Respite Care Research Articles

Exploring health-related quality of life in Portuguese Informal Caregivers

Abstract Background Caregiving can be associated with several adverse health impacts, such as in terms of mental health, health services use, or health-related quality of life (HRQoL). This study assessed HRQoL levels in Portuguese Informal Caregivers, and their relationship with caregiver psychosocial characteristics (e.g., perceived general and mental health; perceived level of support) and caregiving circumstances (e.g., caregiving duration, caregiving hours). Methods A cross-sectional study was conducted through an online survey directed to informal caregivers. HRQoL was measured using the Portuguese translation of the EQ-5D-5L. This instrument yields two values for HRQoL: a health profile (EQvalue) covering five dimensions (mobility, self-care, usual activities, pain/discomfort, and anxiety/depression), and a visual analogue scale (EQvas). Bivariate analyses were performed and results with p-values below 0.05 were considered statistically significant. Results A total of 760 informal caregivers were surveyed (mean age 57 years (±9.9), 92.5% female, 41.5% at least university level, 44.4% works full or part-time). The mean total score for EQvalue (n = 733) was 0.8 (SD = 0.2). The mean total score for EQvas (n = 760) was 63.1 (SD = 21.5). The perceived general (p < 0.001) and mental (p < 0.001) health status, and the perceived access to healthcare (p < 0.001) were associated with EQvalue score. Also, EQvalue score was found to be directly correlated with the perceived level of support (r = 0.142; p < 0.001) and competence (r = 0,237; p < 0.001), and inversely correlated with the number of caregiving hours per day (r= -0,150; p = < 0,001) and the caregiving duration (r= -0,109; p = 0.008). Conclusions A significant relationship between caregiver HRQoL and several caregiver psychosocial variables was identified. Investing in and promoting the use of respite care services, as well as ensuring better access to healthcare for caregivers, appears important for improving caregivers’ HRQoL. Key messages • Improving caregivers’ access to healthcare and education or training programs (promoting a greater sense of competence) can be important in helping them maintain their quality of life. • Increasing the availability and promoting the use of respite care services by caregivers can be important in helping them maintain their quality of life.

Caring for Carers: Association between Care-giving and Quality of Life of Family Carers of Spinal Cord Injury Survivors in Pakistan

Caring for someone with a spinal cord injury (SCI) has always been a family endeavor in developed as well as developing countries like Pakistan. Majority of people with SCI need assistance of others to carry out daily life activities i.e., eating, self-care, transportation and this functional dependence of patients on their attendant affect Quality of Life (QOL) of caregivers. Present study was designed to find the relationship between caregiver burden, psychosocial factors and QOL among caregivers. Caregiver Burden Inventory-SCI and WHOQOL was used to measure study variables. Cross-sectional research design having purposive sampling technique was used to gather data from spinal units of various hospitals of Pakistan. Sample size includes N= 255 family caregivers of SCI patients. Correlation analyses were applied to find the relationship between psychosocial factors, caregiver burden and QOL. Results showed that caregiver burden was significantly negatively correlated with quality of life and positively correlated with care-giving hours, duration of injury, and number of helpers involved in care-giving process. Furthermore, female caregivers showed high level caregiver burden and low levels of quality of life as compared to male counterparts. Similarly, married persons scored higher on caregiver burden and whose patients had paraplegic nature of injury. In Pakistan, there are no respite care programs for carers, The abovementioned findings are helpful in planning psychotherapeutic interventions and tailored caregiver training programs to lessen the impact of caregiver burden on caregivers and to boost their quality of life.

Caring for Persons with Alzheimer's Disease during a Pandemic

The population experiencing Alzheimer's disease (AD) and their caregivers have been tremendously impacted by the global COVID-19 pandemic. Outpatient services became less accessible during the pandemic lockdown which caused increased caregiver burden more than usual. Further examination discovered that caregivers were unable to properly take care of themselves because of the need to provide around-the-clock care to loved ones, who pre-pandemic were able to receive supplemental caregiving services. The purpose of this integrative review was to provide a synthesis of information regarding caregiver experiences, during a time of limited resources, such as with the COVID-19 global pandemic. A comprehensive search of the literature databases Cumulative Index to Nursing and Allied Health Literature (CINAHL) and Medline was completed yielding qualitative and mixed-methods studies. The literature search yielded 14 articles which met the criteria. Three themes emerged during this review. They include: Deprivation of self-care and social connectedness, Fragmented care and resources, and Improved policy development. Multiple gaps in caregiver needs have been identified throughout the literature. Outpatient services, home health aides, and respite care remain necessary elements of care for those with AD and for the relief of the caregiver. Forward planning should include government policies to support caregiving of those with AD, especially in the light of service restrictions or unavailable services.

