a major contributing factor.

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Motivations and willingness to provide care from a geographical distance, and the impact of distance care on caregivers’ mental and physical health: a mixed-method systematic review protocol

Introduction: Distance caregivers (DCGs) are a growing population with substantial contribution to informal care. While a reasonable amount is known on the determinants of motives and willingness to provide local informal care, and the local caregiver outcomes, reports for the distance caregiving population are lacking. An evidence synthesis of what motivates and makes DCGs willing to care from a distance and the impact of that care on their mental and physical health would highlight any gaps or consensus in knowledge. This would guide the research needed towards the development of tailored interventions, in order to support DCGs and promote the sustainability of distance care. Methods and analysis: This protocol adheres to Preferred Items for Reporting of Systematic Reviews and Meta-Analyses Protocols guidelines and the Joanna Briggs Institute (JBI) Methodology for mixed-method reviews. A comprehensive search strategy will be conducted in four electronic databases (CINAHL, MEDLINE, PubMed and PsycINFO). Grey literature will also be assessed to minimise publication bias. Two independent reviewers will assess each study for inclusion and any discrepancies will be resolved with the consultation of a third reviewer. Eligible studies for inclusion will be English language studies exploring the motives and willingness to care for a care recipient with a chronic disease, disability or frailty from a geographical distance; or studies focusing on the mental and physical health outcomes of DCGs. Qualitative and quantitative data will be integrated in a single qualitative synthesis following the JBI convergent integrated approach. Study quality will be assessed using the Mixed Methods Appraisal Tool version 2018. Ethics and dissemination: Ethical approval is not required for this study as no primary data will be collected. Findings will be disseminated through peer-reviewed publication and presentations at academic conferences and lay summaries for various stakeholders.PROSPERO registration numberCRD42020156350.

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A Model of Factors Influencing Asthma Control among Preschool Children as Perceived by Family Caregivers

Background: Asthma is the most common non-communicable disease among children and the prevalence of childhood asthma is increasing in Vietnam. Often, due to the stage of development of the child and the illness, control of asthma in pre-school age children depends on family caregivers. To design effective interventions for asthma control, understanding family caregivers' perceptions of factors that influence such control is necessary. Thus, this cross-sectional study developed and tested a model of how perceived social support, satisfaction with nursing care, access to healthcare and family management work to explain asthma control among pre-school age children. Methods: A convenience sample of 328 primary family caregivers of pre-school age children with asthma from three public hospitals in Da Nang, Vietnam was recruited. Questionnaires used were a demographic form, and Vietnamese versions of the Best Asthma Control Test for Preschoolers, the Modified Social Support Questionnaire, the Access to Healthcare Instrument, and the Patient Satisfaction with Nursing Care Quality Questionnaire. The SPSS version 18 and the AMOS program were used to test the model. Results: Findings revealed that the hypothesized model fitted with the data and explained 38% of the variance in asthma control. Contextual factors had a direct effect on asthma control and an indirect through family management. Family management had a significant direct positive effect on asthma control. Among these factors, perceived social support had the strongest total effect whereas access to health care had the strongest direct effect on asthma control. Conclusion: Nurses can use this finding to strengthening support from significant people to improve family management and strengthen access to health care using various strategies such as telehealth to support asthma control.

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Measures of financial burden for families dealing with serious illness: A systematic review and analysis

Background: Many families coping with serious illness report experiencing financial burden, which negatively impacts coping and quality of life. Financial burden, however, is a complex construct that has been inconsistently operationalized in the literature. Aim: To review the available literature to identify, and describe the properties of, measurement tools or scales used to assess financial burden, including financial stress and strain, for families dealing with serious illness. Design: A systematic review. Data sources: Six databases were searched for articles published between 2006 and 2020. The review included studies in English, that reported empirical data, and used at least one measure of financial burden. To obtain a full copy of measures, an environmental scan was conducted. Results: A total of 31 measures were included. Only five of the total were designed for patient self-report, 23 of the total were designed for caregiver report. Whereas 11 measures relied on a single-item, 17 were multi-item. The remaining measures provided no information about target population and items. The most popular measures—based on Google Scholar citations—tended to only include one financial burden item. Given the complexity of financial burden, and its subjective and objective aspects, the utility of these single item measures remains questionable. Also, although patients may experience financial burden, there is a lack of patient-reported measures. Conclusion: To measure financial burden, we identified a need to develop and test multi-item measures, measures appropriate for patient populations and greater attention to the temporal aspects of self-report assessments.

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Repertoires of responsiblity for diabetes management by adults with intellectual disabilities and those who support them

Background: The limited existing research on diabetes management and intellectual disabilities (ID) highlights the need for further exploration of the concept of responsibility. This study explored repertoires of responsibility in accounts of managing diabetes for adults with ID. Methods: Fourteen semi-structured interviews were conducted in the UK with 7 adults with mild/moderate ID and type 1 or 2 diabetes and 7 people who they nominated as supporting their diabetes management. Findings: A discursive psychological analysis found that interpretative repertoires relating to competence, independence and accountability were drawn on to construct multiple and sometimes conflicting versions of responsibility. Within these repertoires people with ID were positioned in conflicting ways; as competent, personally responsible, and entitled to independence and choice, but as also lacking competence, dependent on others and incapable of overall accountability. People with ID often took up empowering positions defending against an incompetent identity. Supporters built accounts which negotiated dilemmatic repertoires on the dual responsibilities of empowering adults with ID to self-manage and managing risk to support good and safe care. Conclusions: The implications of available discursive resources and the ways in which they are mobilised are considered.

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Living with Long Term Conditions from the Perspective of Family Caregivers. A Scoping Review and Narrative Synthesis

Background: When living with one or more long term conditions (LTCs), both the patient and the family experience the impact of the condition at different levels. The family’s needs and perceptions should be considered in the process of caring for people with LTCs. The aim of this review is to understand “the process of living with LTCs” from a family perspective. Methods: A scoping review and narrative synthesis were conducted using a systematic methodology in MEDLINE, CINAHL, Web of Science and PsycINFO, in English and Spanish, including evidence from 2018. Results: A total of 28 articles were included in the review. Acceptance, coping, self-management, integration, and adjustment were key attributes in the process of living with LTCs from the perspective of family caregivers that interrelated in a dynamic way through different mechanisms: being aware of the changing situation, personal networks, information and education, personal conditions, attitude to life and communication. Conclusions: The five attributes that comprise living with LTCs from the perspective of the family caregiver are closely connected of to those of patients living with LTCs; however, self-management and integration have a different meaning and application.

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Living well with kidney disease by patient and care‐partner empowerment: Kidney health for everyone everywhere

An editorial is presented to the article Chronic kidney disease, associated symptoms, and treatment, including medications, dietary and fluid restrictions, and kidney replacement therapy, has disrupt and constrain daily living and impair the quality of life of patients. Topics include the development of validated patient reported outcome measures and used to assess of life participation; and monitoring of life participation has supported by regulatory agencies as a metric for quality care.

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The Lived Experience of Patients and Family Caregivers in Managing Pneumoconiosis

Background: The daily challenges of patients with pneumoconiosis and their caregivers in living with and providing care for this disease remain unexplored. Methods and findings: As guided by the interpretive description, we found that pneumoconiosis patients suffered from highly anxiety-provoking symptoms and physical debilitation, which evoked high levels of distress and sense of impending death. The reduced functional capacity disrupted patients' role functioning and self-esteem. The perceived stigma of the embarrassing symptoms and treatments further disrupted their self-concept and social lives. Providing care for pneumoconiosis patients was demanding and burdensome, which jeopardized family caregivers' physical, emotional, and social well-being, and the relationship strain with the patients added further frustration to them. The perceived caregiving gain supported them to fully engage in daily caregiving. Conclusions: To improve the well-being of pneumoconiosis patients, a comprehensive empowerment-based dyadic care model is required to optimize adaptive behavioral changes and self-esteem, and improve self-efficacy in disease management for this cohort.

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“Like filling a lottery ticket with quite high stakes”: a qualitative study exploring mothers’ needs and perceptions of state-provided financial support for a child with a long-term illness in Finland

Background: A child’s long-term illness or disability is always a serious matter that impacts the whole family. Costs related to an illness can substantially affect a family’s financial situation. To date, there is little research on how parents experience available support for financial assistance. Surveys in Finland have found that families of children with long-term illnesses and disabilities could experience financial struggle and perceive the state provided financial support system as too complex. Objectives: This article aimed to explore how caregivers of children with long-term illnesses perceived their financial situation, need for financial support and experienced its provision by the state in the Helsinki greater region. Methods: Convenience sampling was used. Participants were contacted through peer-support groups on Facebook. Eleven mothers of children with varying long-term illnesses and disabilities residing in the Helsinki greater region were interviewed using in-depth interviews. Recordings of the interviews were transcribed and analysed using framework analysis. An analytical framework was built to label the dataset, which was then charted. Lastly, themes were formed through descriptive analysis. Results: The main findings showed how the burden of caring for a child with a long-term illness or disability causes fatigue, which affects a family’s financial situation holistically. This affected both employment and financial management, but also receiving information about and applying for the state provided allowances. Mental resources were further depleted by seeking information and applying for allowances. This contributed to a vicious cycle between parental fatigue and financial struggle. Participants found the allocation of funds inequitable across the country. Finally, participants thought the allowance was insufficient in compensating for time spent caring for their child’s illness and did not consider their mental strain. Conclusions: Even in a welfare state such as Finland, caregivers of children with long-term illnesses are at risk of poverty and struggle with the organization of state provided financial support. Policies should be designed to ensure equity across the country and consider how the parental fatigue should be addressed. The study has implications for achieving sustainable development goals on wellbeing and reducing poverty.

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Involving families in psychiatric treatment and rehabilitation

Introduction: Psychiatric rehabilitation promotes recovery in individuals with mental disabilities. Its mission is to engage patients and families or caregivers in a collaborative treatment process. The vision of recovery is more likely to become a reality when patients and families are actively involved in treatment. Numerous factors have converged during the past decades to facilitate development and refinement of evidence-based approaches for strengthening families coping with mental disorders. Objectives: To review current knowledge on the importance of involving families in psychiatric treatment and rehabilitation, addressing effectiveness of family interventions, role of family coping skills in neutralizing stress and vulnerability, and family burden of mental illness. Methods: Non-systematic review of literature through search on PubMed/MEDLINE database for publications up to 2020. Textbooks were consulted. Results: Given the unpredictability of major mental disorders, families assume responsibility for extensive monitoring and supervision of a severely and chronically mentally ill relative. Clinical, social, family and economic benefits are achieved by adding psychosocial family interventions to a comprehensive array of services required by patients. Family interventions are not stand-alone modalities: they are coordinated with pharmacotherapy, illness management, crisis intervention, clinical case management, skills training and supportive services. Family interventions show benefits, such as fewer psychotic/affective episodes of exacerbation or relapse by the patient, reduced hospitalizations and improved family morale and less emotional burden. Conclusions: The new and effective family interventions do not stigmatize families as being ‘sick’ or in need of therapy to ‘straighten them out’. Family interventions are viewed as conferring added therapeutic protection to the patient and relatives.

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Interventions to improve the well-being of family caregivers of patients on hemodialysis and peritoneal dialysis: a systematic review

Background: The family caregivers of patients on hemodialysis (HD) and peritoneal dialysis (PD) typically experience higher burden than the general population because of the nature of tasks these caregivers need to carry out as a part of homecare. This fact influences both the caregivers’ quality of life and the quality of their care toward the patient. Thus, this study aimed to review the effectiveness and limitations of interventions in improving the well-being of family caregivers of patients on HD and PD. Methodology: A systematic review was performed according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses and the Cochrane Handbook for Systematic Reviews of Interventions (version 5.1.0). The Cochrane Library, Cumulative Index to Nursing and Allied Health Literature, Embase, MEDLINE, VHL Regional Portal, Scopus, and Web of Science databases were searched queried for randomized controlled trials that developed interventions aimed at improving the well-being of family caregivers of patients undergoing HD and/or PD from 2009 to 2020. The study protocol was registered at the International Prospective Register of Systematic Reviews (registration no. CRD42020151161). Results: Six studies met the inclusion criteria, all of which addressed caregivers of patients undergoing HD. All interventions reported in the included studies were carried out in group sessions, which addressed topics such as patient assistance and care, treatment complications, coping strategies, caregiver self-care practices, problem solving, and self-efficacy. The studies found significant improvement in the caregiver’s well-being. Conclusions: Group session interventions are effective in improving the well-being of family caregivers of patients undergoing HD. In regard to PD, there is insufficient evidence to make recommendations for caregivers of patients with this treatment.

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Interventions to Improve Health and Well-Being Among Family Caregivers of Older Adults With Chronic Illnesses: A Scoping Review

Background: Caregivers of older adults with chronic illnesses often face challenges that harm their health and well-being. Evidence-based strategies are needed to address such outcomes. Objectives: The current study aims to synthesize interventions designed to improve the health and well-being of caregivers of older adults with chronic illnesses. Methods: Search strategies included investigating four databases (e.g., PubMed, CINAHL), as well as conducting bibliographic, hand, and author searches. Eligible studies were randomized controlled trials conducted between 2009 and 2019 that included family caregivers of older adults with chronic illnesses aged =65 and that reported caregiver health or well-being outcomes. Results: Data from 24 eligible studies were extracted, analyzed, and narratively synthesized. Conclusions: Although intervention characteristics were diverse (e.g., strategies, interventionists), most improved health and well-being. Thus, providers have an array of interventions available to them to help caregivers. Future caregiver research should examine theory-driven interventions among diverse samples, clearly report intervention dose, and measure physical health.

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Interventions for Family Members After Long-Term Care Placement of a Relative With Dementia: A Systematic Review and Meta-Analysis

Objectives: The current systematic review aimed to identify, appraise, and synthesize the available evidence regarding interventions that assisted family members of long-term care facility residents with dementia to cope with stressful situations. Methods: A search of published articles in eight databases was performed. Results: In total, 1,293 records were identified, with six studies included in this systematic review. Interventions were categorized as education/skill training, psychoeducation, and psychosocial support. The risk of bias across the included studies varied from moderate to high. The intervention components, dose, and delivery methods differed widely with mixed results. The interventions showed potential benefits for reducing family members' stress-related outcomes (e.g., stress appraisal, guilt) and residents' problematic behaviors. Yet, meta-analysis yielded a non-significant pooled effect for reducing family members' depressive symptoms (mean difference = 1.38, 95% confidence interval [–2.27, 5.04], The current systematic review aimed to identify, appraise, and synthesize the available evidence regarding interventions that assisted family members of long-term care facility residents with dementia to cope with stressful situations. A search of published articles in eight databases was performed. In total, 1,293 records were identified, with six studies included in this systematic review. Interventions were categorized as education/skill training, psychoeducation, and psychosocial support. The risk of bias across the included studies varied from moderate to high. The intervention components, dose, and delivery methods differed widely with mixed results. The interventions showed potential benefits for reducing family members' stress-related outcomes (e.g., stress appraisal, guilt) and residents' problematic behaviors. Yet, meta-analysis yielded a non-significant pooled effect for reducing family members' depressive symptoms (mean difference = 1.38, 95% confidence interval [–2.27, 5.04], p = 0.46). Conclusions: Evidence in this field is currently insufficient and more well-designed studies with larger sample sizes and use of theoretical frameworks are needed. 

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Internet Access and Usage Among Stroke Survivors and Their Informal Caregivers: Cross-sectional Study

Background: Web-based interventions have shown promise for chronic disease management but have not been widely applied to populations with stroke. Existing barriers may inhibit the adoption of web-based interventions among stroke survivors and necessitate the involvement of informal caregivers. However, limited information is available on internet accessibility and usability among stroke survivors and their caregivers. Objective: This study aims to investigate internet access and usage in a cohort of stroke survivors and their caregivers. Methods: A cross-sectional survey was conducted with 375 participants (248 stroke survivors and 127 caregivers). Descriptive statistics were generated using cross-tabulation. Comparisons with categorical data were conducted using the chi-square test, whereas the Mann-Whitney U test was used for comparisons involving ordinal variables. Results: Overall, 86.1% (323/375) of the participants reported having internet access. Caregivers were more likely than stroke survivors to access the internet (N=375, χ21=18.5, P<.001) and used text messaging (n=321, χ21=14.7, P<.001). Stroke survivors and caregivers with internet access were younger than stroke survivors and caregivers without internet access. The highest number of participants who reported internet access were non-Hispanic White. Smartphones were the most common devices used to access the internet. Email was the most common type of internet usage reported. Patients who survived for >12 months after a stroke reported higher internet access than those who survived <3 months (P<.001). The number of hours per week spent using the internet was higher for caregivers than for stroke survivors (P<.001). Conclusions: Future feasibility and acceptability studies should consider the role of the informal caregiver, participant age, race and ethnicity, the use of smartphone apps, email and text correspondence, and the amount of time elapsed since the stroke event in the design and implementation of web-based interventions for populations with stroke.

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Informational Gaps, Needs, and Preferences of Adults With Chronic Health Conditions and Their Family Caregivers

Objectives: The purpose of this cross-sectional, qualitative study was to determine unmet educational needs, preferences, and barriers experienced by individuals with chronic illness and their caregivers. Methods: A survey containing fixed-choice selections and open-ended questions was sent to persons with cancer and other chronic diseases who had been seen within a large national private health system. Results: Between 20% and 25% of participants had difficulty obtaining health care information and/or felt overwhelmed with managing their condition. Coping, managing symptoms, and making treatment decisions were areas of need in both patients and caregivers. Preferences for receiving information were diverse. Conclusion: Existing methods of communication including secure Web sites where patients can access their medical records posed significant challenges.

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Information needs of patients with chronic diseases and their relatives for web-based advance care planning: a qualitative interview study

Background: Advance care planning (ACP) enables persons to identify preferences for future treatment and care, and to discuss, record and review these preferences. However, the uptake of ACP among patients with chronic diseases is relatively low. Web-based ACP programs can support patients and their relatives in ACP. However, information needs of patients and their relatives for ACP are unknown. The aim of this study is to explore information needs of patients with chronic disease and their relatives for web-based ACP. Methods: We conducted semi-structured interviews with patients with chronic diseases and relatives at their home or at the study center. In three cases, the patient and relative were paired since they preferred to be interviewed together. We asked about information they would search for when to start with ACP, where they would search for information, what search terms they would use on the Internet, and what content and information they would consider important on an ACP website. The interviewer asked participants to clarify their responses during the interview. We used thematic analysis to analyze the interviewees' responses. Results: We interviewed nine patients with different chronic diseases including amyotrophic lateral sclerosis (ALS), multiple sclerosis (MS), chronic obstructive pulmonary disease (COPD) and kidney diseases, and seven relatives, namely partners or (adult) children. The interviewees were aged 24 to 80 years, nine were female and seven were male. Both patients with a chronic disease and relatives mentioned comparable information needs. Many interviewees indicated they would use the Internet to search for information about ACP. Mentioned search terms were "advance care planning", "treatment plan", "disease trajectory" and names of patient associations. Information needs concerned their disease trajectory and quality of life, medical treatment decisions, practical support in arranging care, the concept of ACP and guidance in ACP, communication of treatment and care preferences, peer support of others with chronic diseases, and information for relatives. Many appreciated encouragement of their healthcare providers to take a pro-active role in ACP. Conclusions: We conclude that information needs for ACP included guidance in ACP, support in making decisions about medical treatment, and practical support in arranging care. We recommend adapting web-based ACP information to the information needs of patients and their relatives to increase its findability, uptake and usefulness.

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Informal Caregiving and Disaster Risk Reduction: A Scoping Review

Background: Informal caregivers are a population currently in the shadows of disaster risk reduction (DRR), and yet essential to the provision of healthcare services. This scoping review explored the literature to understand issues related to informal caregiving and promising practices to support resilience for disasters. Methods: Following guidelines for scoping review as outlined by Tricco et al. (2016), relevant publications were identified from five major databases—Medline, Embase, PubMed, Web of Science, and Scopus. Relevant studies referenced informal caregiving and disasters for a variety of population groups including children, people with disabilities or chronic illnesses, and older adults. Studies were excluded if they discussed formal caregiving services (for example, nursing), lacked relevance to disasters, or had insufficient discussion of informal caregiving. Results: Overall, 21 articles met the inclusion criteria and were fully analyzed. Five themes were identified: (1) the need for education and training in DRR; (2) stressors around medication and supply issues; (3) factors affecting the decision-making process in a disaster; (4) barriers leading to disaster-related problems; and (5) factors promoting resilience. Recommended areas of strategic action and knowledge gaps are discussed. Many informal caregivers do not feel adequately prepared for disasters. Conclusions: Given the important role of informal caregivers in healthcare provision, preparedness strategies are essential to support community resilience for those requiring personal care support. By understanding and mobilizing assets to support the resilience of informal caregivers, we also support the resilience of the greater healthcare system and the community, in disaster contexts.

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Informal Caregivers' Well-Being at the Transition to Caregiving

Objectives: The aim of this study was to describe the psychological and physical health needs of informal caregivers in a rehabilitation hospital and explore differences related to informal caregiver and care recipient characteristics. Readiness to engage in health promotion and perspectives on mindfulness meditation were assessed. Methods: Informal caregivers (N = 33) to patients receiving inpatient or outpatient treatment completed the Multidimensional Health Profile screening tools. Readiness to change was assessed using the readiness ruler approach. Results: Almost half of participants (45.5%) had a chronic illness and 18.2% reported that it interferes with daily functioning. Low Positive Health Habits were reported by 43% of participants, and Negative Health Habits were reported by 25%. A subgroup (15%–20%) reported both physical and mental health concerns. A majority of participants indicated it was both very important for them to improve their physical and mental health and felt very confident they could do so. Receptivity to mindfulness meditation was high, with 72.7% reporting an interest. Comprehensive screening and counseling interventions to address the physical and mental health of informal caregivers in physical rehabilitation hospital settings are needed, and information gained from screening could be addressed in interventions delivered by systems-oriented rehabilitation counselors. Conclusion: A mindfulness meditation intervention may be a useful strategy for promoting well-being in this population.

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Informal care in the context of long-term health care for the elderly in Slovenia: A qualitative study

Background: Slovenia is an aging society. Social security expenditures for the elderly are rising steadily, and the majority of Slovenians are firmly convinced that the state must provide elder care. This situation means that informal caregivers face many challenges and problems in their altruistic mission. Objectives: To explore the experiences and feelings of informal caregivers and to provide an understanding of how informal caregivers support the elderly and what challenges and difficulties they face in Slovenian society. Methods: The study is based on qualitative semi-structured interviews with 10 caregivers. In addition to descriptive statistics, we conducted a qualitative study using the qualitative content analysis method. Findings: We identified four themes among health caregivers’ experiences with challenges and problems in providing long-term health care for the elderly. Caregivers pointed out that they are mostly left to themselves and their altruistic mission of giving informal long-term care to their elderly relatives and friends. Systemic regulation of the national public health care system is the source of many problems. Other social systems determine and limit the position of informal caregivers in Slovenia. Conclusions: This qualitative study should be understood as useful stepping-stone to future research and real improvement in this area.

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The impact of severe rare chronic neurological disease in childhood on the quality of life of families—a study on MLD and PCH2

Background: Rare and severe neurological disorders in childhood not only heavily affect the life perspective of the patients, but also their caregivers and families. Objectives: The aim of this study was to investigate the impact of such diseases on the family, especially on the quality of life and life perspectives of parents, but also on the families’ everyday life, based on the model of two diseases which have been well described in recent years with respect to symptoms and course: metachromatic leukodystrophy (MLD) and pontocerebellar hypoplasia type 2 (PCH2). PCH2 is a primary severe developmental disorder, while children with MLD initially develop normally and then progressively deteriorate. Methods: Using a semi-standardized questionnaire, 43 families with children suffering from MLD (n = 30) or PCH2 (n = 19) reported data on the severity of the illness/symptoms, on family support and the care situation, as well as on the circumstances of non-affected siblings and the parents’ work situation. In addition, the quality of life of parents and general family functioning was assessed using the PedsQL™ Family Impact Module [23]. Results for the latter were compared to published data from families with children without any chronic condition using student’s t-tests for independent samples. Potential factors influencing the PedsQL™ scores were analyzed using Spearman’s rank correlation. Results: Parents of children with MLD and PCH2 reported significantly lower health-related quality of life (HRQOL) compared to parents of healthy children (P < 0.001). Mothers showed significantly poorer HRQOL (P < 0.05) and were significantly more dissatisfied with their professional development (P < 0.05) than fathers, and this was seen in relation to their child's disease. Neither the form of disease (‘primary’ symptomatic PCH2 or ‘secondary’ symptomatic MLD), nor the severity of the child’s illness (in terms of gross motor and speech function) had a specific impact on HRQOL in families. However, the time from diagnosis and advanced symptoms in the terminal disease stage were experienced as especially distressing. Conclusions: This study illustrates that MLD and PCH2 affect mothers in particular, but also the entire family. This underlines the need for personalized care and counselling of parents and families, especially following diagnosis and during the end stage in a child with a severe, rare chronic neurological disorder.

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The impact of psychoeducational interventions on the outcomes of caregivers of patients with heart failure: A systematic review and meta-analysis

Background: Heart failure is a global health care problem that causes a significant economic burden. Despite medical advancements, it's prognosis remains poor as many patients with heart failure experience symptoms that negatively impact Quality of Life. Caregivers are often responsible for helping and supporting family members manage their heart failure symptoms at home. In addition to managing their own medical problems and maintaining social and personal lives, significant burden and stress can occur. At present, caregivers receive little guidance or information to support them in their caregiving role. Objectives: This review aims to determine the impact of psychoeducational interventions on the outcomes of caregivers of patients with heart failure. Design: Systematic review and meta-analysis. Data source Five electronic databases: PsycINFO, Medline, CINAHL Plus, EMBASE and SCOPUS were searched from June 2007 to August 2019. Review methods The conduct and reporting of this review was based on the Cochrane Handbook for Systematic Reviews of Interventions and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses. The Cochrane Risk of Bias Tool was used to assess the risk of bias amongst randomised controlled trials, and the Newcastle Ottawa Scale was used to assess risk of bias in one quasi-experimental study. Results: Ten articles met the inclusion criteria, consisting of seven studies, with a total sample size of 953 participants. The pooled result from two studies, conducted in America and China, reported that psychoeducational interventions significantly reduced depression at six months' follow-up (SMD -0.82; 95% CI -1.17 to -0.47; p = 0.73, I2 =0%). The pooled result from two studies conducted in Sweden and Taiwan showed a significant improvement in heart failure knowledge at six months' follow-up (SMD 0.97; 95% CI 0.70 to 1,25; p < 0.00001, I2 =0%). Finally, pooled results from three studies conducted in Sweden, China and Taiwan found a significant improvement in Quality of Life at 3 months' follow- up (SMD 0.25; 95% CI 0.25 to 0.48; p = 0.03). The three most common intervention components included: group based educational sessions, telemonitoring and telephone support, and written resources. Conclusions: There was no specific type of psychoeducational intervention found to have a significant impact on caregiver outcomes, as interventions were heterogeneous consisting of multiple components. Further research is needed to determine the effectiveness of individual and combined components to identify the ideal intervention format and design for caregivers of patients with heart failure.

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The Impact of Long-Term Care Policy on the Percentage of Older Adults With Disabilities Cared for by Family Members in China: A System Dynamics Simulation

Background: This study examined the impact of current and future long-term care (LTC) policies on the family caregiving burden in China. System dynamics (SD) methodology was used to construct an LTC delivery system model that simulates the demand of LTC, living options, and LTC service use for disabled older adults. Methods: The model was based on three policy variables including the proportion of payment from LTC insurance, the growth rate of beds in LTC institutions, and the time to adjusting the capacity of community-based care. Results: Results showed that the percentage of older adults with disabilities cared for by family members was projected to increase from 92.6% in 2015 to 97.8% in 2035, assuming no policy changes; under the mixed policy scenario, this percentage would reduce significantly to 63.8% in 2035. Conclusions: These findings illustrate that changes in LTC policy and delivery system have a significant impact on family care.

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Illness as Experienced by Parents of Children With End-Stage Renal Disease: The "Ill Unit"

Objectives: The purpose of this study is to shed light on the experience of parents of children who suffer from various stages of renal failure. Methods: Semistructured qualitative interviews conducted with 12 parents were analyzed using the interpretative phenomenological analysis method. Findings: Eight themes were identified and organized into two superordinate themes: intrasubjective experience and intersubjective experience. Based on our analysis, we argue that the illness is experienced as a mental system extending beyond the space and boundaries of the child's body to include his or her parents which we refer to as the ill unit. Conclusions: We have borrowed Winnicott's concept of primary maternal preoccupation in order to emphasize the role and position of parents of chronically ill children. Consequently, we propose a relational perspective in which psychological support should be delivered to the ill unit (parents and child).

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"I decide myself"- A qualitative exploration of end of life decision making processes of patients and caregivers through Advance Care Planning

Background: The Singapore national Advance Care Planning (ACP) programme was launched in 2011 with the purpose of ensuring that healthcare professionals are fully aware of patients' treatment preferences. There is little research assessing the performance of such programmes in ethnically diverse Asian countries; hence, the purpose of this study was to qualitatively examine patients and caregivers' experiences with the ACP programme. Method: We conducted interviews with 28 participants, thirteen of whom identified as proxy decision makers (PDMs) and the remainder as patients. Interviews focused on respondents' experiences of chronic illness and of participating in the ACP programme. Textual data was analysed through a framework analysis approach. Results: Participants' narratives focused on four major themes with 12 subthemes: a) Engagement with Death, factors influencing respondents' acceptance of ACP; b) Formation of Preferences, the set of concerns influencing respondents' choice of care; c) Choice of PDM, considerations shaping respondents' choice of nominated health spokesperson; and d) Legacy Solidification, how ACP is used to ensure the welfare of the family after the patient passes. These findings led to our development of the directive decision-making process framework, which delineates personal and sociocultural factors influencing participants' decision-making processes. Respondents' continual participation in the intervention were driven by their personal belief system that acted as a lens through which they interpreted religious doctrine and socio-cultural norms according to their particular needs. Conclusion: The directive decision-making process framework indicated that ACP could be appropriate for the Asian context because participants displayed an awareness of the need for ACP and were able to develop a concrete treatment plan. Patients in this study made decisions based on their perceived long-term legacy for their family, who they hoped to provide with a solid financial and psychological foundation after their death. 

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Grieves And Struggles Of Family Caregivers Providing Care For Bedridden Elderly Patients Affected By Chronic Degenerative Diseases

Objective: To understand grieves and struggles of family caregivers providing care for bedridden elderly patients affected by chronic degenerative diseases. Methods: This cross-sectional study was developed following the guidelines of the clinical-qualitative method. The sample was composed of 10 female family caregivers of bedridden elderly patients affected by chronic degenerative diseases in a city in the interior of Minas Gerais, Brazil. The sample size was determined by data saturation. The instruments used included semi-structured interviews and a field diary. The audio-recorded interviews were transcribed verbatim and submitted to content analysis. The field diary provided contributions to the organization of categories, conferring a more accurate context. Results: The participants experienced two types of grief, one for the loss of a “healthy family member” and the other for the “announced death” of this person. Additionally, the participants faced two main struggles: overcoming (objective and subjective) fatigue and becoming fully capable of performing their roles. Conclusion: The family caregivers of bedridden elderly patients affected by chronic degenerative diseases experience grieves and struggles that should be taken into account from the beginning of the care process through mental health actions intended to meet their needs. 

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Going inside the relationship between caregiver and care‐receiver with Amyotrophic Lateral Sclerosis in Italy, a Grounded Theory study

Background: People with amyotrophic lateral sclerosis become dependent on caregivers for daily activities and to perform self‐care activities at home. The family caregiver has an important role in the care. The patient decides and controls care but depends on the caregiver to implement self‐care behaviours. The quality of caregiver–patient relationships could influence clinical outcomes, as it occurs in other illnesses, so the aim of this study was to investigate the relationship between the Amyotrophic Lateral Sclerosis patients and their family caregiver and how it impacts care, and patient and caregiver outcomes. Methods: We interviewed 22 patients/caregivers in a Neuromuscular Clinical Center in the South of Europe, between July and October 2018. A Grounded Theory approach was used, comprising line by line 'initial coding', memos writing, 'focused coding', advanced memos and categories definition. Findings: From the interviews three main categories emerged: 'reciprocity', 'loving to care' and 'changing to care' and four secondary categories: 'having support', 'sharing suffering', 'protecting each other' and 'thinking positive'. A stable and calm relationship between patient and caregiver, characterised by reciprocity, mutual help and affection affected patient self‐care provided at home and the caregiver burden. The concept of mutuality seems to describe this relationship, despite the patient's dependence on the caregiver. The relationship with health professionals and educational interventions could influence the quality of the relationship. Conclusions: Further studies are needed to describe the quality of the relationship in this dyad, to investigate the presence of mutuality and how it affects patient and caregiver outcomes.

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Financial strain among unpaid family caregivers of frail elders in community

Background: In the United States, 8 out of 10 elders, 65 or older, have at least one chronic disease. Their care likely falls mostly to family members; many experience financial strain associated with providing that care. Informal caregiving saves the American healthcare system money. The economic value of family caregivers is estimated at $350 billion, exceeding the total amount spent by either Medicare ($342 billion) or Medicaid ($300 billion) The COVID-19 pandemic makes this issue even more relevant. Many of those recovering from this virus, whatever their age and previous health history, find it is a very long process. This study examined correlates of financial strain among 956 unpaid family caregivers using the framework of the stress process model. Method: The study utilized the caregiver survey data set from the 1999 National Long-Term Care Survey. Results: indicate that a caregiver's perceived overload had the largest effect on greater financial strain. Variations and dynamics in caregiver financial strain are particular to the caregiver's family relationship. Conclusion: Identifying correlates of caregiver financial strain can provide an important impetus for tackling the causes and providing effective interventions.

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Family knowledge about the legal rights of children and adolescents with cancer

Objective: Identify the knowledge of family members of children and adolescents with cancer about their legal rights, difficulties, and concessions to ensure them. Methods: Quantitative study, survey type, of intersectional design. A questionnaire drawn up by the researchers was applied in order to characterize the minor and their family and also to identify the family's knowledge about legal rights. Descriptive statistics were used to analyze data. Results: 61 family members who participated know some more rights to the detriment of others and are especially motivated to search for information when negative impacts on the financial life increase, with repercussions beyond family health. Conclusion: the studied population requires more information and demands knowledge about some rights guaranteed by law. Guidance on rights empowers the family and guarantees the necessary care, searching to have an intersectoral action qualify care and assist in restructuring family dynamics to deal with chronic conditions.

 

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Family experiences of caregiving to patients with Alzheimer

Purpose: This paper aims to describe and understand the family experience of caregiving to their Alzheimer patients and to explore the impact of caregiving on the family's caregiver well-being. Design/methodology/approach: The study involved eight family caregivers from the outpatient department, specifically from the neurology-medical clinic. A descriptive phenomenological approach was used for data collection through in-depth semi-structured interviews. Findings: Four themes emerged: caregiver perception, tension, the sense of duty and commitment and altruism and sacrifice. The experience of family caregivers was different from their experiences with other chronic illnesses. Originality/value: The family caregivers experience new life when providing care to their patients with Alzheimer's. The impact of the process of caregiving on whole life appeared in both positive and negative aspects. The perception and awareness of family caregivers toward Alzheimer's disease were poor.

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Family dermatology life quality index in patients with pemphigus vulgaris: A cross-sectional study

Background and Aims: Pemphigus vulgaris is a rare autoimmune intraepidermal vesiculobullous disease involving the skin and mucosa. It impacts the quality of life of both patients and their families. Methods: A total of 70 patients with pemphigus vulgaris (either outpatient or hospitalized) were enrolled using the simple sampling method between 2016 and 2017 from the dermatology clinic at Faghihi Hospital, Shiraz, Iran. A validated Persian version of the Family Dermatology Life Quality Index (FLDQI) questionnaire was filled by a family caregiver. The questionnaire contained 10 items assessing the quality of life of the family. Demographic variables were recorded in a separate form. Results: The mean age of the patients was 51 ± 11.3 years and that of the family caregivers was 32 ± 8.8 years. The FLDQI score was higher (poorer quality of life) if the patient was male, older, had shorter disease duration or had fewer disease recurrences (P = 0.046, 0.01, 0.001 and >0.001, respectively). Higher scores were also obtained in the less-educated caregivers (P = 0.026) but there was no association with either gender or age (P = 0.399, 0.1). Conclusion: Pemphigus vulgaris significantly affects the Family Dermatology Life Quality Index. Education and counseling of family caregivers by various support groups such as Pemphigus Family Associations could be effective in improving the quality of life of the caregivers.<bold>Limitations: </bold>This study did not assess the effect of comprising domain analysis, severity of disease, patients' Dermatology Life Quality Index (DLQI), mucosal involvement, response to treatment, outpatient or admitted status, socioeconomic status, or the quality of life among the various family members. 

 

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Family Caregiving During the COVID-19 Pandemic

Background and Objectives: The coronavirus disease 2019 (COVID-19) pandemic has negatively affected persons with existing chronic health conditions. The pandemic also has the potential to exacerbate the stresses of family caregiving. We compare family caregivers with noncaregivers on physical, psychosocial, and financial well-being outcomes during the pandemic and determine family caregivers most at risk for adverse outcomes. Research Design and Methods: We conducted a cross-sectional online survey of 576 family caregivers and 2,933 noncaregivers from April to May 2020 in Pittsburgh, PA region with a national supplement. Outcome measures included concurrent anxiety, depression, fatigue, sleep disturbance, social participation, and financial well-being and perceived changes due to COVID-19 (loneliness, financial well-being, food security). We also measured sociodemographic, caregiving contextual variables, and COVID-19-related caregiver stressors (COVID Caregiver Risk Index). Results: Controlling for sociodemographics, family caregivers reported higher anxiety, depression, fatigue, sleep disturbance, lower social participation, lower financial well-being, increased food insecurity (all p <.01), and increased financial worries (p =.01). Caregivers who reported more COVID-19-related caregiver stressors and disruptions reported more adverse outcomes (all p <.01). In addition, caregivers who were female, younger, lower income, providing both personal/medical care, and providing care for cognitive/behavioral/emotional problems reported more adverse outcomes. Discussion and Implications: Challenges of caregiving are exacerbated by the COVID-19 pandemic. Family caregivers reported increased duties, burdens, and resulting adverse health, psychosocial, and financial outcomes. Results were generally consistent with caregiver stress–health process models. Family caregivers should receive increased support during this serious public health crisis.

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Family Caregivers' Conceptions of Trust in Home Health Care Providers

Background: Trust is important to family caregivers of older adults receiving home health care (HHC). Caregivers rely extensively on nurses, home health aides, and other providers to manage complex care tasks. Objective: The current study examined how family caregivers conceive of trust in HHC providers. Methods: Directed content analysis methods were applied to 40 qualitative interviews conducted with caregivers of HHC patients aged ≥65 years. Results: Results indicated that caregivers invested trust in providers who displayed competencies in caring for patients with chronic conditions and functional difficulties, willingness to foster frequent and open communication with room for questions and feedback, confidence in their ability to be present and alert for patients, and fidelity to a variety of tasks contributing to holistic care. Conclusions: Caregivers' conceptions of trust in providers are affected by interpersonal aspects of their interactions with providers as well as the broader systems of care within which they participate. 

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Family caregiver support—a facilitator to empower family caregivers

Background: Mental disorders are highly prevalent, placing an enormous burden on individuals, society and economy. Research shows that family members who provide care to individuals with chronic or disabling mental conditions are themselves at risk. As a response to this problem, the project 'Family Caregiver Support - Strategies and tools to promote the mental and emotional health of caregivers' emerged, funded by Erasmus + Program and carried out by 8 European partners including ESS|P.PORTO. Objectives: To empower family members as caregivers and to give them access to relevant medical information and to psychological support for their own needs. Methods: A Guide and a Resource Pack concerning 9 important mental health disorders were developed. An interactive e-platform and a mobile App were developed to make available these materials. Validation of the products was carried out, in each country, by caregivers and health/social care professionals through online questionnaires. Data were collected and processed in an anonymous manner, and the confidentiality was ensured. Results: In Portugal, 98% of respondents (25 caregivers/citizens interested on subject, and 25 health/social care professionals), consider the accessibility and attractivity of the platform very good or excellent; and more than 90% consider materials very effective for the caregiver's empowerment. Some issues were identified to add to Resource Pack. Conclusions: Data from partners is being processed but there is already strong evidence of the usability and efficacy of the project's outcome, and a strong contribution was done for adult education concerning physical, mental and emotional health promotion of family caregivers. 

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Family Caregiver Support of Patient Self-Management During Chronic, Life-Limiting Illness: A Qualitative Metasynthesis

Background: Family caregivers play an integral role in supporting patient self-management, yet how they perform this role is unclear. We conducted a qualitative metasynthesis of family caregivers' processes to support patient self-management of chronic, life-limiting illness and factors affecting their support. Methods: Methods included a systematic literature search, quality appraisal of articles, data abstraction, and data synthesis to produce novel themes. Results: Thirty articles met inclusion criteria, representing 935 international family caregivers aged 18 to 89 years caring for patients with various health conditions. Three themes characterized family caregivers' processes to support patient self-management: "Focusing on the Patient's Illness Needs," "Activating Resources to Support Oneself as the Family Caregiver," and "Supporting a Patient Living with a Chronic, Life-Limiting Illness." Factors affecting family caregivers' support included Personal Characteristics, Health Status, Resources, Environmental Characteristics, and the Health Care System. Conclusions: The family caregiver role in supporting patient self-management is multidimensional, encompassing three processes of care and influenced by multiple factors.

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Family Caregiver Suffering in Caring for Patients with Amyotrophic Lateral Sclerosis in Korea

Objectives: The purpose of this study was to describe the meaning of the suffering experience of Korean ALS family caregivers. Methods: This is a descriptive phenomenological study that included ten participants using convenience sampling with maximum variation in a tertiary hospital in Seoul, South Korea. Colaizzi’s data analysis method was used to inductively determine themes and formulate meanings. Results: The three main themes derived from analysis were: “frustration with seeing a patient suffering”, “burnout at the cost of a life of dedication”, and “desperate need for help”. Conclusions: Caregivers experience high levels of suffering, which can come in various forms depending on the circumstances of the particular patient and family. Especially, distress from seeing a loved one suffering was another aspect of suffering in Korean ALS caregivers, reflecting strong family ties. At the same time, patients are in desperate need of help and support from their families. Thus, it is essential to provide care to lessen the causes of distress and meet the needs of not only patients, but also caregivers through family-centered care to improve overall quality of life for all involved.

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Factors related to the use of religious coping by informal caregivers: an integrative review

Objectives: to identify the factors related to the use of religious coping in informal caregivers. Methods: integrative literature review carried out through a search in the databases LILACS, PubMed, Scopus, Web of Science, and CINAHL, in addition to the Virtual Health Library and SciELO. The study selected primary articles in English, Portuguese, and Spanish, using the descriptors Coping Behavior, Caregivers, Spirituality, and Religion, which were combined with each other and with synonyms. There was no time limit for the publications. Results: nine articles were selected. Factors related to the use of religious coping in informal caregivers included: having an advanced age, experiencing traumatic situations, being under overload, being a spouse or mother, caring for hospitalized individuals, or for those with chronic diseases and high degrees of dependence. Conclusions: the factors related to the use of religious coping are multifaceted and involve physical, psychological, psychosocial, and situational aspects.

 

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Factors influencing decisions to admit family members with dementia to long‐term care facilities

Background: With an aging global population and changes in family structure, there will be a need for increased formal and informal caregivers for family members with alzheimer's disease or other related dementias. Caregivers experience exhaustion, mental health issues, and competing demands; deciding to admit family members with dementia into long‐term care compounds the stress. The article reports on factors that influence caregivers' decisions regarding institutionalizing their family members with dementia. Methods: Eighteen articles were included in this integrative review. Findings: Influential decision‐making factors were: caregiver characteristics, care recipient characteristics, complexity of care, caregiver and family relationships, experiences with healthcare providers, financial challenges, and long‐term care facility selection. Addressing these factors can provide a layer of support to caregivers and their families during the decision‐making process.

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Factors Associated With Intention to Adopt mHealth Apps Among Dementia Caregivers With a Chronic Condition: Cross-sectional, Correlational Study

Background: In the United States, nearly 80% of family caregivers of people with dementia have at least one chronic condition. Dementia caregivers experience high stress and burden that adversely affect their health and self-management. mHealth apps can improve health and self-management among dementia caregivers with a chronic condition. However, mHealth app adoption by dementia caregivers is low, and reasons for this are not well understood. Objective: The purpose of this study is to explore factors associated with dementia caregivers’ intention to adopt mHealth apps for chronic disease self-management. Methods: We conducted a cross-sectional, correlational study and recruited a convenience sample of dementia caregivers. We created a survey using validated instruments and collected data through computer-assisted telephone interviews and web-based surveys. Before the COVID-19 pandemic, we recruited dementia caregivers through community-based strategies, such as attending community events. After nationwide closures due to the pandemic, the team focused on web-based recruitment. Multiple logistic regression analyses were used to test the relationships between the independent and dependent variables. Results: Our sample of 117 caregivers had an average age of 53 (SD 17.4) years, 16 (SD 3.3) years of education, and 4 (SD 2.5) chronic conditions. The caregivers were predominantly women (92/117, 78.6%) and minorities (63/117, 53.8%), experienced some to extreme income difficulties (64/117, 54.7%), and were the child or child-in-law (53/117, 45.3%) of the person with dementia. In logistic regression models adjusting for the control variables, caregiver burden (odds ratio [OR] 1.3, 95% CI 0.57-2.8; P=.57), time spent caregiving per week (OR 1.7, 95% CI 0.77-3.9; P=.18), and burden of chronic disease and treatment (OR 2.3, 95% CI 0.91-5.7; P=.08) were not significantly associated with the intention to adopt mHealth apps. In the final multiple logistic regression model, only perceived usefulness (OR 23, 95% CI 5.6-97; P<.001) and the interaction term for caregivers’ education and burden of chronic disease and treatment (OR 31, 95% CI 2.2-430; P=.01) were significantly associated with their intention to adopt mHealth apps. Perceived ease of use (OR 2.4, 95% CI 0.67-8.7; P=.18) and social influence (OR 1.8, 95% CI 0.58-5.7; P=.31) were not significantly associated with the intention to adopt mHealth apps. Conclusions: When designing mHealth app interventions for dementia caregivers with a chronic condition, it is important to consider caregivers’ perceptions about how well mHealth apps can help their self-management and which app features would be most useful for self-management. Caregiving factors may not be relevant to caregivers’ intention to adopt mHealth apps. This is promising because mHealth strategies may overcome barriers to caregivers’ self-management. Future research should investigate reasons why caregivers with a low education level and low burden of chronic disease and treatment have significantly lower intention to adopt mHealth apps for self-management.

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Exploring the experiences of family caregivers with people with drug-resistant tuberculosis

Background: The South African health system faces major challenges: crumbling infrastructure, shortage of beds and health professionals, and a high burden of diseases such as Tuberculosis and HIV/AIDS. The emergence of Drug Resistant Tuberculosis has made matters worse, as some of the burden of care for patients was transferred from nurses at hospitals to families in communities after patient discharge. Objective: This study explores and describes experiences of family caregivers caring for family members with Drug Resistant Tuberculosis living at home. Methods: The data from purposively selected family caregivers, caring for family members living with Drug Resistant Tuberculosis, were collected through in-depth interviews using a pretested interview guide. Saturation was reached at the 11th interview. All interviews were audio-taped, transcribed verbatim, analysed using Tech’s Eight Steps for Data Analysis, and emerging themes reported. Findings: Three themes that emerged were: issues in relation to provision of care, caregiver’s attitudes towards caregiving, and community attitudes and practices towards family caregivers. The study showed that respondents experienced challenges such as buying and preparing of nutritious food, attending to hygiene needs and management of treatment of side effects. Poverty, finance and time were barriers to caregiving roles. Participants experienced physical and psychological exhaustion, social exclusion, and stigmatisation. Conclusions: There is a need to increase coverage of the Ward-Based Outreach Teams and Community Healthcare Workers, and intensification of TB and HIV/AIDS health education in communities. Training and education on infection control, palliative treatment, and home-based medical care should be provided to families before a patient is discharged. Stakeholder relations need to be improved and collaboration fostered. 

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Exploring the barriers to pulmonary rehabilitation for patients with chronic obstructive pulmonary disease: a qualitative study

Background: The complexity of chronic obstructive pulmonary disease (COPD) and its different physical, mental, familial, occupational, and social complications highlight the necessity of pulmonary rehabilitation (PR) for afflicted patients. However, PR for patients with COPD usually faces some barriers. The aim of this study was to explore the barriers to PR for patients with COPD. Methods: This qualitative descriptive study was conducted in January 2019 to October 2020. Participants were 19 patients with COPD, 11 family caregivers of patients with COPD, and 12 healthcare providers, who all were recruited purposively from two teaching hospitals in Isfahan, Iran. Data were collected through semi-structured interviews and were analyzed through conventional content analysis. Results: The barriers to PR for patients with COPD fell into three main categories, namely barriers related to patients and their families, inefficiency of PR services, and inappropriate organizational context for PR. Each category had four subcategories, namely patients' and families' lack of knowledge, complexity and chronicity of COPD, heavy financial burden of COPD, patients' frustration and discontinuation of PR, lack of patient-centeredness, lack of coordination in PR team, inadequate professional competence of PR staff, lack of a holistic approach to PR, limited access to PR services, inadequate insurance for PR services, ineffective PR planning, and discontinuity of care. Conclusion: PR for patients with COPD is a complex process which faces different personal, familial, social, financial, organizational, and governmental barriers. Strategies for managing these barriers are needed in order to improve the effectiveness and the quality of PR services for patients with COPD. 

 

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Explanatory models of stroke in Ghana: perspectives of stroke survivors and their caregivers

Objective: This study examines explanatory models (EMs) of stroke and its complications among people living with stroke, and their caregivers, in two urban poor communities in Accra (Ga Mashie) and Korle Bu Teaching Hospital (KBTH), Accra. Methods: Twenty-two stroke survivors and 29 caregivers were recruited from 2 urban poor communities in Accra and KBTH. Qualitative data were obtained using semi-structured interviews that lasted between 45 minutes and 2 hours. The interviews were audiotaped, transcribed and analysed thematically, informed by the concept of EMs of illness. Results: Participants referred to stroke as a sudden event and they expressed different emotional responses after the stroke onset. Stroke survivors and their caregivers attributed stroke with poor lifestyle practices, high blood pressure, unhealthy diet and dietary practices, supernatural causes, stress, family history, other chronic diseases, and delay in treatment of symptoms. While the stroke survivors associated stroke complications with physical disability and stigmatisation, the caregivers associated these with physical disability, behavioural and psychological changes, cognitive disability and death. These associations were mostly influenced by the biomedical model of stroke. Conclusion: The biomedical model of stroke is important for developing interventions that will be accepted by the stroke survivors and the caregivers. Nevertheless, sociocultural explanations of stroke need to be taken into consideration during delivery of medical information to the participants. This study proposes an integrated biopsychosociocultural approach for stroke intervention among the study participants.

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The experiences of well-being of family caregivers in palliative care: A qualitative study using thematic analysis

Background: Family caregivers play an important role in supporting patients at the end of life. Although providing care for palliative care patients can be inherently stressful, it is possible for family caregivers to experience both positive experiences and stress simultaneously. Understanding these positive experiences can be helpful to aid counterbalancing the negative aspect of caregiving. Methods: Therefore, we conducted a qualitative study using face-to-face interviews with semi-structured questions to explore the experiences of well-being of palliative care family caregivers from a positive perspective. The entire sample consisted of 18 family members caring for cancer patients and 2 family members caring for patients with motor neuron disease. The interviews were transcribed verbatim and thematically analyzed with qualitative research software NVIVO. Findings: The themes generated from the analysis are: (1) Acceptance, (2) Gratitude, (3) Hope, (4) Happiness and (5) Support. The 5 themes provide 6 constructs for independent intervention. Conclusions: Understanding these themes that promote caregiver well-being can be a guide for us to take care of our family caregivers.

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The experiences of the caring dyad: (Un)articulated realities of living with cardiometabolic risk, metabolic syndrome and related diseases in severe mental illness

Background: Informal carers play an important role in the care of patients with mental illness. Little is known of the relationship experience of the patient and their informal carer (caring dyad) as the context for the intersection between physical and mental health. Aim: This study aimed to explore the impact of comorbid cardiometabolic risk (CMR), metabolic syndrome (MetS) and related diseases and severe mental illness (SMI) on the caring dyad. Design: Between October 2018 and March 2020, we conducted 11 in-depth semi-structured interviews across 6 adult caring dyads, interviewing each individual separately. Setting: Dyads were recruited within the United Kingdom; informal carers were nominated by the patient as a person who provided a significant amount of support. Variable Being Studied: Participants were asked about the impacts of illness and caring on daily life. Data Analysis: Data were analysed at the dyad level using thematic analysis, comparing and contrasting responses from each individual. Results: Themes were identified: enhanced closeness, dissonance and balance within the caring dyad. Discussion and Conclusions: This study uses a particular population of patients with comorbid CMR factors, MetS and related diseases and SMI and their informal carers to explore the relevance and utility of caring dyads as an analytical framework to inform practice and policy. Future interventions should consider factors impacting on dyadic relationships to formulate effective and sustainable dyadic care and treatment to improve health outcomes for both patients with SMI and their informal carers. Patient/Public Involvement: In this study, patients and informal carers were participants. Topic guides were piloted with a patient and informal carer. 

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The Experience of Housing Needs Among Families Caring for Children With Medical Complexity

Background: Caregivers of children with medical complexity (CMC) face many stressors related to their child's medical condition(s). Financial stress and its impact on housing has been reported to be a challenge among this population. However, unique housing challenges specific to CMC, including disability accommodations in the home and housing space and layout, have yet to be examined in the literature. Methods: We conducted 20 individual semistructured interviews with parents of CMC. Interviews were recorded, coded, and analyzed by using thematic analysis to emphasize, examine, and record patterns of meaning within the data. Results: Eighteen mothers and 2 fathers participated in individual interviews. Two major themes and subthemes (in parentheses) were identified: (1) the impact of health on housing (housing preferences, housing possibilities, and housing outcome as a trade-off) and (2) the impact of housing on health (health of the caregiver and health of the child). Parents had preferences regarding the location and layout of their home specific to their child's illness and medical needs. In addition, parents indicated their child's illness affected their income and home ownership status, which in turn shaped their housing possibilities. The location and layout of the family home was often the result of a trade-off between the caregiver's housing preferences and possibilities. Conclusions: Housing outcomes among CMC are often the result of a trade-off between housing preferences and possibilities, both of which are influenced by the child's health status. Policy changes targeting housing accessibility and affordability are vital to support the health of CMC. 

 

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Existential transformations in the process of facing amyotrophic lateral sclerosis by the family caregiver

Objective: To understand the existential transformations of the family caregiver of a person living with Amyotrophic Lateral Sclerosis. Method: Qualitative study based on assumptions of Martin Heidegger Existential Phenomenology, with 12 family caregivers of the person with Amyotrophic Lateral Sclerosis, in Alagoas. The testimonies were obtained from June 2019 to March 2020 and analyzed, categorized, and discussed based on the theoretical-philosophical framework adopted and thematic literature. Results: Phenomenological sense of the existential transformations of the family caregiver of a person living with Amyotrophic Lateral Sclerosis, unveiled with the categories: Being the caregiver of the person living with ALS; Being responsible for decision making; Resignifying the existence in view of the possibility of loss; Spirituality influencing the transformation process. Conclusions: The family caregiver has an appropriate life due to the inherent vicissitudes of the disease, which provides moving moments that lead him to rethink his existence and to value life.

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Evaluating strategies to manage and endure challenging behaviors in mucopolysaccharidoses

The mucopolysaccharidoses (MPS) are a group of rare, genetic, lysosomal storage disorders characterized by progressive, multisystemic accumulation of glycosaminoglycans. Individuals with severe MPS often present with significant neurological involvement and may exhibit challenging behaviors, including hyperactivity, aggression, and sleep disturbance. These behaviors can cause adverse outcomes and necessitate the development of specific measures to support affected families. Through an analysis of the results reported by Hoffmann et al. in their recent study, this letter outlines important factors that must be considered when evaluating the impact of challenging behaviors associated with MPS, including treatment history, age, sibling and family relationships, the feasibility of daily caregiving, and caregiver burden. These recommendations can help guide future studies to identify the most effective coping strategies to support families of people with MPS who have challenging behaviors.

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Estimating Service Demand for Intermediary Care at a Community Integrated Intermediary Care Center among Family Caregivers of Older Adults Residing in Chiang Mai, Northern Thailand

Background: Thailand’s population is currently the third most rapidly aging in the world, with an estimated 20 million ageing population by 2050. Sustainability of the family based long-term care model is challenged by the chronic burden on family caregivers and by smaller family sizes. We aimed to introduce a new service model, Community Integrated Intermediary Care (CIIC), TCTR20190412004, including free of charge intermediary care services at CIIC centers in the local community, to help older adults whose caregivers are temporarily unable to sustain care at home. Since Thai society upholds values of gratefulness, it is better to estimate willingness to use such an intermediary care service first, before introducing the service. Methods: A total of 867 pairs of senior citizens and their family caregivers were interviewed with structured-questionnaires in 2019. Descriptive analysis and binary logistic regression were applied to determine the predictors of family caregivers’ willingness to use the CIIC service, guided by Anderson’s model of health services use. Results: About 26.8% of elderly participants and 24.0% of family caregivers were willing to use an intermediary care service. The family caregiver determinants of predisposing factors (kinship: spouse caregivers, other relatives, maid or friends; job types: own business and private company staff), enabling factors (original community residents and monthly income ≤9000 baht), and need factors (caregiver burden total scores ≥24, taking leave for caregiving, and having diabetes), were found to be significantly associated with willingness to use the CIIC service. Conclusions: The baseline survey data noted that caregivers’ sociodemographic factors and burden determined their willingness to use the intermediary care service, although the dependency of care recipients was low in this study. This, nonetheless, indicated that there is need for a backup respite care to strengthen current family based long-term aging care in Thailand.

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Effects of Physical Activity Programs on Health Outcomes of Family Caregivers of Older Adults with Chronic Diseases: A Systematic Review

Objectives: This systematic review was conducted to analyze and capture the most recent trends in physical activity interventions for family caregivers of older adults with chronic disease as found in randomized clinical trials over the last 10 years (2010–2020). Methods: We used PubMed, CINAHL, Embase, PsycInfo, and the Cochrane Library. We synthesized participants’ demographics, physical activity interventions and family caregivers’ health outcomes. The Cochrane Collaboration Risk of Bias Tool was used to assess risk of bias of the included studies. Sixteen studies were included and most studies (n = 11) had a moderate risk of bias. Results: Physical activity programs with mixed modes (e.g., aerobic and resistance exercise), mixed delivery methods (e.g., in-person and telephone) and mixed settings (e.g., supervised gym-based sessions and unsupervised home-based sessions) were used most frequently. Physical activity interventions significantly improved psychological health but had inconsistent effects on physical health. Conclusions: This review provides current trends and research findings that suggest types of physical activity interventions and components that improve family caregivers’ health and wellness. 

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The Effects of Patients’ and Caregivers’ Characteristics on the Burden of Families Caring for Stroke Survivors

Background: Vascular strokes are the leading cause of long-term disability for adults. They impose high levels of burden on the patient, the family, and national healthcare systems worldwide. This study aimed to assess the effects of patients’ and caregivers’ characteristics on the perceptions of burden in families caring for a loved one living with stroke in Greece. Methods: Using purposive sampling, 109 dyads of patients and their respective caregivers were recruited from the Attica region. Patients completed a questionnaire that included personal characteristics and the Barthel Index, while caregivers completed a set of questionnaires—personal characteristics, revised Bakas Caregiving Outcomes Scale (BCOS), Personal Resource Questionnaire (PRQ 2000), and Center for Epidemiological Studies-Depression (CES-D). Results: Caregiving burden was linked to both patients’ and caregivers’ characteristics. A patient’s educational level, the number of family members living in the same house, the existence of equipment and facilities in the house, and the duration of provided care were associated with perception of greater burden. Regarding caregivers’ characteristics, those in good health had a significantly lower perception of burden. Higher PRQ 2000 scores were significantly associated with higher BCOS scores (less burden), and higher CES-D scores were significantly associated with lower BCOS scores (more burden). Conclusion: Caring for a loved one affected by stroke places a considerable burden on the caregiver. Systematic assessment and intervention strategies can help to identify caregivers at risk so that suitably targeted assistance may be provided.

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Effects of family participatory dignity therapy on the psychological well-being and family function of patients with haematologic malignancies and their family caregivers: A randomised controlled trial

Background: Strong family ties appear to buffer patient's and family members' difficult experiences during life and health crises. The family participatory dignity therapy programme, a patient-family-centred psychological intervention, was developed based on dignity therapy and performed by one therapist in the form of interview according to a specific question prompt. This study aimed to confirm the efficacy of the family participatory dignity therapy programme in improving the psychological well-being and family cohesion and adaptability of patients with haematologic malignancies and their family caregivers. Method: A single-blinded, two-arm parallel group, randomised controlled trial was conducted. Participants: Participants were patient-family caregiver dyads recruited from Fujian Medical University Union Hospital from March to September 2019. A total of 68 eligible dyads agreed to participate and were randomly assigned to the intervention group (n = 33) or control group receiving usual care (n = 35). Each pair of patient-family dyads in the intervention group received two or three interviews (each interview approximately lasting 45 to 60 min) performed by one therapist according to a specific question prompt containing 10 questions for patients and 10 corresponding questions for their family caregivers. To evaluate the effects of the intervention, we assessed patients' hope, spiritual well-being, and family cohesion and adaptability, as well as their family caregivers' depression, anxiety, and family cohesion and adaptability at baseline (T0), 1 week (T1), 4 weeks (T2), and 8 weeks post-intervention (T3) and compared the scores between the groups. A two-way repeated-measures analysis of variance was conducted to examine the effects of time, group, and their interaction. Results: For patients, there was a significant difference in hope (p = 0.001), spiritual well-being (p = 0.002), and family cohesion (p <0.001) and adaptability (p <0.001) between the intervention and control groups. The difference over time was also significant in family cohesion (p = 0.018) and adaptability (p = 0.003). The interaction effects were significant for hope (p = 0.034), spiritual well-being (p <0.001), and family cohesion (p <0.001) and adaptability (p <0.001). For family caregivers, there was a significant difference in anxiety (p = 0.037), depression (p = 0.001), and family adaptability (p = 0.036) between the intervention and control groups. Within groups, a significant difference in family adaptability (p = 0.012) was found. Moreover, the interaction effects were significant on anxiety (p = 0.001) and family cohesion (p = 0.038). Conclusions: The family participatory dignity therapy programme showed a positive effect on promoting patients' hope, spiritual well-being, and family cohesion and adaptability; amongst family caregivers, it decreased anxiety and depression, and enhanced family cohesion and adaptability. 

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The effects of a multidisciplinary supportive program on caregiver burden among the family caregivers of patients with advanced chronic obstructive pulmonary disease: A randomized controlled field trial

Background & Objective: The family caregivers of patients with chronic obstructive pulmonary disease (COPD) experience heavy caregiver burden (CB). This study investigated the effects of a multidisciplinary supportive program on CB in the family caregivers of patients with advanced COPD. Materials & Methods: This randomized field trial was conducted in the pulmonary subspecialty clinic of Birjand University of Medical Sciences, in 2019. In the present study, 92 eligible family caregivers of COPD patients were randomly allocated into intervention and control groups. The study intervention included eight sessions. Three educational sessions on COPD were held by a pulmonary disease specialist and an experienced nurse in COPD care, two educational sessions were held on coping strategies by a psychiatric nurse and three peer support sessions. CB was assessed before, immediately after and two months after the study intervention. SPSS (v. 21.0) was used for data analysis. Results: CB significantly decreased in the intervention group (P=0.01). It did not change significantly in the control group (P=0.63). Between-group differences, with respect to the mean score of CB at the baseline (P=0.66) and the first posttest (P=0.72) were not significant. The mean score of CB in the second posttest was significantly lower in the intervention group, compared to the control group (P=0.007). Conclusion: Multidisciplinary supportive program is effective in reducing CB among the family caregivers of patients with advanced COPD. © 2021, This is an original open-access.

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The Effectiveness of Group Hope Therapy Training on the Quality of Life and Meaning of Life in Patients with Multiple Sclerosis and Their Family Caregivers

Objective: Multiple sclerosis is a chronic, progressive neurological disease that, due to its special nature, has various physical and mental influences on the patients and their family's lives, decreasing the quality of life and threatening the meaning of life. The purpose of the present study was to evaluate the effectiveness of the group hope therapy training on the quality and the meaning of life in patients with multiple sclerosis and their family caregivers. Method: This quasi-experimental study was performed using pretest-posttest and control group. Thirty patients with multiple sclerosis along with 30 family caregivers who got low to medium scores on the Meaning in Life questionnaire by Steger (MLQ), Multiple Sclerosis Impact Scale (MSIS-29), and the Iranian Quality of Life questionnaire (IRQOL) for the caregivers were selected purposively. Then, the patients were randomly divided into two groups of 15 individuals in experimental and 15 individuals in control groups. The caregivers were grouped in the same manner. The protocol of group hope therapy training was carried out through eight two-hour sessions in two weeks separately on two experimental groups (the patients and the caregivers), and finally the posttest was given to four experimental and control groups. Results: The results of the data showed that the meaning of life in both the patient and the caregiver experimental groups increased significantly (P < 0.001), but there was no significant change in the patient and the caregiver control groups. Conclusion: Group hope therapy training is an effective intervention for improving the meaning of life and the quality of life in patients with multiple sclerosis. Also, any psychological intervention that aims to improve the quality of life in patients in an advanced stage of the disease requires attention to both the physical and the mental issues at the same time. Although group hope therapy training has improved the meaning of life in such patients, it did not have a significant impact on the quality of life. Therefore, paying attention to the stages of multiple sclerosis and the physical condition of the patients during the therapeutic intervention and adopting necessary complementary interventions seems to be essential. 

 

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Effect of family nursing therapeutic conversations on patients with heart failure and their family members: Secondary outcomes of a randomised multicentre trial

Aims and objectives: This study evaluates the short‐term (3 months), medium‐term (6 months) and long‐term (12 months) effect of family nursing therapeutic conversations added to conventional care versus conventional care on social support, family health and family functioning in outpatients with heart failure and their family members. Background: It has been emphasised that increased social support from nurses is an important resource to strengthen family health and family functioning and thus improve the psychological well‐being of patients with heart failure and their close family members. Design: A randomised multicentre trial. Methods: A randomised multicentre trial adhering to the CONSORT checklist was performed in three Danish heart failure clinics. Consecutive patients (n = 468) with family members (n = 322) were randomly assigned to either the intervention or control group. Participants were asked to fill out family functioning, family health and social support questionnaires. Data were measured ahead of first consultation and again after 3, 6 and 12 months. Results: Social support scores increased statistically significant both at short‐term (p = 0.002) medium‐term (p = 0.008) and long‐term (p = 0.018) among patients and their family members (p = <0.001; 0.007 and 0.014 respectively) in the intervention group in comparison with the control group. Both patients and their family members reported increased reinforcement, feedback, decision‐making capability and collaboration with the nurse. No significant differences between the intervention and control groups were seen in the family health and family functioning scales among patients and family members. Conclusions: Family nursing therapeutic conversations were superior to conventional care in providing social support from nurses. Relevance to clinical practice: Family nursing therapeutic conversations are suitable to improve the support from nurses among families living with heart failure.

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Effect of Exercise Training on the Mental and Physical Well-Being of Caregivers for Persons Living With Chronic Illnesses: A Systematic Review and Meta-Analysis

Background: Increased demands associated with caregiving may lead to deleterious physical and mental health outcomes. Caregiving has proven to have consequences that affect both physical and psychological well-being. The purpose of this systematic review and meta-analysis was to assess the effects of exercise training on the mental and physical health of caregivers for persons living with chronic illnesses. Methods: A systematic review following the Prisma methodology was performed searching eight databases. Thirteen out of 1,632 screened studies were included for analysis. Results: The standardized mean difference was used as the effect size (ES) and was calculated such that a positive ES indicated efficacy of exercise training for improving health. Overall, the meta-analysis yielded a statistically significant and small-to-medium ES (overall ES = 0.30; 95% confidence interval = [0.08, 0.52]; p =.007). Conclusions: Our analysis supports exercise training to improve the mental and physical health of family caregivers of persons living with chronic illnesses.

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A Digital Mobile Community App for Caregivers in Singapore: Predevelopment and Usability Study

Background: With increasing life expectancy and aging populations, the global prevalence of chronic diseases and the long-term care required for people with comorbidities is rising. This has led to an ever-growing need for caregiving. Previous literature has shown that caregivers face problems of isolation and loneliness. However, many health organizations mainly focus their efforts on in-person community groups that require participants to meet physically. This is not always convenient or accessible for caregivers who are often juggling caring for their care recipient with family and work responsibilities. Objective: With medical advancements such as the proliferation of mobile phones and internet technology, caregivers may have opportunities for easier access to resources and support. Technological innovations could help empower the caregiving community to seek assistance for improving their quality of life at their convenience. A community network app called Caregivers’ Circle was conceptualized in response to the needs of the caregivers on a day-to-day caregiving journey. This paper traces the predevelopment inquiry and technical details of this app to provide a clear understanding of its implementation along with a usability study to gauge user opinion of the app within Singapore. Methods: A predevelopment survey was conducted to identify specific needs of caregivers and gaps in the currently available web-based community networks. The survey consisted of questions on demographical data, health-related issues of the care recipient, mental and physical health–related issues of the caregiver, digital media use, information seeking, and support. This pre–app development survey was completed by 103 caregivers. Qualitative enquiries were also conducted with caregivers within Singapore to identify issues related to caregiving, support provided, and what caregivers would want from a caregiving mobile app. Results: From the feedback garnered from the caregivers, the developers were able to identify several caregivers’ needs and gaps within the current support networks. This feedback was integrated into the mobile app called Caregivers’ Circle upon development. The features of this app include a public forum for community discussions, a marketplace to buy and sell items, care groups to hold private discussions with friends or other users of the app, and a friends feature to search and add new caregiving friends. Conclusions: In general, the caregivers liked the Caregivers’ Circle app and were confident that this app could help them have a better quality of life. The Caregivers’ Circle app is unique in its integrated approach. The integration of many features that caregivers need on a daily basis into an easy app can save their time as well as help them navigate their life smoothly.

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Diabetes‐by‐Proxy: Virtual Embodiment of Disease by Oklahoma Choctaw Parents of Children with Type 1 Diabetes

Background: Childhood type 1 diabetes is increasing globally and requires meticulous at‐home care due to risks for fatal outcomes if glucose levels are not continuously and correctly monitored. Type 1 diabetes research has focused on metabolism and stress measurements confirming high parental worry levels. However, research on caregivers’ management strategies has lagged. Methods: We show parents’ intense, all‐encompassing work to preempt a disastrous drop in their child's glucose as a stress‐path to the virtual embodiment of their child's condition. That is, parents acquire diabetes‐by‐proxy. Our findings derive from four and half years of ethnographic research with the same 19 families in the Choctaw Nation of Oklahoma. Findings: These parents were exceptionally engaged as caregivers and distressed by the potentially fatal outcome of type 1 diabetes mismanagement. Conclusions: Diabetes‐by‐proxy names the parents’ experience and validates clinical attention to them as they cope with their crucial caregiving commitment.

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Development and psychometric testing of a family concordance competency scale for families with children having chronic illnesses

Aim: This study aimed to develop a Family Concordance Competency Scale for Family System Units (FCCS-Fa) for families with children having chronic disease, and to evaluate its reliability and validity. Methods: FCCS-Fa was developed by taking the following steps: (a) drafting based on the elements comprising concordance between healthcare professionals and families with patients suffering from chronic illness; (b) evaluation of face and content validity by an expert panel; and (c) re-examination of face and content validity by semi-structured interviews with 16 families. Criterionrelated validity was evaluated using the existing scale and construct validity was evaluated using exploratory factor analysis. Analysis of each FCCS-Fa evaluation item, internal consistency, and the 2-week test-retest reliability was also conducted. An anonymous self-reported questionnaire survey was conducted, targeting families with chronically ill children who were outpatients at three hospitals. Results: A total of 196 subjects were analyzed. As results of FCCS-Fa item analysis and exploratory factor analysis, a scale structure comprised of 17 evaluation items and three factors were adopted. In addition, a significant correlation with several existing scales was identified and the criterionrelated validity was also confirmed. The Cronbach's α coefficient for the overall scale was .927, the intraclass correlation coefficient applying the retest method was .905, and internal consistency and test-retest reliability were both confirmed. Conclusions: We developed FCCS-Fa with reliability and validity. Assessing family concordance competency using this scale and supporting families to achieve family concordance can lead to self-management by families.

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Development and initial validation of the diabetes family conflict scale (revised)‐short form in a racially and income diverse sample

Objective: The purpose of the study was to develop a short form of the revised diabetes family conflict scale (DFCS) in a racially and income diverse sample while retaining strong psychometric properties. Methods: One seventy nine youth with type 1 diabetes (ages 12–18 years) and caregivers completed the DFCS‐Revised as well as assessments of adherence, psychosocial functioning, and diabetes‐related stress. Hemoglobin A1c was also obtained. The sample was split at random into a development sample and validation sample. Results: Confirmatory factor analyses in the validation sample supported the use of a six‐item short form (DFCS‐SF) either as a total score (6‐items) or a direct (3‐item) and indirect (3‐item) score. Variations of the DFCS‐SF (three items of the 6‐item short form) also had acceptable model fit. The short‐form questionnaires had acceptable internal consistency and convergent validity (6‐item: Cronbach's a = 0.865, full scale DFCS r = 0.954; 3‐item: Cronbach's a = 0.757, full scale DFCS r = 0.912). The DFCS‐SF showed measurement invariance across both youth and caregiver respondents. Greater report of the DFCS‐SF by both youth and caregivers was significantly associated with higher HbA1c, more diabetes‐related stress, and more psychosocial concerns. Conclusions: The DFCS‐SF developed in the present study shows psychometric integrity in a diverse population of youth and can be utilized by providers to rapidly assess and potentially implement interventions to reduce diabetes family conflict, a psychosocial concern which is associated with elevated HbA1c, non‐optimal adherence, diabetes‐related stress, and psychological distress.

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Developing person‐centred care competencies for the healthcare workforce to support family caregivers: Caregiver centred care

Background: Family caregivers (FCGs) are an integral part of the healthcare system. Currently, FCGs provide 70%–90% of the care required by community‐dwelling children and adults living with complex chronic conditions and frailty. Despite FCG's contributions and the growing proportion of distressed caregivers, support for FCGs has not been a health system priority. Researchers have proposed training to enhance the competencies of health providers to work effectively with FCGs. In the absence of best practices for the competency indicators for caregiver‐centred care, we have developed a competency framework for training the health workforce to support FCGs. Objectives: The objectives in this paper are fourfold: (a) a brief review of stakeholder engagement that led to the development of the competencies the health workforce needs to support FCGs, (b) a description of the process used to name the competency domains, (c) a report on the Modified Delphi process (conducted 2019) used to validate the domain indicators, and (d) a description of the competency framework. Methods: We adopted a caregiver and a multilevel interdisciplinary stakeholder codesign approach throughout the competency development process. The competency domains include: (a) Recognising the Caregiver Role, (b) Communicating with FCGs, (c) Partnering with FCGs, (d) Fostering Resilience in FCGs, (e) Navigating Health and Social Systems and Accessing Resources, and, (f) Enhancing the Culture and Context of Healthcare. Our Caregiver‐Centred Care Competencies for the health workforce are only a first step in supporting FCGs in their vital roles. Conclusions: There are few education and training resources to enable and empower health providers to support FCGs, there is an urgent need to develop training resources for the health workforce to recognise and support FCGs.

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Determinants of Health Promotion Behaviors among Family Caregivers of Stroke Survivors

Purpose: To record the health promotion behaviors of family caregivers of stroke survivors, as well as potential determinants that could affect these behaviors. Methods: A cross-sectional study was carried out through home visits in the Attica region using the convenience sampling method. The studied population included 109 survivors who had suffered a stroke and experienced functional problems, and their 109 primary caregivers, who were family members, lived in the same house and were fully responsible for their care. The dependent variables were the caregivers’ health promotion behaviors, while the independent variables were the survivors and caregivers’ demographic characteristics, survivors’ functional capacity, depression, social support and changes in caregivers’ lives from caring. Results: Better health promotional behaviors were associated with the following: patient having advanced age and a high level of functionality, caregivers assessing their own state of health as “good”, greater social support, a higher educational level and a higher income level. In addition, more hours of patient care were associated with a less healthy lifestyle for caregivers. Conclusions: Promoting the health of family caregivers of stroke survivors is crucial for both survivors and caregivers. For this reason, it is of great importance to detect factors that affect the health promotion behaviors of caregivers in order to carry out appropriate interventions and improve their quality of life.

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Determinants of caregiving burden among informal caregivers of adult care recipients with chronic illness

Aims and Objectives: This study examined the predictors of caregiver burden based on patient and caregiver characteristics in a sample of Spanish caregivers looking after adult patients with chronic disease. The effect of task type and patient–caregiver interaction is also analysed. Background: Specific predictors of caregiver burden have been widely examined in the literature. Few studies, however, jointly analyse a wide range of factors, including the effect of task type and patient–caregiver interaction. Design: Correlational study.MethodsOne hundred and thirty five informal caregivers for 148 care recipients were recruited from primary health care centres. The caregivers responded to the short version of the Zarit Burden Interview (ZBI), the DEPendency index‐6 Dimensions (DEP‐6D), and reported how long they spent on caregiving on a daily basis. Sociodemographic and health characteristics were also recorded. Linear and logistic regression models were used to evaluate factors associated with ZBI scores and the likelihood of being severely burdened, respectively. This research complies with STROBE guidelines for observational studies. Results: Severe burden was present in 62% of the caregivers. Regression analysis shows that burden severity increases significantly with the level of dependence when the latter is measured either by DEP‐6D or by time spent on basic activities. Care related to incontinence and mobility has the greatest effect on burden, which is aggravated when the patient has behavioural problems. Poor caregiver health or not being retired also contributes to burden levels. Conclusions: These results establish that caregiver burden is related to characteristics of both the caregiver and the care recipient as well as to their interaction.Relevance to clinical practiceThe findings indicate that the socio‐sanitary attention focused on reducing caregiver burden must address the caregiver and patient as a dyad. Identifying the dependence level and the patient's aggressive behaviour can be a good predictor of caregiver burden.

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Determinants of acceptance of patients with heart failure and their informal caregivers regarding an interactive decision-making system: a qualitative study

Objective: Heart failure is a growing challenge to healthcare systems worldwide. Technological solutions have the potential to improve the health of patients and help to reduce costs. Acceptability is a prerequisite for the use and a successful implementation of new disruptive technologies. This qualitative study aimed to explore determinants that influence the acceptance of patients and their informal caregivers regarding a patient-oriented digital decision-making solution—a doctor-at-home system. Design: We applied a semistructured design using an interview guide that was based on a theoretical framework influenced by established acceptance theories. The interviews were analysed using a content analysis. Setting: A multicentred study in four European countries.ParticipantsWe interviewed 49 patients and 33 of their informal caregivers. Most of the patients were male (76%) and aged between 60 and 69 years (43%). Informal caregivers were mostly female (85%). The majority of patients (55%) suffered from heart failure with mild symptoms. Results: Four main categories emerged from the data: needs and expectations, preferences regarding the care process, perceived risk and trust. Participants expressed clear wishes and expectations regarding a doctor-at-home, especially the need for reassurance and support in the management of heart failure. They were receptive to changes to the current healthcare processes. However, trust was identified as an important basis for acceptance and use. Finally, perceived risk for decision-making errors is a crucial topic in need of attention. Conclusion: Patients and informal caregivers see clear benefits of digitalisation in healthcare. They perceive that an interactive decision-making system for patients could empower and enable effective self-care. Our results provide important insights for development processes of patient-centred decision-making systems by identifying facilitators and barriers for acceptance. Further research is needed, especially regarding the influence and mitigation of patients and informal caregivers’ perceived risks.

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Depressive Symptom Trajectories in Family Caregivers of Stroke Survivors During First Year of Caregiving

Background: The purpose of this study was to identify patterns of depressive symptom trajectory and examine the associations of the symptom trajectory with caregiving burden, family function, social support, and perceived health status of caregivers of stroke survivors during the first year of caregiving after discharge from rehabilitation center. Methods: Caregivers of stroke survivors completed a survey of depressive symptoms, caregiving burden, family function, perceived availability of social support, and perceived health status at postdischarge and 1 year. Patterns of depressive symptom trajectory (ie, symptom-free, symptom relieved, symptom developed, and persistent symptom groups) were identified by grouping depressive symptoms based on 2 assessments using the Center for Epidemiologic Studies-Depression. Repeated-measures analysis of variance and multinomial logistic regression were used to examine the associations. Results: Of the 102 caregivers, 57.8% were symptom-free, 20.6% experienced persistent depressive symptoms, 11.8% relieved depressive symptoms, and 9.8% developed depressive symptoms. There were significant changes in family function (Wilks A = 0.914, P = .038) and perceived health status (Wilks A = 0.914, P = .033) among the groups during the first year of caregiving. The persistent symptom group reported the highest level of burden and the lowest level of family function and perceived availability of social support at both assessment times. Compared with symptom-free caregivers, caregivers with persistent depressive symptoms were 7 times more likely to have fair/poor health rather than excellent/very good health at 1 year (odds ratio, 7.149; P = .012). Conclusion: Caregivers with persistent depressive symptoms are the most vulnerable to negative psychosocial outcomes and poor perceived health status during the first year of caregiving from discharge for stroke survivors.

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A delicate balance between control and flexibility: Experiences of care and support among pre‐teenage children with type 1 diabetes and their families

Background: For children with type 1 diabetes, the period of adolescence is associated with higher blood glucose levels and increased psychological distress compared to other age groups. Focusing on pre‐teens (9‐12 years) with type 1 diabetes and their families has been suggested as key to understanding and reducing these challenges. The aim of this study was to explore: 1, how diabetes affects family life, 2, experiences of and needs for support and 3, how care responsibilities are negotiated among pre‐teens with type 1 diabetes and their families. Methods: Data were obtained from four interactive workshops with pre‐teens (n = 17), their parents (n = 26) and their siblings (n = 14). Dialogue tools, for example quotes and picture cards, were used to facilitate discussion and reflection concerning family life with type 1 diabetes. Findings: Data analysis resulted in three themes: 1, diabetes takes up 'a lot of space', 2, giving and receiving support and 3, balancing control and flexibility. While diabetes took up significant space in the families, family members protected each other from their respective frustrations. Conclusions: The findings point to the significance of considering all key family members and their interactions in diabetes interventions. This includes balancing control and flexibility, negotiating responsibilities and building trust.

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Dealing With the Unthinkable: Bladder and Colorectal Cancer Patients’ and Informal Caregivers’ Unmet Needs and Challenges in Life After Ostomies

Objectives: We examined patient and informal caregiver unmet needs to identify areas for targeted supportive care interventions and programs to enhance both patient and informal caregiver experience. Data Sources: A total of 30 patients who underwent ostomy surgeries for bladder or colorectal cancers and 13 informal caregivers participated in the study. Patients were enrolled at the Icahn School of Medicine at Mount Sinai between 2017 and 2018. Qualitative data were collected by individual interviews, audiotaped, and transcribed verbatim. Transcribed data were iteratively analyzed using Atlas.ti to explore patient and caregiver unmet needs. Results: Patients and informal caregivers reported having insufficient psychological preparation for ostomy surgeries, and very limited hands-on training on stoma care and utility of stomal appliances. Unmet psychological needs related to depression, anxiety, and distress caused by changes in body image and sexual, urinary, and bowel function were reported. Patients and caregivers also reported significant patient medical needs in the acute postoperative period including pain, fatigue, sleep disturbance, inflammation, and complications resulting in hospital readmissions. Colorectal cancer patients specifically experienced significant challenges with changes in diet and nutrition that contributed to ostomy care burden. Both patients and caregivers recommended seeking psychological and social support to enhance both patient and caregiver emotional adjustment to life after ostomies. Conclusion: Meeting patient and informal caregiver unmet informational and supportive care needs is imperative to improve their quality of life and adjustment. Implications for Nursing Practice: An effective supportive care plan should be designed and utilized in clinical care to improve ostomy patients’ and caregivers’ outcomes. 

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Correlation between the burden of family caregivers and health status of people with diabetes mellitus

Background: Family caregivers play an important role in providing long-term care for people with diabetes mellitus because it is a chronic disease that requires critical attention. This increases the burden of family caregivers which affects the health status of people with this disease. Therefore, the aim of this study is to determine the correlation between the burden of family caregivers and the health status of people with diabetes mellitus. Design and methods: This is an analytic observational study which was carried out in the work area of public health centers in Malang City using a cross-sectional design approach. The subjects used were 327 people with diabetes mellitus and their families were selected using the cluster sampling technique. Data collection was carried out using demographic data instruments, Zarit Burden Interview (ZBI) questionnaire to measure the burden of family caregivers and the SF 12 questionnaire to measure the health status of people with diabetes mellitus. Results: The results of the Spermank-Rank statistical test showed that there was a negative relationship between the burden of family caregivers and the health status of people with diabetes mellitus (p-value 0.000 and coefficient value of -0.333). Conclusions: It was concluded that the lesser the burden on family caregivers, the better the health status of people with diabetes mellitus. Therefore, interventions are needed to reduce the burden of family caregiver and improve the health status of patients with diabetes mellitus. 

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Contradictory responses to the COVID-19 pandemic in amyotrophic lateral sclerosis patients and their families and caregivers in Japan

Objective: The coronavirus disease 2019 (COVID-19) pandemic has resulted in a shortage of medical resources, including ventilators, personal protective equipment, medical staff, and hospital beds. We investigated the impact of COVID-19 in amyotrophic lateral sclerosis (ALS) patients, their families, caregivers, and medical experts. Methods: We conducted a nationwide ALS webinar about COVID-19 in May 2020 and sent a questionnaire to those enrolled. Results: A total of 135 participants (31 ALS patients; 23 families and caregivers of ALS patients; 81 medical experts) responded to this cross-sectional self-report questionnaire. The results showed that tracheostomy and invasive ventilation (TIV) was used in 22.6% of ALS patients, whereas 77.4% of ALS patients were not under TIV. Among non-TIV patients (n=24), 79.2% did not want TIV in the future. However, 47.4% of non- TIV patients not wanting a tracheostomy in advanced stages replied that they would want an emergency tracheostomy if they developed COVID-19-related pneumonia. These results suggest that ALS patients may be receptive to emergency treatments for reasons other than ALS. In addition, approximately half of the ALS patients agreed with the policy of not ventilating the elderly or ALS patients in case of a ventilator shortage. Furthermore, compared with medical experts, few ALS patients reported that the chance for ALS patients to obtain work was higher due to the increasing availability of remote work. Conclusions: This survey indicates that the COVID-19 pandemic might be associated with increased distress about access to care and work, inducing contradictory responses and potential hopelessness among ALS patients. 

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A comparison study: caregiver functioning and family resilience among families of children with cystic fibrosis, asthma, and healthy controls

Background: Caregivers of children with cystic fibrosis (CF) are at risk for psychosocial difficulties, which has been related to poorer child well-being and medical adherence. Methods: The present study utilized the National Survey of Children's Health (NSCH) to examine self-reported differences in caregiver functioning among a matched sample of caregivers of youth with CF, asthma, and healthy controls (N = 114). Results: CF caregivers reported poorer mental health and more parenting aggravation. Among CF caregivers, poorer caregiver mental health predicted less family resilience, which in turn, predicted more parenting aggravation. Conclusions: Findings have implications for prevention screening and brief interventions within pulmonary medicine.

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The challenges characterizing the lived experience of caregiving. A qualitative study in the field of spinal cord injury

Study design: Qualitative exploratory study. Objectives: To explore the lived experience of SCI caregivers, with a focus on the challenges of their role. Setting: Caregivers of people with SCI living in the community in Switzerland. Methods: Data were collected through semi-structured interviews. Thematic analysis was performed. Results: The sample included 22 participants (16 women, 15 life partners) with a mean age of 61 years who had been caregivers for an average of 18 years. Caregiving in SCI seemed to be characterized by two phases. The first phase was relatively short and was central to becoming a caregiver; it was marked by challenges related to adjusting to the role of caregiver (e.g., dealing with shock, feeling unprepared). The second phase is lifelong and is characterized by a number of recurrent challenges related to balancing caregiving and personal life (e.g., having to prioritize caregiving over personal wishes, negotiating tasks and workload). Challenges related to lacking appropriate housing, facing financial uncertainty and dealing with bureaucracy were noted during both phases. Caregivers had to deal with these challenges to stay in step with life changes and newly emerging needs. Conclusions: Informal caregivers have a major role in supporting people with SCI. But their needs are not static. Any strategy to empower them has to adapt to an evolving role characterized by multiple tasks and challenges. A functional relationship between caregivers and care recipients is based on the recognition of their individualities and the different phases of adaptation, which is also an enriching process.

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Caring for Patients with Psychosis: Mental Health Professionals’ Views on Informal Caregivers’ Needs

Aims: The aim of this study was to explore the views of mental health professionals regarding the needs of the informal caregivers of patients with chronic psychotic syndrome. Design: A qualitative research design was used. The sample consisted of 12 mental health professionals selected by a purposive sampling strategy. Data were collected through semistructured, face to face interviews. Framework analysis was used to analyze qualitative data and establish main themes and subthemes. Findings: Three main themes emerged namely, (i) impact of caring on caregivers’ lives, (ii) caregivers’ needs, and (iii) recommendations for better care. Informal caregivers’ needs were conceptualized into subthemes within the main themes. Caregivers’ increased responsibilities of caring for their relatives, the impact on their mental and physical health status and the restrictions in their social and professional life were revealed. Conclusions: Targeted health interventions and social policy planning are recommended for supporting informal caregivers and improving patient care.

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Caring for patients at home after acute exacerbation of chronic obstructive pulmonary disease: A phenomenological study of family caregivers' experiences

Aims and objectives: To understand the experiences and support needs of informal caregivers of patients with chronic obstructive pulmonary diseases chronic obstructive pulmonary disease who return home following an acute exacerbation. Background: The presence of an informal caregiver is important to provide practical and emotional support after an episode of acute exacerbation of chronic obstructive pulmonary disease. However, caregiving in such circumstances can be challenging and stressful. Design: Phenomenology. Methods: This is a phenomenological study based on semi‐structured interviews with sixteen primary caregivers of chronic obstructive pulmonary disease patients. Interview data were analysed using Colaizzi's descriptive analysis framework, to identify significant themes and sub‐themes. Data were collected between April‐December 2017 in a Teaching Hospital in Italy. The study was designed and reported following the COREQ guidelines and checklist. Results: Analysis elicited five themes embracing various aspects of the caregivers' lived experiences: (a) a home disrupted, (b) living with constant vigilance and anxiety, (c) feeling the need to escape (d) self‐justifications for caregiving role/duty, and (e) feeling abandoned by professionals. Conclusions: Our results show that carers experience a range of difficulties when caring for their relative at home with chronic obstructive pulmonary disease. Some of these are linked to the physical disruption of their home but many are linked to feelings of inability to cope and the psycho‐social impact of the caring role. The study also shows how participants felt unsupported by professionals. Focused support for carers is required to enable them to meet these challenges. Relevance to clinical practice: Healthcare professionals should be trained to provide technical and psychological support to caregivers especially during the phases of disease that may involve episodes of exacerbation. Home care and continuity of care can work if there is excellent communication and collaboration between healthcare professionals and caregivers. Developing appropriate support for family caregivers is essential to address the problems they can face.

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“Caregiving is like on the job training but nobody has the manual”: Canadian caregivers’ perceptions of their roles within the healthcare system

Background: Stepping into the role of an unpaid caregiver to offer help is often considered a natural expectation of family members or friends. In Canada, such contributions are substantial in terms of healthcare provision but this comes at a considerable cost to the caregivers in both health and economic terms. Methods: In this study, we conducted a secondary analysis of a collection of qualitative interviews with 39 caregivers of people with chronic physical illness to assess how they described their particular roles in caring for a loved one. We used a model of caregiving roles, originally proposed by Twigg in 1989, as a guide for our analysis, which specified three predominant roles for caregivers – as a resource, as a co-worker, and as a co-client. Results: The caregivers in this collection spoke about their roles in ways that aligned well with these roles, but they also described tasks and activities that fit best with a fourth role of ‘care-coordinator’, which required that they assume an oversight role in coordinating care across institutions, care providers and often advocate for care in line with their expectations. For each of these types of roles, we have highlighted the limitations and challenges they described in their interviews. Conclusions: We argue that a deeper understanding of the different roles that caregivers assume, as well as their challenges, can contribute to the design and implementation of policies and services that would support their contributions and choices as integral members of the care team. We provide some examples of system-level policies and programs from different jurisdictions developed in recognition of the need to sustain caregivers in their role and respond to such limitations.

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Caregivers of Patients with Heart Failure: Burden and the Determinants of Health-Related Quality of Life

Purpose: To assess the burden among caregivers of patients with heart failure (HF) with left ventricular ejection fraction (LVEF) ≤ 60%. The burden by New York Heart Association (NYHA) functional class was also characterized. Patients and Methods: A cross-sectional study was conducted in France, Germany, Italy, Spain, and UK from June to November 2019. Patient record forms were completed by 257 cardiologists and 158 general practitioners for consecutive HF patients. Caregivers who accompanied the patient to their consultation completed a caregiver self-completion survey voluntarily, which included the Family Caregiver Quality of Life Questionnaire (FAMQOL) and 5-level 5-dimension EuroQol questionnaire (EQ-5D-5L). Results: We analyzed 361 caregivers of patients with HF (NYHA class I, n=41; II, n=212; III IV, n=108). Mean age of caregivers was 58.8 years (NYHA I/II/III–IV: 59.1/60.8/54.6 years; p=0.0029), with majority being females (73.1%). Caregivers spent on average 19.8 hours/week caring for a HF patient, which increased with increase in NYHA class (I/II/III–IV: 11.8/18.1/25.9 hours/week; p=0.0094). Caregivers (24.1%) reported providing emotional support/encouragement to patients as the most troublesome/inconvenient caregiving activity (no significant difference across NYHA class). Nearly one-third of caregivers experienced stress (NYHA I/II/III–IV: 17.1%/28.8%/40.7%; p=0.0111) and anxiety (26.8%/24.1%/39.8%; p=0.0127) due to caregiving burden. The overall FAMQOL mean score decreased significantly (poorer QoL) with increase in NYHA class (I/II/III–IV: 58.1/56.3/52.2; p=0.0069). A trend of decreasing scores with increasing NYHA class was observed across physical, emotional, and social domains (each p≤ 0.012). Conclusion: Caregivers of HF patients with LVEF ≤ 60% experienced a significant burden, which was higher among caregivers of patients with more severe and symptomatic disease.

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Caregivers of Frail Elders: Updating a National Profile

Purpose: Family caregivers comprise the backbone of long-term-care provision in the United States, yet little is known about how the composition and experience of family caregiving has changed over time. Design and Methods: Data are drawn from the 1989 and 1999 National Long-Term Care Survey and Informal Caregiver Survey to develop nationally representative profiles of disabled older adults and their primary informal caregivers at two points in time. Results: The proportion of chronically disabled community-dwelling older adults who were receiving informal assistance from family or friends declined over the period of interest, whereas the proportion receiving no human help increased. On average, recipients of informal care were older and more disabled in 1999 than in 1989. Primary caregivers were children (41.3%), spouses (38.4%), and other family or friends (20.4%); children were more likely and others less likely to serve as primary caregivers in 1999 relative to 1989. Primary caregivers provided frequent and high levels of help at both points in time. A striking increase was found (from 34.9% to 52.8%) in the proportion of primary caregivers working alone, without secondary caregiver involvement. Implications: In the context of projected demographic trends and budgetary constraints to public health insurance programs, these data underscore the importance of identifying viable strategies to monitor and support family caregivers in the coming years. 

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Caregiver economics: A framework for estimating the value of the American Jobs Plan for a caring infrastructure

The authors present a method for estimating the value and cost effectiveness of the U.S. government initiative known as the American Jobs Plan, particularly regarding the program's allocation of funds targeted toward the expansion of access to home and community-based services (HCBS) for older citizens with disabilities.

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Caregiver burden in Buruli ulcer disease: Evidence from Ghana

Background: Buruli ulcer disease (BUD) results in disabilities and deformities in the absence of early medical intervention. The extensive role of caregiving in BUD is widely acknowledged, however, associated caregiver burden is poorly understood. In this paper we assessed the burden which caregivers experience when supporting patients with BUD in Ghana. Method: principal findings This qualitative study was conducted in 3 districts in Ghana between August and October 2019. 13 semi-structured interviews were conducted on caregivers of BUD patients in the local language of Twi. Data was translated into English, coded into broad themes, and direct content analysis approach was used to analyse results. Results: The results show the caregivers face financial, psychological and health issues as a consequence of their caregiving role. Conclusion/significance: This study found significant caregiver burden on family members. It also highlighted the psychological burden caregivers experience and the limited knowledge of the disease within endemic communities. Further research is needed to quantify the caregiver burden of BUD at different economic levels in order to better understand the impact of possible caregiver interventions on patient outcomes.

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The care needs of persons with oropharyngeal dysphagia and their informal caregivers: A scoping review

Introduction: Besides affecting physical health, Oropharyngeal Dysphagia (OD) entails limitations in daily activities and social participation for both patients and their informal caregivers. The identification of OD-related needs is crucial for designing appropriate person-centered interventions. Aims: To explore and map the literature investigating the care needs related to OD management of adult persons with OD and their informal caregivers during the last 20 years. Methods: A scoping review was conducted and reported following PRISMA guidelines. Five electronic databases and reference lists of eligible publications were searched for original works in English or Italian, published between January 2000 and February 2021. Two independent raters assessed studies’ eligibility and extracted data; a third rater resolved disagreements. Extracted care needs were analyzed using a Best fit framework synthesis approach. Results: Out of 2,534 records preliminarily identified, 15 studies were included in the review and 266 care needs were extracted. All studies were conducted in Western countries. Research methods primarily consisted of qualitative interviews and focus groups (14 studies, 93.3%); head and neck cancer was the most frequent cause of patients’ dysphagia (8 studies, 53.3%); caregivers’ perspective was seldom investigated (5 studies, 33.3%). Both patients and caregivers primarily reported social (N = 77; 28.9%) and practical (N = 67; 25.2%) needs, followed by informational (N = 55; 20.7%) and psychological (N = 54; 20.3%) ones. Only patients reported physical needs (N = 13; 4.9%), while spiritual needs were not cited. Conclusions: The recurrence of personal and social needs besides physical ones highlighted the manifold impact of OD on patients’ and caregivers’ lives. Larger and more focused studies are required in order to design tools and interventions tailored to patients’ and caregivers’ needs.

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Care in times of COVID-19: the impact of the pandemic on informal caregiving in Austria

Background: Much attention has been paid to the effects of the COVID-19 pandemic on long-term care but the impact on informal caregivers has remained speculative. In Austria, like in other European countries, informal care is carried out overwhelmingly by (non-cohabiting) relatives. Limited care services available during the pandemic, social-distancing, increased unemployment and competing care needs within households (e.g. due to school closures) may have changed the prevalence and intensity of informal caregiving. Moreover, these changes may have increased the psychological strain experienced by caregivers. Focusing on Austria, this study aims to empirically analyse the following research questions: how have the prevalence and intensity of informal care changed due to the pandemic? How has the psychological well-being of informal caregivers been affected? Methods: We use a pre- and post-onset of the pandemic research design based on a representative survey carried out in Austria in June 2020 (N = 2000) in combination with comparable 2015 data from the European Social Survey. Results: Findings suggest that neither prevalence nor intensity of informal care changed significantly due to the pandemic. However, the psychological well-being gap between carers and non-carers increased with the start of the pandemic, especially among men. Findings are discussed in relation to the policy measures implemented and possible policy implications for the future. 

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Care Burden and Coping Strategies among Caregivers of Paediatric HIV/AIDS in Northern Uganda: A Cross-Sectional Mixed-Method Study

Background: Family caregivers provide the bulk of care to children living with HIV. This places an enormous demand and care burden on the caregivers who often struggle to cope in various ways, some of which may be maladaptive. This may adversely affect their quality of care. Very little literature exists in resource-limited contexts on the burden of care experienced by caregivers on whom children living with HIV/AIDS depend for their long-term care. We assessed care burden and coping strategies among the caregivers of paediatric HIV/AIDS patients in Lira district, northern Uganda. Methods: A mixed-method cross-sectional study was conducted among 113 caregivers of paediatric HIV patients attending the ART clinic at a tertiary healthcare facility in Lira district, northern Uganda. A consecutive sampling method was used to select participants for the quantitative study, while 15 respondents were purposively sampled for the qualitative data. Quantitative data were collected using standard interviewer-administered questionnaires, while in-depth interview guides were used to collect qualitative data. Data were entered, cleaned, and analysed using SPSS version 23. Qualitative data were analysed thematically. Results: The majority of the caregivers, 65.5% (74), experienced mild-to-moderate burden. The mean burden scores significantly differed by caregivers’ age (P=0.017), marital status (P=0.017), average monthly income (P=0.035), and child’s school attendance (P=0.039). Accepting social support, seeking spiritual support, and reframing were the three most commonly used strategies for coping. Marital status and occupation were, respectively, positively and negatively correlated with information-seeking as a coping strategy, while monthly income was positively correlated with psychosocial support as a strategy. Seeking community support was negatively correlated with the duration of the child’s care. Conclusions: Our findings show that care burden is a common problem among the caregivers of children living with HIV in the study context.

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Burdens on caregivers of children ages one to sixteen years living with sickle cell disease attending a specialised clinic in urban, Jamaica

Background: Sickle cell disease (SCD) requires continuous familycentred management due to its chronicity and severity. Affected children depend greatly on their caregivers for assistance. SCD is the fourth leading cause of hospitalisation in children in Jamaica, with an incidence rate of 1:150 births. This strong dependence, frequent hospitalisation, medical visits and along with the unpredictable nature of the disease may cause financial strain and caregiver burden. This study seeks to determine the level of caregiver burden experienced by caregivers of children living with sickle cell disease attending a clinic in urban Jamaica. Design: A cross-sectional study was conducted among 180 caregivers of children ages 1 to 16 years living with SCD, attending a specialised sickle cell clinic. Data were collected using the Zarit Burden Interview (ZBI) Version 1.0. Descriptive statistics were utilised to summarise data. Results: The majority (79%) of respondents were females between the ages of 20 and 49 years old. Majority (76%) were employed, with 13% earning less than $10,000 which is below minimum wage. 48% of caregivers reported that they rarely or never experienced burden of care with their children. The ZBI overall burden score was M = 27.2, which indicate mild -- moderate burden. The highest burden was future expectations for child (41%). Majority (73%) indicated they often did not have enough money to care for the child. Conclusion: In this study, caregivers are younger and experienced burden mild to moderate; factors such as stable income and family support helped to reduce burden.

