Although providing care to a family member or friend may provide psychological benefits, informal (i.e., unpaid) caregivers also encounter difficulties which may negatively affect their quality of ...life as well as their mental and physical health. Loneliness is one important challenge that caregivers face, with this psychological state being associated with morbidity and premature mortality. Although previous research has identified loneliness as an issue associated with being an informal caregiver, there is a paucity of evidence that attempts to understand this phenomenon in depth. This study aimed to examine informal caregivers' reflections on, and accounts of, experiences of loneliness linked to their caregiving situation. As part of a cross-sectional, qualitative study, sixteen semi-structured interviews were conducted with 8 spousal caregivers, 4 daughters caring for a parent, 3 mothers caring for a child (or children), and 1 woman looking after her partner. The cared-for persons were suffering from a range of mental and physical health conditions (e.g., dementia, frailty due to old age, multiple sclerosis, depression, autism). Data were analyzed using an inductive thematic analysis. Experiences of loneliness were described by reference to a context of shrunken personal space and diminished social interaction caused by the restrictions imposed by the caregiving role. Loneliness was also articulated against a background of relational deprivations and losses as well as sentiments of powerlessness, helplessness, and a sense of sole responsibility. Social encounters were also seen to generate loneliness when they were characterized by some form of distancing. Though not all sources or circumstances of loneliness in caregivers are amenable to change, more opportunities for respite care services, as well as a heightened sensibility and social appreciation of caregivers' valued contributions could help caregivers manage some forms of loneliness.
•Research is underdeveloped on ketogenic diet therapy (KDT) caregiver support.•KDT caregiver support research is not a focus in the current KDT literature.•The limited extracted research emphasizes ...the importance of social connections.•KDT caregiver research can leverage theories applied in other caregiver contexts.•Quality support may improve patient outcomes and protect caregiver wellbeing.
Epilepsy affects millions of people and when medications are insufficient to maintain seizure control, individuals are diagnosed with refractory epilepsy (RE). Medical ketogenic diet therapy (KDT), a diet high in fat and low in carbohydrates and sufficient in protein, is a well-established treatment for RE. However, compliance is one of the main reasons for discontinuation of KDT and, with pediatric RE patients, the ability of informal caregivers, typically family members, to maintain diet adherence is vital for successful KDT treatment.
The central role that informal caregivers play for effective KDT implementation is recognized, however, there is a need to elucidate the rationale and theoretical underpinnings of effective KDT caregiver support programs to inform best practices. Therefore, this systematic literature review aims to identify the existing fundamental understandings of KDT caregiver support to help build a foundation of theory-based knowledge to promote evidenced practice.
After screening 137 publications, three studies that discussed potential underlying components of effective caregiver support were included in this review. These articles followed a similar approach as they 1) employed qualitative methods delving into caregiver needs, 2) findings highlighted the importance of support from family, friends, fellow caregivers and their child’s medical team, and 3) the inclusion of caregiver support findings were a supplement to the main purpose of the manuscript.
Research focused on KDT caregivers is in its infancy. There is a clear need for the systematic examination of support for KDT caregivers to build a foundation for effective support programs and to increase the access to quality support programming to foster KDT implementation, desirable patient outcomes, and caregiver well being. In this article we discuss opportunities to apply self-determination theory to the KDT caregiver support research and practice.
Objective
This study sought to identify effective means for delivering services to address the unique needs of caregivers for traumatic brain injury (TBI) survivors.
Background
Caregivers for TBI ...survivors face unique and intense challenges, including deep isolation. When these caregivers fail to thrive, the entire family system suffers.
Method
Employing a pilot study utilizing qualitative methods, we explored the effectiveness of an intervention piloting telehealth counseling to address some of the unique caregiving challenges for the TBI survivor's caregiver. We conducted two focus groups of four participants to obtain qualitative data.
Results
Qualitative analysis identified key themes: isolation, boundary issues, challenges of therapy, and the benefits of telehealth counseling.
Conclusions
Results indicate an improvement in overall functioning of caregivers when accessing telehealth services.
Implications
On a micro level, results demonstrate that telehealth services can help TBI caregivers prevent boundary enmeshment. On a macro level, results have implications for increased investment and resources for those who serve the TBI population through an online format as well as proposed best practices for the method of service delivery.
Of the 26.4 million family caregivers in the United States, nearly 40% report high levels of emotional strain and subjective burden. However, for the 5 million caregivers of Veterans, little is known ...about the experiences of caregivers of Veterans during the coronavirus disease 2019 (COVID-19) pandemic.
The aim was to examine pandemic-related changes of caregiver well-being outcomes.
Using a pre/post design and longitudinal data of individual caregivers captured pre-COVID-19 and during COVID-19, we use multilevel generalized linear mixed models to examine pandemic-related changes to caregiver well-being (n=903). The primary outcome measures include Zarit Subjective Burden, Center for Epidemiologic Studies Short Depression Scale, perceived financial strain, life chaos, and loneliness.
During the pandemic, we observe slight improvements for caregivers across well-being measures except for perceived financial strain. Before the pandemic, we observed that caregivers screened positive for clinically significant caregiver burden and probable depression. While we do not observe worsening indicators of caregiver well-being during the COVID-19 pandemic, the average predicted values of indicators of caregiver well-being remain clinically significant for caregiving subjective burden and depression.
These findings illuminate pandemic-related impacts of caregivers receiving support through the Veterans Affairs (VA) pre-COVID and during the COVID-19 pandemic while caring for a population of frail, older care-recipients with a high burden of mental illness and other chronic conditions. Considering the long-term impacts of the pandemic to increase morbidity and the expected increased demand for caregivers in an aging population, these consistently high levels of distress despite receiving support highlight the need for interventions and policy reform to systematically support caregivers more broadly.
Background: Irrational health anxiety increases due to insufficient information about COVID-19 and misinterpretation of allergy symptoms in favor of COVID-19. The disease increases the caregiver ...burden in informal caregivers and, subsequently, causes physical and mental disorders for them and negatively affects the provision of care for patients. Objectives: This study aimed to examine the relationship between health anxiety and caregiver burden in informal caregivers of patients with COVID-19. Methods: In this cross-sectional and correlational study, the convenient sampling method was adopted to select 340 informal caregivers of patients with COVID-19 who were discharged during the last three weeks of hospitalization in Vasei Hospital of Sabzevar City, Iran, in 2021. To collect the required data, the online links of the demographic information questionnaire, Salkoviskis's short health anxiety inventory (SHAI), and Novak and Guest's Caregiver Burden Inventory (CBI) were sent to the subjects through messengers. The data were analyzed using SPSS 22 as well as descriptive and analytical statistics. Results: According to the results, the mean caregiver burden score in informal caregivers of patients with COVID-19 was 69.72 ± 14.91, and the mean health anxiety score was 16.22 ± 8.24. Pearson's test results were indicative of a significant relationship between caregiver burden and health anxiety (P < 0.001). Conclusions: Since a significant relationship was found between health anxiety and caregiver burden in informal caregivers of patients with COVID-19 in this study, it was argued that the health of informal caregivers was an important health issue certainly deserving serious attention of the health service providers.
Background & Aim: Since family caregivers play an important role in providing care for patients in need of palliative care, it is important to focus on and examine their care ability in fulfilling ...the expected roles. Therefore, this study aimed to perform a psychometric evaluation of the Caring Ability of the Family Caregivers of the Patients in Need of Palliative Care Scale (CAFCPNPCS). Methods & Materials: The present study is methodological research that evaluates the psychometric characteristics of the CAFCPNPCS by measuring face validity, content validity, construct validity (confirmatory factor analysis and divergent validity), and internal consistency in 412 family caregivers of the patients in need of palliative care, who were selected through convenient sampling. The data were analyzed using SPSS 24 and LISREL 8.8. Results: According to the confirmatory factor analysis, the 5-factor model with 31 items was confirmed with the values RMSEA=0.05, CFI=0.95, and GFI=0.88. The divergent validity was measured by the estimation of the correlation between the caring ability score with the care burden score (which was measured by Zarit Burden Interview) of the family caregivers of the patients in need of palliative care. Cronbach's alpha (α) was reported to be 0.85 for the whole scale and 0.781-0.852 for other dimensions. Conclusion: CAFCPNPCS is a valid and reliable tool that can evaluate the caring ability of the family caregivers of patients in need of palliative care. Based on the results, it is recommended to utilize this scale to determine these caregivers’ ability to provide care and to examine the effectiveness of interventions to improve the dimensions of their caring ability.
Background
Many informal caregivers experience significant caregiving burden and report worsening health-related quality of life (HRQoL). Caregiver HRQoL may vary by disease context, but this has ...rarely been studied.
Purpose
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.
Family caregivers of people with dementia, cancer, chronic obstructive pulmonary disease/emphysema, and diabetes reported more days of poor mental and physical health than non-caregivers, and caregiver outcomes did not differ by patient disease type
Objectives
(1) To describe existing tools to assess the burden of informal caregivers of people with cancer, (2) to describe how these tools have been validated and (3) to describe the areas of ...interest of existing assessment tool entries.
Background
The caregiver burden of informal caregivers of people with cancer greatly affects their lives. There is a wide variety of relevant assessment tools available, but there are no studies to help researchers to select tools.
Methods
A search was conducted using the keywords ‘cancer’, ‘caregiver’, ‘burden’ and ‘scale’ in Medline (PubMed), CINAHL and EMBASE to include articles that developed or applied tools to assess the burden on informal caregivers of cancer patients. Once eligible tools were identified, we searched their ‘primary reference’ studies. If the original scale was assessed in a population other than informal caregivers of cancer patients, we again searched for psychometric measures in the population of caregivers of cancer patients.
Results
This study retrieved 938 articles on developing or applying the informal caregiver burden instrument for cancer patients, including 42 scales. Internal consistency of the original scales ranged from 0.53 to 0.96. Nineteen scales initially developed to assess caregiver burden for patients with dementia, stroke and other disorders were later used for caregivers of cancer patients, eight of which have not yet been validated. Reclassifying all scale domains of concern revealed that scale assessments focused more on caregivers' physical health, emotional state and caregiving tasks.
Conclusion
This review identifies many scales for assessing informal caregiver burden in cancer patients and gives scales recommended. However, a portion still needs to be validated. The development of a new scale proposes to be based on a theoretical framework and to consider dimensions for assessing support resources.
Impact
What problem did the study address?: This paper collates assessment tools on the burden of informal carers of people with cancer. It also provides information on the applicable population, reliability and validity.
What were the main findings?: 41 scales could be considered for use, eight of which have not been validated. The scales focus more on assessing caregivers' physical health, emotional state and caregiving tasks, and less on the dimension of support resources.
Where and on whom will the research have an impact?: There are implications for informal carers of cancer patients in hospitals or in the community, as well as for relevant researchers.
Reporting Method
Retrieved with reference to systematic evaluation.
Patient or Public Contribution
No patient or public contribution.
Informal care is a common form of social support, which can vary greatly in its intensity. While views of aging have shown to be relevant to mental health before, we aim to analyze whether the ...association between views of aging and depressive symptoms is influenced by the provision of informal care and its intensity.
Data of six waves of the Health and Retirement Study in the United States was used. The sample includes up to 41,058 observations pooled over six waves of community-dwelling adults aged ≥50 years. Depressive symptoms were measured with the Center for Epidemiologic Studies Depression Scale (CESD) and attitudes towards own aging (ATOA) with the Philadelphia Geriatric Center Morale Scale (higher score indicates positive attitudes); informal caregiving (no/yes) and caregiving intensity (moderate, intense) were surveyed. Adjusted fixed effects regression analysis with robust standard errors, and with caregiving as moderator variable were calculated.
Informal caregiving did not interact with ATOA. However, transitioning into intense caregiving significantly moderated the association between ATOA and depressive symptoms. Lower depressive symptoms were associated with better ATOA and this association was significantly stronger in the intense caregiving condition than in the non-caregiving condition. No significant interaction effects were found between any form of caregiving and subjective age.
The possibility of reciprocal effects cannot be excluded.
Internalized ageism and depressive symptoms are more strongly related among caregivers who provide intense care. Thus, interventions to reduce internalized ageism could be helpful in particular among this vulnerable group of informal caregivers.
•First study connecting informal care, views of aging and mental health•Internalized ageism and depressive symptoms are more strongly related among intense caregivers.•Findings indicate views of aging among intense caregivers as a target to foster mental health.
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