Dataset Information

Perceptions on Connecting Respite Care Volunteers and Caregivers.

ABSTRACT: The most common requirement for informal caregivers is to experience a respite or temporary break from their caregiving routine. Some initiatives have been undertaken to provide respite care through volunteer providers. We report on a qualitative study carried out in Santiago, Chile, to learn about the willingness of potential volunteers to provide respite care for bedridden older persons, as well as their willingness to use information and communication technologies (ICT) to connect to caregivers in a low-income neighbourhood within their own geographic district. A trustworthy institution that mediates the volunteer-caregiver relationship is considered to be important by potential volunteers. Potential volunteers were found to be willing to use ICT to provide respite care, sharing basic information about themselves. However, they were also aware of the digital skill gap that may exist between them and the caregivers and were distrustful of unknown websites that could connect them to care recipients.

SUBMITTER: Campos-Romero S

PROVIDER: S-EPMC7215678 | biostudies-literature | 2020 Apr

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Perceptions on Connecting Respite Care Volunteers and Caregivers.

Campos-Romero Solange S Herskovic Valeria V Fuentes Carolina C Abarca Esmeralda E

International journal of environmental research and public health 20200423 8

The most common requirement for informal caregivers is to experience a respite or temporary break from their caregiving routine. Some initiatives have been undertaken to provide respite care through volunteer providers. We report on a qualitative study carried out in Santiago, Chile, to learn about the willingness of potential volunteers to provide respite care for bedridden older persons, as well as their willingness to use information and communication technologies (ICT) to connect to caregive ...[more]

PMID: 32340190

Similar Datasets

Project description:PURPOSE:Parents of children with special healthcare needs may become overwhelmed with the ongoing caregiving needs of their children. Caring for a child with special healthcare needs is often challenging, requiring specialized training in many cases. As a result, parents can struggle to find qualified caregivers capable of providing them a break from the 24/7 care of their child. Respite care programs are designed to provide caregivers with a much-needed temporary break. The purpose of this study was to examine parental perceptions of utilizing a respite care program. DESIGN AND METHODS:Twenty-two parents who had a child with special healthcare needs who attended a Midwestern respite care program completed a Participant Characteristic Form addressing their experiences caring for their child with special healthcare needs and using respite care services. Parents participated in a focus group (N = 4) to explore their perceptions and experiences of respite care participation. Multistage thematic analysis and descriptive statistics were used to analyze the data. RESULTS:Themes emerging from the data included: Constant care demands; It is just so stressful; Respite is a gift, we get a break; Respite program "fit"; and Respite is their special time too. Parents emphasized the benefits of respite care for their marital relationship, as well as the benefits to the children with special healthcare needs and their siblings. Parents also described the importance of tailoring respite care to the unique needs of their family. PRACTICE IMPLICATIONS:Nurses and other healthcare professionals play a critical role in addressing the unmet respite care needs of parents of children with special healthcare needs by identifying unmet needs and making appropriate referrals to services that will meet the unique needs of the family. Healthcare professionals can also volunteer with existing programs to help expand access to respite care services and increase the availability of adequately trained respite care providers whom parents can trust to provide for the complex healthcare needs of their children.

Project description:BackgroundPersons with dementia with mild to moderate cognitive impairment are at risk for developing impairments with activities of daily living such as the ability to feed oneself, that negatively influence health. Lack of caregiver skills related to mealtime planning for persons with dementia and the ability to cope with dysfunctional behaviors are well-documented factors that influence nutritional status outcomes, lead to weight loss, poor quality of life, and impact their ability to remain at home.MethodsA cluster randomized controlled trial with a parallel mixed methods evaluation processes will be conducted to examine the efficacy of a train-the-trainer program using non-paid volunteers in respite care centers to deliver a telehealth mealtime intervention guided by the theory-based C3P Model-Change the Person, Change the People, Change the Place (C3P). In this six-month study, dyads of caregivers and persons with mild to moderate dementia receiving respite care services will be randomized to receive either the telehealth intervention or enhanced usual care. Within the intervention group, dyads will be partnered with a C3P trained volunteer who will work with caregivers via videoconference to devise and implement mealtime plans. Under usual care, dyads will receive standardized educational materials modified from The Savvy Caregiver Program for Alzheimer's disease. The primary outcomes include weight maintenance or gain of the person with dementia and quality of life of the caregiver. A multi-level evaluation process utilizing respite center administrators and directors, volunteers, and caregivers will explore intervention fidelity, acceptability and sustainability. Using both the CONSORT and SPIRIT checklists as guidance, the comprehensive study design is more fully described in this manuscript.DiscussionIn this trial, we will lay the groundwork to examine the efficacy and sustainability of a train-the-trainer telehealth program that could be widely disseminated by national Alzheimer's organizations and readily adopted by community agencies to provide additional resources to assist families in managing mealtimes at home, while promoting the quality of life of both the caregiver and the person with dementia.Trial registrationThis study was registered with clinicaltrials.gov: NCT03622814 on August 9, 2018..

