-
International Journal of Environmental... Jul 2023This qualitative research study is a part of a larger research project exploring the experiences of young caregivers aged 5-26 years and their families navigating the...
The Impact of Public Health Restrictions on Young Caregivers and How They Navigated a Pandemic: Baseline Interviews from a Longitudinal Study Conducted in Ontario, Canada.
This qualitative research study is a part of a larger research project exploring the experiences of young caregivers aged 5-26 years and their families navigating the COVID-19 pandemic between 2020 to 2023. Data were collected from 14 young caregivers who participated in baseline interviews. The central research question guiding this study: What was, is, and will be the impact of changing public health restrictions on young caregivers and their families during the pandemic and pandemic recovery? Seven themes emerged through analysis: (1) Navigating Care During the Height of Public Health Restrictions, (2) Neighbourhood and Built Environment During the Pandemic, (3) Perceptions Towards COVID-19 and Public Health Restrictions/Efforts, (4) The Impact of Public Health Restrictions on Relationships, (5) Mental Health Challenges of Being a Young Caregiver During a Pandemic, (6) Navigating Formal Services and Supports, and (7) Recommendations from Young Caregivers. The findings from this empirical research suggest that young caregivers found it easier to navigate their caregiving responsibilities when public health restrictions and work-from-home mandates were initially implemented; however, this later changed due to challenges in finding respite from caregiving, maintaining social connections with friends, creating personal space at home, and finding adequate replacements for programs once offered in person.
Topics: Humans; Ontario; Caregivers; Pandemics; Longitudinal Studies; Public Health; COVID-19
PubMed: 37510642
DOI: 10.3390/ijerph20146410 -
Current Oncology (Toronto, Ont.) Jun 2023Home-based informal caregivers (CGs), such as the family members and friends of cancer patients, often suffer averse emotional symptoms, such as anxiety and depression,...
Home-based informal caregivers (CGs), such as the family members and friends of cancer patients, often suffer averse emotional symptoms, such as anxiety and depression, due to the burden associated with providing care. The natural environment has been valued as a healing sanctuary for easing emotional pain, promoting calmness, relaxation, and restoration. The use of virtual reality (VR) nature experiences offers an alternative option to CGs to manage emotional symptoms and improve their quality of life. The aim of this mixed-method pilot was to evaluate the feasibility and acceptability of a nature-based VR experience for home-based CGs. Nine informal CGs participated in a 10 min nature-based VR session and completed feasibility, acceptability, and VR symptom measures in the laboratory. Semi-structured interviews with five of the CGs provided qualitative data regarding their experiences with VR. The CGs (mean age 64.78 years) were mostly female (n = 7). Our analysis showed high feasibility (15.11 ± 1.76; range 0-16) and acceptability (15.44 ± 1.33; range 0-16), as well as low VR Symptoms (1.56 ± 1.33; range 0-27). Participants primarily expressed positive perceptions regarding VR feasibility and acceptability during interviews. Our findings show promise for the use of VR nature experiences. In the next phase of the study, the intervention will be tested on home-based informal CGs of patients at end of life.
Topics: Humans; Female; Middle Aged; Male; Caregivers; Feasibility Studies; Quality of Life; Affect; Virtual Reality
PubMed: 37504309
DOI: 10.3390/curroncol30070448 -
Frontiers in Psychiatry 2023The number of people diagnosed with dementia is increasing, creating significant economic burden globally. With the progression of the disease, patients need a caregiver...
INTRODUCTION
The number of people diagnosed with dementia is increasing, creating significant economic burden globally. With the progression of the disease, patients need a caregiver whose wellbeing is important for continuous care. Providing respite as a service, through sharing the responsibility of caregiving or support for the caregiver, is a costly initiative. A peer-to-peer online support platform for dementia caregivers, motivated by the sharing economy, putting exchange of knowhow, resources, and services at its center, has the potential to balance cost concerns with a search for respite. The aim of this research is to assess caregivers' intention to engage in peer-to-peer exchange.
METHODS
A survey including sociodemographic, technology use, and caregiving variables, structured questionnaires (Zarit caregiver burden, WHO brief quality of life scale, ADCS-ADL and chronic stress scale) were administered, January 2018-May 2019, in the dementia outpatient clinic of a university hospital, to a convenience sample of = 203 individuals identifying themselves as primary caregivers. A path analysis exploring the drivers of an intention to engage in peer-to-peer service exchange was conducted.
RESULTS
In the path model, caregivers experiencing higher caregiver burden showed higher intention to engage (0.079, < 0.001). Disease stage had no effect while patient activities of daily living, chronic social role related stressors of the caregiver and general quality of life were significant for the effect on the caregiver burden. Existing household support decreased the caregiver burden, affecting the intention to engage. Caregivers who can share more know-how demonstrate a higher intention to engage (0.579, = 0.021). Caregiver technology affinity (0.458, = 0.004) and ability and openness to seek professional help for psychological diagnoses (1.595, = 0.012) also increased intention to engage.