Determinants of Depression in Caregivers of Geriatric Patients in Jeddah, Saudi Arabia: A Cross-Sectional Study.

Background and Objectives: Caregiving for geriatric patients is essential for ensuring the well-being and quality of life of older adults. Family caregivers play a crucial role, but they often face a significant burden that can lead to adverse mental health outcomes, including depression. This study aimed to estimate the prevalence of depression among caregivers of geriatric patients in Jeddah, Saudi Arabia, and to analyze its association with caregiver burden and various socio-demographic and caregiving parameters. Methods: A cross-sectional study was conducted in Jeddah, Saudi Arabia, between January and March 2024. Adult caregivers of geriatric patients were recruited through various social media platforms. Data were collected via an electronic questionnaire that included demographic information, caregiving parameters, the Patient Health Questionnaire-9 (PHQ-9) for depression screening, and the Zarit Burden Interview (ZBI-12) for caregiver burden assessment. Data were analyzed using descriptive statistics, chi-square tests, and multivariate logistic regression. Results: Of the 269 participants, the average age was 32 years, and the gender distribution was nearly balanced. The prevalence of depression (PHQ-9 score ≥ 10) among caregivers was 45.4% (95% CI: 39.3, 51.5%). Significant factors associated with higher depression scores included younger age, female gender, single status, being a student, low income, and caregiving burden. In the multivariate analysis, female gender (OR 2.50, 95% CI 1.30-4.80) and caregiving burden (mild-to-moderate burden: OR 6.18, 95% CI 2.94-13.00; high burden: OR 22.75, 95% CI 8.75-59.13) were independent predictors of depression. Conclusions: The study highlights the high prevalence of depression among caregivers of geriatric patients in Jeddah and underscores the significant impact of caregiving burden on mental health. These findings emphasize the need for targeted interventions, such as mental health support, respite care programs, and culturally sensitive educational training, to mitigate caregiver burden and enhance the well-being of caregivers.

Psychological distress in family caregivers of people with Alzheimer’s disease: Positive and negative aspects of caregiving

Research focusing on family caregivers of people with Alzheimer’s disease (PWAD) has predominantly highlighted the negative aspects of caregiving, reporting variables associated with poor mental health such as depression, anxiety, and burden. In recent decades, efforts have also been made to study positive variables associated with care, such as gain (positive results from the caregiving activity), satisfaction, and quality of life. The present study includes both positive and negative aspects of caregivers of PWAD, aiming to clarify their relationships and how they affect psychological distress. The study employed a cross-sectional descriptive design, enrolling a sample consisting of 140 family caregivers of PWAD. The variables assessed as negative aspects included hours of care per day, perceived burden, and psychological distress, while happiness, gain in caregiving, and quality of life were assessed as positive aspects. The results confirmed that family caregivers of PWAD experience both negative and positive aspects associated with caregiving. The relationship between these aspects is inversed: as the perceived burden increases, the mental health of the caregiver declines, and the positive aspects associated with caregiving decrease. Specifically, the perception of happiness begins to decrease with more than 15 h of care/day, while the perception of gain increases after 10 h of care/day. Respite care or financial aid that helps PWAD family caregivers reduce the number of hours dedicated to caring, along with psychological and support interventions to reduce subjective burden, would result in improved mental health of caregivers of PWAD.

Support services for informal carers: a register-based case–control study of Norwegian care recipients

This article aims to describe support services for informal carers and identify the characteristics of the care recipient and municipality that are associated with the allocation of these services. Care recipients were selected from the Norwegian Registry for Primary Health Care on 31 December 2019. Cases received care benefits (N = 9,816), respite care in institutions (N = 2,594) or respite care at home (N = 7,346); controls received home-based services only (N = 193,402). Municipal data were retrieved from the Municipality-State-Reporting register. Child and adolescent care recipients most often received support services, but allocation to this age group differed extensively between municipalities. Greater cognitive disability and cohabiting increased the odds of support services.

Predictors of health-related quality of life (HRQoL) for caregivers of children with developmental disabilities in Saudi Arabia: An observational study.

To examine predictors of health-related quality of life (HRQoL) for caregivers of children with developmental disabilities, a cross-sectional design was used. Participants were primary caregivers of children with developmental disabilities. Caregivers completed a demographic form about the child and the family, and the Arabic version of Patient-Reported Outcomes Measurement Information System-Profile 29 (PROMIS-29 v2.0). Descriptive statistics were used to report on demographic data, 1-sample Z tests to compare PROMIS domain scores with the general population, and multiple linear regression analyses to identify predictors of each domain. Participants were 111 primary caregivers, mostly mothers (65.8%). Caregivers reported higher levels of anxiety, depression, fatigue, sleep disturbance, and pain interference, and lower levels of physical function and social participation compared to the general population, P < .05. The regression models for predicting the HRQoL accounted for 12.3% of the variance in the physical function domain (P = .016), 13.9% in the anxiety domain (P = .009), 24.7% in the ability to engage in social activities and roles (P < .001), and 11.4% in the pain interference domain (P = .02). In these models, the severity of the child's disability and/or the child's age were common significant predictors. Specifically, child's age was the only significant predictor in 2 domains, the anxiety domain (β = -.29, P < .01) and ability to participate in social activities and roles domain (β = .42, P < .05). The severity of the child's disability was the only significant predictor in the physical function domain (β = -.52, P < .01). Both the severity of the child's disability and the child's age were significant predictors in the pain interference model (β = .40, P < .05), and (β = -.23, P < .05), respectively. However, the models did not significantly predict depression, fatigue, or sleep disturbance, P > .05. HRQoL is a complex construct and is influenced by multiple child and family factors. Implications of the study emphasize the importance of regular HRQoL screening for caregivers, the development of efficient referral systems for support services, and the exploration of respite care options.

Experiences of family carers supporting older people within the last year of life in rural and remote areas in the UK.

In the UK, a large proportion of older adults live in rural/remote locations. More people are dying at home and require care from their families. Little is known about the experiences of family carers of older people in rural/remote areas in the last year of life. To explore the experiences of current and bereaved family carers who support/ed an older person in a rural area in the UK towards the end-of-life. Qualitative methodology using semi-structured interviews and reflexive thematic analysis methods. Interviews were conducted with family carers of rural/remote-dwelling older people in the last year of life. Participants were recruited through national support services, third sector organisations and social media. Interviews were conducted with 20 family carers. Most were female (n = 17) and aged 52-80years. Family carers experienced difficulties in accessing health and social care in rural/remote areas due to workforce and skills shortages within their regions. The wider community helped with practical tasks and made carers feel less alone. Community-based services, such as day care, helped to provide respite for carers and promoted meaningful activity and social inclusion for older people. Although internet access was problematic, family carers gained support remotely via social media and telehealth services. Family carers of older people in the last year of life in rural/remote areas value support from the wider community. Further work is required to understand how Public Health approaches to palliative care and workforce distribution can support rural/remote carers and older people.

Experiences of Respite Care Among Carers or Relatives Who are Responsible for Caring for Individuals With a Mental Illness: An Integrative Literature Review.

An integrative review methodology was employed, following PRISMA guidelines and Whittemore and Knafi's method for integrative review. Thus, the review synthesised the findings of empirical literature published between 2005 and 2023 drawn from four databases: CINAHL, MEDLINE, PsycINFO and Scopus. From the seven studies that met the inclusion criteria, a number of themes emerged: (a) relief of carer burden; (b) benefits for individuals with Mental Illness (MI); (c) barriers to accessing respite care; and (d) inappropriate services model for respite care for individuals with MI. The review findings indicate that using respite care services can decrease a carer's burden and can positively impact both carers and individuals with MI. Conversely, respite care may cause an increase in carers' stress levels due to the lack of service availability, insufficient knowledge and understanding about respite care services for carers, respite accessibility challenges accessible for people with MI and the reluctance of people with MI to accept respite care.

Kinship Foster Caregivers, Caseworkers, and Foster parents’ Reflections and Experiences with Placement and Support in Iowa

Kinship foster care has increasingly become the first line of support in child removal cases. Case managers, kinship foster caregivers, and foster parents have perspectives that can inform and enhance services for families and children. The authors investigated the lived experiences of 18 families by conducting 38 qualitative interviews with 20 case managers, 10 kinship foster caregivers, and 8 foster parents. These participants reflected on five themes: starting points for placement, perceptions of and motivations for kinship foster caregiving (e.g., placement considerations, risks in kinship foster caregiving arrangements), informational support (e.g., opportunities, hurdles), barriers and challenges related to support (e.g., financial and instrumental support, child care, respite care), and access to improved social and professional support. The authors describe study limitations, implications for practice, and conclusions.

Aged care service use by Aboriginal and Torres Strait Islander people after aged care eligibility assessments, 2017-2019: a population-based retrospective cohort study.

To characterise the socio-demographic characteristics, aged and health care needs, and aged care services used by older Aboriginal and Torres Strait Islander people assessed for aged care service eligibility. Population-based retrospective cohort study; analysis of Registry of Senior Australians (ROSA) National Historical Cohort data. Aboriginal and Torres Strait Islander people aged 50 years or older who were first assessed for aged care service eligibility (permanent residential aged care, home care package, respite care, or transition care) during 1 January 2017 - 31December 2019. Socio-demographic and aged care assessment characteristics; health conditions and functional limitations recorded at the time of the assessment; subsequent aged care service use. The median age of the 6209 people assessed for aged care service eligibility was 67 years (interquartile range [IQR], 60-75 years), 3626 were women (58.4%), and 4043 lived in regional to very remote areas of Australia (65.1%). Aboriginal health workers were involved in 655 eligibility assessments (10.5%). The median number of health conditions was six (IQR, 4-8); 6013 (96.9%) had two or more health conditions, and 2592 (41.8%) had seven or more. Comorbidity was most frequent among people with mental health conditions: 597 of 1136 people with anxiety (52.5%) and 1170 of 2416 people with depression (48.5%) had seven or more other medical conditions. Geriatric syndromes were recorded for 2265 people (36.5%); assistance with at least one functional activity was required by 6190 people (99.7%). A total of 6114 people (98.5%) were approved for at least one aged care service, 3218 of whom (52.6%) subsequently used these services; the first services used were most frequently home care packages (1660 people, 51.6%). Despite the high care needs of older Aboriginal and Torres Strait Islander people, only 52% used aged care services for which they were eligible. It is likely that the health and aged care needs of older Aboriginal and Torres Strait Islander people are not being adequately met.

Self-Directed Home- and Community-Based Services Improve Outcomes for Family Caregivers: A Systematic Review.

Self-direction is an approach that allows older adults and people with disabilities to determine the home- and community-based services they receive, including the ability to hire caregivers of their choice. Self-direction has been shown to improve outcomes for the service recipients. The promotion of choice and control in self-direction may also affect family caregivers. We conducted a systematic review examining the impact of self-direction on a broad range of caregiver outcomes. We conducted a systematic review guided by PRISMA guidelines. Literature search was conducted in 8 databases. We appraised risk of bias using the Joanna Briggs Institute critical appraisal checklists and assessed certainty of evidence using the GRADE framework. Sixteen studies meeting inclusion criteria were included. We found, with moderate certainty, that self-direction is associated with improved caregivers' personal and social well-being. Caregivers also reported reduced unmet needs and increased access to care for the care recipients under self-direction. Self-direction did not appear to reduce caregiving hours. With less certainty, self-direction was also positively associated with increased respite care use, perception of choice, and intention to continue caregiving by caregivers. Beyond delivering person-centered services that improve recipient outcomes, self-direction may also improve the outcomes of family caregivers.

