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Why do family dementia caregivers reject caregiver support services? Analyzing types of rejection and associated health-impairments in a cluster-randomized controlled intervention trial.

ABSTRACT: BACKGROUND:Although there are a number of support services accessible for most family dementia caregivers, many caregivers reject available and affordable support. Previous research suggests that rejections of support services may result from insufficient fit of available services with caregivers' unmet needs and a lack of acknowledgement of caregivers' unmet needs and associated support services. The present study investigates (a) the number, proportion and types of caregivers' rejection on recommended tailored support, (b) socio-demographic and clinical determinants of caregiver's rejection of both people with dementia (PwD) and caregivers, and (c) caregivers' health-related variables related to caregivers' rejection. METHODS:Caregivers' rejection of tailored support services was identified based on a standardized, computerized unmet needs assessment conducted by dementia-specific qualified nurses. The present analysis is based on data of n?=?226 dyads of caregivers and their community-dwelling PwD who participated in a general practitioner (GP)-based, cluster-randomized intervention trial. The trial was approved by the Ethical Committee of the Chamber of Physicians of Mecklenburg-Western Pomerania, registry number BB 20/11. Data analyses were conducted using Stata/IC 13.1. We conducted Welch's t-test, Pearson's product-moment correlation, and conditional negative binomial regression models with random effects for GP to account for over-dispersed count data. RESULTS:In sum, n?=?505 unmet needs were identified and the same number of tailored recommendations were identified for n?=?171 family dementia caregivers from the intervention group at baseline. For n?=?55 family dementia caregivers not a single unmet need and recommendation were identified. A total of 17.6% (n?=?89) of the recommendations were rejected by caregivers. Rejection rates of caregivers differed by type of recommendation. Whereas caregivers' rejection rate on recommendations concerning mental health (3.6%), physical health (2.5%), and social, legal, and financial affairs (0%) were low, caregivers' rejection rates concerning social integration (especially caregiver supporting groups) was high (71.7%). Thus, the rejections of family dementia caregivers are mainly linked to the delegation to caregiver supporting groups. Caregivers' rejections were mainly related to personal factors of caregivers (n?=?66), service-related factors (n?=?6), relational factors (n?=?1), and other factors (n?=?17). Furthermore, our results showed that the number of caregivers' rejections was associated with a higher functional status of the PwD and are mainly associated with the rejection of caregiver supporting groups. Thus, caregivers visit supporting groups more often when the PwD shows low abilities in activities of daily living. Importantly, this is independent of the status of cognition and depression of the PwD as well as the physical and mental health of the family dementia caregivers. CONCLUSIONS:Our results underline the importance of understanding factors that determine caregivers' rejection of support services. These need to be specifically addressed in tailored solutions for caregivers' support services. TRIAL REGISTRATION:ClinicalTrials.gov Identifier: NCT01401582 (date: July 25, 2011, prospective registered).

SUBMITTER: Zwingmann I

PROVIDER: S-EPMC7023728 | biostudies-literature | 2020 Feb

REPOSITORIES: biostudies-literature

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Why do family dementia caregivers reject caregiver support services? Analyzing types of rejection and associated health-impairments in a cluster-randomized controlled intervention trial.

Zwingmann Ina I Dreier-Wolfgramm Adina A Esser Alexander A Wucherer Diana D Thyrian Jochen René JR Eichler Tilly T Kaczynski Anika A Monsees Jessica J Keller Armin A Hertel Johannes J Kilimann Ingo I Teipel Stefan S Michalowsky Bernhard B Hoffmann Wolfgang W

BMC health services research 20200214 1

<h4>Background</h4>Although there are a number of support services accessible for most family dementia caregivers, many caregivers reject available and affordable support. Previous research suggests that rejections of support services may result from insufficient fit of available services with caregivers' unmet needs and a lack of acknowledgement of caregivers' unmet needs and associated support services. The present study investigates (a) the number, proportion and types of caregivers' rejectio ...[more]