CONCLUSION
The model shows caregiver burden to be a major driver, along with caregiver characteristics that reflect their technology affinity and openness to the idea of general reciprocity. Existing support for obtaining knowhow and exchanging empathy have a direct effect on the intention to engage. Given the scarcity of caregiver support in the formal care channels, the identified potential of enlarging informal support via a peer-to-peer exchange mechanism holds promise.
PubMed: 37484665
DOI: 10.3389/fpsyt.2023.1208594 -
PloS One 2023The most recent cost estimates of cerebral palsy (CP) in Australia did not include out-of-pocket costs for families. This study aimed to: 1) describe and estimate...
The most recent cost estimates of cerebral palsy (CP) in Australia did not include out-of-pocket costs for families. This study aimed to: 1) describe and estimate out-of-pocket costs for people with CP and their families by age and gross motor function classification system (GMFCS) level; 2) measure financial distress. A cross-sectional quantitative survey design was used with qualitative approaches to analyse open-ended questions. A CP-specific out-of-pocket costs survey was co-designed with people with lived experience. Adults with CP and carers were recruited from Australian population-based CP Registers and via social media. Sociodemographic variables were analysed descriptively and median (IQR) expenses for health, assistive technology, personal care, housing, occupation, transport, leisure, respite and holidays, by age (0-6; 7-17; 18 years +) and gross motor function [GMFCS level I-II vs III-V] were calculated. The In Charge Financial Distress/Financial Wellbeing Scale measured financial distress. Regression analyses were conducted to investigate costs and financial distress. Additional out-of-pocket costs itemised in open-ended questions were charted. Comments were thematically analysed using the framework approach. 271 surveys were completed for children 0-6 years (n = 47), children/adolescents 7-17 years (n = 124) and adults (n = 100). 94% of participants had out-of-pocket costs associated with CP, with an overall annual median of $4,460 Australian dollars (IQR $11,955). After controlling for income, private insurance and disability funding, the GMFCS III-V group had costs two times higher than the GMFCS I-II group (2.01; 95% CI 1.15-3.51). Age was not significantly associated with costs. 36% of participants had high to overwhelming financial distress; this was not associated with age or GMFCS level after controlling for financial factors. Families had several additional disability costs. Open-ended responses revealed experiences of financial concern were influenced by funding scheme experiences, reduced income, uncertainty, access to support networks and an inability to afford CP-related costs. Cost estimates and financial distress indicators should inform policy, funding and clinical decisions when planning interventions to support people with CP and their families.
Topics: Child; Adult; Adolescent; Humans; Cerebral Palsy; Cross-Sectional Studies; Health Expenditures; Australia; Leisure Activities
PubMed: 37471345
DOI: 10.1371/journal.pone.0288865 -
BMC Geriatrics Jul 2023The prescription of psychotropic medication to older people living with dementia in residential aged care has become an increasing concern. The use of prescription...
BACKGROUND
The prescription of psychotropic medication to older people living with dementia in residential aged care has become an increasing concern. The use of prescription medication is often prefaced as a way of preventing harm to self and others. However, the use of such medications has been considered a way of managing some of the behavioural and psychological symptoms of dementia. Using a large secondary data set, this study aimed to identify the precursors and mediating factors that influence the use of chemical restraint of older people in residential aged care.
METHODS
Publicly available documents from the Australian Royal Commission into Aged Care Quality and Safety were used as the data corpus for this study. Keywords were used to search over 7000 documents to extract a set of topic-related content. We identified the cases of seven people in respite or permanent residential aged care who had been prescribed or administered psychotropic medication under circumstances that appeared to demonstrate chemical restraint. All documents relating to the cases were collated for our data set. A descriptive case study approach to analysis was taken.
RESULTS
Four key descriptive patterns were identified: labelling and limits to tolerance, pushing prescription as a solution, coverups and avoiding consent, and family's fight for liberty. Triangulation across the data and academic literature supports the findings.
CONCLUSION
Our findings provide some insight into how chemical restrain happens. Featuring throughout the cases were reports of a lack of workforce capacity to care for and support residents exhibiting dementia behaviours. Prescription of psychotropic medications featured as a "first resort" care solution. Family and friends found such approaches to care unacceptable and frequently challenged the practice. Where consent for prescription was explicitly denied, more covert approaches are demonstrated. Family awareness, presence, and advocacy were key to challenging the practice of chemical restraint. Shortfalls in the capacity of the current workforce come into play here. However, workforce shortcomings can no longer mask this ubiquitous practice. Just as importantly the spotlight needs to be turned on the prescribers and the providers.
Topics: Humans; Aged; Dementia; Australia; Psychotropic Drugs; Prescription Drugs; Quality of Health Care
PubMed: 37468889
DOI: 10.1186/s12877-023-04116-5 -
Hormone Research in Paediatrics 2024The management of childhood type 1 diabetes requires the active participation of parents. The aim of the present study was to describe the main characteristics of... (Observational Study)
Observational Study
INTRODUCTION
The management of childhood type 1 diabetes requires the active participation of parents. The aim of the present study was to describe the main characteristics of parents of children with type 1 diabetes, including objective burden regarding time spent on diabetes care, emotional distress (exhaustion, need for respite, quality of life), and symptoms of depression as well as anxiety.
METHODS
In this observational study, parents of children with type 1 diabetes completed a questionnaire, anonymously. Different questions were asked to the parent about the objective burden of diabetes and its repercussion, their exhaustion, and their need for respite. Two validated instruments (HADS, WHOQOL-BREF) have been integrated into the questionnaire.
RESULTS
Eighty-eight parents were included in the study. Among them, 76 (86%) were mothers. All the parents with a child aged 6 years or younger (10/10) reported having to take care of their child's diabetes twice or more a day; this was the case for 37/39 (94.9%) parents of children aged 7-13 and for 16/36 (44.4%) parents of children aged 14 years or above. In the total population, 33/86 (38.4%) parents declared getting up every night because of their child's diabetes. The median daily time spent on diabetes management was 40 min. There were 54 parents (62.8%) who reported moderate-strong exhaustion and 27 (30.7%) who expressed a moderate-strong need for respite. Regarding the result of the HADS, 46 parents (55.4%) reported symptoms of anxiety and/or depression.
CONCLUSION
Parents of children with type 1 diabetes must carry out multiple daily care tasks, at all times of day and night. Their emotional state can be impacted with, in particular, a risk of exhaustion. Screening for these difficulties should be a part of the overall management of a child with type 1 diabetes and his family to limit various complications.
Topics: Humans; Diabetes Mellitus, Type 1; Child; Female; Male; Parents; Adolescent; Adult; Psychological Distress; Surveys and Questionnaires; Quality of Life; Child, Preschool; Anxiety; Cost of Illness; Stress, Psychological; Depression
PubMed: 37442105
DOI: 10.1159/000531885 -
Journal of Anesthesia, Analgesia and... Jan 2023Adult and pediatric palliative care (PC) share common aims and ethical principles but differ in many organizational and practical aspects. The aim of this narrative... (Review)
Review
Adult and pediatric palliative care (PC) share common aims and ethical principles but differ in many organizational and practical aspects. The aim of this narrative review is to analyze these differences and focus on which key aspects of pediatric palliative care could integrate adult services for a better care of suffering patients.Interventions which are peculiar of pediatric PC respect to adult PC include: an earlier referral to the PC service to identify the needs and plan the interventions at an earlier stage of the disease; consequently, a more systematic cooperation with the disease-specific physicians to reduce the burden of treatments; a better integration with the community and the social surroundings of the patients, to prevent social isolation and preserve their social role; a more dynamic organization of the PC services, to give patients the chance of being stabilized at in-hospital or residential settings and subsequently discharged and cared at home whenever possible and desired; the implementation of respite care for adults, to help the families coping with the burden of the disease of their beloved and promote the home-based PC.This review underlines the relevance of some key-aspects of pediatric PC that can be beneficial also within PC of adults. Its findings give the chance for a more dynamic and modern organization of adult PC services and may serve as a basis of future research for new interventions.
PubMed: 37386675
DOI: 10.1186/s44158-023-00085-8 -
BMJ Open Jun 2023Respite for families of children and youth with special healthcare needs (CYSHCN) is essential for sustaining a family care environment. Lacking is an understanding of...
Respite care: qualitative arts-based findings on the perspectives and experiences of families of children and youth with special healthcare needs residing in Manitoba, Canada.
OBJECTIVES
Respite for families of children and youth with special healthcare needs (CYSHCN) is essential for sustaining a family care environment. Lacking is an understanding of families' respite experiences who reside in Canada. We sought to understand experiences of the use of respite services by families with CYSHCN with the aim to help improve respite services. This paper reports on the qualitative arts-based findings.
DESIGN
Qualitative methods including open-ended interviews combined with the arts-based methods of ecomaps and the photovoice process were used. Analysis involved delineating units of meaning from the data, clustering units of meaning to form thematic statements and extracting themes.Manitoba, a western Canadian province.
PARTICIPANTS
Thirty-two families (including 38 parents and 13 siblings) of CYSHCN.
RESULTS
We identified six themes surrounding challenges experienced by families' in their journeys accessing, acquiring and navigating the respite care system, and sustainment of respite care for their families, leading to familial burn-out and breakdown, financial stress, unemployment and unaddressed mental health struggles. Families provided multipronged recommendations to address these challenges.