Nursing Experience of A Young Girl with IgA Nephropathy who Received Initial Hemodialysis

&lt;p&gt;本文為一位青少女因IgA腎病初次接受血液透析治療，疾病進展快速，使個案及案父母產生焦慮及照護認知不足之護理經驗。護理期間自2020年06月15日至07月10日，運用Gordon十一項健康功能型態評估，以直接照護、會談、身體評估及跨科部會議等方式收集資料，確立個案健康問題有:營養不均衡、焦慮、照顧者角色緊張。照護過程中，透過陪伴、傾聽與案家建立信任之護病關係，藉由飲食日誌設計個別性菜單、透過跨科部會議調整飲食攝取模式，以改善營養不均衡；利用漫畫繪本、健康管理工具，提升自我照護技能，減輕其焦慮；同理父母心理壓力，討論照護工作之分配、喘息減壓方式，降低照顧負荷，使個案學會自主健康管理，進而達到親子共責之健康管理模式。因應蔬食飲食人口的增加，建議偕同營養師設計「透析素食菜單」，讓病人保有自己喜好的飲食模式，以增加疾病的適應性，藉此護理經驗作為日後照護此類病人之參考。&lt;/p&gt; &lt;p&gt; &lt;/p&gt;&lt;p&gt;We reported a young girl who began to receive hemodialysis due to IgA nephropathy. Our nursing experience focus on her and her parents&amp;rsquo; anxiety and lack of caring cognition due to rapidly progressive disease. During our nursing period from June 15th to July 10th, 2020, we used the &amp;ldquo;Gordon 11 Function Health Patterns&amp;rdquo; to collect data by direct care, interviews, physical examination and multi-disciplinary discussion. We found that our case had health problems including nutritional imbalance, anxiety and caregiver role strain. Furthermore, we established a trusting relationship by accompany, listening and building trust with her family. We used diet diaries to create individualized menu, used interdisciplinary team meetings to improve nutritional imbalances, and used comic books and health management tools to improve self-care skills and reduce anxiety. We empathized with parents&amp;rsquo; psychological pressure, discussed the distribution of care work, provided respite care, reduced care load, taught her self-health management and then achieved the health management model of parent-child shared responsibility. In response to the increase in the population of vegetarian, we designed a &amp;quot;vegetarian menu for dialysis&amp;quot; with our dietitian. Therefore, the patients could maintain their own dietary preference to increase the adaptability to diseases. We took this nursing experience as a reference for the care of such patients in the future.&lt;/p&gt; &lt;p&gt;&amp;nbsp;&lt;/p&gt;

Caregiver Burden and Depression Among Caregivers of Patients with Chronic Disease

Introduction: Caring for people with chronic diseases is physically and emotionally demanding. It can also have adverse effects on the caretaker, such as depression. Caregiver burden describes the psychological and financial strains of providing care. Depression in caregivers’ manifests as concern, indecision, and an inability to feel the future. Chronic disease is a condition that takes a long time to treat and may progressively get worse over time. This study aims to identify the level of caregiver burden and depression and the correlation between burden and depression among caregivers of patients with chronic diseases. Methods: A self-administered questionnaire containing the Caregiver Burden Inventory and Beck Depression Inventory was used to measure caregiver burden and depression among 217 caregivers of patients with chronic diseases in a teaching hospital in the Klang Valley. Results: The findings showed that the majority of caregivers experienced a mild burden (n = 168, 77.4%), a moderate burden (n = 43, 19.8%), and a severe burden (n = 6, 2.8%). Following mild depression (n = 17, 7.8%), moderate depression (n = 15, 6.9%), and severe depression (n = 4, 1.8%), some caregivers experienced minimal depression (n = 181, 83.4%). According to Pearson's analysis, the link between caregiver burden and depression was statistically significant (p&lt;0.000) with a positive correlation (r = 0.408). Conclusion: In this study, caregivers experienced burden and depression due to providing care. Future studies should incorporate support and resources for caregivers, including respite care and counselling that can promote overall well-being.

Healthcare and social care professionals’ experiences of respite care: a critical incident study

ABSTRACT Introduction Aging in place is favoured among older persons and supported by research in Sweden, although it poses challenges for overburdened informal caregivers. While respite care can offer support, its accessibility is hindered by organizational challenges and informal caregivers’ delays in using it. The experiences of informal caregivers are well-studied, but the professionals’ experiences of respite care quality and critical incident management are underexplored. Aim To explore professionals’ experiences of critical incidents in respite care, consequences for the persons being cared for, and strategies to manage critical incidents. Materials and methods A qualitative, critical incident technique was used, and three group interviews with a total of 16 professionals were conducted. Results Barriers to quality respite care included communication gaps during care transitions, environmental shortcomings in respite care facilities, lack of support for informal caregivers, and inadequacies in respite care decisions. Strategies to manage critical incidents included individualized care, continuity and communication in care transitions, a conducive environment, support for informal caregivers, and care professionals’ positive approach. Conclusions The study emphasizes the need for focused efforts on communication, continuity, and a supportive environment. Addressing identified challenges and applying suggested strategies will be key to maximizing the potential of respite care as a vital support for care recipients and their informal caregivers.

Improving Inpatient Respite Care: A Collaboration with ALS Patients and Caregivers

Improving Inpatient Respite Care: A Collaboration with ALS Patients and Caregivers

Delivering the Right Care, at the Right Time, in the Right Place, From the Right Pocket: How the Wrong Pocket Problem Stymies Medical Respite Care for the Homeless and What Can Be Done About It.

Delivering the Right Care, at the Right Time, in the Right Place, From the Right Pocket: How the Wrong Pocket Problem Stymies Medical Respite Care for the Homeless and What Can Be Done About It.

In-Home Respite Care Services Available to Families With Palliative Care Needs in Quebec: Novel Digital Environmental Scan.

Caregiving dyads in palliative care are confronted with complex care needs. Respite care services can be highly beneficial in alleviating the caregiving burden, supporting survivorship and dying at home. Yet, respite care services are difficult to locate and access in the province of Quebec, Canada, particularly when navigating ubiquitous sources of online health information of varying quality. This project aimed to (1) compile a list of at-home palliative respite care services in Quebec, Canada; (2) describe key accessibility features for each respite care service; (3) identify accessibility gaps and opportunities; and (4) describe a novel method for conducting environmental scans using internet search engines, internet-based community health databases, and member checking. A novel environmental scan methodology using 2 internet-based targeted databases and 1 internet search engine was conducted. Results were screened and data were extracted, descriptively analyzed, and geographically schematized. A total of 401 services were screened, and 52 at-home respite care services specific to palliative populations were identified, compiled, and analyzed. These respite care services were characterized by various types of assistance, providers, fees, and serviced geographical regions. Accessibility was explored through the lens of service amenability, availability, eligibility, and compatibility. The data revealed important barriers to accessing respite care services, such as a lack of readily available information on service characteristics, limited availability, and a time-consuming, technical search process for potential respite care users and clinicians to identify appropriate services. Both methodological and contextual knowledge have been gained through this environmental scan. Few methodologies for conducting internet-based environmental scans have been clearly articulated, so we applied several learnings from other scans and devised a methodology for conducting an environmental scan using the mixed methods of internet search engines, internet-based community health databases, and member checking. We have carefully reported our methods, so that others conducting community health environmental scans may replicate our process. Furthermore, through this scan, we identified assorted respite care services and pinpointed needs in the provision of these services. The findings highlighted that more easily accessible and centralized information about respite care services is needed in Quebec. The data will enable the creation of a user-friendly tool to share with community support services across Quebec and ultimately help alleviate the added burden caregivers and clinicians face when looking for respite care services in fragmented and complex digital spaces.

Perceived Threat of Alzheimer’s Disease and Related Dementias Among Chinese Family Caregivers of Older Adults with Cognitive Impairment

ABSTRACT Perceived threat of Alzheimer’s disease and related dementias (ADRD) has been found a widespread phenomenon in developed countries, but has not yet been fully explored in developing countries. Analyzing data from 300 family caregivers of older adults with cognitive impairment in China, this study found caregiver burden was positively associated with the perceived threat of ADRD, and this association was buffered by higher family income and longer caregiving time. To alleviate undue ADRD concerns, it suggests expanding respite care and community elder care beds, and initiating education programs on reducing unnecessary worries about developing ADRD.

Grandparent Caregivers Lived Experiences and Resource Needs/Use During the COVID-19 Pandemic

ABSTRACT This project examined the impacts of the COVID-19 pandemic on grandparent caregivers, grandchildren, family dynamics, and resources to mitigate and navigate crises. Phone interviews were conducted with 24 grandparent caregivers using a semi-structured interview guide. Caregivers explained that the pandemic had impacted them and their grandchildren by increasing emotional distress, social isolation, financial difficulties, and challenges with education. Helpful resources consisted of financial support, respite care, and support for grandchildren. Thus, there is a need to provide grandparent caregivers with the same resources that foster care providers receive - particularly when faced with challenges such as the COVID-19 pandemic.