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The Burden of Primary Caregivers of Spinal Muscular Atrophy Patients and Their Needs

Aim: This study aims to reveal the problems faced by families of children with spinal muscular atrophy (SMA), by evaluating their care burden, needs, and expectations. Materials and Methods: The participants were the primary caregivers of 34 children between the ages of 0 and 18 years diagnosed with SMA. Thirteen children were diagnosed with type 1, 13 children with type 2 and 8 children with type 3 SMA. Data on the medical history, functional levels of the participants, and the characteristics of families were collected. The childrens' parents completed the Family Needs Survey and the Zarit Caregiver Burden Scale. Results: According to the results of the Family Needs Survey, it was found that information was the most common requirement, and this was independent of the level of education. According to the Caregiver Burden Scale, it was recorded that 64.7% of the caregivers were under mild/ moderate burden. While there was a moderate correlation (r = 0.574; P < .001) between the Caregiver Burden Scale and the Family Needs Survey, it was observed that the functional level of the child was not associated with family needs and caregiver burden. Conclusions: Our study suggests that the needs of families of SMA patients, especially related to income level, have changed. The caregivers' burden is not directly related to the income level or the functional level of the child. Families' need for information should also be prioritized within the rehabilitation program.

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Burden and social support in informal caregivers of people undergoing kidney dialysis: a mixed study

Objectives: to analyze the burden and the social support of the informal caregivers of people undergoing kidney dialysis. Methods: mixed study, based on the Theory of Stress and Overload, using instruments of sociodemographic characterization, the Social Support Survey from the Medical Outcomes Study, Zarit's Burden Scale, and guiding questions. Analysis of data used statistical and thematic inferences. Results: 55 caregivers were evaluated, most were women, from 31 to 50 years old, married, and having worked in care for more than three years. A high level of affective and material support was observed, with a light overload on the caregiver. The central theme of the discourses was: "Experiences of the caregiver: between the burden of responsibility and the search for meaning". Conclusions: a small overload was found in the participants, with a high median in the dimensions of affective and emotional support, in the relations between positive social interactions and the burden of the caregivers, in addition to the duality or responsibility and the meaning of care.

 

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Burden and depression among Jordanian caregivers of hemodialysis patients: A cross-sectional study

Introduction: Caring for patients receiving hemodialysis places a burden on caregivers. Objectives: To examine caregiving burden and depression in the family caregivers of patients receiving hemodialysis and associated factors. Methods: A cross-sectional design was used. Participants were 204 adult caregivers of patients receiving hemodialysis. Questionnaires included sociodemographic characteristics, the Oberst Caregiving Burden Scale-Difficulty (OCBS-D) subscale, Bakas Caregiving Outcomes Scale (BCOS), and the Patient Health Questionnaire-9 to measure the burden and depression of caregivers. Descriptive statistics, two linear regression analyses, and multinomial logistic regression were used in data analysis. Results: The majority (59.0%, n = 120) of caregivers had a moderate level of depression with scores ranging from 11 to 16. The analysis showed that the mean score of OCBS-D was 42.0 (SD = 4.7) with scores ranging from 26.9 to 58.9 (range = 32.0), while the caregivers' mean score of BCOS was 52.1 (SD = 9.3) with scores ranging from 38.0 to 82.5 (range = 44.5). Given that the expected score of OCBS-D and BCOS ranged from 15 to 75 and 15 to 105, respectively, the analysis indicated a moderate to a high level of burden among caregivers. Age and travel time were associated with a higher likelihood of negative outcomes in the family caregivers, while higher patient age was associated with a greater caregiver burden. Relevance to Clinical Practice: It is important to assess and address the practical issues that caregivers experience, such as employment-related responsibilities, financial difficulties, and the need to learn specific skills related to patients’ chronic illnesses. Conclusion: Caregivers of patients receiving hemodialysis are likely to experience moderate depression and burden. Caregiver burden increases with patient age and travel time to the hemodialysis units. 

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Beyond the Patient: A Mixed-Methods Inquiry Into Family Members’ Involvement in the Treatment of Parkinson’s Disease to Target Third-Party Disability

Purpose: Family members of people with Parkinson’s disease (PD) may experience third-party disability, manifesting as difficulty managing communication breakdowns and changed relationships influenced by communication disorders. This study examined family involvement in therapy to address third-party disability from the perspective of family members of people with PD and speech-language pathologists (SLPs). Method: A mixed-methods design was used with two phases of data collection. In Phase 1 qualitative interviews, nine family members shared their perspectives about their involvement in therapy. In Phase 2, a survey was developed from Phase 1 data to gather data from SLPs (N = 110) on their clinical practices involving family members. Results: Family members and SLPs agreed that when family were involved in therapy, it was primarily to support therapy exercises for the person with PD. Many SLPs reported providing supportive activities for family members. However, qualitative data from family members suggested that the limited involvement they had in therapy did not sufficiently meet their unique needs resulting from communication changes with the person with PD and other related challenges. Constraints influencing family member involvement included insurance billing regulations, privacy laws for patients, and family members’ availability. Conclusions: While some families and SLPs reported efforts to specifically include families and address their needs in therapy, these practices were inconsistent and, from families’ perspectives, insufficient to meet their own needs. Future research should consider family-centered approaches that involve family members in speech-language therapy to enhance their daily lives, along with persons with PD.

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Becoming an empowered parent. How do parents successfully take up their role as a collaborative partner in their child's specialist care?

Background: The purpose of this article is to offer an improved understanding of how parents of children with long-term disabilities are empowered to successfully take up their role as decision-making partners in the design and delivery of the care of their child. The intention is to stimulate dialogue, encourage reflection and provide practical suggestions for health professionals working with children and their families. Design: The reported findings are from a study which was guided by a constructivist grounded theory methodology. This involved an iterative process of repeated cycles of data collection and analysis, which comprised 12 semi-structured, in-depth interviews with 14 parents of children accessing paediatric services within a single National Health Service Trust. Results: A novel model, explaining how the power im/balance and the perceived state of the therapeutic relationship influence how successfully a parent takes up their position in the collaborative partnership, is presented and discussed. Conclusion: It is suggested that by thoughtfully addressing the traditional hierarchy that exists within healthcare, health professionals might facilitate the development of a 'truly' therapeutic relationship, which can help promote parental empowerment.

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Barriers and facilitators for shared decision making in older patients with multiple chronic conditions: a systematic review

Background: The aim of this study was to describe barriers and facilitators for shared decision making (SDM) as experienced by older patients with multiple chronic conditions (MCCs), informal caregivers and health professionals. Methods: A structured literature search was conducted with 5 databases. Two reviewers independently assessed studies for eligibility and performed a quality assessment. The results from the included studies were summarized using a predefined taxonomy. Results: Our search yielded 3838 articles. Twenty-eight studies, listing 149 perceived barriers and 67 perceived facilitators for SDM, were included. Due to poor health and cognitive and/or physical impairments, older patients with MCCs participate less in SDM. Poor interpersonal skills of health professionals are perceived as hampering SDM, as do organizational barriers, such as pressure for time and high turnover of patients. However, among older patients with MCCs, SDM could be facilitated when patients share information about personal values, priorities and preferences, as well as information about quality of life and functional status. Informal caregivers may facilitate SDM by assisting patients with decision support, although informal caregivers can also complicate the SDM process, for example, when they have different views on treatment or the patient’s capability to be involved. Coordination of care when multiple health professionals are involved is perceived as important. Conclusions: Although poor health is perceived as a barrier to participate in SDM, the personal experience of living with MCCs is considered valuable input in SDM. An explicit invitation to participate in SDM is important to older adults. Health professionals need a supporting organizational context and good communication skills to devise an individualized approach for patient care.

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Assistive technologies for children with cognitive and/or motor disabilities: interviews as a means to diagnose the training needs of informal caregivers

Purpose: The present study seeks to survey information and training needs of informal caregivers related to the use of assistive technologies at home, so as to, in the near future, try to meet them. Therefore, the full aim of this study is to contribute to reducing technology abandonment and to enhancing its use in the family setting by children with cognitive and/or motor limitations. Materials and methods: Content analysis of a set of ten interviews with informal caregivers of children and youngsters with cognitive and/or motor disabilities. Results: Assistive technologies open a wide range of opportunities, mostly to students whose learning skills diverge from standard development. They promote communication, independence as well as inclusion of children with cognitive and/or motor disabilities. Despite the human and material resources available, the implementation of assistive technologies in many family settings is still a struggling task. The results reveal a perspective on (i) the interaction between those caregivers and their children, (ii) children’s skills in using assistive technology, (iii) caregivers’ digital literacy and (iv) their training needs. Conclusions: The present paper highlights the fact that carrying out interviews with informal caregivers leads to obtaining significant data for a diagnosis of the use of assistive technologies in the family setting and to assess the needs of informal caregivers. From this study, the need to provide caregivers with further training on assistive technologies emerges as preponderant, and to improve caregivers’ skills in the search for and access to practical information.Implication for Rehabilitation Cognitive and/or motor disabilities impact on communication, independence and also on the full inclusion of children, especially when efforts developed at school do not have any follow up at home. Endowing informal caregivers with the knowledge and skills to use assistive devices with their children is a step forward to their full development. Interviews conducted with informal caregivers are a means to gaining insights into understanding the reasons behind assistive technology abandonment at home. 

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Are family carers part of the care team providing end-of-life care? A qualitative interview study on the collaboration between family and professional carers

Background: The attention of healthcare professionals is directed mainly towards the recipients of care and often insufficiently towards family carers. However, an effective collaboration between professionals and family carers is vital to provide quality palliative and end-of-life care. Such collaboration is under-studied in a palliative care context. Aim: This study aimed to investigate how family carers of people who live at home with a life-limiting chronic illness experience and perceive collaboration with different healthcare professionals in the last phase of life. Design: Face-to-face semi-structured interviews were conducted with the primary family carers of people with a life-limiting chronic illness. Interpretative phenomenological analysis was used to analyse the data. Setting/participants: A heterogeneous sample of 30 family carers of people with cancer, heart failure or dementia was recruited through a variety of care providers and services, in order to reflect the heterogeneity of caregiving in serious illness. Results: Five main themes emerged from interpretative phenomenological analysis that describe the quality of the collaboration between family carers and professionals: respecting family carers both as someone with care needs and as a member of the care team; the continuous availability and accessibility of healthcare professionals; the provision of information and communication including family carer issues; the coordination of care between all parties and contextual factors. The dominant experience by family carers was one of missed opportunities across these themes. Conclusions: This qualitative study about the experiences and perceptions of family carers of people with a chronic life-limiting illness living at home regarding the collaboration with different healthcare providers in the last phase life, showed that family carers experience a lot of possibilities, but perceive missed opportunities as well, for healthcare professionals to effectively collaborate with them for palliative care.

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Application of the hospital‐family holistic care model in caregivers of patients with permanent enterostomy: A randomized controlled trial

Aims: To evaluate the effectiveness of the hospital‐family holistic care model based on the theory of 'Timing It Right' in caregivers of patients with permanent enterostomy. Design: A prospective randomized controlled trial. Methods: One hundred and twenty‐five caregivers of patients with permanent enterostomy were recruited from 1 May 2017–31 August 2019. They were randomized into either intervention group (N = 62) or control group (N = 63). The control group received routine care and follow‐up, while the intervention group received routine care, follow‐up, and hospital‐family holistic care intervention based on 'Timing It Right'. The care ability, psychological distress, and life quality of the caregivers were evaluated between the groups before the intervention, at discharge, and 3 and 6 months after discharge. Results: One hundred and eleven caregivers completed the study (88.8%). At 3 and 6 months after discharge, the care ability and life quality in the intervention group were significantly better than those in the control group (t = 8.506/9.783, t = 22.652/26.179, p < 0.05) based on the t tests, and the psychological distress was lower than that in the control group. The ostomy adaptability of the control group was significantly lower than that in the intervention group (p < 0.001) based on the t tests, and the χ2 test showed that ostomy complication was more than that in the intervention group (23.81% vs. 12.90% and 34.92% vs. 19.35%; p < 0.05) at 3 and 6 months after discharge. The interaction between time and group showed that the effect of time factor varied with the group and the four evaluation indexes in the intervention group gradually improved with the extension of the observation time and were better than those in the control group based on generalized estimating equation model. Conclusion: The hospital‐family holistic care model based on 'Timing It Right' can effectively improve the care ability of caregivers of patients with permanent enterostomy, reduce psychological distress, and improve the quality of life. Impact: The caregivers of patients with permanent enterostomy showed dynamic changes in their care experience and needs at different stages of the disease. The hospital‐family holistic care intervention strategy based on 'Timing It Right' can effectively improve the caregiver's care ability, alleviate psychological distress, and improve the quality of life. Additionally, improving the patients' stoma adaptability and reducing the incidence of complications related to ostomy.
 

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Adolescent Latinas' with Diabetes and Their Mothers' Understanding of Diabetes and Reproductive Health: Converging Themes to Inform a Culturally Sensitive Preconception Counseling Program

Background: Latinas are at an increased risk for diabetes and reproductive health (RH) complications with sexuality and pregnancy. This study explored the understanding of diabetes related to RH, pregnancy, unplanned pregnancies, preconceptioncounseling, tight-control, and family planning among Latina adolescents with diabetes and their mothers and explored converging themes. Method: The qualitative descriptive study used written open-ended questions (English or Spanish) with Latina mothers (n = 13) and daughters (n = 21). Responses were transcribed. Content analysis was used by four researchers who coded and discussed themes and reached consensus. Converging themes were confirmed using Atlas.ti software. Findings: Seven themes emerged from the mother–daughter dyad: communication (awkwardness, ambivalence, styles); control (being controlled vs. controlling); consequences (fertility, complications); planning (pregnancy, being healthy, life plan, RH); support; danger, risk, and safety; and stigma. Conclusion: Many mother–daughter dyads were not ready to discuss RH among themselves. Cultural and familial perspectives should be considered when providing care and preconception counseling to this population.

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Informal carers' experiences of caring for someone with Multiple Sclerosis: A photovoice investigation

Objectives: This study explores the lived experiences of carers of people with Multiple Sclerosis (MS), specifically in relation to their quality of life (QoL), through the use of images and narratives, with the aim of gaining a nuanced insight into the complex nature of QoL in the MS caregiving context.; Design: Real-time qualitative design using the photovoice method.; Methods: Twelve MS carers (aged 30-73 years) took photographs of objects/places/events that represented enhancement or compromise to their QoL and composed written narratives for each photograph based on their experiences of caregiving. In total, 126 photographs and their corresponding narratives were analysed using content analysis.; Results: Seven inter-related themes were identified. MS caregiving-related challenges, sense of loss (e.g., loss of activities), emotional impact (e.g., feeling lonely), urge to escape, and sense of anxiety over the unpredictability of MS carer role were discussed in relation to the negative experiences that compromised their QoL. The themes precious moments (e.g., time spent with loved ones or hobbies) and helpful support (e.g., family and pets) encompassed participants' positive experiences that enhanced their QoL.; Conclusions: Findings demonstrated the multi-faceted and complex nature of MS caregiver's QoL and highlighted that although the experiences of MS carers were mostly negative, there were also some positive aspects to caregiving, that helped enhance carers' QoL by ameliorating these negative experiences. These findings can be used to inform support programmes and enhance service provision for MS carers. 

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Patient and caregiver characteristics associated with caregiver burden in Parkinson’s disease: a palliative care approach

Background: Parkinson’s disease (PD) is a neurodegenerative disorder associated with caregiver burden. Higher rates of burden are associated with adverse outcomes for caregivers and patients. Our aim was to understand patient and caregiver predictors of caregiver burden in PD from a palliative care approach. Methods: We conducted a cross-sectional analysis of baseline data from PD patients and caregivers in a randomized trial of outpatient palliative care at three study sites: University of Colorado, University of Alberta, and University of California San Francisco. The primary outcome measure of caregiver burden, the Zarit Burden Interview (ZBI), was compared against the following patient and caregiver variables: site of care, age, disease/caretaking duration, presence of atypical parkinsonism, race, income, education level, deep brain stimulation status, the Unified Parkinson’s Disease Rating Scale (UPDRS) and Edmonton Symptom Assessment System Revised: Parkinson Disease (ESAS) for symptom severity and burden, the Montreal Cognitive Assessment (MoCA) for cognitive function, Quality of Life in Alzheimer’s Disease (QOL-AD) scale for patient and caregiver perspectives on patient general quality of life, Parkinson’s Disease Questionnaire 39 (PDQ-39) scale for health-related quality of life, Hospital Anxiety and Depression Scale (HADS) for patient and caregiver mood, Prolonged Grief Questionnaire, Functional Assessment of Chronic Illness Therapy- Spiritual Well-Being (FACIT-SP) of patient and caregiver, and Palliative Performance Scale for functional status. A stepwise multivariate linear regression model was used to determine associations with ZBI. Results: A total of 175 patients (70.9% male; average age 70.7±8.1 years; average disease duration 117.2±82.6 months), and 175 caregivers (73.1% female; average age 66.1±11.1 years) were included. Patient spiritual well-being (FACIT-SP Faith subscale, r 2 =0.024, P=0.0380), patient health-related quality of life (PDQ-39, r 2 =0.161, P 2 =0.062, P=0.0014), caregiver anxiety (HADS Anxiety, r 2 =0.077, P=0.0002), and caregiver perspective on patient quality of life (QOL-AD Caregiver Perspective, r 2 =0.088, P Conclusions: Patient and caregiver factors contribute to caregiver burden in persons living with PD. These results suggest targets for future interventions to improve caregiver support.

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Using an Electronic App to Promote Home-Based Self-Care in Older Patients With Heart Failure: Qualitative Study on Patient and Informal Caregiver Challenges

Background: Heart failure (HF) affects many older individuals in North America, with recurrent hospitalizations despite postdischarge strategies to prevent readmission. Proper HF self-care can potentially lead to better clinical outcomes, yet many older patients find self-care challenging. Mobile health (mHealth) apps can provide support to patients with respect to HF self-care. However, many mHealth apps are not designed to consider potential patient barriers, such as literacy, numeracy, and cognitive impairment, leading to challenges for older patients. We previously demonstrated that a paper-based standardized diuretic decision support tool (SDDST) with daily weights and adjustment of diuretic dose led to improved self-care.; Objective: The aim of this study is to better understand the self-care challenges that older patients with HF and their informal care providers (CPs) face on a daily basis, leading to the conversion of the SDDST into a user-centered mHealth app.; Methods: We recruited 14 patients (male: 8/14, 57%) with a confirmed diagnosis of HF, aged ≥60 years, and 7 CPs from the HF clinic and the cardiology ward at the Hamilton General Hospital. Patients were categorized into 3 groups based on the self-care heart failure index: patients with adequate self-care, patients with inadequate self-care without a CP, or patients with inadequate self-care with a CP. We conducted semistructured interviews with patients and their CPs using persona-scenarios. Interviews were transcribed verbatim and analyzed for emerging themes using an inductive approach.; Results: Six themes were identified: usability of technology, communication, app customization, complexity of self-care, usefulness of HF-related information, and long-term use and cost. Many of the challenges patients and CPs reported involved their unfamiliarity with technology and the lack of incentive for its use. However, participants were supportive and more likely to actively use the HF app when informed of the intervention's inclusion of volunteer and nurse assistance.; Conclusions: Patients with varying self-care adequacy levels were willing to use an mHealth app if it was simple in its functionality and user interface. To promote the adoption and usability of these tools, patients confirmed the need for researchers to engage with end users before developing an app. Findings from this study can be used to help inform the design of an mHealth app to ensure that it is adapted for the needs of older individuals with HF. 

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The Spirituality in Caregivers and Families With Chronic Patients: Psychometric of Caregiver's Spiritual Empowering Scale

Objectives: High tension is the leading cause of the increased risk of mortality among family caregivers (FCGs), resulting in inadequate care and abandonment of the patient. Spirituality promotion is a sense of mastery and control and strength to endure the stressors of illness. To the best of our knowledge, no tool is available for investigating the current spiritual state of the FCG and identifying the need for spiritual intervention in Iran. Therefore, the present study aimed to identify the level of independence of patients with chronic disease and to explore the concept of spirituality and psychometric of related scale, namely, caregiver's spiritual empowering scale (CSES). Materials and Methods: This study used a multiphase mixed-method approach and was conducted from June 2016 to August 2018 in the southwestern region of Iran. The cross-sectional surveys of activities of daily living (ADL) and instrumental activities of daily living (IADL) were conducted on people with chronic diseases (n = 389) in the first phase. In the second phase, the exploratory sequential mixed method was applied for content analysis study (n = 26) and psychometric of CSES in FCG (n = 395). Results: The caregivers' age was within the range of 17-74 years (42 Mean +/- 12SD). Based on the results of ADL IADL, 87% and 99.5% of patients were dependent or in need of help. In the qualitative study phase, four main categories emerged in the context of "Empowering spirituality". The reliability and validity of CSES including 12 items loaded one a single factor were confirmed based on the content validity ratio >0.45, content validity index >0.78, kappa coefficient >0.75, impact score >1.5, alpha = 0.92, interclass correlation coefficient = 0.91, 95% CI = 0.90-0.92, r = 0.57, P = 0.000, standard error of the mean = 1.64, and Kaiser-Meyer-Olkin index = 94, P < 0.001. Conclusions: In general, spiritual empowerment is essential as a low-cost and effective method in increasing the dependence of people with chronic diseases and the risk of burnout in FCG. Accordingly, the CSES is considered a valid and reliable instrument for measuring the status of empowerment spirituality in informal caregivers and the effectiveness of interventions.

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Randomized Controlled Trial of the Caregiver Orientation for Mobilizing Personal Assets and Strengths for Self-Care (COMPASS) for Caregiving Journey: A National Family Caregiver Support Program in a Long-Term Care Insurance System

Objectives: To investigate the effects of a national support program on family caregivers for long-term care (LTC) recipients. Design: A single-blinded randomized controlled trial compared the 8-week Caregiver Orientation for Mobilizing Personal Assets and Strengths for Self-Care (COMPASS) program consisting of 6 individual inhome, 3 group support, and 2 telephone sessions with a multicomponent intervention, and a control group. Setting and Participants: In total, 969 caregivers who were living with LTC recipients assessed as having a high caregiving burden in 12 Korean cities. Measures: The primary outcomes were depression, burden, and stress levels of caregivers, the secondary outcomes were caregiver self-efficacy, positive aspects of caregiving, social support, social activities, and health risk behaviors. These outcomes were measured at baseline and after the 8-week program, analyzed using modified intention-to-treat, per-protocol (PP), and non-PP analyses. Results: The modified intention-to-treat analysis revealed significant improvements in burden (effect size, = 0.010, P =.008), depression (h2p = 0.012, P = .003), and health risk behaviors (h2p = 0.010, P =.012) for the experimental group compared with the control group. However, there were no significant differences between the 2 groups in improving stress (P =.997), social support (P =.234), or social activities (P =.816). The PP analysis indicated that the COMPASS program was successful in increasing positive aspects of caregiving (h2p = 0.013, P =.004) and self-efficacy (h2p = 0.010, P =.032) compared with the control group. Conclusions and Implications: The COMPASS program was effective in family caregivers of LTC recipients in critical aspects of physical and psychological outcomes, especially in demonstrating the important role of participating in group support sessions. It is feasible for the program to become a formal national support program as part of the national insurance system in Republic of Korea. (C) 2020 AMDA - The Society for Post-Acute and Long-Term Care Medicine.

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Quality of life of family caregivers of patients with a stoma: a cross-sectional study from Iran

Aim: The family plays a key role in supporting and caring for patients who have a gastrointestinal stoma because of cancer. This study investigated the quality of life of family members caring for such patients. Methods: A descriptive study was conducted in 2020 in Iran. The study sample consisted of 250 family members caring for cancer patients with an intestinal stoma. The Caregiver Quality of Life Index–Cancer scale was used to measure quality of life. This scale has 35 questions, which are categorised into four subscales: mental/ emotional burden; lifestyle disruption; positive adaptation; and financial concerns. The highest possible total score is 140 (35 in each subscale), and a high score indicates a poor quality of life. Results: A total of 250 carers took part in the study. Of these, 143 (57.2%) were men and the average age was 35.1 years. Mean scores of mental/emotional burden, lifestyle disruption, positive adaptation, and financial concerns were 28.4±41, 17.3±3.2, 19.8±28, and 8.6±1.2 respectively. No significant relationship was found between participants’ quality of life and demographic variables. Conclusion: Carers’ quality of life is relatively poor. Carers’ quality of life need to be improved and support programmes, devised and delivered by nurses, could have a role in this. 

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Psychometric properties of the Korean version of the positive aspects of caregiving scale for family caregivers of people with amyotrophic lateral sclerosis

Objective: Many caregivers report finding positive meanings in their caregiving roles and activities. The positive aspects of caregiving (PAC) scale was designed to measure positive appraisals of caregiving. This study assessed the reliability and validity of the Korean version of the PAC for family caregivers of people with amyotrophic lateral sclerosis (ALS).; Method: The instrument's content and semantic equivalence were established using translation and back translation of the PAC. A convenience sample of 127 family caregivers of patients with ALS in Korea was recruited. Content, construct, and convergent validity of the Korean PAC were evaluated. Cronbach's α was used to assess reliability. This study used secondary data; the primary study received approval from the Institutional Review Board of H Hospital, from where data were collected. The consent forms did not mention the future use of data. Therefore, we have applied for approval regarding this study's protocol and exemption from informed consent.; Results: The Cronbach's α was 0.92, and internal consistency was acceptable. Exploratory factor analysis supported the construct validity with a two-factor solution explaining 74.73% of the total variance. Regarding convergent validity, the Korean PAC score negatively correlated with caregiver burden and depression and positively with self-rated health status. We were unable to evaluate the suitability of the suggested structural dimensionality through confirmatory factor analysis. Furthermore, as we used secondary data, we could not assess retest reliability for the evaluation of the scale's stability.; Significance of Results: The Korean PAC was found to be an applicable instrument with satisfactory reliability and validity and suitable for further use as a measure for positive appraisals of caregiving for family caregivers of people with ALS. It may be effective for measuring caregivers' psychological resources.

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The presence of a caregiver is associated with patient outcomes in patients with Parkinson's disease and atypical parkinsonisms

Introduction: Approximately 88% of men and 79% of women with Parkinson's disease (PD) identify an informal caregiver. Although caregivers can play a key role in supporting patients, little is known about how and whether PD patients with and without caregivers differ in terms of physical, cognitive, and mood outcomes. This study explored whether caregiver presence was associated with variations in patient presentation and outcomes in a palliative PD and atypical PD population. Methods: Secondary data on individuals with PD and their caregivers came from baseline data of a 3-site randomized controlled trial of outpatient palliative care for PD in the US and Canada. Measures included: MDS UPDRS III, Montreal Cognitive Assessment, quality of life (QOL) measures, depression, prolonged grief, spirituality (FACIT SP-12) and Palliative Performance Scale. Results: Of 210 participants, 175 (83%) had a caregiver. Patients with caregivers had greater motor difficulty, lower cognitive scores, and greater palliative needs as measured by the Palliative Performance Scale. Despite poorer cognitive and motor function, those with caregivers had higher QOL as measured by the Quality of Life in Alzheimer Disease and less spiritual distress. There were no group differences on anxiety, depression, or grief. Caregiver presence moderated the association between lower MoCA score and worse motor symptoms. Conclusion: Findings of the present study highlight the influence of caregiver engagement on PD patient outcomes. These findings have implications for clinical practice and suggest that presence of a caregiver may be an important modifying variable on patient outcomes to examine in future research.

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The Mediator Effects of Depressive Symptoms on the Relationship between Family Functioning and Quality of Life in Caregivers of Patients with Heart Failure

• Heart failure caregiver depressive symptoms predict caregiver quality of life. • Family functioning predict heart failure caregiver quality of life. • Depressive symptoms are a mediator between family functioning and quality of life. Caregivers of patients with heart failure (HF) report depressive symptoms and poor quality of life (QOL) related to caregiving and poor family functioning, placing them at risk for poor health.

The purpose of this study was to examine the effect of depressive symptoms on the relationship between family functioning and quality of life in the HF caregiver. A sample of 92 HF caregivers were enrolled from an ambulatory clinic at a large academic medical center. A mediation analysis was used to analyze data obtained from the Family Assessment Device (FAD), the Patient Health Questionaire-9 (PHQ-9), and the Short Form-12 Health Survey Version 2 (SF-12v2). Depressive symptoms were found to be a significant mediator in the relationship between family functioning and caregiver quality of life. The results of this study suggest that interventions targeting caregiver depression and family functioning could be effective in enhancing HF caregivers' physical and mental QOL.

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Measuring family caregivers' experience of interprofessional care for patients and families: development of the Japanese version of the Caregivers' Experience Instrument

Background: Improving individuals' experience of care is now a critical goal of health care systems. Although a number of instruments have been developed to measure experience of care, few instruments measure family caregivers' experience of interprofessional care for patients and families.Objective: To develop the Japanese version of the Caregivers' Experience Instrument (J-IEXPAC CAREGIVERS) and to investigate its validity in assessing quality of integrated care for both patients with chronic conditions and their family caregivers, from the caregivers' perspective, in Japan. Methods: We used a cross-sectional questionnaire survey to test the validity and internal consistency of J-IEXPAC CAREGIVERS. Four hundred family caregivers were recruited in three municipalities. We evaluated the feasibility, structural validity, internal consistency and hypothesis testing for construct validity of the scale. Results: A total of 274 (68.5%) questionnaires were analysed. Confirmatory factor analysis showed acceptable model fit for the hypothesized two-factor model according to fit indices, as identified for the original version: attention for the patient and attention for the caregiver. Cronbach's alpha for score in J-IEXPAC CAREGIVERS with 12 items was high (0.92). Spearman's rank correlation coefficient between overall caregiver satisfaction and J-IEXPAC CAREGIVERS score was 0.71. Family caregivers who experienced home-visit services had significantly (P = 0.001) higher total scores than those who did not. Conclusions: This pilot study showed that the J-IEXPAC CAREGIVERS is valid and reliable. This scale can be useful for evaluating quality of integrated care, with focus on family caregivers and patients with chronic conditions in Japan.

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Meaning of empowerment in peritoneal dialysis: focus groups with patients and caregivers

Background. While peritoneal dialysis (PD) can offer patients more independence and flexibility compared with in-center hemodialysis, managing the ongoing and technically demanding regimen can impose a burden on patients and caregivers. Patient empowerment can strengthen capacity for self-management and improve treatment outcomes. We aimed to describe patients' and caregivers' perspectives on the meaning and role of patient empowerment in PD. Methods. Adult patients receiving PD (n = 81) and their caregivers (n = 45), purposively sampled from nine dialysis units Australia, Hong Kong and the USA, participated in 14 focus groups. Transcripts were thematically analyzed. Results. We identified six themes: lacking clarity for self-management (limited understanding of rationale behind necessary restrictions, muddled by conflicting information); PD regimen restricting flexibility and freedom (burden in budgeting time, confined to be close to home); strength with supportive relationships (gaining reassurance with practical assistance, comforted by considerate health professionals, supported by family and friends); defying constraints (reclaiming the day, undeterred by treatment, refusing to be defined by illness); regaining lost vitality (enabling physical functioning, restoring energy for life participation); and personal growth through adjustment (building resilience and enabling positive outlook, accepting the dialysis regimen). Conclusions. Understanding the rationale behind lifestyle restrictions, practical assistance and family support in managing PD promoted patient empowerment, whereas being constrained in time and capacity for life participation outside the home undermined it. Education, counseling and strategies to minimize the disruption and burden of PD may enhance satisfaction and outcomes in patients requiring PD.

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Living situation of family caregivers of persons with spinal cord injury

Objective: To describe the living situation of family caregivers of persons with spinal cord injury. Design: Cross-sectional questionnaire. Subjects: Primary family caregivers of persons with chronic spinal cord injury in Switzerland. Methods: Cross-sectional study of family caregivers of persons with spinal cord injury. For comparison, the study population was matched to family care givers of persons dealing with long-term health condi tions in the general population, using a propensity score based algorithm. Results: A total of 717 family caregivers participated in the survey (35% response rate). Participants were mostly female (72%), mean age 57 years, and had spent approximately 13 years caring for their relative. A mean of 21 h/week was spent providing care and assistance. The vast majority of family care givers reported coping well with their situation. However, support from public services was deemed inadequate. Compared with family caregivers in the general population, family caregivers of persons with spinal cord injury performed more caring tasks and reported a slightly lower quality of life. Conclusion: Family caregivers of persons with spinal cord injury are self-reliant to cope with their situation, but report discontent with public support services. The healthcare system could provide alternative support measures, such as direct financial compensation.

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Knowledge and Behaviors Toward Health Care for Elderly Patients with Hypertension, and Quality of Life Among Informal Caregivers in Northern Thailand

Background: Informal caregivers play an important role in caring for patients with chronic conditions. Little is known about the quality of life among caregivers of patients with chronic illnesses in Thailand. The purpose of this study was to investigate the relationships among knowledge and behaviors toward health care for elderly patients with hypertension, and the quality of life among informal caregivers. Methods: A total of 402 informal caregivers for their elderly co-habitants suffering from hypertension were randomly selected to participate in this cross-sectional study. Data collection was performed in rural areas of Phayao province, located in the northern part of Thailand. Self-administered questionnaires were employed, which covered knowledge and behaviors toward health care for elderly patients with hypertension, and the Thai version of the World Health Organization Quality of Life Brief Version (WHOQOL-BREF) questionnaire. Results: The scores of knowledge and behaviors toward health care for elderly patients with hypertension, and the quality of life were at low and fair levels. In the multivariable linear regression model, the results showed that four variables - age, caregiver's relationship to the patient, knowledge, and behaviors toward health care for elderly patients with hypertension - were significantly related to quality of life among caregivers (p < 0.05). Conclusion: Knowledge and behaviors toward health care for hypertensive patients influence the quality of life among informal caregivers. The caregivers in rural communities should be encouraged to become educated on the stages of hypertension, preparation for taking care of the elderly with high blood pressure, and effective behavioral care for patients, in order to improve the quality of life of both caregiver and patient. In addition, health care providers should have clear guidelines for development of the health care system to enhance the potential care and quality of life among informal caregivers.

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Key Activities of Caregivers for Individuals With Parkinson Disease: A Secondary Analysis

BACKGROUND: Individuals with Parkinson disease (PD) require support from family caregivers because of decreased functional levels in a later stage. Much of the research with PD caregivers has been limited by relatively homogenous samples of primarily White and largely spousal caregivers. METHODS: This secondary analysis aimed to describe a national sample of caregivers of individuals with PD in the Caregiving in the U.S. 2015 data set and their activities, including activities of daily living (ADLs), instrumental ADLs (IADLs), and key activities they performed for individuals with PD. RESULTS: Fifty-four caregivers (32 women) were included. The mean (SD) age was 57.7 (16.9) years, and the sample included 57% White, 9% Black, 15% Asian, and 17% Hispanic caregivers. Relationships to care recipient were 32% spouses, 20% mothers, and 11% fathers, with the remaining being a variety of relationships. The number of ADLs and IADLs performed by the caregiver was 2.85 (SD, 2.18) and 4.72 (SD, 2.08), respectively. The most frequent ADLs were getting in and out of beds and chairs, getting dressed, getting to and from the toilet, and bathing/showering. The most frequent IADLs were transportation, shopping, managing finances, giving medicine, preparing meals, and housework. CONCLUSION: This study shows the number of ADLs and IADLs performed by a diverse group of PD caregivers and indicates the need to acknowledge the extensive work performed by caregivers.

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Is informal caregiving at odds with optimal health behaviour? A cross-sectional analysis in the caregiving partners of persons with spinal cord injury

Background: The intricate relationship between caregiving and health may to some extent be determined by the burden and restrictions imposed on informal caregivers, and the impact these experiences have on health behaviours. It is assumed that a positive caregiver experience leads to health promoting behaviours in caregivers, whereas a negative experience induces the opposite. The objective of this study is to test these assumptions and to investigate the association between the caregiver experience and health behaviours in the caregiving partners of persons with severe physical impairment, due to spinal cord injury. Methods: Cross-sectional survey data from 133 couples of caregiving partners and persons with spinal cord injury living in Switzerland was used. We employed multivariable regression to evaluate the associations of the caregiver experience (objective and subjective caregiver burden, and satisfaction with caregiving) with health behaviours (physical activity, fruit and vegetable consumption, alcohol consumption, smoking, and sleep duration). Results: The most robust associations were found between subjective caregiver burden and health behaviours, whereby caregivers reporting a higher burden reported less physical activity (Incidence Rate Ratio [IRR]:0.41; 95% CI 0.35-0.49), more alcohol consumption (IRR: 1.46; 1.20-1.77), greater smoking intensity (IRR: 1.29; 0.95-1.73), and a higher likelihood of insufficient sleep duration (Odds Ratio [OR]: 4.98; 1.58-15.74). Caregivers, who reported high objective burden, i.e. invested long hours in caregiving, were more prone to partake in health adverse behaviours, in particular greater alcohol consumption. Results also suggested that caregivers who were satisfied in their role and who received social support in caregiving were more likely to be physically active. Conclusion: Caregivers suffering from high emotional and time burden may benefit from both practical and psychological support. This support may release resources enabling individuals to partake in health promoting behaviours, or to develop coping strategies to better deal with the burden of caregiving.

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An integrative systematic review of creative arts interventions for older informal caregivers of people with neurological conditions

Objective We aimed to assess and synthesise the current state of quantitative and qualitative research concerning creative arts interventions for older informal caregivers of people with neurological conditions. Methods A systematic search was employed to identify studies that examined creative arts interventions for older informal caregivers, which were synthesised in this integrative review. We searched the following databases: MEDLINE, PubMed, EBSCO, CINAHL, EMBASE, PsycINFO, Cochrane Library, Scopus, Web of Science, and Google Scholar. We also backwards searched references of all relevant studies and inspected trials registers. Results Of the 516 studies identified, 17 were included: one was quantitative, nine were qualitative and seven used mixed methods. All included quantitative studies were pilot or feasibility studies employing pre- and post-test design with small sample sizes. Studies varied in relation to the type of creative intervention and evaluation methods, which precluded meta-analysis. Large effect sizes were detected in wellbeing measures following singing and art interventions. The qualitative synthesis highlighted that interventions created space for caregivers to make sense of, accept and adapt to their identity as a caregiver. Personal developments, such as learning new skills, were viewed positively by caregivers as well as welcoming the opportunity to gain cognitive and behavioural skills, and having opportunities to unload emotions in a safe space were important to caregivers. Group creative interventions were particularly helpful in creating social connections with their care-recipients and other caregivers. Conclusions The current review revealed all creative interventions focused on caregivers of people living with dementia; subsequently, this identified gaps in the evidence of creative interventions for informal caregivers of other neurological conditions. There are encouraging preliminary data on music and art interventions, however, little data exists on other art forms, e.g., drama, dance. Creative interventions may appeal to many caregivers, offering a range of psycho-social benefits. The findings of the current review open the way for future research to develop appropriate and creative arts programmes and to test their efficacy with robust tools.

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Individual quality of life in spousal ALS patient-caregiver dyads

Background: Quality of life is a basic goal of health and social care. The majority of people with Amyotrophic Lateral Sclerosis (ALS) are cared for at home by family caregivers. It is important to recognize the factors that contribute to quality of life for individuals to better understand the lived experiences in a condition for which there is currently no curative treatment. Aim: To explore individual quality of life of people with ALS and their informal caregivers over time. Methods: Over three semi-structured home interviews, 28 patient-caregiver dyads provided information on a range of demographic and clinical features, psychological distress, caregiver burden, and individual quality of life. Quality of life data were analysed using quantitative and qualitative methods with integration at the analysis and interpretation phases. Results: Individual Quality of Life was high for patients and caregivers across the interviews series, and higher among patients than their care partners at each time point. Family, hobbies and social activities were the main self-defined contributors to quality of life. The importance of health declined relative to other areas over time. Friends and finances became less important for patients, but were assigned greater importance by caregivers across the illness trajectory. Psychological distress was higher among caregivers. Caregiver burden consistently increased. Conclusion: The findings from this study point to the importance of exploring and monitoring quality of life at an individual level. Self-defined contributory factors are relevant to the individual within his/her context. As an integrated outcome measure individual quality of life should be assessed and monitored as part of routine clinical care during the clinical encounter. This can facilitate conversations between health care providers, patients and families, and inform interventions and contribute to decision support mechanisms. The ascertainment of self-defined life quality, especially in progressive neurodegenerative conditions, mean health care professionals are in a better position to provide person-centred care.

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Impact of Supporting People with Advanced Parkinson's Disease on Carer's Quality of Life and Burden

Purpose: The aim of this study was to assess the burden and the quality of life (QoL) perceived by caregivers assisting advanced Parkinson's disease (PD) patients.; Patients and Methods: Consecutive advanced PD patients treated with levodopa/carbidopa intestinal gel (LCIG) or continuous subcutaneous apomorphine infusion (CSAI) or care as usual (CU) and their care partners were recruited during routine visits according to a cross-sectional design. Caregiver's distress was assessed by Zarit Burden Interview (ZBI) and a QoL survey to evaluate and understand the burden experienced by care partners during family and working activities.; Results: A total of 126 patients (53 LCIG, 19 CSAI and 54 CU) and their care partners were enrolled. The ZBI score boxplot showed that LCIG and CU populations have a similar distribution (ZBI inter-quartile range [IQR] values respectively 18-42 for LCIG and 19-43 for CU group), while the CSAI group has a wider score range (IQR 16-52). Caregivers assisting patients in treatment with LCIG have more time to perform family or household duties (p=0.0022), or to engage in leisure activities (p=0.0073) compared to CU, while no difference was found when compared to CSAI group. Approximately 50% of the care partners showed mood changes in the last 6 months and LCIG and CSAI had less impact on caregiver's mood compared to CU. Patients treated with LCIG were more independent in taking a bath or shower without assistance and were more able to move and walk without assistance.; Conclusion: Care partners of advanced PD patients treated with device-aided therapies have more time for their own life and a better perception of their QoL with a tendency to an improvement of mood compared with those of patients treated with CU. 

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Home Oxygen Therapy

This article is part of a series, Supporting Family Caregivers:No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home. Nurses should read the articles first, so they understand how best to help family caregivers. Then they can refer caregivers to the informational tear sheet-Information for Family Caregivers-and instructional videos, encouraging them to ask questions. For additional information, see Resources for Nurses.

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Family cohesion is differently associated with felt stigma depending on enacted stigma in adults with epilepsy

Purpose: There have been little researches examining the role of family functioning on psychological outcomes in the field of adult epilepsy. We determined whether family functioning is correlated with felt stigma in adults with epilepsy. Methods: In this cross-sectional study, adults with epilepsy and their caregivers were recruited. Data were collected using the Family Adaptability and Cohesion Evaluation Scale (FACES) Ill, the Family adaptation, partnership, growth, affection, and resolve (APGAR) questionnaire, the Stigma Scale for Epilepsy (SS-E), the modified questionnaire for episodes of discrimination, and the Beck Depression Inventory. Family functioning was measured by the caregivers. Results: A total of 273 adult patients and their primary caregivers were included. Multivariate logistic analyses showed that family cohesion and excellent family functioning were negatively correlated with felt stigma after controlling for confounding variables. Enacted stigma, depressive symptoms, and university education were also significant. Interaction between enacted stigma and family cohesion on felt stigma was significant (p = 0.049). Family cohesion was negatively correlated with felt stigma only in the patients with enacted stigma (p = 0.011). Conclusions: Family functioning especially family cohesion may have protective effects against development of felt stigma in adults with epilepsy. Such protecting effects against felt stigma may be different according to enacted stigma. This understanding is helpful for developing effective psychosocial interventions to reduce felt stigma in patients with epilepsy. 

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Family caregivers' perceived communication self-efficacy with physicians

Objective: Family-centered health care requires successful communication between patient, family caregivers, and healthcare providers. Among all providers, physicians are most likely to interact with caregivers. Using the Family Caregiver Communication Typology, this study examined perceived communication self-efficacy with physicians among four types of caregivers: Manager, Partner, Carrier, and Lone.; Method: A cross-sectional online survey included the Family Communication Typology Tool, Communication Perceived Self-Efficacy Scale, the Caregiver Quality of Life-Revised Index, and the Generalized Anxiety Disorder (GAD-2) questionnaire.; Results: An online survey of 220 family caregivers currently caring for an adult family member revealed significant differences in communication self-efficacy among family caregiver communication types, revealing that Partner caregivers have the highest perceived communication self-efficacy, and that for some caregiver types, higher perceived communication self-efficacy is associated with certain quality of life dimensions.; Significance of Results: Differences in communication self-efficacy with physicians among the four caregiver communication types (Manager, Partner, Carrier, and Lone) provide further evidence that the typology represents variance in caregiver communication abilities. Development of future medical curricula targeting communication skill training should include an overview of the typology and communication strategies as these may increase effective communication between physicians and caregivers.

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Family Caregivers of Veterans Experience High Levels of Burden, Distress, and Financial Strain

BACKGROUND/OBJECTIVES: To describe the caregiving experiences and physical and emotional needs of family members and friends who provide care to veterans with mental, physical, and cognitive comorbidities. DESIGN: Cross‐sectional study. SETTING: National telephone surveys administered from 2017 to 2019. PARTICIPANTS: Family caregivers of veterans enrolled in the Veterans Affairs (VA) Program of General Caregiver Support Services between October 2016 and July 2018 who responded to a telephone survey (N = 1,509; response rate = 39%). MEASUREMENTS: We examined caregiver burden, depressive symptoms, financial strain, satisfaction with care, amount and duration of caregiving, life chaos, loneliness, and integration of caregiver with the healthcare team using validated instruments. We also collected caregiver demographic and socioeconomic characteristics and asked caregivers to identify the veteran's condition(s) and provide an assessment of the veteran's functioning. RESULTS: Average caregiver age was 62.2 (standard deviation [SD] = 13.7) and 69.8 (SD = 15.6) for veterans. Among caregivers, 76.7% identified at White, and 79.9% were married to the veteran. Caregivers reported having provided care for an average of 6.4 years and spending on average 9.6 hours per day and 6.6 days per week providing care. Average Zarit Subjective Burden score was 21.8 (SD = 9.4; range = 0–47), which is well above the cutoff for clinically significant burden (>16). Caregivers reported high levels of depressive symptoms; the sample average Center for Epidemiologic Studies Depression 10‐item Scale score was 11.5 (SD = 7.1; range = 0–30). Caregivers also reported high levels of loneliness and financial strain. CONCLUSION: Caregivers who care for veterans with trauma‐based comorbidities reported intensive caregiving and significant levels of distress, depressive symptoms, and other negative consequences. These caregivers require comprehensive support services including access to health care, financial assistance, and enhanced respite care. Planned expansion of VA caregiver support has the potential to provide positive benefits for this population and serve as a model for caregiver support programs outside the VA health care system.

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Family caregivers' burden in inflammatory bowel diseases: An integrative review

Inflammatory bowel disease (IBD), including Crohn's and ulcerative colitis diseases, is characterized by clinical periods of remission and relapse. Excessive care stress can have long-term negative physical and psychological consequences not only for caregivers but also for the recipients of care. This integrative review aims to identify, describe, and synthesize the results of current available research focused on the burdens of IBDs on family caregiver. An integrative review was performed using Whittemore and Knafl methodology. A systematic search of electronic databases including Web of Science, PubMed, Embase, and Scopus from January 2000 to October 2019 was conducted. Articles were included if published in English and focus on IBD burden on family caregivers. Of 730 records, 16 articles with quantitative, qualitative, and Q methodology study designs were eventually included in the review. The synthesis of these articles led to the identification of four key types of effects: biopsychosocial, daily life activities, physical health, and financial. The chronic and relapsing nature of IBD exposes family caregivers to considerable risk. Thus, the care burden of IBD patients' caregivers needs to be evaluated continuously and relieved through family-centered interventions.

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Family caregiver's burden and the social support for older patients undergoing peritoneal dialysis

SUMMARY: Background: Most elderly people undergoing peritoneal dialysis (PD) treatment have a high incidence of frailty, cognitive impairment and emotional disturbance leading to a significant impact on families. The burden experienced by the family caregivers could affect their physical and emotion health. The objective of this study was to examine the level of burden on family caregivers of elderly adults receiving PD and to identify any contributing factors. Materials and Methods: This was a cross‐sectional study employing convenience sampling. Patient–caregiver dyads were recruited from the outpatient clinic of a university hospital in China in 2019. Caregivers provided information on their perceived burden and health‐related quality of life. The elderly patients reported their functional dependence and depressive symptoms in the same interview. Linear regression analyses were used to determine the factors contributing to caregivers' burden. Results: Sixty patient–caregiver dyads were recruited. The patients had a mean age of 70.7 ± 7.4 years. The caregivers reported moderate levels of burden having ZBI score of 30.5 ± 15.9. Multivariate analyses showed that being female, perceiving one's financial status as insufficient, a low level of social support for the caregiver, depressive symptoms in the patients and disability in carrying out the instrumental activities of daily life were statistically significant predictors of caregiver burden (adjusted R2 = 0.46, p < 0.001). Conclusion: Elderly adults receiving PD who experience physical dependence and depressive symptoms are a burden for caregivers. In response to this challenge, interventions designed with the goal of supporting the emotional and mental wellbeing of caregivers are warranted.

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Factors Influencing Health-Related Quality of Life of Patients with Multiple Sclerosis and Their Caregivers

Background: Only a few studies have been done focusing on the quality of life (QoL) of patients with multiple sclerosis (MS) as well as their family members. The aim of our research was to determine the factors that influence the QoL of MS patients in advanced stage of disease and their caregivers. Methods: The sample of the cross-sectional study included 153 patients with MS and 74 caregivers. QoL was measured using the PNDQoL questionnaire (Progressive Neurological Diseases Quality of Life), and the severity of illness was assessed through the following scales: EDSS (Expanded Disability Status scale), PPS (Palliative Performance Scale), and ADL (Activity Daily Living). Results: The following predictors of the global QoL of the MS patients were identified - age, EDSS, symptom burden, daily care, emotional functioning, and spiritual_nonreligion functioning (R-2 = 0.569;F= 32.900;p< 0.001). The following predictors of the global QoL of caregivers were identified - age, emotional functioning, spiritual_nonreligion functioning, patient's QoL, and feeling of care (R-2 = 0.431;F= 18.690;p< 0.001). Conclusion: Appropriate intervention should be directed particularly at older patients and caregivers who have faced the disease for longer time and at patients without any partner. Supporting the emotional and social well-being and mitigating the burden caused by symptoms of the patients as well as caregivers can improve the QoL of both groups.

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End of life care for long-term neurological conditions: A meta-ethnographic review of the experiences of informal carers

Background: Family and friends are key providers of care for people living with a long-term neurological condition. Neurological conditions are a significant global contributor to disability and premature death. However, previous research suggests carers often struggle to access appropriate support at end of life.; Aims: This review sought to synthesise qualitative studies discussing end-of-life and palliative issues for informal carers supporting people living with neurological conditions.; Design: This was a meta-ethnographic synthesis of 38 qualitative studies discussing end-of-life and palliative issues for informal carers supporting people living with long-term neurological conditions.; Data Sources: Qualitative articles published after January 2010 in English, addressing carers of people with long-term neurological conditions with regard to palliative care, end of life and/or bereavement. Papers were excluded if it was not possible to separately assess the views of carers. Quality appraisal was not undertaken, but consideration was given to research context.; Results: Across the papers, five key themes were identified: the future (un)certainties in the progression of life-limiting neurological conditions; an information paradox of not receiving the right information at the right time; access to support; carers' roles in decision making around end of life; and maintaining continuity while facing change and disruption in day-to-day living.; Conclusions: Given the broad agreement on the challenges faced by carers of people living with long-term neurological conditions, future research should consider opportunities to improve information and support for this group, and the development and evaluation of practical models of service delivery.

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The effects of the Fordyce's 14 fundamentals for happiness program on happiness and caregiver burden among the family caregivers of patients with epilepsy: A randomized controlled trial

Background: Caregiving to patients with epilepsy (PWE) is often very stressful for family caregivers and puts a heavy caregiver burden (CB) on them. The aim of this study was to evaluate the effects of Fordyce's fourteen Fundamentals for Happiness Program on happiness and CB among the family caregivers of PWE. Methods: This randomized controlled trial was conducted on seventy family caregivers of PWE. Participants were purposively recruited from the Comprehensive Health Center in Shahrekord, Iran, and randomly allocated to either an intervention or a control group. Participants in the control group received conventional health-related educations in four one-hour group sessions, while participants in the intervention group received the Fordyce's fourteen Fundamentals for Happiness Program in eight one-hour group sessions. Happiness and CB in both groups were assessed at three time points, namely before, immediately after, and two months after the intervention. Data were analyzed using the SPSS program (v. 18.0). Findings: There were no significant differences between the control and the intervention groups regarding participants' demographic characteristics and their pretest mean scores of happiness and CB (P > 0.05). The mean scores of happiness and CB in the control group did not significantly change (P > 0.05), while the mean score of happiness significantly increased and the mean score of CB significantly decreased in the intervention group across the three measurement time points (P < 0.05). Consequently, the mean score of happiness in the intervention group was significantly greater than the control group and the mean score of CB in the intervention group was significantly less than the control group at both posttests (P < 0.01). Conclusion: The Fordyce's fourteen Fundamentals for Happiness Program is effective in significantly increasing happiness and reducing CB among the family caregivers of PWE. Healthcare providers and policy makers can use this program to reduce problems among these family caregivers.

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Education Experiences of Adult Subjects and Caregivers for Mechanical Insufflation-Exsufflation at Home

BACKGROUND: In 2014, the Ministry of Health of Ontario, Canada, approved a program of public funding for specialist-prescribed mechanical insufflation-exsufflation (MI-E) devices for home use by individuals with neuromuscular respiratory insufficiency. Since 2014, 1,926 MI-E devices have been provided, exceeding device-use projections. Few studies describe the initial and ongoing education and support needs of home MI-E users and their family caregivers. This study aimed to explore the requirements of initial and ongoing education and support for MI-E device use, user confidence, and barriers and facilitators to home MI-E. METHODS: We conducted semi-structured interviews with new (< 6 months) and established (6-48 months) MI-E users and family caregivers. Device users rated their confidence on a numeric rating scale of 1 (not confident) to 10 (very confident). RESULTS: We recruited 14 new and 14 established MI-E users and caregivers (including 9 dyads), and we conducted 28 interviews. Both new and established users were highly confident in use of MI-E (mean +/- SD scores were 8.8 +/- 1.2 and 8.3 +/- 2.1, respectively). Overall, the subjects were satisfied with their initial education, which consisted of a 1-2 h one-on-one session at home or in the clinic with a device demonstration and hands-on practice. Subjects viewed hands-on practice and teaching of caregivers as more beneficial than written materials. Ongoing support for device use was variable. Most subjects indicated a lack of specific follow-up, which resulted in uncertainty about whether they were using the MI-E device correctly or whether MI-E was effective. Facilitators to device utilization were ease of use, initial training, support from formal or informal caregivers, and symptom relief. Barriers were inadequate education on MI-E purpose, technique, and benefit; lack of follow-up; and inadequate knowledge of MI-E by nonspecialist health providers. CONCLUSIONS: The current model of home M1-E education at initiation meets user and caregiver needs. Better ongoing education and follow-up are needed to sustain the benefits through assessment of MI-E technique and its effectiveness.

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Differentiating needs of informal caregivers of individuals with ALS across the caregiving course: a systematic review

Background: Informal caregivers of people with amyotrophic lateral sclerosis (ALS) experience a range of needs across the course of the disease. For the provision of adequate support, an examination of the empirical evidence is necessary.; Aim: The purpose of the systematic review was to synthesize evidence of needs of informal caregivers of people with ALS at different stages of caregiving.; Method: Systematic review of empirical research on needs of ALS informal caregivers in both English and German, from January 2000 to August 2018. We searched the databases EMBASE, MEDLINE (PubMed), PsycINFO, and CINAHL. Study selection, quality assessment, and data extraction was performed independently. Both quantitative and qualitative studies were included. Of the included studies, we additionally screened citing literature in Google Scholar (citation tracking). We linked the narrative synthesis to four stages of caregiving described by Williams and colleagues and used descriptive inductive thematic analysis to structure data within the stages.; Results: From 3275 abstracts screened, 48 manuscripts met our inclusion criteria. Our data analysis shows that needs differ across the four caregiving stages. While the stage of bereavement (stage 4) includes too little data for separate themes, themes for needs after diagnosis (stage 1), and terminal stage (stage 3) could be specified. As the maintenance (stage 2) stage comprised of themes relevant across the caregiving course, it became an overall stage.; Discussion: Healthcare professionals need to pay attention to current caregiving stages to provide support for informal caregivers. Further research is needed to tease out support needs for the bereavement phase.

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Creation and Initial Validation of the Caregiver Analysis of Reported Experiences with Swallowing Disorders (CARES) Screening Tool

Purpose: Dysphagia is a debilitating condition with widespread consequences. Previous research has revealed dysphagia to be an independent predictor of caregiver burden. However, there is currently no systematic method of screening for or identifying dysphagia-related caregiver burden. The aim of this study was to develop a set of questions for a dysphagiarelated caregiver burden screening tool, the Caregiver Analysis of Reported Experiences with Swallowing Disorders (CARES), and pilot the tool to establish preliminary validity and reliability. Method: The questionnaire was developed through an iterative process by a team of clinical researchers with expertise in dysphagia, dysphagia- related and general caregiver burden, and questionnaire design. A heterogenous group of 26 family caregivers of people with dysphagia completed the CARES, along with the Eating Assessment Tool (EAT-10), the International Dysphagia Diet Standardisation Initiative Functional Diet Scale ( IDDSI-FDS), and the Zarit Burden Interview (ZBI). Information on construct validity, item fit, convergent validity, internal consistency, and reliability was determined via Rasch analysis model testing, Cronbach's alpha, and Spearman's rho calculations. Results: The final CARES questionnaire contained 26 items divided across two subscales. The majority of the questionnaire items fit the model, there was evidence of internal consistency across both subscales, and there were significant relationships between dysphagia-specific burden (CARES) and perceived swallowing impairment (EAT-10), general caregiver burden (ZBI), and diet restrictiveness (IDDSI-FDS). Conclusions: Results from the current study provide initial support for the validity and reliability of the CARES as a screening tool for dysphagia-related burden, particularly among caregivers of adults with swallowing difficulties. While continued testing is needed across larger groups of specific patient populations, it is clear that the CARES can initiate structured conversations about dysphagia-related caregiver burden by identifying potential sources of stress and/or contention. This will allow clinicians to then identify concrete methods of reducing burden and make appropriate referrals, ultimately improving patient care.

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Comparison of time-use patterns and self-efficacy in family caregivers of patients with chronic disease

Background/Aims: Caregivers perform an important role but caring affects other roles they perform, resulting in poor time management and reduced quality of life. This study aimed to compare the time-use patterns and self-efficacy of caregivers of two groups of patients with chronic disease: those with a diagnosis of mental illness and those without a diagnosis of mental illness. Methods: Family caregivers of patients with a chronic disease who were aged between 20–60 years, resident in Arak, not taking care of another patient and literate were eligible to participate. The presence of mental illness was based on a psychiatrist's diagnosis at least 6 months before the study. The Mothers' Time Use Questionnaire, Sherer Self-efficacy Scale and a demographic questionnaire were used to capture data relating to time-use, self-efficacy and participant characteristics. Data were analysed using independent t-test and Mann–Whitney U test to identify and compare time-use patterns and self-efficacy. Results: There were no significant between-group differences in demographics or mean time-use scores in six domains (rest/sleep, leisure, housework, work/occupation, social participation and satisfaction with time management). Self-care time-use scores (time, quality, importance and enjoyment) were significantly higher for caregivers of patients with chronic disease with a diagnosis of mental illness. Patient care time-use scores were significantly higher for caregivers of patients with chronic disease without a diagnosis of mental illness. Mean self-efficacy score was significantly higher in the group caring for patients with a diagnosis of psychiatric disease. Conclusions: Chronic physical illnesses may result in greater dependence on caregivers than mental illness, increasing the amount of time spent on care and reducing caregiver self-efficacy. 

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A cluster randomized controlled trial on a multifaceted implementation strategy to promote integrated palliative care in COPD: study protocol of the COMPASSION study

Background: Despite the urgent need for palliative care for patients with advanced chronic obstructive pulmonary disease (COPD), it is not yet daily practice. Important factors influencing the provision of palliative care are adequate communication skills, knowing when to start palliative care and continuity of care. In the COMPASSION study, we address these factors by implementing an integrated palliative care approach for patients with COPD and their informal caregivers. Methods: An integrated palliative care intervention was developed based on existing guidelines, a literature review, and input from patient and professional organizations. To facilitate uptake of the intervention, a multifaceted implementation strategy was developed, comprising a toolbox, (communication) training, collaboration support, action planning and monitoring. Using a hybrid effectiveness-implementation type 2 design, this study aims to simultaneously evaluate the implementation process and effects on patient, informal caregiver and professional outcomes. In a cluster randomized controlled trial, eight hospital regions will be randomized to receive the integrated palliative care approach or to provide care as usual. Eligible patients are identified during hospitalization for an exacerbation using the Propal-COPD tool. The primary outcome is quality of life (FACIT-Pal) at 6 months. Secondary outcome measures include spiritual well-being, anxiety and depression, unplanned healthcare use, informal caregiver burden and healthcare professional's self-efficacy to provide palliative care. The implementation process will be investigated by a comprehensive mixed-methods evaluation assessing the following implementation constructs: context, reach, dose delivered, dose received, fidelity, implementation level, recruitment, maintenance and acceptability. Furthermore, determinants to implementation will be investigated using the Consolidated Framework for Implementation Research. Discussion: The COMPASSION study will broaden knowledge on the effectiveness and process of palliative care integration into COPD-care. Furthermore, it will improve our understanding of which strategies may optimize the implementation of integrated palliative care.

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Burden in primary family caregivers caring for uremic patients on maintenance peritoneal dialysis

Background: Managing the burden of care for patients with chronic debilitating diseases is an important issue. Herein, we assessed the burden in primary family members caring for uremic patients on maintenance peritoneal dialysis. Methods: One hundred seventy caregivers and 170 patients were recruited. Self-perceived scoring along the Zarit Caregiver Burden Scale (ZCBS), World Health Organization Five-item Well-Being Index (WHO-5), and Warwick-Edinburgh Mental Well-being Scale (WEMWBS) were determined for caregivers. Results: There was an inverse relationship between ZCBS and WHO-5 or WEMWBS scores in caregivers, suggesting that the higher the burden, the lesser the self-perceived well-being. One hundred two of 170 caregivers (60%) reported mild to moderate burden, indicating a common presence of mild to moderate caring-related mental and physical stress. Moreover, 31 caregivers (18.2%) reported moderate to severe burden. Several patient disease factors, including diabetes and frailty, increased caregiver burden, while insurance coverage and out-of-pocket medical costs were also positively correlated. Caregivers who lived with patients and spent longer hours in caring-related activities had higher burden scores, while regular exercise seemed to partially alleviate the burden. Conclusion: Our study clearly showed that caring for patients with maintenance peritoneal dialysis caused physical, mental, and social burden in family caregivers, with the extent of the stress being influenced by patients' disease severity and other demographic factors in both patients and caregivers.

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Who Cares? An Existential Perspective of Caregiving for Individuals With a Left Ventricular Assist Device

The goal of a LVAD is to extend life expectancy, improve physical strength and quality of life, and allow individuals to be discharged home. When making decisions for a family member to receive a LVAD, caregivers are asked to confront a sophisticated technology with not only the potential to extend life expectancy and improve quality of life but also risks for complications and burdens. The caregiver may place different values on the quality of life (e.g., symptoms, physical function, social interactions) and burdens of therapy (e.g., lifestyle adjustment, independency, direct and indirect costs, caregiver burden) than the values of The Other. 

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Who are the ostomy patients and caregivers attending Portuguese community pharmacies? A cross-sectional study

Background In 2017, ostomy patients gained access to ostomy products in community pharmacies that are fully reimbursed by the Portuguese National Health Service. This impacted the daily lives of people with ostomy and opened a new market of products and services for pharmacies. However, little is known about the sociodemographic and clinical profile of ostomy patients. This study aims to characterize people with ostomy and their caregivers, evaluate access and satisfaction with the pharmacy and explore participants' expectations regarding services and counselling. Methods This was an observational, cross-sectional, multicentre study involving pharmacy users who acquired ostomy products in Portuguese community pharmacies. Data were collected through a confidential self-report questionnaire between June and August 2019. Results Approximately 56% of the participants were ostomy patients, of whom 65.9% were men. The average age of participating ostomy patients was 65.5 years old (SD = 12.9), and near 80% were retired/pensioners. Caregivers were mostly women (81.7%). More than half of the caregivers were employed and acquired products for a direct family member. Three in every four surgical interventions were consequences of cancer. Intestinal ostomy was the most common intervention (78.3%). More than 93% were satisfied with the acquisition of ostomy products at the pharmacy. Approximately 48.2% of ostomy patients received care from a specialized nurse. Conclusion This study describes the profile of people with ostomy and their caregivers who attend community pharmacies in Portugal. Participants' perceptions of the utility of different proposed services and pharmacist knowledge, as well as the low coverage of ostomy nursing care, highlight the opportunity for an extended role of pharmacists among this group.

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When a romantic partner has a spinal cord injury: Caregiving tasks and resilience as moderators of support quality on psychosocial distress and relational closeness

Using a sample of 312 people in a romantic relationship with a partner who has a spinal cord injury (SCI), this study examined the separate and combined effects of caregiving tasks, resilience, and received support on the participant's level of psychosocial distress. We also tested whether such distress might mediate the effect of the predictors on romantic relationship closeness. Results supported the beneficial effects of both resilience and receiving high-quality support, although the timing of the injury moderated these effects. Injuries sustained after relationship initiation particularly threaten well-being and closeness and, along with the burden of caregiving tasks, alter the extent to which received support and resilience are associated with health and relationship benefits. These results suggest that support providers should be sensitive to the context of the SCI and, for scholars, indicate the importance of further theorizing context in the theory of resilience and relational load. 

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'This is your golden time. You enjoy it and you've plenty time for crying after': How dysphagia impacts family caregivers of people with amyotrophic lateral sclerosis – A qualitative study

Background: Dysphagia (swallowing impairments) is a well-recognised symptom of amyotrophic lateral sclerosis. Caring for a person with amyotrophic lateral sclerosis has been recognised as a complex and demanding task. No study to date investigated the impact of dysphagia on the lives of caregivers of people with amyotrophic lateral sclerosis. Aim: To investigate the experiences of dysphagia from the perspective of family caregivers of people diagnosed with amyotrophic lateral sclerosis. Design: Interpretative phenomenological analysis was employed. Individual interviews (n = 15) plus observations of mealtime preparation were conducted, where possible (seven or n). Setting/participants: Participants comprised family caregivers of people with amyotrophic lateral sclerosis and dysphagia living in the South West of Ireland (n = 10). Findings: Dysphagia transformed the mealtime experiences of the caregivers and changed their approaches to food. Frustration related to the inability to stabilise the weight of the person with amyotrophic lateral sclerosis and the fear of choking emerged strongly. The caregivers strived to ensure the safety of people with amyotrophic lateral sclerosis during meals by providing constant supervision. Despite the challenges precipitated by dysphagia and amyotrophic lateral sclerosis, the caregivers wished to maintain normality for as long as they perceived it to be possible. Conclusion: This study provides a unique contribution in advancing our understanding of the impact of dysphagia on the caregivers of people with amyotrophic lateral sclerosis. Professionals must explore and recognise the needs of the caregivers and provide them with appropriate support, especially how to manage choking. 

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Supporting In-Home Caregivers in Symptom Assessment of Frail Older Adults with Serious Illness: A Pilot Study (RP411)

Objectives Describe the use of a Symptom Assessment (SA) Toolkit designed to support in-home caregivers of homebound older adults with serious illness. Explore next steps in evaluation and dissemination of the Toolkit. Importance. Many older adults with serious illness who depend on others for care have symptoms that are difficult to manage. Supporting in-home caregivers in symptom assessment (SA) may improve suffering among older adults. Objective(s). To test the feasibility of a SA-Toolkit for caregivers to assess and track older adults' symptoms. Method(s). With multi-stakeholder input, we created a SA-Toolkit consisting of illustrations depicting symptoms, a validated 5-faces severity scale, and an easy-touse tracking system with phone numbers of family/ friends/clinicians to contact if symptoms worsened. We recruited English-speaking patients $65 years old and their caregivers from a home-based geriatrics program in San Francisco. Using validated questionnaires at baseline and 1-week, we assessed patients' symptoms, patients' and clients' self-efficacy with SA (5- point Likert scale), and acceptability (i.e., recommend to others). We used Wilcoxon signed-rank tests. Results. Eleven patient-caregiver dyads participated. Patients were 84.7 years old (SD 5.7), 81.8% women, and 27.3% non-white. From baseline to 1-week, the mean number of symptoms decreased (3.7 (1.5) at baseline to 2.6 (1.8) at follow-up, p¼0.03). Specifically, the number of patients with pain decreased from 63.6% to 36.4%, anxiety 54.6% to 18.2%, depression 45.5% to 27.3%, and loneliness 36.4% to 18.2%. Caregiver self-efficacy increased (4.6 (0.3) to 4.8 (0.3), p¼0.09). Patients found the symptom illustrations easy-to-use (8.7 on 10-point scale), but the faces scale less so (7.3/10) because it provided ''too many choices.'' Caregivers liked the SA-Toolkit because it was ''easy to use''; nearly all (10/11, 90%) would recommend it to others. Suggested improvements included personalizing materials according to patients' symptoms. Conclusion(s). The SA-Toolkit resulted in decreased symptom burden among patients and higher caregiver self-efficacy in symptom assessment. Acceptability of the Toolkit was high among both patients and caregivers. Impact. A SA-Toolkit is feasible and may help reduce suffering in frail, older patients.

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Supporting family caregivers of Veterans: Participant perceptions of a federally-mandated caregiver support program

Objectives: To understand patients' and caregivers' experiences with and perceptions of a federally-mandated program within the Department of Veterans Affairs (VA) that provides educational and monetary support to family caregivers of post-9/11 Veterans.; Methods: Twenty-six Veterans and their family caregivers were recruited to participate in individual and dyadic interviews. Interviews lasted between 60 and 90 min and took place between August 2016 and July 2018 in Oregon and Louisiana. Interviews were recorded, transcribed and coded by multiple team members. Recurrent themes and categories were identified through close examination of coded text and comparison within and across transcripts.; Results: Three main themes emerged in the data: 1) appreciation of the caregiver program for validating and compensating family caregiver work; 2) perception that some caregiving activities are less visible, and thus go unrecognized and uncompensated; 3) concern about loss of benefits.; Conclusions: Implications and policy recommendations for programs to support family caregivers, both within the VA and in the context of the broader national movement to support family caregivers, are discussed. 

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Stress and well‐being of unpaid carers supporting claimants through disability benefit assessments

This study assessed the subjective well‐being and perceived stress of unpaid carers of disability benefit claimants. A total of 129 carers from the UK were surveyed between July and September 2017, using a cross‐sectional design. Carers, who provided unpaid support to sick or disabled friends, family or neighbours in a non‐professional capacity, reported here as unpaid carers, were asked to complete a web‐based questionnaire comprising of the Perceived Stress–10‐item Scale (PSS‐10), the Personal Wellbeing Index–Adult (PWI‐A), sociodemographic characteristics, the time they spent caring per day and the number of Personal Independence Payment and Work Capability Assessment interviews prepared for and attended by the person they cared for. Hierarchical regression analyses were performed to assess the effects of the number of benefit assessments on stress and well‐being scores, controlling for carers' sociodemographic characteristics and the time they spent caring. Analyses revealed that the number of times that claimants were exposed to benefit assessments significantly and negatively predicted unpaid carers' well‐being and was positively related to their stress levels. After controlling for sociodemographic characteristics and hours supporting per day, benefit assessments predicted 8.1% of perceived stress and 4.3% of well‐being variance. Being a female unpaid carer of a disability benefit claimant negatively predicted 7.5% of well‐being variance. The results offered unique evidence of the negative psychological effects of disability benefit assessments upon unpaid carers, while adding to the evidence of female carers facing increased risks of psychological distress.

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Stigma in psychogenic nonepileptic seizures

Objective: There is scarce literature on stigma in families living with psychogenic nonepileptic seizures (PNES). Using a cohort of patients with epileptic seizures (ES) and their caregivers as controls, we aimed to quantify the level of patient and caregiver stigma in PNES and identify associations of patient and caregiver characteristics with it. Methods: Patients with PNES and ES and their caregivers completed surveys about demographic, clinical, and psychosocial characteristics. Multivariate regression analysis was used to identify correlates of patient and caregiver stigma. Results: Forty-three patients with PNES and 165 patients with ES were recruited. Compared with patients with ES, patients with PNES had shorter disease duration, higher seizure frequency, normal diagnostic data, poorer psychosocial health, and fewer antiseizure medications (ASMs). A total of 76.5% of patients with PNES and 59.5% of patients with ES felt stigmatized. Patient stigma level was higher in patients with PNES compared with those with ES, and it was negatively associated with patient quality of life (QOL). Additionally, 28 caregivers of patients with PNES and 99 caregivers of patients with ES were recruited. There were no significant demographic, caregiving, or psychosocial differences between the two caregiver cohorts. Seventy-two percent of caregivers of patients with PNES and 47% of caregivers of patients with ES felt stigmatized. Caregiver stigma level was also higher in caregivers of patients with PNES compared with caregivers of patients with ES, and it was negatively associated with patient QOL and positively associated with patient and caregiver anxiety. Conclusion: Compared with those with ES, patients and caregivers living with PNES experience stigma more frequently and to a higher extent. Patient QOL emerges as a consistent correlate of that stigma. 

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Sickle cell disease perceptions of caregivers, adolescent, and adult patients: Barriers and facilitators to medical care adherence

Aims: To provide an understanding of medical care adherence factors as reported by caregivers, adolescent, and adult patients with sickle cell disease and to analyse those concerns to identify barriers and facilitators about medical care adherence. Three topics influenced medical care adherence: the disease itself, therapeutics, and the healthcare system. This study will focus on the first topic. Design: Qualitative explorative study, using semi‐structured and life‐experience interviews and manual inductive content analysis. Methods: From December 2016 – March 2017, one semi‐structured interview was conducted by a researcher with each of the 15 adolescent patients, 10 adult patients, and 19 caregivers in a French public hospital. Interviews were audio‐taped and transcribed before a content analysis. Perceptions were classified into barriers and facilitators of medical care adherence. Results: This article presents disease perceptions of caregivers and patients (adolescents and adults): daily management and social representations. These perceptions differ among parents, adolescent patients, and adult patients. However, all report important disease‐related "limitations" in their lives. The objective for adults (parents and patients) is to "live with the disease" and to achieve this, they find coping resources. Two major resources expressed by adults emerged: social resources (support from friends, patients' association, and social visibility) and disease knowledge (theoretical and derived from experience). This is not the case of adolescents for whom social normality was the main concern. Conclusion: Care management adherence is partly based on coping with the disease. Given the lower number of facilitators expressed by adolescents, it is essential to propose interventions in this population. It will help them cope with the disease and, consequently, optimize care management adherence. Impact: Showing differences among caregivers, adult, and adolescent patient perceptions, this study impact future care practices. It revealed needs of intervention for adolescents.

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Relationship between Distress Related to Caregiver Burden and Physical Activity in Informal Caregivers of Patients with COPD

Chronic obstructive pulmonary disease (COPD) can lead to increased dependence on the informal caregiver and, consequently, to distress associated with caregiving burden. In the general population, higher levels of physical activity (PA) are related to lower distress levels; however, this relationship has been scarcely studied in COPD. This study aimed to explore the relationship between distress and PA in informal caregivers of patients with COPD, and the influence of caregivers' (age, sex) and patients' (age, sex, lung function) characteristics and caregiving duration on this relationship. A cross-sectional study was conducted with 50 caregivers (62.7 ± 9.8 years, 88% female; 78% caring for a spouse/partner; 38% caring >40 h/week; patients' FEV1=45.2 ± 21.3% predicted). Data collection comprised questions related to the caregiving context, distress related to caregiving burden assessed with the Informal Caregiver Burden Assessment Questionnaire (QASCI; total score, 7 subscales), and self-reported PA with the Habitual Physical Activity Questionnaire (HPAQ). Spearman's correlation coefficient and linear regressions were used. Significant, negative and moderate correlations were found between the QASCI (28.5 ± 19.8) and the HPAQ (5.2 ± 1.3) (ρ=-0.46; p = 0.01); and between the HPAQ and some QASCI subscales (emotional burden ρ=-0.47; implications for personal life ρ=-0.52; financial burden ρ=-0.44; perception of efficacy and control mechanisms ρ=-0.42; p < 0.01). Two linear regression models were tested to predict QASCI total score including as predictors: 1) HPAQ alone (p = 0.001; r2=0.23); 2) HPAQ and caregiving h/week (p < 0.001; r2=0.34). Higher self-reported PA levels are related to decreased levels of distress associated with caregiver burden in COPD caregivers. Duration of caregiving may negatively influence this relationship.

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The relation between self‐efficacy in patients with chronic obstructive pulmonary disease and caregiver burden

Aim: The study was conducted to examine the relation between self‐efficacy in patients with chronic obstructive pulmonary disease (COPD) and caregiver burden. Material and methods: This descriptive, cross‐sectional study included 200 patients with stage II and III COPD presenting to hospital between June and November in 2017 and their caregivers. Data were gathered with a questionnaire, COPD Assessment Test and COPD Self‐Efficacy Scale from the patients. A questionnaire and Caregiver Burden Scale was used to collect data from the caregivers. Obtained data were analysed with the descriptive statistics numbers, percentages, mean, median and standard deviation. Spearman's correlation analysis was utilised to examine the relation between paired groups. Results: The mean age of the patients with COPD was 63.53 years and 51.1% of the patients were female. The mean age of the caregivers was 48.88 ± 14.09 years. 54.4% of the caregivers were aged 40–60 years, and 59.9% of the caregivers were female. The mean score was 26.97 ± 5.25 for COPD Assessment Test and 2.32 ± 0.43 for COPD Self‐Efficacy Scale. Of all the caregivers, 64.8% had mild caregiving burden and 18.1% had moderate caregiving burden. The mean score for Caregiver Burden Scale had a significant, moderate relation with the mean score for the subscale physical effort in COPD Self‐Efficacy Scale (r = −0.42; p < 0.01) and had a significant, weak, negative relation with the mean total score for COPD Self‐Efficacy Scale and the mean scores for its subscales. There was a significant, moderate, positive relation between the mean scores for Caregiver Burden and COPD Assessment Test (r = 0.51; p < 0.001) and a significant, negative relation between the scores for COPD Self‐Efficacy Scale and its subscales and the scores for CAT (r = −0.26 ‐ r = −0.52; p < 0.05). Conclusion: As self‐efficacy in COPD patients increases, their health and daily lives are affected less by COPD and caregiver burden decreases. 

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Quality of Life, Physical and Mental Health of Family Caregivers of Dependent People with Complex Chronic Disease: Protocol of a Cohort Study

Background: informal caregivers have a high risk of suffering from diseases derived from the chronic stress to which they are subjected for their dedication to the care of their relatives. Such stress has a direct influence on the person cared for, mainly affecting the quality of their care. Therefore, the aim of the present study is to assess the association of caregiving on physical and mental perceived health in family caregivers of dependent adults with complex chronic diseases.; Methods: a prospective longitudinal cohort study, with a follow-up period of 36 months (HUELLA cohort). The exposed cohort will be formed by family caregivers of dependent patients with complex chronic pathologies. The unexposed cohort will be taken from the general population adjusted for age, sex and health. Outcome variables will include attendance to health services, consumption of psychoactive drugs, dedication to care (only in exposed cohort), concession of the Act on Promotion of Personal Autonomy and Care for dependent persons (exposed only), perceived physical and mental health, depression level, burden level and new diagnosis of chronic pathology of the caregiver during the study.; Results: the expected results will be applicable and will incorporate improvements to the usual health system clinical practice, providing feedback to professionals dedicated to the provision, planning and design of services to family caregivers, as well as to groups and organizations of caregivers.; Conclusions: investments in preventing low-quality informal care are key, mainly through early identification and interventions to support caregivers who suffer from stress, anxiety or depression.

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Provider Views on Integrating Family Caregivers in Clinical Encounters (RP413)

Objectives: • Critique, from the view of providers, the potential benefits and drawbacks of integrating family caregivers into clinical encounters. • Describe provider attitudes, beliefs and ethical and clinical considerations that may affect the integration of family caregivers into clinical encounters.  Importance: Family caregivers frequently accompany patients to clinical encounters, particularly when dealing with serious illnesses. Family caregivers, however, are not often invited to be active participants in clinical encounters. Little is known about provider perceptions on engaging caregivers in clinical encounters.  Objective(s): Our aim was to better understand providers' perceptions on engaging caregivers during clinical encounters.  Method(s): Twenty providers in primary, specialty, or palliative care from our institution in 3 distinct geographic areas of the United States (southeast, midwest, and southwest) were invited by email to participate in individual interviews (via telephone or in-person). Using a standard interview guide, providers were asked about their previous experiences with caregivers in clinical encounters and their views about integrating caregiver assessment into clinical encounters. Data were inductively analyzed using a thematic approach.  Results: We identified 3 themes among this sample of providers regarding: 1) the appropriate role of caregivers in the clinical encounter; 2) effectively managing the conversation when caregivers are involved; and, 3) the systemic barriers to caregiver integration. Providers chiefly view caregivers as sources of supplemental information or as absorbers or reinforcers of clinical instructions for care at home. Providers voiced concerns about the ethics of assessing caregiver capacity to provide assistance to the patent without having clinical authority to treat the caregiver or the adequate resources to provide help to the caregiver. Finally, providers identified structural barriers, including time constraints, for integrating caregivers into the clinical visit.  Conclusion(s): These findings provide insight into provider attitudes on the family caregivers' role in clinical encounters, a perspective that is essential for understanding opportunities and challenges for implementing caregiver interventions in clinical settings.  Impact: Further work is needed to identify the best strategies to overcome barriers to integrating caregivers in clinical encounters in order to improve the holistic care of patient-caregiver units.

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Preparation, Reliability, and Validity of a Japanese Version of the "Satisfaction of Treatment among Caregivers of Dependent Type 2 Diabetic Patients" Questionnaire

The aim of this study was to prepare a Japanese version of the "Satisfaction of Treatment among Caregivers of Dependent Type 2 Diabetic Patients" (STCD2-J) questionnaire, which is used to assess the satisfaction of family caregivers with respect to the treatment for elderly patients with type 2 diabetes mellitus who require support. In addition, the reliability and validity of the STCD2-J questionnaire were analyzed. A Japanese version of the original STCD2 questionnaire was prepared, revised, and back-translated; the back-translated version was sent to the authors of the original version for confirmation. Family caregivers of patients with type 2 diabetes mellitus aged ≥65 years who regularly underwent medical examinations at the diabetes mellitus outpatient clinic of Ise Red Cross Hospital were included. Cronbach's α coefficient was calculated to assess internal consistency. Exploratory factor analyses were performed to assess construct validity, and Pearson's correlation coefficients between STCD2-J score and HbA1c as well as the degree of satisfaction with patients' blood glucose levels, depression, and negative self-assessment of nursing care were calculated to assess criterion-related validity. This study included 208 individuals (55 males and 153 females). Cronbach's α coefficient was 0.88. Factor analyses showed a single-factor structure both with and without rotation. The STCD2-J scores were significantly inversely correlated with HbA1c (r = − 0.27 , P < 0.001). Significant correlations were observed between the STCD2-J scores and degree of satisfaction with patients' blood glucose levels (r = 0.43 , P < 0.001), depression (r = − 0.20 , P = 0.003), and negative self-assessment of nursing care (r = − 0.19 , P = 0.004). The reliability and validity of the STCD2-J questionnaire were confirmed. The STCD2-J questionnaire can be used in Japan as a tool to assess the satisfaction of family caregivers with the treatment of elderly patients with type 2 diabetes mellitus requiring support. 

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The Predicament of Caring: Work Interferences and Health of Family Caregivers of Persons With Multiple Chronic Conditions

Providing caregiving to family members with multiple chronic conditions (MCCs) can interfere with employment status and have a negative impact on caregivers' well-being. The qualitative analysis of 13 Canadian employees who were also simultaneously providing unpaid care (carer-employees) identified three themes that highlight work interference, negative impacts on well-being, and workplace culture. The findings call for employers to provide health promotion strategies and a supportive workplace culture that reduce workplace interference while being responsive to the unique needs of carer-employees.

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Perceived social support and health-related quality of life in older adults who have multiple chronic conditions and their caregivers: a dyadic analysis

Patients who have multiple chronic conditions (MCCs) and their informal caregivers experience poorer health-related quality of life (HRQOL). Perceived social support has been shown to influence HRQOL. This study aimed at identifying the differences between patients' and caregivers' physical and mental HRQOL; and determining the association between their perception of social support from different sources, and their own and their dyad partner's HRQOL. Patients with MCCs and their caregivers (345 dyads) were enrolled in a multicenter cross-sectional study conducted in Italy. The Multidimensional Scale of Perceived Social Support measured perceived social support from family, friends, and significant others, and the 12-Item Short-Form Health Survey measured the physical and mental component of HRQOL in dyads. The dyadic analysis was conducted using the Actor-Partner Interdependence Model through structural equation modelling. Family support perceived by each member of the dyad was associated positively with their own mental HRQOL, and that family support perceived by caregivers was also associated positively with patients' mental HRQOL. Greater family support perceived by caregivers was also associated with better physical HRQOL in both caregivers and patients. Moreover, greater friend-support perceived by each member of the dyad was positively associated with own physical HRQOL. The study suggests the reciprocal influence of perceived social support from family and friends on physical and mental HRQOL in MCC dyads. Healthcare professionals should identify those people who are the main sources of support for each member of the dyad, and develop care plans that promote the maintenance and enhancing of this support. • Social support is linked to patient-caregiver dyad's HRQOL in multiple chronic conditions. • Types of support providers have inter- and intrapersonal effects on HRQOL. • Family support perceived by caregivers is associated with quality of life of chronic patients. • Perceived friend support is associated with patient-caregiver dyads' HRQOL. • Care from a partner is associated with better mental quality of life in the chronically ill. 

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Partners' Attachment Styles and Overprotective Support as Predictors of Patient Outcomes in Cardiac Rehabilitation

Objective: This study investigates whether the adult attachment styles of support partners in a cardiac rehabilitation context predict their use of overprotective support strategies, and whether such overprotection in turn predicts lower self-efficacy and poorer program attendance in cardiac rehabilitation patients. Research Method: Participants were 69 partner–patient dyads, mostly older adults (mean age = 65 years) in long-term relationships (M = 35 years). During the first week of a 10-week cardiac rehabilitation program in a midsized rural hospital, participants completed self-report questionnaires that were used to assess partners' attachment styles and levels of overprotection, as well as patients' health-related self-efficacy. Attendance at each session of the program was then tracked by cardiac rehabilitation staff members. Results: A moderated mediation model using bootstrapping showed that when partners were insecurely attached (high in both attachment avoidance and attachment anxiety), a mediational model held, such that more insecure partner attachment predicted more extensive use of overprotective support strategies, which in turn predicted lower patient self-efficacy for exercise and less-frequent program attendance. Implications: Implications for training support partners in more-effective support strategies are discussed. Impact and Implications: This article identifies support partners' attachment insecurity as a potential risk factor for offering overprotective support in a cardiac rehabilitation context; demonstrates that partners' attachment styles are associated with their use of support strategies, which in turn are associated with important patient outcomes, assessed via self-report (self-efficacy) and objective measures (program attendance); and responds to a call to better understand the dynamics of more-effective versus less-effective partner support strategies, as a means to improve training. Awareness of these dynamics may help to train partners in use of more effective support strategies, and/or help buffer patients when they receive less-effective forms of support. 

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Neuropsychiatric symptoms and caregiver burden in Parkinson's Disease: Mitigating the lack of awareness!

The article focuses on Parkinson's disease (PD) is quite challenging to deal with, for patients and their caregivers alike. Topics include the caregivers help PD patients deal with their symptoms even before a formal diagnosis is made, the family member while going through the tedious process of diagnosis and treatment to palliative care, and the PD commonly affects patients in the age when they are transitioning to retirement.

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Needs, Aggravation, and Degree of Burnout in Informal Caregivers of Patients with Chronic Cardiovascular Disease

This study aimed to answer three main questions with respect to home caregivers for people with cardiovascular disease: (1) Are the needs of home caregivers being met (and at what level)?; (2) what is the level of emotional exhaustion, depersonalization, and personal accomplishment of home caregivers?; (3) what sociodemographic variables of home caregivers are related to unmet needs and level of emotional exhaustion, depersonalization, and personal accomplishment? The study used the Camberwell Modified Needs Assessment questionnaire and the Maslach Burnout Inventory questionnaire. This study reports on 161 informal home caregivers of patients with cardiovascular disease. We found that younger caregivers were less likely to report unmet needs ( p = 0.011), and showed lower rates of burnout on depersonalization and emotional exhaustion. In addition, caregivers who worked more often reported higher levels of met needs ( p = 0.022), and showed lower rates of burnout on depersonalization ( p = 0.005) and emotional exhaustion ( p = 0.018). Subjects residing in urban areas were more likely to report unmet needs ( p = 0.007), and showed higher rates of burnout on emotional exhaustion ( p = 0.006). Older caregivers who are unemployed and reside in cities should be offered programs to determine their unmet needs and to receive support.

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Multiple Sclerosis Adult Day Programs and Health-Related Quality of Life of Persons with Multiple Sclerosis and Informal Caregivers

Background: Multiple sclerosis adult day programs (MSADPs) offer life-enhancing services for individuals and informal caregivers affected by multiple sclerosis (MS), including medical care, rehabilitation therapies, nutrition therapy, cognitive training, tailored education, exercise programs, and social interaction. The purpose of this study was to examine the effects of MSADPs on health-related quality of life (HRQOL) and health care utilization of persons with MS and HRQOL and well-being of informal caregivers. Methods: Using a quasi-experimental design, outcomes between baseline and 1-year follow-up in persons with MS and informal caregivers who used MSADP services and a comparison group of similar persons with MS and caregivers who did not use MSADP services were compared. For persons with MS, outcomes included standardized measures of physical and mental HRQOL and health care utilization. For caregivers, outcomes included physical and mental HRQOL and well-being. Changes in outcomes between baseline and follow-up were examined using propensity score-weighted difference-in-differences regression analysis. Results: For persons with MS, MSADP use had a significant positive effect on 12-Item Short Form Health Survey physical component scores, although the difference was not clinically meaningful. Use of MSADPs did not have effects on any other outcomes for persons with MS or caregivers. Conclusions: Use of MSADPs did not show a clinically meaningful effect on HRQOL for persons with MS or informal caregivers. The MSADPs do not seem to offer sustained benefits to persons with MS or caregivers, but the possibility of initial short-term benefits cannot be ruled out.

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Management of Sleep Disturbances in Parkinson's Disease Patients, Carers and the Patient and Carer Dyadic Relationship: A Scoping Review

Sleep disturbances are a debilitating non-motor symptom in Parkinson's disease (PD) and negatively impact patients, their carers and the patient-carer dyadic relationship. This review outlines the phenomenology, as well as factors associated with and treatment of sleep disturbances, in PD patients and their informal carers. The following terms were used in four databases: Parkinson*, sleep* disturbance*, carer*, dyad*, intervention* and treatment*. Across the articles reviewed, the frequency of reported sleep disturbances in PD ranged between 60% and 98%. Common sleep problems in PD included insomnia, excessive day time sleepiness, REM sleep behavior disorder (RBD), sleep apnoea, periodic limb movements and sleep attacks. Within dyads, significant correlations were found with depression, anxiety and carer burden relating to night time care in particular. Despite the negative impact of sleep disturbance in PD, the evidence-base for treatment remains limited. While addressing individual factors associated with sleep disturbances, it is also important to emphasize the needs arising from the patient-carer dyadic relationship. While a number of non-pharmacological interventions were suggested in the literature, further well-controlled trials are still required. Multiple approaches are required to reduce sleep disturbances and associated burden in PD.

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Long-Term Socioeconomic Impact of Informal Care Provided to Patients with Pacemakers: Remote vs. Conventional Monitoring

The impact of informal care immediately after pacemaker (PM) implantation has been well established; however, not much is known about its long-term effects. The present study compared personal characteristics, associated problems, workloads, time, and costs related to informal care provided to patients with PM under remote monitoring (RM) vs. conventional monitoring (CM) in the hospital, five years after implantation. The PONIENTE study was a controlled, non-randomized or masked clinical trial conducted with information obtained from the perspective of informal caregivers. Data were collected at 12 and 60 months after PM implantation. The patients in the study were assigned to two different groups: remote monitoring (RM) and conventional monitoring (CM). The "Disability, personal autonomy, and dependency situations survey" (EDAD) was administered to collect information on sociodemographic characteristics, time, care difficulties, health status, professional aspects, and impact on economic, family, or leisure aspects of the main caregivers providing care to patients with pacemakers. After five years, 55 patients completed the study (RM = 21; CM = 34). The average age was 63.14 years (SD = 14.90), 96% of them were women, and the most predominant marital status was married (72%). Informal caregivers lived in the homes of the patients in 70% of cases, and 88% indicated that they had to provide care six to seven days a week. The average cost per patient during the monitoring period studied was 13.17% lower in the RM group than in the CM group, and these differences were not statistically significant ( p = 0.35). This study found similar results in the two groups under study with respect to sociodemographic characteristics, workload, time, and problems associated with health, leisure and family members. The costs associated with care were higher in the CM group; however, these differences were not statistically significant.

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Longitudinal appraisals of family caregiving for people with disabilities enrolled in Medicaid managed care

Objective: To longitudinally examine the impact of public family support on appraisals of caregiving burden, satisfaction, and self-efficacy among families of adults with disabilities. Background: Little research exists on family support and the family experience within Medicaid managed care across disabilities and longitudinally. Method: Illinois Medicaid managed care enrollees with disabilities and their family members completed surveys over 2 years. Only families and enrollees who lived together were included (N = 182 pairs). Results: Family members with more unmet family support needs had increased caregiving burden and decreased satisfaction and self-efficacy. Family members providing more unpaid care reported higher burden. Black family members had significantly lower burden, and parents had significantly lower satisfaction and self-efficacy. Family members of enrollees with intellectual and developmental disabilities had higher self-efficacy. Conclusion: Family support is important to caregiving appraisals. Implications: There is a need for including family needs for services within assessments for services and within policy. Families provide a substantial amount of care for their family members with disabilities. More family support for family caregivers of people with disabilities is related to better caregiving appraisals within Medicaid managed care. Family caregiver support needs should be taken into account within policy and service assessments.

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ILFA Stakeholder Survey: Caregivers

Between April 16th and May 5th 2020, the Irish Lung Fibrosis Association commissioned a survey of its stakeholders to gain a deeper understanding of how their daily and healthcare needs were being met during the Covid-19 pandemic. Caregivers were quite concerned about poor levels of awareness and lack of recognition of Idiopathic Pulmonary Fibrosis (IPF) as a serious condition. Several were experiencing stress and they found the support from ILFA very helpful. They also felt it would be useful for newly diagnosed patients and their caregivers to be pointed to ILFA immediately upon diagnosis.

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“It’s a disease of families”: Neurologists’ insights on how to improve communication and quality of life for families of Parkinson’s disease patients

Objectives Parkinson’s disease presents an evolving challenge for patients and families due to an unpredictable disease trajectory and symptoms that complicate social interactions. In this study, we explore neurologists’ perspectives on the challenges Parkinson’s disease presents for families and the strategies they use to improve communication and quality of life. Methods We conducted hour-long semi-structured interviews with 16 neurologists at 4 care delivery institutions in the San Francisco Bay Area, focusing on techniques neurologists use to support families through the Parkinson’s disease journey. Results Neurologists identified strategies for addressing caregiver–patient disagreements around symptom accuracy and negotiating driving safety. Family education is needed to contextualize patient symptoms and to identify psychosocial support resources. Unmet caregiver needs remain, particularly in the form of psychosocial support, respite care and support for unequal gender dynamics in the Parkinson’s disease caregiving experience. Discussion Family members of Parkinson’s disease patients face unique caregiving and interpersonal challenges due to the nature of the disease. Targeted education and structural support are needed to alleviate current burdens and allow for improved patient- and family-centered care.

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Information seeking behavior and perceived health literacy of family caregivers of persons living with a chronic condition. The case of spinal cord injury in Switzerland

Objective: To examine the information seeking behavior and health literacy of caregivers of individuals living with spinal cord injury in Switzerland and their impact on the caregiving experience. Methods: Nationwide survey of family caregivers of people with spinal cord injury (N = 717). Caregivers aged 18+ who assisted with activities of daily living were included. Self-reported information seeking behavior, including topics, preferred sources, and health literacy were assessed and analyzed. Results: Health professionals were the most trusted source of information. Among information-seekers, higher health literacy levels were shown to be associated with lower subjective caregiver burden and, in turn, with higher caregivers' satisfaction with own health. Conclusion: Caregivers use information on different topics and coming from different sources. In order for information to improve the caregiving experience, however, caregivers need health literacy skills to make sense of it. Practice Implications: Building health literacy is a promising approach to support caregivers in their activities, reduce their subjective burden, and even to improve their health. Interventions should consider involving health professionals, as the most trusted source of information, and address both health-related and more practical issues. 

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Information Needs and Preferences of Family Caregivers of Patients With Amyotrophic Lateral Sclerosis

Supplemental digital content is available in the text. OBJECTIVE: The aim of this study was to explore the information needs and preferred sources of information of Korean family caregivers of patients with amyotrophic lateral sclerosis (ALS). METHODS: Family caregivers of patients with ALS (n = 108) completed a structured questionnaire to assess their information needs and preferred sources of information. RESULTS: Most of the caregivers obtained health information from Internet searches (89.8%) and healthcare professionals (85.2%). The source rated most helpful was healthcare professionals, and that rated least helpful was broadcast media. Family caregivers who were younger than 50 years and well educated and caregivers of bulbar-onset ALS patients had higher scores of information needs. CONCLUSION: Providing information through healthcare professionals and self-support groups could enhance family caregiver satisfaction. Family caregivers who are older and less educated need to be more empowered to be involved in information-based caring, and caregivers of patients with bulbar-onset ALS have substantial information needs.

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Informal carers and peer support in pulmonary rehabilitation: an underutilized resource?

Purpose of Review: The aim of this review is to discuss the recent literature relating to the involvement of informal carers and peer support in pulmonary rehabilitation.; Recent Findings: Informal carers and peer support have been identified by both patients and healthcare workers as a crucial component in the care of those with chronic respiratory disease at home. Pulmonary rehabilitation, a cornerstone in the management of patients with breathlessness, is limited in its clinical effectiveness by poor referral, uptake and completion rates. Engagement of informal carers and support from peers may help maximize the utilization of pulmonary rehabilitation.; Summary: This review highlights the need for more good-quality randomized controlled trials in identifying suitable interventions that may increase uptake and completion of pulmonary rehabilitation programmes. Qualitative studies have highlighted the potential for informal carers and peer support to play a key role in the design of research programmes, and in the delivery of pulmonary rehabilitation. This needs to be addressed in future research.

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Implementation of e-mental health interventions for informal caregivers of adults with chronic diseases: a protocol for a mixed-methods systematic review with a qualitative comparative analysis

Introduction: Informal caregivers provide the majority of care to individuals with chronic health conditions, benefiting the care recipient and reducing use of formal care services. However, providing informal care negatively impacts the mental health of many caregivers. E-mental health interventions have emerged as a way to provide accessible mental healthcare to caregivers. Much attention has been given to reviewing the effectiveness and efficacy of such interventions, however, factors related to implementation have received less consideration. Therefore, this mixed-methods systematic review will aim to examine factors associated with the effectiveness and implementation of e-mental health interventions for caregivers.; Methods and Analysis: Eligible studies published since 1 January 2007 will be searched for in several electronic databases (CINAHL Plus with Full Text, the Cochrane Library, EMBASE, PsycINFO, PubMed and Web of Science), clinical trial registries and OpenGrey, with all screening steps conducted by two independent reviewers. Studies will be included if they focus on the implementation or effectiveness of e-mental health interventions designed for informal adult caregivers of adults with cancer, heart disease, stroke, diabetes, dementia or chronic obstructive pulmonary disease. Pragmatic randomised controlled trials quantitatively reporting on caregiver anxiety, depression, psychological distress or stress will be used for a qualitative comparative analysis to identify combinations of conditions that result in effective interventions. Qualitative and quantitative data on implementation of e-mental health interventions for caregivers will be integrated in a thematic synthesis to identify barriers and facilitators to implementation. These results will inform future development and implementation planning of e-mental health interventions for caregivers.; Ethics and Dissemination: Ethical approval is not required for this study as no primary data will be collected. Results will be disseminated in the form of a scientific publication and presentations at academic conferences and plain language summaries for various stakeholders.; Prospero Registration Number: CRD42020155727. 

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The impact of caregiving on the health status of regional carers in Australia: Findings from a mixed‐method study

While it is known that informal carers provide the majority of caregiving in Australia, there remains limited understanding of the challenges that regional carers face in their caring role and the impact of the caregiving role on carer well‐being. Objective: The aim of this study was to better understand the health status of caregivers as the person they care for was entering the National Disability Support Scheme. Design: This is a mixed‐methods study. Setting: The study was undertaken in regional New South Wales, Australia. Participants: Seventy‐five carers were enrolled into the study. All lived in regional New South Wales. Main outcome measure: The World Health Organization Well‐being Index was used for quantitative data collection, and semi‐structured interviews were undertaken for the collection of qualitative data. Result: Quantitative data indicated that carers from Aboriginal or Torres Strait Islander backgrounds and those from low socio‐economic status had significantly lower scores on the well‐being index. Two key qualitative categories were evident describing carer's journey to resilience by (a) adjusting to reality predominantly through cognitive reframing strategies and (b) carers accessing external supports. Conclusion: The health status of regional carers who are predominantly women is experiencing low levels of well‐being. While many of these carers have initiated successful coping responses to the challenges of caring, there is an urgent need to increase the supports available to this population. As the recent National Disability Support Scheme is embedded, it is of importance to monitor if there are improvements in the health status of carers over time. 

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How primary caregivers of individuals with multiple sclerosis cope with social isolation: a grounded theory study in an Iranian context

Background/aims Multiple sclerosis is a progressive neurological disease that can significantly impact the psychosocial aspects of primary caregivers of individuals with multiple sclerosis. This study explored the process of social isolation among primary caregivers of individuals with multiple sclerosis in Kerman, Iran. Methods A grounded theory approach was employed to explore the various aspects of social isolation. Data were collected through unstructured and semi-structured interviews with 15 primary caregivers of individuals with multiple sclerosis, 13 individuals with multiple sclerosis and five health care providers who were selected based on purposeful and theoretical sampling. The data were analysed via constant comparative analysis. Results The core variable identified from the interviews was social isolation. Other concepts that were connected with this were: insufficient knowledge and awareness, escaping stigma, occupational difficulties, marital challenges and management of restrictions. Conclusions Social isolation can affect the wellbeing of primary caregivers of individuals with multiple sclerosis. Recognition and awareness of the process of social isolation and factors influencing it can be beneficial in designing theory-driven evaluation and intervention methods. It is recommended that rehabilitation specialists pay close attention to the common needs and interests of both individuals with multiple sclerosis and their primary caregivers.

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"How Long Can I Carry On?" The Need for Palliative Care in Parkinson's Disease: A Qualitative Study from the Perspective of Bereaved Family Caregivers

Background: Family caregivers provide the majority of care for people with Parkinson's disease (PD) in the palliative care phase. For many this is a demanding experience, affecting their quality of life. Objective: We set out to map the experiences of bereaved family caregivers during the period of informal care in the palliative care phase as well as after the death of their loved one with PD. Methods: Ten bereaved family caregivers participated in this qualitative study. Semi-structured interviews were conducted and interpretative phenomenological analysis was used executed. Results: We identified four main themes. 1) Feeling like a professional caregiver: while caring for a person with PD, the family caregivers took over many roles and tasks of the person with PD. 2) Healthcare professionals do not always know what PD really means: most interviewees had negative experiences with knowledge and understanding of PD of, especially, (practice) nurses. 3) Being on your own: many respondents had felt highly responsible for their loved one's care and lacked time and space for themselves. Grief and feelings of guilt were present during the caregiving period and after death. 4) Being behind the times: to provide palliative care in line with patients' preferences and to feel prepared for the palliative care phase of PD, proactive palliative care planning was considered important. However, the interviewees told that this was most often not provided. Conclusion: These findings indicate that caring for a person with PD in the palliative care phase is a demanding experience for family caregivers. They experience psychological problems for many years before and after the death of the person with PD. Increasing healthcare professionals' awareness of family and bereaved caregivers' needs may mitigate these long-term detrimental effects.

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Health-care use and cost for multimorbid persons with dementia in the National Health and Aging Trends Study

Background: Most persons with dementia have multiple chronic conditions; however, it is unclear whether co-existing chronic conditions contribute to health-care use and cost. Methods: Persons with dementia and >= 2 chronic conditions using the National Health and Aging Trends Study and Medicare claims data, 2011 to 2014. Results: Chronic kidney disease and ischemic heart disease were significantly associated with increased adjusted risk ratios of annual hospitalizations, hospitalization costs, and direct medical costs. Depression, hypertension, and stroke or transient ischemic attack were associated with direct medical and societal costs, while atrial fibrillation was associated with increased hospital and direct medical costs. No chronic condition was associated with informal care costs. Conclusions: Among older adults with dementia, proactive and ambulatory care that includes informal caregivers along with primary and specialty providers, may offer promise to decrease use and costs for chronic kidney disease, ischemic heart disease, atrial fibrillation, depression, and hypertension.

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Suitability and acceptability of the Carer Support Needs Assessment Tool (CSNAT) for the assessment of carers of people with MND: a qualitative study

Objectives Motor neurone disease (MND) is a progressive, life-limiting illness. Caregiving impacts greatly on family carers with few supportive interventions for carers. We report Stages 1 and 2 of a study to: (1) explore experiences of MND caregiving and use carer-identified support needs to determine suitability and acceptability of the Carer Support Needs Assessment Tool (CSNAT), (2) adapt the CSNAT as necessary for comprehensive assessment and support of MND carers, prior to (Stage 3) feasibility testing. Design Qualitative: focus groups, interviews and carer workshops.Setting Three UK MND specialist centres serving a wide range of areas. Participants Stage 1: 33 carers, 11 from each site: 19 current carers, 14 bereaved. Stage 2: 19 carer advisors: 10 bereaved, 9 current carers. Majority were spouses/partners ranging in age from under 45 years to over 75 years. Duration of caring: 4 months to 12.5 years. Results Carers described challenges of a disease that was terminal from the outset, of ‘chasing’ progressive deterioration, trying to balance normality and patient independence against growing dependence, and intensive involvement in caregiving. Carers had extensive support needs which could be mapped to existing CSNAT domains: both ‘enabling’ domains which identify carers’ needs as co-workers as well as carers’ ‘direct’ needs as clients in relation to their own health and well-being. Only one aspect of their caregiving experience went beyond existing domains: a new domain on support needs with relationship changes was identified to tailor the CSNAT better to MND carers. Conclusions Carers of people with MND found the adapted CSNAT to be an appropriate and relevant tool for assessment of their support needs. The revised version has potential for assessment of carers in other longer-term caring contexts. A further paper will report the Stage 3 study on feasibility of using the adapted CSNAT in routine practice.

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Functional health literacy and caregiving burden among family caregivers of patients with end‐stage renal disease

Family caregivers of patients with end‐stage renal disease (ESRD) experience significant caregiver‐related burden, yet the contribution of their functional health literacy (FHL) to caregiving burden has not been elucidated. We investigated the magnitude of FHL and caregiving burden and their association in a descriptive, correlational cross‐sectional study of family caregivers of Jordanian patients with ESRD (N = 88). The short versions of the FHL for Adults and the Zarit Burden Interview were used for assessment of caregivers. Demographic and clinical information of patients and their family caregivers were self‐reported. Of family caregivers, 41% had limited FHL and 38% experienced high caregiver burden. FHL and history of comorbidity in family caregivers predicted caregiving burden independent of demographic and clinical factors. Consideration of FHL in support interventions for family caregivers may minimize some of the high perceived caregiving burden, but clinical trials of such interventions are needed to confirm this conclusion.

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Financial stress experienced by informal carers of adults with a chronic disease: Results from an Australian population‐based cross‐sectional survey

Objective: To identify caregiving characteristics that are associated with financial stress in Australian carers of people with a chronic disease. Methods: Data were collected via the South Australian Health Omnibus, an annual population‐based, cross‐sectional survey. Individuals who provided care to someone with prevalent chronic conditions were asked about financial stress and caregiving characteristics. Results: Of 32.4% (988/3047) who were carers, 13.4% (132/988) experienced financial stress. Adjusting for age and household income, providing more than 20 hours of care per week (AOR = 2.39, 95% CI = 1.48‐3.86), transport assistance (AOR = 1.89, 95% CI = 1.15‐3.09) and assistance with household tasks (AOR = 1.92, 95% CI = 1.14‐3.26) and caring for a person with a mental illness (AOR = 2.01, 95% CI = 1.24‐3.28) were associated with a significant increase in odds of experiencing financial stress. Caring for a person with cancer (AOR = 0.49, 95% CI = 0.30‐0.81) or dementia (AOR = 0.40, 95% CI = 0.21‐0.76) was associated with decrease in odds. Conclusions: Financial stress was reported by more than 13% of carers, and factors other than household income were implicated.

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Family Caregiving for Individuals With Heart Failure: A Scientific Statement From the American Heart Association

Many individuals living with heart failure (HF) rely on unpaid support from their partners, family members, friends, or neighbors as caregivers to help manage their chronic disease. Given the advancements in treatments and devices for patients with HF, caregiving responsibilities have expanded in recent decades to include more intensive care for increasingly precarious patients with HF-tasks that would previously have been undertaken by healthcare professionals in clinical settings. The specific tasks of caregivers of patients with HF vary widely based on the patient's symptoms and comorbidities, the relationship between patient and caregiver, and the complexity of the treatment regimen. Effects of caregiving on the caregiver and patient range from physical and psychological to financial. Therefore, it is critically important to understand the needs of caregivers to support the increasingly complex medical care they provide to patients living with HF. This scientific statement synthesizes the evidence pertaining to caregiving of adult individuals with HF in order to (1) characterize the HF caregiving role and how it changes with illness trajectory; (2) describe the financial, health, and well-being implications of caregiving in HF; (3) evaluate HF caregiving interventions to support caregiver and patient outcomes; (4) summarize existing policies and resources that support HF caregivers; and (5) identify knowledge gaps and future directions for providers, investigators, health systems, and policymakers.

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Experiences on Providing Home Care for A Relative with Heart Failure: A Qualitative Study

The aim of this study was to explore and describe the lived experiences of persons providing home care for community-dwelling relative with heart failure (HF) in Jordan. Design: It was a phenomenological study. Methods: Data were collected through interviews with 29 participants and analyzed using a thematic analysis approach. Findings: Four core themes have emerged: caregiving as a mandatory responsibility, positive experiences, negative experiences, and factors influencing the quality of the experiences. Conclusion: Although the hallmark of the participants' experience was negative, they showed a strong commitment to caring for their ill relatives. Clinical Evidence: The findings underscore the need for frequent assessment and support of family caregivers. 

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The Experiences of Multiple Sclerosis Patients' Family Caregivers at the First Hospitalization of Their Patients: A Qualitative Study

Background and Aim: Being diagnosed with multiple sclerosis is usually accompanied by emotional trauma for patients and their families. The chronic, progressive, and unpredictable nature of the disease spells the patients' long-term need for care from their families. As soon as a diagnosis is made, family caregivers are faced with many challenges. The present study aims to identify family caregivers' experiences at the first hospitalization of their patients. Materials and Methods: The present study is a work of qualitative research and uses the conventional content analysis approach. It lasted from July 2019 to March 2020. The subjects were selected via purposeful sampling. To collect data, the researchers conducted in-depth, semi-structured interviews with 18 family caregivers of patients with multiple sclerosis. The collected data were analyzed using MAXQDA 2007. Results: Analysis of the data yielded three themes: peaceful environment, need for continuing full support, and religion-based coping strategies. Conclusion: The findings of the present study can be used to develop support programs that address family caregivers' problems and needs to assist them in accepting and coping with the conditions of their patients, thereby increasing the quality of care provided to patients with multiple sclerosis. 

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Experiences and perspectives of the parents of emerging adults living with type 1 diabetes

Introduction Whereas it is widely recognized that emerging adulthood can be a difficult time in the life of an individual living with type 1 diabetes, relatively little is known about the experiences of their parents or guardians. These individuals once shouldered much of the burden for their child's diabetes 'self'-management, yet their contribution is often overlooked by the adult healthcare system. Here, we set out to gain an understanding of the perspectives of parents of emerging adults living with type 1 diabetes. Research design and methods Semi-structured interviews were performed with a purposeful sample of parents of emerging adults with type 1 diabetes recruited from two urban young adult diabetes clinics and through a national diabetes charity. Thematic coding was derived using a constant comparative approach. Results Analysis of interviews with 16 parents of emerging adults with type 1 diabetes identified three themes: parental experiences of the transition to adult care; negotiating parent-child roles, responsibilities and relationships; and new and evolving fears. Parents spoke in detail about the time surrounding their child's diagnosis of type 1 diabetes to emphasize the complexity of diabetes care and the need to establish a 'new normal' for the family. In turn, adolescence and emerging adulthood required a renegotiation of roles and responsibilities, with many parents continuing to play a role in high-level diabetes management. Several parents of emerging adults with type 1 diabetes (particularly those of young men) vocalized worries about their child's readiness to assume responsibility for their self-care, and some expressed frustration with the apparent dichotomy in the role expectations of parents between the pediatric and adult care settings. Conclusions Adult healthcare providers should recognize both the ongoing involvement of parents in the 'self'-management of emerging adults with type 1 diabetes and the unique aspects of the caregiver burden that they experience.

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The experience of family caregivers caring for a patient with chronic disorders of consciousness: a qualitative content analysis

Background: Management of a patient with chronic disorders of consciousness is a long-term and stressful situation for family caregivers. Aims: The aim of this study was to describe the experiences of family caregivers of patients with chronic disorders of consciousness. Methods: Purposeful sampling was used, data were collected through semi-structured, in-depth interviews at participants' homes. Data were analysed using qualitative content analysis. Findings: Results indicated that family caregivers of patients with chronic disorders of consciousness face many difficulties in providing care to vegetative state (VS) and minimally conscious state (MCS) patients; they experience it as a challenging type of care, which influences their mental health. Conclusion: Family caregivers are faced with many challenges because of the high burden of care, round-the-clock concern, taking care of an alive but unresponsive patient without receiving enough support. They experience mental and inner turmoil because of social isolation and dealing with contradictory feelings in their daily life.

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Examining the support needs of older male spousal caregivers of people with a long‐term condition: A systematic review of the literature

Aim The aim of this review was to identify and synthesise literature reporting on support needs of older male caregivers, who are providing care for a chronically ill spouse/partner at home. Background Traditionally, informal caregiving has been perceived as a feminised activity. Consequently, caregiving research has been dominated by female samples, and male caregivers are grossly under‐represented. Given the growing recognition of caregiving as a gendered concept, and the rise in number of male caregivers, particularly in later life, the need for better understanding of the needs of male caregivers is important in order to plan effective support for this population. Design A systematic literature review. Methods Four electronic databases and grey literature were systematically searched. Results The systematic search resulted in 3,646 papers, eligibility criteria were applied to the full texts of 104 papers, and 11 papers met the inclusion criteria. Two core themes were identified: the need to maintain masculinity and the provision of social support. Conclusion Findings suggest that men may have a gendered approach to caregiving based on dominant masculine norms. This can be manifested in a reluctance to ask for or accept help and a desire to retain control over caregiving. Findings also revealed isolation and loneliness experienced by older male caregivers, along with a preference for support to address this within a male‐specific context. It is suggested that healthcare professionals should be cognisant of the male caregiver approach and should have an increased awareness of male caregivers support preferences, and of their own gendered assumptions, in order to provide effective support for this population. Implications for practice Nurses have a key role in providing family support. Findings from this review suggest that nurses should be aware of the specific needs of older male spousal caregivers if they are to provide effective care and support to this population group.

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Evaluation of a psychoeducational intervention compared with education in people with Parkinson's disease and their informal caregivers: a quasi‐experimental study

Aim: To evaluate the effects of a psychoeducational intervention compared with an education programme to strengthen quality of life, psychosocial adjustment, and coping in people with Parkinson's disease and their informal caregivers. Design: A quasi‐experimental study was performed with repeated measures at baseline, after the intervention and 6 months post‐intervention. Methods: The study was carried out at seven primary care centres from 2015‐2017. A total of 140 people with Parkinson's and 127 informal caregivers were allocated to the experimental and the control groups. The experimental group received a 9‐week psychoeducational intervention, whereas the control group received a 5‐week education programme. Repeated measures ANOVA were used to test differences in quality of life, psychosocial adjustment, and coping between the experimental and control groups and over time. Results: Patients and informal caregivers in both the experimental and control groups showed significantly better psychosocial adjustment at the post‐intervention measurement compared with baseline data. We also found significantly greater quality of life in patients and coping skills in caregivers after the end of the interventions in the experimental and control groups. Nevertheless, no significant differences were identified on the outcomes at the 6‐month post‐intervention measurement. Conclusion: The effect of the psychoeducational intervention was not different from the effect of the education programme. The strategies applied in both interventions followed a group approach led by a multidisciplinary team covering information about PD, healthy lifestyles, and social resources. They might be easily sustained in Primary Care to improve care for people with Parkinson's and informal caregivers.

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Efficacy of a Smartphone App Intervention for Reducing Caregiver Stress: Randomized Controlled Trial

Background: Caregivers play a pivotal role in maintaining an economically viable health care system, yet they are characterized by low levels of psychological well-being and consistently report unmet needs for psychological support. Mobile app-based (mobile health [mHealth]) interventions present a novel approach to both reducing stress and improving well-being.; Objective: This study aims to evaluate the effectiveness of a self-guided mobile app-based psychological intervention for people providing care to family or friends with a physical or mental disability.; Methods: In a randomized, single-blind, controlled trial, 183 caregivers recruited through the web were randomly allocated to either an intervention (n=73) or active control (n=110) condition. The intervention app contained treatment modules combining daily self-monitoring with third-wave (mindfulness-based) cognitive-behavioral therapies, whereas the active control app contained only self-monitoring features. Both programs were completed over a 5-week period. It was hypothesized that intervention app exposure would be associated with decreases in depression, anxiety, and stress, and increases in well-being, self-esteem, optimism, primary and secondary control, and social support. Outcomes were assessed at baseline, postintervention, and 3-4 months postintervention. App quality was also assessed.; Results: In total, 25% (18/73) of the intervention participants were lost to follow-up at 3 months, and 30.9% (34/110) of the participants from the wait-list control group dropped out before the postintervention survey. The intervention group experienced reductions in stress (b=-2.07; P=.04) and depressive symptoms (b=-1.36; P=.05) from baseline to postintervention. These changes were further enhanced from postintervention to follow-up, with the intervention group continuing to report lower levels of depression (b=-1.82; P=.03) and higher levels of emotional well-being (b=6.13; P<.001), optimism (b=0.78; P=.007), self-esteem (b=-0.84; P=.005), support from family (b=2.15; P=.001), support from significant others (b=2.66; P<.001), and subjective well-being (b=4.82; P<.001). On average, participants completed 2.5 (SD 1.05) out of 5 treatment modules. The overall quality of the app was also rated highly, with a mean score of 3.94 out of a maximum score of 5 (SD 0.58).; Conclusions: This study demonstrates that mHealth psychological interventions are an effective treatment option for caregivers experiencing high levels of stress. Recommendations for improving mHealth interventions for caregivers include offering flexibility and customization in the treatment design.; Trial Registration: Australian New Zealand Clinical Trial Registry ACTRN12616000996460; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=371170. 

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The effect of neuropalliative care on quality of life and satisfaction with quality of care in patients with progressive neurological disease and their family caregivers: an interventional control study

Background: It is recommended that patients with progressive neurological disease (PND) receive general and specialized palliative care. The purpose of this study was to determine the effect of neuropalliative care on quality of life (QoL) and satisfaction with provided care in both patients with PND in advanced stages of disease and their family caregivers. Methods: The sample consisted of 151 patients with PND and 140 family caregivers. The PNDQoL questionnaire was used for data collection. Patients and family caregivers completed the questionnaires both before and 3 months after the intervention. Results: Before intervention, there were no statistically significant differences in the individual domains of QoL in patients and family caregivers in either the intervention or the control group. After intervention, differences were identified in the sample of patients in the domains of symptoms burden (p < 0.001), emotional (p < 0.001), social functioning (p = 0.046), spiritual area (nonreligious) (p = 0.050), and in QoL. In the sample of family caregivers, there were differences in the domains of symptoms burden (p < 0.001), emotional functioning (p = 0.016), spiritual area (nonreligious) (p = 0.042), and in the assessment of health (p = 0.002), and QoL (p = 0.002). Patients and family caregivers from the intervention group evaluated their satisfaction with the quality of care provided significantly more positively in all five analyzed domains. Conclusion: The provision of neuropalliative care to patients with advanced stages of PND helped to maintain and slightly improve their QoL, and symptoms burden, and resulted in a more positive assessment of satisfaction with the quality of care provided. 

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The role of formal care services in supporting young people who provide unpaid care in England

A large proportion of long-term care for people with disabilities and/or long-term health conditions is provided by unpaid carers, including young people, with potential impacts on their education, employment and health. Supporting carers is a focus of long-term care practice and policy in many countries. A key part of this support in England is through provision of services to the person with care needs (often called 'replacement' care). We aimed to explore the role of replacement care services in supporting young adult carers' health, education, and employment. We used a mixed-methods approach: self-completed questionnaires and in-depth follow-on interviews. We found ways in which services supported young adult carers but, contrary to previous research, receipt of services by the person with care needs was not associated with better reported carer outcomes in our survey. One key reason for this finding was that not enough services were received to meet care needs and alleviate unpaid caring to a level or type compatible with better outcomes. The wider economic and political context of our study, during fiscal austerity and cuts to social care budgets, and the particular circumstances of young adult carers may offer further explanations.

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Effect of lower extremity amputation on caregiving burden in caregivers of patients with diabetic foot: Prospective cohort study

Lower extremity amputation as a treatment of diabetic foot ulcer is probably a major burden for the patient's family and friends, who typically act as caregivers and support the patient in coping with the physical disabilities and emotional distress. In the present prospective study, we investigated the effects of different lower extremity amputation levels for diabetic foot ulcer treatment on caregivers of patients with diabetes using the Zarit Burden Interview (ZBI‐12) scale. Patients with diabetic foot ulcers who underwent unilateral major amputation (above‐below knee) and minor amputation of foot (heel sparing) and their caregivers were requested to volunteer to participate in this study from June 2016 to December 2018. The ZBI‐12 form was completed immediately preoperatively and 3 and 6 months after postoperatively. In the minor amputation group, the mean age of the 51 patients was 72.1 years. In the major amputation group, the mean age of the 88 patients was 73.7 years. Both groups of caregivers of patients with minor amputation and major amputations showed a significant improvement in ZBI‐12 score when compared preoperatively and at 3‐ and 6‐month follow‐up visits. The mean ZBI‐12 score was significantly higher in the major than in the minor amputation group in preoperative and all postoperative visits. The absence of the ankle joint in the below‐ or above‐knee amputation renders it more difficult for the amputee to quickly learn the use of prosthesis, thereby increasing the burden of the patient and caregivers. We found that lower extremity amputation for the treatment of chronic diabetic foot ulcers has significantly favourable effect on the caregiver burden, and thereby heel sparing was considerably more effective for the caregiver burden.

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Economic burden of the persistent morbidity of nodding syndrome on caregivers in affected households in Northern Uganda

Background Nodding syndrome (NS), is an unexplained form of epilepsy which leads to stunted growth, cognitive decline, and a characteristic nodding of the head. Current data about its impact on households in Uganda is scarce. Therefore, this study aims to assess the economic burden of the persistent morbidity of NS on caregivers in affected households in Northern Uganda. Methods A cross-sectional cost-of-care study was conducted from January 2019 to February 2019 in Lakwela village-Northern Uganda in 14 households, who are members of a community-based organization (CBO) established in the village with the support of a Japanese research team, (Uganda-Japan Nodding Syndrome Network). Data was collected through questionnaires. Both direct (medical and non-medical) and indirect (informal care) costs of caregiving were assessed. Indirect costs were valued using the human-capital method as loss of production. Results Direct costs constituted a higher proportion of costs for NS households, accounting for on average 7.7% of household expenditure. The annual weighted mean cost per NS patient was estimated at 27.6 USD (26.4 USD direct costs, 96.2% and 1.2 USD indirect cost, 3.8%). Average time spent on informal caregiving was 4.4 +/- 1.7 (standard deviation) hours/week with an estimated annual informal caregiving cost of 24.85 USD and gross domestic product (GDP) loss of 412.40 USD. Conclusion Direct costs due to NS are still high among households in this study. More studies are needed to investigate measures that could help bring down these costs and equally reduce the day-to-day disruption of caregiver's activities; consequently, improving the lives of these affected households and communities.

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Dysphagia-Related Caregiver Burden: Moving Beyond the Physiological Impairment

Purpose: The biopsychosocial ramifications of dysphagia are widespread. However, its influence on informal caregivers and families is often overlooked. Ultimately, the health and well-being of an entire family is central to care provision. This tutorial introduces readers to the current literature on dysphagia-related caregiver burden and third-party disability, illustrates the consequences of such burden on both caregivers and patients, and suggests strategies for better supporting patients' informal caregivers. Conclusions: It is essential that speech-language pathologists recognize that the consequences of dysphagia are not limited to the impairment itself and acknowledge dysphagia's substantial impact on the entire family system. More general health care literature suggests that asking caregivers individual questions, modifying the language used to talk with them, providing them with targeted education and resources, and organizing support groups may all be beneficial for increased perceived support and self-efficacy. Ultimately, in order to best meet the needs of our patients with dysphagia, we must also better meet the needs of their families and other informal caregivers.

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Does the carer support needs assessment tool cover the established support needs of carers of patients with chronic obstructive pulmonary disease? A systematic literature search and narrative review

Background: Informal carers play a key supportive role for patients with chronic obstructive pulmonary disease. However, caring can have a considerable impact on health and wellbeing. Carers may have unidentified support needs that could be a target for intervention. Literature on the support needs of informal carers has not been fully synthesised, and our knowledge of the comprehensiveness of the Carer Support Needs Assessment Tool for these individuals is limited. Aim: To explore whether the Carer Support Needs Assessment Tool covers the support needs of carers of patients with chronic obstructive pulmonary disease identified in published literature. Design: English language studies were identified against predetermined inclusion/exclusion criteria through database searching. Further studies were identified through searching reference lists and citations of included papers. Papers were critically appraised and data extracted and synthesised by two reviewers. Identified needs were mapped to Carer Support Needs Assessment Tool questions. Data sources: MEDLINE, CINAHL, EMBASE, CDSR, ASSIA, PsycINFO and Scopus databases (Jan 1997–Dec 2017). Results: Twenty-four studies were included. Results suggest that carers have support needs in a range of domains including physical, social, psychological and spiritual. Many of these needs are unmet. Particular areas of concern relate to prolonged social isolation, accessing services, emotional support and information needs. Findings also suggest amendment of the Carer Support Needs Assessment Tool may be required relating to difficulties within relationship management. Conclusion: Evidence suggests that carers of patients with chronic obstructive pulmonary disease would benefit from identification and response to their support needs by healthcare professionals but to enable this, the Carer Support Needs Assessment Tool requires an additional question. Future planned work will explore this with carers of patients with chronic obstructive pulmonary disease.

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Do caregivers' personality and emotional intelligence modify their perception of relationship and communication with people with aphasia?

Background: There is a wide agreement that family and friends of people with aphasia (PWA) can play a crucial role in the rehabilitation of interpersonal communication. Therefore, speech and language therapists (SLTs) should include family and friends in the process of therapy. However, little has been said about the role of caregivers of severely disabled PWA in the rehabilitation of communication functions. Aims: To examine how caregivers of severely disabled PWA perceive their relationship and communication with PWA, how they facilitate communication with PWA, and whether the caregiver's personality and emotional intelligence modify the abovementioned processes. Methods & Procedures: The study involved 123 caregivers of severely disabled stroke survivors with aphasia. Participants took part in a structured interview based on a structured interview guide created for the purpose of this study. The standardized psychological questionnaires NEO Five‐Factor Inventory (NEO‐FFI) and Schutte Emotional Intelligence Scale (SEIS) were used. Outcomes & Results: The caregiver's positive attitude towards the PWA correlated with the active facilitation of communication. The personality traits of caregivers and their level of emotional intelligence were associated with the tendency to use certain techniques to facilitate communication with PWA. Conclusions & Implications: Caregivers' positive attitude towards PWA is beneficial for the rehabilitation of communicative functions. Personality traits and emotional intelligence could modify the caregiver's strategy of coping with aphasia‐related challenges and should be taken into consideration when providing support. What this paper addsWhat is already known on the subjectInterpersonal communication must by definition involve at least two people. Therefore, there are a lot of approaches in SLT where support is given not only to the PWA but also to the communication partners. The most important group is significant others, which is usually understood as family members and friends. There is an increasing recognition that SLTs should include them in therapy.

What this paper adds to existing knowledge: For those PWA who need constant care, caregivers may have a significant influence on the quality of communication. Their positive attitude towards PWA corresponds with more active facilitation of communication and can make rehabilitation more efficacious. Caregivers should be educated on the cognitive and behavioural aspects of aphasia and encouraged to look actively for a PWA's positive characteristics. Caregivers' personality traits play a role in facilitating communication. For example, caregivers with high agreeableness are more likely to enjoy providing care, while those with higher conscientiousness declare using more techniques to facilitate communication with the PWA. What are the potential or actual clinical implications of this work? Caregivers' personality traits play a role in caring. Their positive attitude towards PWA corresponds to more active facilitation of communication, which can lead to more effective rehabilitation. This should be taken into account when training caregivers. Training programmes should include cognitive and behavioural aspects of aphasia as well as emphasize the need to maximize the PWA's abilities. 

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Diabetes-Related Topics in an Online Forum for Caregivers of Individuals Living With Alzheimer Disease and Related Dementias: Qualitative Inquiry

Background: Diabetes and Alzheimer disease and related dementias (ADRD) are the seventh and sixth leading causes of death in the United States, respectively, and they coexist in many older adults. Caring for a loved one with both ADRD and diabetes is challenging and burdensome.Objective: This study aims to explore diabetes-related topics in the Alzheimer's Association ALZConnected caregiver forum by family caregivers of persons living with ADRD. Methods: User posts on the Alzheimer's Association ALZConnected caregiver forum were extracted. A total of 528 posts related to diabetes were included in the analysis. Of the users who generated the 528 posts, approximately 96.1% (275/286) were relatives of the care recipient with ADRD (eg, child, grandchild, spouse, sibling, or unspecified relative). Two researchers analyzed the data independently using thematic analysis. Any divergence was discussed among the research team, and an agreement was reached with a senior researcher's input as deemed necessary. Results: Thematic analysis revealed 7 key themes. The results showed that comorbidities of ADRD were common topics of discussions among family caregivers. Diabetes management in ADRD challenged family caregivers. Family caregivers might neglect their own health care because of the caring burden, and they reported poor health outcomes and reduced quality of life. The online forum provided a platform for family caregivers to seek support in their attempts to learn more about how to manage the ADRD of their care recipients and seek support for managing their own lives as caregivers. Conclusions: The ALZConnected forum provided a platform for caregivers to seek informational and emotional support for caring for persons living with ADRD and diabetes. The overwhelming burdens with these two health conditions were apparent for both caregivers and care recipients based on discussions from the online forum. Studies are urgently needed to provide practical guidelines and interventions for diabetes management in individuals with diabetes and ADRD. Future studies to explore delivering diabetes management interventions through online communities in caregivers and their care recipients with ADRD and diabetes are warranted.

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Development of a psychosocial intervention to support informal caregivers of people with end-stage kidney disease receiving haemodialysis

Background Patients with end-stage kidney disease, receiving haemodialysis rely increasingly on informal carers to help manage their debilitating chronic disease. Informal carers may experience a negative impact on their quality of life exacting a toll on their physical, social and emotional well-being. Informal carers of patients with end-stage kidney disease receiving haemodialysis have significant unmet needs which may include physical and psychological issues, financial disadvantage and social isolation. Poor experiences of informal carers may also impact the experience of the patients for whom they care. The needs of this group of informal caregivers have been largely neglected, with little emphasis placed on supportive interventions that might assist and support them in their caring role. The aim of this study is therefore to explore the experiences and unmet needs of informal carers of people with end-stage kidney disease receiving haemodialysis and develop a psychosocial intervention to support them in their caring role. Methods This qualitative study will include a systematic review, semi-structured interviews with 30 informal carers and focus groups with renal health care professionals. Perceptions of care provision, caregiving experiences as well as contextual factors impacting the design and delivery of a psychosocial intervention for informal carers of patients with end-stage kidney disease, will be explored and will inform the development of a supportive intervention. Discussion The needs of informal carers of patients with end-stage kidney disease have been neglected with little emphasis placed on supportive interventions that might assist and support this group in their care giving role. This is in contrast to other chronic disease groups such as stroke, cancer and dementia. In these conditions well developed supportive interventions have significantly improved outcomes in regard to informal caregivers' preparedness, competence, positive emotions and psychological well-being in terms of informal care provision. Support interventions could potentially improve the quality of life of those informal carers who provide care to patients with end-stage kidney disease receiving haemodialysis.

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Determinants of caregiver burden of persons with disabilities in a rural district in Egypt

Background: Family caregivers are critical partners in the plan of care of people with disabilities. The study aims to demonstrate the factor structure and internal consistency of the Caregiver Burden Inventory (CBI) among the studied caregivers of disabled persons and to determine the effects of patients' and caregivers' characteristics on the burden and its dimensions. Methods: A cross-sectional study among 260 family caregivers of disabled patients was carried out in a randomly chosen rural area, Minia, Egypt, 2019. Exploratory factor analysis (EFA) was conducted to determine the factorial validity of the CBI. Multiple linear regression was used to identify the significant factors affecting the burden. Results: Factor analysis resulted in a five-factor solution using 20 items (four for each dimension) accounting for 72.7% of the total variance. The CBI and its dimensions showed high internal consistency (Cronbach's alpha value > 0.70). Education of caregiver, family income, mental impairments, and mixed disabilities were significant predictors of total CBI burden. Conclusions: CBI is an effective multidimensional measure of the caregiver burden of disabled subjects. Caregivers experienced a distinct level of burden that is determined by caregiver and care recipient characteristics. Therefore, support and individualized counseling services should be optimized.

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Cross‐cultural differences in Parkinson's disease caregiving and burden between the United States and Mexico

Introduction: Given the rapidly aging population in both the United States and Mexico, rates of Parkinson's disease (PD) are likely to rise in both countries, suggesting that the number of individuals providing informal care will also increase, and the healthcare system will have to consider the burden this places upon caregivers. Therefore, the purpose of the current study was to examine differences in PD caregiving and burden between the United States and Mexico. Methods: Data were collected from PD caregivers in the Parkinson's Clinic at the Hospital Civil Fray Antonio Alcalde in Guadalajara, Mexico (N = 148) and the Parkinson's and Movement Disorders Center at Virginia Commonwealth University in Richmond, Virginia (N = 105) regarding caregiver demographics and self‐reported burden. Results: Despite considerably more time spent in caregiving duties, higher rates in unemployment or underemployment, and lower education levels, Mexican PD caregivers reported significantly less personal strain and role strain than did their United States counterparts. Even after controlling for these and other demographic differences between the two sites, the differences in caregiver burden remained. Conclusions: Latino cultural values in Mexico encouraging the importance of caring for family members with PD and respecting elders may promote caregiving and even make it a point of cultural pride, helping to overcome potential negative effects on caregivers seen in the United States. The scientific and medical communities should view caregiving as a culturally embedded and potentially positive role, rather than predominantly as burdensome as frequently conceptualized in Western or Eurocentric cultures. 

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Comprehensive support of family caregivers: Are there health system cost offsets?