PMID: 32059724

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Project description:There are currently 15 million Americans who provide over 80% of the care required by their family members with Alzheimer's disease and other dementias. Yet care for caregivers continues to be fragmented and few evidence-based interventions have been translated into routine clinical care and therefore remain inaccessible to most family caregivers. To address this gap, the Caring for the Caregiver program is being developed at UT Health San Antonio, School of Nursing to improve support services and health outcomes for family caregivers. Our purpose is to describe the engagement process undertaken to assess caregiver and community needs and how findings are informing program development.We are using a model of public engagement that consists of communication of information, collection of information from stakeholders, and collaboration where stakeholders are partners in an exchange of information to guide program activities. An assessment of the community was undertaken to identify resources/services for family caregivers. Subsequently, stakeholders were invited to a community-academic forum to discuss strategies to build on existing strengths for family caregiving and to identify gaps in care. Detailed notes were taken and all discussions were recorded and transcribed for analysis. Data were analyzed using thematic content analysis.We conducted site visits with 15 community agencies, interviewed 13 family caregivers, and attended community events including support groups and health and senior fairs. Fifty-three diverse stakeholders attended the community-academic forum. Participants identified existing assets within our community to support family caregivers. Consistent among groups was the need to increase awareness in our community about family caregivers. Themes identified from the discussion were: making the invisible visible, you don't know what you don't know, learning too late, and anticipating and preparing for the future.Incorporating caregiver and community stakeholders was critical to ensure that the priorities of our community are addressed in a culturally responsive accessible program for family caregivers. The forum served as important mechanism to partner with the community and will be an annual event where we can continue to work with our stakeholders around needs for practice, education, and research.

Project description:BackgroundThe design and implementation of community-based integrated youth service hubs (IYSHs) is burgeoning around the world. This collaborative model of care aims to address barriers in youth service access by designing services that meet the needs of youth and caregivers. However, heterogeneity across models requires a better understanding of the preferences for key service characteristics.MethodA discrete choice experiment was conducted among 274 caregivers of youth aged 14-29 years with mental health challenges. The experiment consisted of 12 attributes with four levels each, representing different service components; additional measures were collected, including demographics and burden assessments. Utility values were calculated, representing the degree of preference for a given level of an attribute. Latent class analysis was conducted to understand subgroups with different service preferences, identifying three latent classes with differing IYSH service preferences.ResultsThe largest class (n = 173, 63.1%), entitled 'Comprehensive, Integrative Service Access', strongly valued practical aspects of service design, such as rapid access and support for a wide range of needs. The 'Service Process Features' class (n = 67, 24.5%) expressed a relative prioritization of process features of service access, while the smaller 'Caregiver Involvement' (n = 34, 12.4%) class most highly prioritized caregiver involvement in their youths' services. Similar demographic characteristics and caregiver burden were found across classes, although participants in the Caregiver Involvement latent class were supporting younger youth.Discussion and conclusionsCaregivers have diverse youth service preferences and relative priorities that should be taken into account when designing services. System designers and service providers are encouraged to take caregivers' preferences and priorities into account, alongside youth priorities, whether designing service delivery models or an individual service plan for a youth.

Project description:BackgroundCaregivers of a family member with a chronic disability or illness such as dementia are at increased risk for chronic disease. There are many factors that contribute to dementia caregiver vulnerability and these factors can be challenging to assess in clinical settings. Self-rated health (SRH) is an independent measure of survival and physical health in the elderly. As an inclusive measure of health, SRH has been proposed as a reliable way to assess a patient's general health in primary care. Therefore, we sought to identify determinants of poor/fair SRH versus categories of at least good SRH in informal caregivers.MethodsIn a cross-sectional study, we examined 134 elderly (≥55 years) providing in-home care for a spouse with dementia who rated their own health with a single-item question: "In general, would you say your health is excellent, very good, good, fair or poor?". In a multivariable model, we compared caregivers with poor/fair SRH to those with good, very good, or excellent SRH on demographics, health characteristics (health behaviors, physical health indicators, psychosocial factors) and caregiving-specific stress (a composite index/total of four caregiving-specific stressors: years of caregiving, dementia severity, care recipient functional impairment and perceived caregiver burden).ResultsCompared with caregivers who rated their own health as either good (31.3%), very good (38.8%) or excellent (14.2%), caregivers with poor/fair SRH (15.7%) were more likely to have lower physical function and total greater caregiving-specific stress. More years of caregiving, severe dementia and care recipient functional impairment, but not perceived caregiver burden, were also more likely among caregivers with poor/fair SRH. Additionally, high negative affect and low positive affect were more likely in caregivers with poor/fair vs. good or excellent and very good or excellent SRH, respectively.ConclusionsCaregivers with poor/fair SRH were characterized by higher levels of medical comorbidity, low physical function, high negative, but low positive affect and longer duration of caregiving, as well as more severe dementia and greater functional impairment of the care recipient. These findings suggest that caregivers need to be more closely evaluated and targeted for preventive interventions in clinical practice.Trial registrationClinicalTrials.gov registration number: NCT02317523 .

Dataset Information

Why do family dementia caregivers reject caregiver support services? Analyzing types of rejection and associated health-impairments in a cluster-randomized controlled intervention trial.

Publications

Why do family dementia caregivers reject caregiver support services? Analyzing types of rejection and associated health-impairments in a cluster-randomized controlled intervention trial.

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