CONCLUSIONS
Through the lens of Canadian families of children with a range of complex care needs, the qualitative arts-based portion of the study underscores the challenges with accessing, navigating and sustaining respite care, which has implications for CYSHCN, their clinicians and the potential for long-term costs for government and society. This study identifies the state of the current Manitoba respite care system as an issue, presenting actionable recommendations from families that can assist policymakers and clinicians in advocating for and implementing a collaborative, responsive, family-centred system of respite care.
Topics: Adolescent; Child; Humans; Manitoba; Canada; Respite Care; Burnout, Psychological; Cluster Analysis
PubMed: 37385743
DOI: 10.1136/bmjopen-2023-073391 -
Frontiers in Public Health 2023The aim of this study was to analyze the status quo and associated factors of care recipients' perceptions of caregivers' willingness to provide care among disabled...
OBJECTIVE
The aim of this study was to analyze the status quo and associated factors of care recipients' perceptions of caregivers' willingness to provide care among disabled older adults in China. Thus, this study contributes to our understanding of vulnerable older populations who are at a high risk of receiving support from informal caregivers who are unable or unwilling to take the caregiver role.
METHODS
We analyzed the cross-sectional data of 3,539 disabled older adults who received informal care at home from the seventh wave of the 2018 Chinese Longitudinal Healthy Longevity Survey (CLHLS). Multiple logistic regression models were used to examine the variables associated with the respondents' perceived caregivers' willingness to care from five aspects: respondents' sociodemographic attributes, health-related data, family endowment, access to health care services and community-based long-term care services (CBLTCS).
RESULTS
This study found that the majority of disabled older adults (90.9%) had a positive attitude toward their caregivers' willingness to care and the care they received; however, 7.0% of the adults were concerned about their caregivers' ability to handle the care. Moreover, there was a small number of disabled older people (2.1%) who felt that their caregivers were reluctant to care or lacked patience. The results from the multiple logistic regression showed that disabled older adults with socioeconomic disadvantages (living in rural areas, being poor and with no children who frequently visited) or high demand (with severe disabilities or cognitive impairment) were more likely to consider that their caregivers needed respite care. Those adults with anxiety symptoms, a lower amount of care time, poor self-rated financial status and poor accessibility to health care services were more likely to report that their caregivers were reluctant to administer care.
CONCLUSION
This study found that living in rural areas, being poor, with no children who frequently visited, severe disabilities or CI were positively associated the care recipients' perception that caregivers needed respite care. While anxiety symptoms, a lower amount of care time, poor self-rated financial status and poor accessibility to health care services were significantly associated with care recipients' perception of caregivers' reluctance to care. Our findings highlight the awareness of monitoring informal carers' willingness to care or capability to enact caring tasks.
Topics: Humans; Aged; Caregivers; Cross-Sectional Studies; Disabled Persons; Health Status; Longitudinal Studies
PubMed: 37342270
DOI: 10.3389/fpubh.2023.1170594 -
The Gerontologist Feb 2024Little is known about how race/ethnicity and geographic context relate to support service use among dementia caregivers. Our objectives were to investigate (a) whether...
BACKGROUND AND OBJECTIVES
Little is known about how race/ethnicity and geographic context relate to support service use among dementia caregivers. Our objectives were to investigate (a) whether the use of at least one formal caregiving service-support groups, respite care, and training-differed by race/ethnicity and across metro and nonmetro areas; and (b) whether predisposing, enabling, and need characteristics influenced support service use by race/ethnicity.
RESEARCH DESIGN AND METHODS
Data were analyzed from a sample of primary caregivers of care recipients aged 65 years or older with probable dementia (n = 482) in the 2017 National Health and Aging Trends Study and National Study of Caregiving. We calculated weighted prevalence estimates and then used the Hosmer-Lemeshow goodness of fit statistic to find the best-fitting logistic regression models.
RESULTS
Among minority dementia caregivers, support service use was higher in metro than nonmetro areas (35% and 15%); the trend was reversed for non-Hispanic White caregivers (47% nonmetro and 29% metro). The best-fitting regression models included predisposing, enabling, and need factors for both minority and non-Hispanic White caregivers. Younger age and more disagreement within the family were consistently associated with more service use in both groups. Among minority caregivers, better caregiver and care recipient health were associated with using support services. Among non-Hispanic White caregivers, nonmetro geographic context and caregiving interfering with valued activities were associated with using support services.
DISCUSSION AND IMPLICATIONS
Geographic context differently affected support service use and the influence of predisposing, enabling, and need factors varied by race/ethnicity.
Topics: Humans; Caregivers; Aging; Health Services; Ethnicity; Dementia
PubMed: 37318017
DOI: 10.1093/geront/gnad067