Objectives: To examine the effect of the Department of Veterans Affairs' (VA) Program of Comprehensive Assistance for Caregivers (PCAFC) on total VA health care costs for Veterans. Data Sources: VA claims. Study Design: Using a pre-post cohort design with nonequivalent control group, we estimated the effect of PCAFC on total VA costs up through 6 years. The treatment group included Veterans (n = 32 394) whose caregivers enrolled in PCAFC. The control group included an inverse probability of treatment weighted sample of Veterans whose caregivers were denied PCAFC enrollment (n = 38 402). Data Extraction: May 2009-September 2017 Principal Findings: Total VA costs pre-PCAFC application date were no different between groups. Veterans in PCAFC were estimated to have $13 227 in VA costs in the first 6 months post-PCAFC application, compared to $10 806 for controls. Estimated VA costs for both groups decreased in the first 3 years with a narrowing, but persistent and significant, difference, through 5.5 years. No significant difference in VA health care costs existed at 6 years, approximately $10 000 each, though confidence intervals reflect significant uncertainty in cost differences at 6 years. Conclusions: Increased costs arose from increased outpatient costs of participants. Sample composition changes may explain lack of significance in cost differences at 6 years because these costs comprise of early appliers to PCAFC. Examining 10-year costs could elucidate whether there are long-term cost offsets from increased engagement in outpatient care. 

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Challenges and support service preferences of informal caregivers of people with systemic sclerosis: a cross-sectional survey

Purpose: To evaluate the importance of different challenges experienced by informal caregivers to persons with systemic sclerosis (SSc) and identify priorities for support services that could be developed. Materials and Methods: Caregivers of people with SSc from three continents completed an online questionnaire to rate the importance of possible caregiver challenges and likelihood of using different forms of support services. Importance of challenges and likelihood of using support services were rated from 1 (not important; not likely to use) to 4 (very important; very likely to use). Results: Two hundred and two informal caregivers completed the survey (79 women, 123 men). Mean age was 58 years (standard deviation = 13). The most important challenges were related to supporting the care recipient with emotional difficulties and physical discomfort. Caregivers indicated that they would be more likely to use support services that involved online or hard-copy information resources, including those provided soon after diagnosis, compared to support that involved interacting with others. Conclusions: Supporting the care recipient in managing emotional difficulties and physical discomfort were important challenges among caregivers. Interventions delivered through hardcopy or online resources, including those delivered soon after the care recipient's diagnosis, were rated as being most likely to be used by caregivers. Many caregivers for individuals with systemic sclerosis report struggling to support their care recipient with emotional difficulties and physical discomfort. Rehabilitation professionals can aid in the development of support services that caregivers have identified as being likely to use and can refer caregivers to resources that they have identified as being helpful, such as educational information about the disease. The development of support services should focus on aspects of caring that caregivers found most challenging and be delivered in a format that considers caregiver preferences. 

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Burden on Caregivers of Adults with Multiple Chronic Conditions: Intersectionality of Age, Gender, Education level, Employment Status, and Impact on Social Life

Intersectionality analysis is the study of overlapping or intersecting social identities. Intersecting social identities may have an impact on the perception of burden by family caregivers of older persons with multiple chronic conditions (MCC). The purpose of this study was to explore the interaction of social factors on the burden of caring for older adults with MCC. A total of 194 caregivers of older adults with MCC were recruited from Alberta and Ontario. Survey data were collected at two time points, six months apart. Additive and multiplicative models were analysed using a generalised linear model to determine the level of caregiver burden. Medium-high social interference (impact on social life) was associated with higher burden when adjusted for age, gender, education, and employment status. The overall results of the five-way interaction suggest that males in general had lower burden scores than females. Irrespective of their education and employment status, females had generally higher burden scores. These results add to the current body of literature, suggesting areas for further research to fill knowledge gaps, and promoting ideas for evidence-guided public health interventions that focus on caregivers.

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Burden of Care in Caregivers of Iranian patients with chronic disorders: a systematic review and meta-analysis

Introduction: Caring for patients with chronic disorders can lead to different problems for caregivers in physical, psychological, social, family, and financial domains. High levels of burden of care can make caregivers vulnerable to physical and psychological conditions and influence their quality of life. Therefore, the goal of the present study was to estimate the overall percentage of burden of care in caregivers of Iranian patients with chronic disorders. Methods: A total of 25 articles published from inception to February 2019 were reviewed. Search for articles was conducted in international (Scopus, Web of Science, and PubMed) and domestic (Scientific Information Database (SID) and MagIran) databases, using the following keywords: "Caregiver," "Burden," and "Iran," and their possible combinations. The data were analyzed using the meta-analysis method and the random effects model. All the analyses were performed using STATA, version 14. Results: The overall percentage of burden of care in caregivers of Iranian patients with chronic disorders was 53.28% (95% CI: 46.13-60.43). The highest percentage of burden of care was related to dialysis (62.75; 95% CI: 56.11-69.38), mental disorders (58.69; 95% CI: 49.70-67.69), and Alzheimer's disease (57.07; 95% CI: 46.23-67.92), respectively; and the lowest percentage of burden of care was related to diabetes (34.92; 95% CI: 18.01-51.82). Conclusions: Caregivers of Iranian patients with chronic disorders experience high levels of burden of care, especially those caring for patients undergoing dialysis, patients with mental disorders, and patients with Alzheimer's disease. Therefore, necessary measures need to be taken by Iranian health care officials to reduce burden of care in caregivers. 

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Burden and quality of life in caregivers of patients with amputated diabetic foot

Informal caregivers of chronically ill patients often report burden and poor quality of life. This study aimed to evaluate the impact of caring on caregivers of amputated patients with type 2 diabetes and diabetic foot. A cross‐sectional study included a convenience sample of 110 caregivers who answered: the Burden Assessment Scale, the Depression Anxiety Stress Scales, the Social Support Satisfaction Scale, the Family Assessment Device, and the Short Form Health Survey. Multiple linear hierarchical regressions were performed to identify the variables that contributed to the burden and the physical and mental quality of life. Differences in burden as well as physical and mental quality of life were found, according to several caregivers' sociodemographic characteristics. Lower social support, more distress, and caregiver's perception of the impact of caring on the family dynamics contributed to burden. Lower distress and not having a chronic illness besides diabetes explained the physical quality of life whereas exercise and lower distress explained mental quality of life. To promote quality of life in caregivers and reduce the burden associated with caregiving, interventions should focus on social support, distress, and the practice of exercise. (Portuguese)

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Balance and preference in activity participation for informal caregivers of people with aphasia: A questionnaire study

With increased attention to third-party disability, there is a need to evaluate how informal caregivers of people with aphasia participate in diverse life activities. Qualitative research has improved our understanding of experiences and priorities in this essential group of stakeholders. However, there has been limited effort to confirm results quantitatively and based on robust sample sizes. To characterize the balance and preference among home/work, leisure, and social activities for informal caregivers based on questionnaires that can also be used with people who have aphasia. Seventy caregivers for people with aphasia and 46 control participants who were not caregivers completed the Community Integration Questionnaire (CIQ) and a questionnaire version of the Life Interests and Values (LIV) Cards. CIQ scores did not differ statistically between groups, but the frequency of endorsed activities on the LIV Cards did. Whereas current engagement in home and community activities was similar for the two groups, caregivers reported doing significantly fewer activities in social, physical, and creative and relaxing categories. In contrast to the balance difference for their current life, participants in both groups agreed about wanting to do more social and leisure activities, with many activities rising to the top in both groups. Informal caregivers for people with aphasia experience a measurable difference between activities they currently do in their lives and activities they want to do. With modification, interviews and questionnaires intended for people with disability can provide a caregiver perspective on living with aphasia that may facilitate coordinated and relationship-focused intervention. 

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Lifetime Active Care: A qualitative study of long-term family carers of people with spinal cord injury in Australia

This study reports the findings of a qualitative, grounded theory study which explored the experiences of partners and other long-term family carers living with and supporting loved ones with spinal cord injury. The study is exploratory in that little was previously known about the experience of long-term care-giving in this context in Australia. Most research in this area has focused on this experience during the first 5 years postinjury. This study focuses on the experiences of family carers beyond that 5-year period. The study aimed to explore the experience of partners and other long-term family carers of people with spinal cord injury, and illuminate their daily lives, interests, concerns and caring approaches in this context. Data collection included in-depth interviews, a focus group and an on-line, password-protected research blog for participant narrative reflections. Findings revealed that the experience of long-term caring is complex, all-encompassing and lifelong. This experience is conceptualised here as lifetime active care which always involves what we describe as protective, negotiated, surreptitious and strategic caring. These dimensions of caring are interdependent and deeply embedded in the daily, active support provided by long-term carers of people with spinal cord injury. We argue that carers in this context are involved in processes that have, in other contexts, been conceptualised as narrative reconstruction and also that the four dimensions of caring identified involve significant emotion work. The social processes of lifetime active care may shed light on the experiences of family carers in other long-term care contexts.

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The invisible workforce during the COVID-19 pandemic: Family carers at the frontline [version 1; peer review: 2 approved]

This is an open letter to acknowledge the essential and increasingly challenging role unpaid family carers are playing in the COVID-19 pandemic. The letter is written by members of the CAREWELL team, a HRB-funded project that aims to promote health and self-care behaviours among working family carers. Family carers provide care to family and friends in the community who need support due to old-age, disability and chronic illness. In many cases, family carers are supporting those who are considered most at risk in this pandemic meaning carers must reduce their own risk of infection in order to protect their dependent family members. The temporary reduction of some home care services, as well as school and creche closures, means that family carers are providing increased levels of care with little or no support. At a time when both worlds of work and care have been dramatically transformed, we wish to shed light on those who are currently balancing paid employment with a family caregiving role. We argue that there is much to be learned from the recent work restrictions that could benefit employees, including working family carers, beyond this pandemic. We also wish to build on the potential positives of a transformed society and encourage policy makers and employers to focus on what is currently being implemented, and to identify which measures could be used to create a bedrock of policies and practices that would offer robust and effective support to family carers. It is hoped that family carers will receive greater recognition for the significant role they play in society, providing essential care and alleviating the strain on health and social care systems, both during and post the COVID-19 pandemic.

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Insomnia and caregiver burden in chronic pain patients: A cross-sectional clinical study

Insomnia is a major comorbid symptom of chronic pain and is likely to affect caregiver burden. This cross-sectional study investigated the association between insomnia in chronic pain patients and family caregiver burden. Participants were 60 patients with chronic pain of >= 3 months duration. Demographic and clinical information were collected using the Athens Insomnia Scale (AIS), the Pain Disability Assessment Scale (PDAS), the Hospital Anxiety and Depression Scale (HADS), and a pain intensity numerical rating scale (NRS). Family members who accompanied chronic pain patients to hospital completed the Zarit Burden Interview (ZBI). Univariate regression analysis and multiple regression analysis were conducted to clarify the associations between ZBI scores and total/subscale AIS scores. Covariates were age; sex; pain duration; and scores on the PDAS, HADS anxiety subscale, HADS depression subscale, and NRS. Insomnia was independently associated with ZBI scores [beta: 0.27, 95% confidence interval (CI): 0.07-0.52, p = 0.001]. Scores on the AIS subscale of physical and mental functioning during the day were significantly associated with ZBI scores (beta: 0.32, 95% CI: 0.05-0.59, p = 0.007). In conclusion, the findings suggest that in chronic pain patients, comorbid insomnia and physical and mental daytime functioning is associated with family caregiver burden independently of pain duration, pain-related disability, and pain intensity.

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Lived Experience of Spouses of Persons with Motor Neuron Disease: Preliminary Findings through Interpretative Phenomenological Analysis

Introduction: Motor neuron disease (MND) is a progressive neuromuscular disorder that can have significant and debilitating impact on the affected patient and families. Spouses are the primary carers for persons with MND in India, and the life of the person with MND and their spouse is never the same after the diagnosis. Aim: The objective was to explore the lived experience of spouses of persons diagnosed with MND. Methods: A qualitative exploratory study with three-point interviews was conducted with spouse caregivers of two persons diagnosed with MND who were receiving treatment from a national tertiary referral care center for neurological disorders. All the patients were diagnosed as definite MND according to the modified El Escorial criteria. With the spouses, in-depth interviews were conducted at their home, lasting on an average of 1 hour using a semi-structured interview guide (prompts). Interpretative phenomenological analysis was used to derive themes from the interviews. Results: The major themes emerged from the analysis were meaning of MND which contained the subthemes of delay in diagnosis and deterioration, psychological response across illness trajectory, relationship with the subthemes of changing roles in being acarer, marital relationship, to be seen as doing "right," and communication; adaptation with the subthemes of coping strategies and support system and life without the loved one. Conclusion: The changes in the lives of spouses and in strategies for caring the partner with deterioration of symptoms in the illness trajectory are explained in this study. The palliative approach in the management of MND has to take into account, the experiences and needs of carers since care happens at home.

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The Influence of Caregiver Preparedness on Caregiver Contributions to Self-care in Heart Failure and the Mediating Role of Caregiver Confidence

BACKGROUND: Caregiver contributions (CC) to heart failure (HF) self-care maintenance (ie, CC to maintaining HF stability) and management (ie, CC to dealing with HF signs and symptoms) improve patient outcomes, but it is unknown whether caregiver preparedness influences CC to self-care and whether caregiver confidence mediates this process. OBJECTIVES: We evaluated the influence of caregiver preparedness on CC to HF self-care maintenance and management and the mediating role of caregiver confidence. METHODS: This is a secondary analysis of the MOTIVATE-HF study. Patients were 18 years or older, with a diagnosis of HF in New York Heart Association classes II to IV, who had insufficient self-care and did not have severe cognitive impairment. Patients' informal caregivers were those people inside or outside the family who gave most of the informal care to the patients. We used the Caregiver Preparedness Scale and the Caregiver Contribution to Self-Care of HF Index. We tested a path analysis model and the indirect effects. RESULTS: Caregivers (n = 323) were 55 (SD, 15) years old on average and predominantly female (77%). The path analysis showed that higher scores in caregiver preparedness were associated with higher scores in caregiver confidence. In turn, higher caregiver confidence was associated with higher CC to self-care maintenance and management. Caregiver confidence mediated the association between caregiver preparedness and CC to self-care maintenance and management. CONCLUSIONS: Caregiver confidence may play a role in CC to self-care. Interventions to improve CC to HF self-care should not only be focused on improving caregiver preparedness but also should consider the role of caregiver confidence.

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Relational satisfaction of spousal/partner informal caregivers of people with multiple sclerosis: Relational commitment, caregiving burden, and prorelational behavioral tendencies

Background: Relational satisfaction of spousal/partner informal caregivers of people with multiple sclerosis (MS) is important for continued care and support. Previous studies have examined relational satisfaction in terms of well-being and quality of life of informal caregivers. Based on the Rusbult investment model, we directly studied the relational satisfaction of spousal/partner informal caregivers of individuals with MS. In doing so, we investigated possible effects that commitment to relationship, caregiving burden, and prorelational behavioral tendencies might have on relational satisfaction. Methods: Nine hundred nine adult spousal/partner informal caregivers of people with MS completed measures of relational satisfaction (Kansas Marital Satisfaction Scale), commitment to relationship (15-item commitment measure), caregiving burden (Zarit Burden Interview), and prorelational behavioral tendencies (adapted Prosocial Tendencies Measure). Participants also provided demographic information (age, sex, duration and type of relationship [spouse, partner]). Results: Structural equation modeling highlighted commitment to the relationship as the strongest predictor of relational satisfaction. Caregiving burden was found to affect relational satisfaction directly and through commitment to relationship. Prorelational behavioral tendencies were found to affect less relational satisfaction. Conclusions: Commitment to relationship, namely, intent to persist, had the highest positive effect on satisfaction. Caregiving burden was found to have a two-way negative relationship to commitment to relationship. These findings suggest that specialists should enhance the intent-to-persist aspect of commitment because it seems to have an alleviating effect regarding caregiving burden (which itself negatively affects relational satisfaction). 

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Experiences of Caregivers Caring for a Family Member Who Is Using Hemodialysis

In this qualitative phenomenological study using a purposive sample, six caregivers of patients on hemodialysis were interviewed about their experiences of caring for a family member who uses hemodialysis. Six major themes and 12 subthemes were identified. Perceptions of caregivers are that caregiving is hard work and stressful; however, caregivers found the experience to be meaningful, even though the stress may interfere with their own health status. Study limitations include a small sample that may not represent the entirety of caregivers' perspectives. Implications for practice include developing informal and formal support systems and exercise programs that help this population manage the stress associated with caregiving for family members using hemodialysis.

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Health-Related Quality of Life and Use of Hospital Services by Patients with Heart Failure and Their Family Caregivers: A Multicenter Case-Control Study

Background: Heart failure (HF) causes high rates of hospital admissions. It is known that disease progression impacts the health-related quality of life (HRQoL) of both patients and caregivers, yet to date, this finding is based on cross-sectional studies with limited samples. Objectives: The study aim is to analyze the relationship between HF patients’ use of hospital services (a proxy for disease progression) and the HRQoL of their family caregivers. Methods: This work is a multicenter nested case-control study on a population of patients admitted to hospitals in southern Spain due to heart failure. The sample comprised 530 patient-caregiver dyads. Hospital admission data were retrospectively collected for the 5 years prior to inclusion in the study. Bivariate analyses and multivariate logistic regression were used to determine associations between patient deterioration and caregivers’ quality of life. Results: Patients’ use of hospital services was associated with worsened quality of life for family caregivers, with an overall OR of 1.48 (95% CI: 1.23-1.79). A positive correlation was found between patients’ perceptions of their physical health and the perceived mental health of caregivers (r = 0.127, p = 0.004) and between the perceived mental health of both (r = 0.291; p <0.0001). Conclusions: Greater use of hospital services by patients with HF is an independent predictor of deterioration of family caregivers’ HRQoL. The physical and mental components of patients’ and their family caregivers’ HRQoL interact and influence each other. Additional factors, such as the nature and intensity of care provided, also determine the worsening of a family caregiver’s HRQoL. Clinical Relevance: These results can be used to identify family caregivers of people with heart failure at risk of suffering a deterioration in their health-related quality of life. Increased use of hospital services is an independent predictor of the deterioration of the family caregivers’ health-related quality of life. Since clinical nurses are the main provider who gives support and education to family caregivers, they should be alert to this situation and individualize interventions to prevent this deterioration. 

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Longitudinal evaluation of the effects of illness perceptions and beliefs about cardiac rehabilitation on quality of life of patients with coronary artery disease and their caregivers

Background: Patients' negative illness perceptions and beliefs about cardiac rehabilitation (CR) can influence uptake and adherence to CR. Little is known about the interpartner influence of these antecedent variables on quality of life of patients with coronary artery disease (CAD) and their family caregivers. The aims of the study were: 1) to assess differences in illness perceptions, beliefs about CR and quality of life between patients with CAD and their family caregivers upon entry to a CR programme and at 6 months follow-up; and 2) to examine whether patients' and caregivers' perceptions of the patient's illness and beliefs about CR at baseline predict their own and their partner's quality of life at 6 months. Methods: In this longitudinal study of 40 patient-caregiver dyads from one CR service, patients completed the Brief Illness Perception Questionnaire and Beliefs about Cardiac Rehabilitation Questionnaire at baseline and 6 months; and caregivers completed these questionnaires based on their views about the patient's illness and CR. The Short-Form 12 Health Survey was used to assess patients' and caregivers' perceived health status. Dyadic data were analysed using the Actor-Partner Interdependence Model. Results: Most patients (70%) were men, mean age 62.45 years; and most caregivers (70%) were women, mean age 59.55 years. Caregivers were more concerned about the patient's illness than the patients themselves; although they had similar scores for beliefs about CR. Patients had poorer physical health than caregivers, but their level of mental health was similar. Caregivers' poorer mental health at 6 months was predicted by the patient's perceptions of timeline and illness concern (i.e. partner effects). Patient's and caregiver's illness perceptions and beliefs about CR were associated with their own physical and mental health at 6 months (i.e. actor effects). Conclusions: Overall, the patients and caregivers had similar scores for illness perceptions and beliefs about CR. The actor and partner effect results indicate a need to focus on specific illness perceptions and beliefs about CR, targeting both the individual and the dyad, early in the rehabilitation process to help improve patients and caregivers physical and mental health (outcomes). 

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Factors Associated With Quality of Life of Family Caregivers of Dialysis Recipients

Chronic kidney failure may contribute to the diminished quality of life of African American women who care for adults affected by the disorder. Few studies document the quality of life of these caregivers. For this descriptive correlational study, caregiver demographic, caregiver burden, depressive symptoms, family functioning, and quality-of-life self-report data from 75 African American women were extracted from an existing database. Ferrans’ Conceptual Model of Quality of Life guided the selection of study variables. Several significant associations were found. Caregiver education, employment status, marital status, and caregiver burden explained 63% of the variance in the caregivers’ quality of life. Findings support the need to explore further and design interventions to improve the quality of life of working African American women supporting individuals with chronic kidney failure.

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Perceptions of the impact of chorea on health-related quality of life in Huntington disease (HD): A qualitative analysis of individuals across the HD spectrum, family members, and clinicians

Chorea, a hallmark symptom of Huntington's disease (HD), is characterized by jerky involuntary movements affecting the whole body that can interfere with daily functioning and impact health-related quality of life (HRQOL). To characterize chorea's impact on everyday functioning and HRQOL and identify patterns of perception and experiences of chorea among patients, caregivers, and providers. Data from focus groups of individuals with manifest HD (n = 8 early-stage HD; n = 16 late-stage HD), individuals at-risk or prodromal HD (n = 16), family HD caregivers (n = 17), and HD clinicians (n = 25). Focus group recordings were transcribed verbatim and analysed via constant comparison to identify meaningful and salient themes of living with chorea. Global themes of chorea's impact identified included: watching for chorea, experiences of stigma, and constraints on independence and relationships. Themes distinct to specific respondent groups included: Vigilance (at risk, prodromal); adaptation to chorea (early-stage); loss of autonomy and social life (late-stage); monitoring engagement (family caregivers) and safety (clinical providers). Living with chorea significantly constrains daily functioning, interactions, and HRQOL across the HD disease spectrum. Addressing these impacts via appropriate management of chorea can potentially enhance functioning, HRQOL, and overall satisfaction for persons with HD and their families.

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Leveraging institutional support for family caregivers to meet the health and vocational needs of persons with disabilities

Background: Family caregivers might enhance veteran engagement in health and nonhealth services (i.e., vocational/educational assistance). Purpose: To describe how veterans with disabilities perceive their recovery needs, identify types of social support from caregivers that help veterans engage in Veterans Affairs (VA) health and nonhealth services, and explore participant views of VA institutional support for caregivers to help veterans engage in these services. Methods: Joint in-depth qualitative interviews with U.S. veterans and family caregivers (n = 26). Findings: Caregivers performed social support functions that helped veterans engage in health and vocational/educational services and institutional support from VA enhanced caregivers’ capacity. Discussion: Caregivers are well positioned to align health and nonhealth services with patient needs to enhance recovery. Staffing a point person for caregivers within the health system is key to help families develop a coordinated plan of treatment and services to improve patient success across health and nonhealth domains. Nurses are well suited to perform this role. 

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Quality of life among caregivers of people with end-stage kidney disease managed with dialysis or comprehensive conservative care

Background: To measure health-related and care-related quality of life among informal caregivers of older people with end-stage kidney disease (ESKD), and to determine the association between caregiver quality of life and care recipient's treatment type. Methods: A prospective cross-sectional study was conducted. Three renal units in the UK and Australia were included. Informal caregivers of people aged ≥75 years with ESKD managed with dialysis or comprehensive conservative non-dialytic care (estimated glomerular filtration (eGFR) ≤10 mL/min/1.73m2) participated. Health-related quality of life (HRQoL) was assessed using Short-Form six dimensions (SF-6D, 0-1 scale) and care-related quality of life was assessed using the Carer Experience Scale (CES, 0-100 scale). Linear regression assessed associations between care-recipient treatment type, caregiver characteristics and the SF-6D utility index and CES scores. Results: Of 63 caregivers, 49 (78%) were from Australia, 26 (41%) cared for an older person managed with dialysis, and 37 (59%) cared for an older person managed with comprehensive conservative care. Overall, 73% were females, and the median age of the entire cohort was 76 years [IQR 68-81]. When adjusted for caregiver sociodemographic characteristics, caregivers reported significantly worse carer experience (CES score 15.73, 95% CI 5.78 to 25.68) for those managing an older person on dialysis compared with conservative care. However, no significant difference observed for carer HRQoL (SF-6D utility index - 0.08, 95% CI - 0.18 to 0.01) for those managing an older person on dialysis compared with conservative care. Conclusions: Our data suggest informal caregivers of older people on dialysis have significantly worse care-related quality of life (and therefore greater need for support) than those managed with comprehensive conservative care. It is important to consider the impact on caregivers' quality of life when considering treatment choices for their care recipients. 

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Comparison of Healthcare Utilization Between Informal Caregivers and Non-Caregivers: An Analysis of the Health Information National Trends Survey

Objective: The demands of providing unpaid care for someone with a disabling health condition (i.e., informal caregiving) can limit attention to one’s own health needs. Using a nationally representative survey, this study examines whether caregivers report different healthcare utilization relative to non-caregivers. Method: Participants in the Health Information National Trends Survey 5, Cycle 1 reported whether they provided unpaid care and healthcare utilization outcomes. Logistic regressions and chi-square tests with jackknife variance estimation were used. Results: Caregivers (N = 391) did not differ from non-caregivers (N = 2,894) in time since routine checkup or number of healthcare appointments in the past year (p values >.25). Among caregivers, number of healthcare appointments differed according to caregivers’ relationship to the care recipient (p =.04). Discussion: Findings suggest that informal caregivers access routine healthcare at a frequency similar to non-caregivers. Further research should determine whether this utilization is optimal, or whether increased utilization during caregiving might help attenuate caregivers’ longer term morbidity. 

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Living with Chronic Heart Failure: Exploring Patient, Informal Caregiver, and Healthcare Professional Perceptions

Due to the complexity of heart failure (HF) and its treatment process, a high level of patient and informal caregiver engagement is required for management results. We aimed to explore the views of HF patients, informal caregivers, and healthcare professionals about personal experiences, perceived needs, and barriers to optimal HF management. A qualitative study using semi-structured interviews with HF patients (n = 32), their informal caregivers (n = 21), and healthcare professionals (n = 5) was conducted in the outpatient HF clinic in Slovenia in 2018. A content analysis method was used to analyze the data. Negative emotional response to disease and its limitations (especially the inability to continue with work) and changes in family roles were the most prevalent topics regarding the impact of HF on livelihood. Among the most common barriers to HF self-care, were the difficulties in changing lifestyle, financial difficulties due to the disease, traditional cuisine/lack of knowledge regarding a healthy diet and lack of self-confidence regarding physical activity. Despite psychological and social difficulties due to HF being highlighted by patients and informal caregivers, only healthcare professionals emphasized the need to address psychosocial aspects of care in HF management. Established differences could inform the implementation of necessary support mechanisms in HF management.

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Informal caring for back pain: overlooked costs of back pain and projections to 2030

This study models the economic costs of informal caring for people with back pain, using a microsimulation model, Care&WorkMOD, from 2015 to 2030. Care&WorkMOD was based on 3 national Australian Surveys of Disability, Ageing and Carers (2003, 2009, 2012) data sets for individuals aged 15 to 64 years. Estimated national income loss due to caring for people with back pain was AU$258 million in 2015, increasing to $398 million in 2030 (54% increase). Lost income tax revenue to the Australian government due to informal care of people with back pain was estimated to be AU$78 million in 2015, increasing to AU$118 million in 2030 (50% increase), and additional welfare payments were estimated to rise from $132 million in 2015 to AU$180 in 2030 (36% increase). Larger growth in lost income, compared with the increase in welfare payments, means that there would be an increasing income gap between those out of the labour force providing informal care and noncarers who are in the labour force, leading to increased inequality. Informal carers are defined as providers of informal, unpaid assistance to someone with a health condition, for at least 6 months. Informal carers of people with back pain who are out of the labour force incur substantial economic costs. Furthermore, back pain is a large economic burden on national governments. Policies addressing back pain prevention and treatment, and supporting carers, may offset government welfare expenditure, while improving the socioeconomic well-being of carers and patients.

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Designing and validation of health-related quality of life inventory for family caregivers of hemodialysis patients

Background: Family caregivers are important sources of care for hemodialysis patients. Although caring for a family member is a pleasant feeling, experiencing lots of physical and psychological caregiving burden influences the quality of life among family caregivers of hemodialysis patients. This study aimed to design and validate the quality of life inventory for family caregivers of patients on hemodialysis. Methods: A sequential-exploratory mixed method was conducted in Tehran, Iran, in 2017-2018. In the qualitative phase, the researcher conducted in-depth semi-structured interviews with 19 participants. Finally, a pool of 93 items was extracted from this phase. Then, psychometric properties such as face validity (Impact Score>1.5), content validity ratio (CVR>0.63), content validity index (Item Content Validity Index: ICVI>0.78, Scale Content Validity Index/Average: SCVI/Ave>0.8) and Kappa value (Kappa>0.7, internal consistency (Cronbach’s alpha>0.7), relative reliability (ICC:interclass correlation coefficient),absolute reliability (Standard Error of Measurement: SEM and Minimal Detectable Changes: MDC), convergent validity (Correlation Coefficient between 0.4-0.7), interpretability, responsiveness, feasibility, and ceiling and floor effects were assessed Results: The quality of life inventory for family caregivers of hemodialysis patients was developed with 34 items and five factors (namely patient care burden, conflict, positive perception of situations, self-actualization, fear, and concern). The findings confirm that the scale is acceptable regarding validity, reliability and other measurement features. Conclusions: This inventory is consistent with the health care status in Iran. Therefore, it can be used to measure the quality of life among family caregivers of hemodialysis patients. 

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Enhancing primary care support for informal carers: A scoping study with professional stakeholders

Informal carers (i.e. people who provide unpaid care to family and/or friends) are crucial in supporting people with long-term conditions. Caring negatively impacts on carers’ health and experiences of health services. Internationally and nationally, policies, legislation, professional guidance and research advocate for health and care services to do more to support carers. This study explored the views of health and social care providers, commissioners and policy makers about the role and scope for strengthening health service support for carers. Twenty-four semi-structured interviews, with 25 participants were conducted, audio-recorded, transcribed verbatim and analysed by thematic analysis. Three main themes emerged: (a) identifying carers, (b) carer support, and (c) assessing and addressing carer needs. Primary care, and other services, were seen as not doing enough for carers but having an important role in identifying and supporting carers. Two issues with carer identification were described, first people not self-identifying as carers and second most services not being proactive in identifying carers. Participants thought that carer needs should be supported by primary care in collaboration with other health services, social care and the voluntary sector. Concerns were raised about primary care, which is under enormous strain, being asked to take on yet another task. There was a clear message that it was only useful to involve primary care in identifying carers and their needs, if benefit could be achieved through direct benefits such as better provision of support to the carer or indirect benefit such as better recognition of the carer role. This study highlights that more could be done to address carers’ needs through primary care in close collaboration with other health and care services. The findings indicate the need for pilots and experiments to develop the evidence base. Given the crucial importance of carers, such studies should be a high priority. 

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A literature review of cost-of-illness studies on the economic burden of multiple sclerosis

Background: Multiple sclerosis has both high healthcare and social impacts. Objective: The purpose of this article is to analyse the available literature describing the economic burden of multiple sclerosis and to compare costs among studies examining main cost drivers. Methods: A literature search on studies published in English on cost-of-illness of multiple sclerosis included in this review using PubMed, the Cochrane Library, SCOPUS and Web of Science includes a retrospective horizon and it describes direct and indirect costs in patients categorized into severity groups. Results: Several papers were obtained from the database search (n=37). Additionally, results from “hand searching” were also included, where a wider horizon was considered. Cost estimates were compared among studies that used a societal perspective on costs, time-period studied, and year of price level used. The estimated total annual cost per patient in Europe is on average 40,300€ (n=20). In addition, differences by geographic areas and severity groups are also considered. All in all, the higher the severity, the higher the associated costs. Conclusions: This systematic review provides one clear finding: multiple sclerosis places a huge economic burden on healthcare models and societies due to productivity losses and caregiver burden. Moreover, costs of drugs were main cost determinants for less severe cases of multiple sclerosis and informal care and production losses for the most severe cases of multiple sclerosis.

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Piecing the Patient Story Back Together: Why the Patient and Caregiver Contribution Matters

Clinicians make decisions based on a large and complex patient information space in time pressured situations. Through continuity, experience, and privileged knowledge, the patient and caregiver(s) are in a position to support clinician decisionmaking through information delivery. For example, they may make salient relevant information or provide an integrated patient story to help clinicians overcome challenges of making decisions based on incomplete information. Recommendations of engaging patient/caregiver(s) include fostering a culture of listening by clinicians, speaking up by patient/caregiver(s), effective patient education and health information technology, and family-centered rounding and hand-offs. Using a lived experience, I illustrate the value of the potential impact of caregiver's informational contribution to patient safety.

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Patients, caregivers and health‐care professionals’ experience with an interdisciplinary intervention for people with multimorbidity in primary care: A qualitative study

Background Multimorbidity challenges the health‐care system and requires innovative approaches. In 2015, a 4‐month patient‐centred interdisciplinary pragmatic intervention was implemented in primary care with the aim of supporting self‐management for patients with multimorbidity.Objective To explore the perceptions and experiences of health‐care professionals, patients and their caregivers with a 4‐month patient‐centred interdisciplinary pragmatic intervention in primary care.Design A descriptive, qualitative study using semi‐structured interviews was conducted. Setting and participants A purposive sample of 30 participants was recruited from seven family medicine groups including patients, caregivers and health‐care professionals (HCPs). Interviews were analysed using Thorne's interpretive description approach. Results Findings were grouped into the benefits and challenges of participating in the intervention. The programme allowed patients to adopt realistic and adapted objectives; to customize interventions to the patient's reality; and to help patients gain confidence, improve their knowledge, skills and motivation to manage their condition. Interprofessional collaboration eased the exchange of information via team meetings and electronic medical records. Challenges were related to collaboration, communication, coordination of work and integration of newly relocated HCPs mainly due to part‐time assignments and staff turnover. HCPs part‐time schedules limited their availability and hindered patients’ follow‐up. Discussion and conclusion This intervention was useful and rewarding from the HCPs, patients and caregivers’ perspective. However, to ensure the success of this complex interdisciplinary intervention, implementers and managers should anticipate organizational barriers such as availability and time management of relocated HCPs.

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