Project description:BackgroundFrequent hospitalization and permanent nursing home placement not only affect the well-being of persons with dementia, but also place great financial strain on society. Therefore, it is important to create effective strategies to support informal caregivers so that they can continue to perform their demanding role. Preliminary qualitative evidence suggests that community-based respite services can actually be important for caregivers, and that the level of evidence should be further established in terms of effectiveness. Therefore, a comparative study to assess the effectiveness and cost-effectiveness of an in-home respite care program will be initiated.MethodsThis manuscript described a quasi-experimental study to assess (cost)-effectiveness of an in-home respite care program to support informal caregivers of persons with dementia.Study population124 informal caregivers and persons with dementia will be included in the intervention group and will receive an in-home respite care program by an organization called Baluchon Alzheimer. 248 dyads will be included in the control group and will receive standard dementia care. The primary outcome is caregiver burden. Secondary outcomes are: quality of life of caregivers, frequency of behavioral problems of persons with dementia and the reactions of caregivers to those problems, intention to institutionalize the care-recipient, time to nursing home placement, resource use of the care-recipient, and willingness to pay for in-home respite care. When the trial demonstrates a difference in outcomes between both groups, within-trial and modeled cost-effectiveness analyses will be conducted in a separate economic evaluation plan to evaluate possible cost-effectiveness of the in-home respite care program compared to the control group receiving standard dementia care. Finally, the model based cost-effectiveness analyses will allow to extrapolate effects over a longer time horizon than the duration of the trial.DiscussionThis study will have great added value because to date no studies measured effectiveness and cost-effectiveness of an in-home respite care program of the Baluchon type. Results of this trial can thus give much more insight in potential benefits and disadvantages of community-based respite care. Conclusions based on this trial can help policy-makers in elaborating future directions of dementia care.Trial registrationClinicaltrials.gov Identifier NCT02630446 .

Project description:BackgroundFamily 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.MethodsA 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.ResultsAbout 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.ConclusionsUtilization 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.

Project description:BACKGROUND:Adolescents with chronic health conditions and/or disabilities (CHC/D's) often face challenges when transitioning to adult care, which leads to a higher risk of morbidity and mortality. Although it is recommended that establishing the medical home and family physician (FP) attachment prior to transfer will improve health outcomes, there is little evidence or policy surrounding the role of the FP during this transition. This study explores the described use of health services by adolescents with CHC/D's, as well as the adolescent's and caregiver's perceptions of their FP. METHODS:Participants were recruited from the British Columbia Children's Hospital, Canada and a multi-method phased approach was used. In Phase 1, 84 adolescent and caregiver pairs completed questionnaires asking what medical services they accessed for specific health needs. In Phase 2, another cohort of 21 adolescent and caregiver pairs completed the same questionnaires and were interviewed regarding their perception of their FP. RESULTS:96% (n =?81) of adolescents with CHC/D's in phase 1 had a FP. Thirty four percent (n =?34) of adolescents had not seen their FP in the last 6 months. While adolescents with CHC/D mostly accessed their FP for primary health issues, they frequently also accessed specialists for prescription refills (50%, n =?51), mental health (29%, n =?30) and sexual health (16%, n =?16). While most adolescent/caregiver participants reported positive communication and trust in their FP, some had a poor understanding of the FP's role in coordinating care. CONCLUSION:As many adolescents with CHC/D may see their FP infrequently and may not clearly understand their role, opportunities exist for strengthening primary care home attachment as well as adolescent and caregiver literacy around the potential contribution of the FP during and after transfer to adult services. Responsibility for improving care coordination for this population should be ideally shared between FPs and pediatric specialists.

Dataset Information

Perceptions on Connecting Respite Care Volunteers and Caregivers.

Publications

Perceptions on Connecting Respite Care Volunteers and Caregivers.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets