A Comprehensive Assessment of Informal Caregivers of Patients in a Primary Healthcare Home-Care Program.
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ABSTRACT:
SUBMITTER: Rodrigo-Banos V
PROVIDER: S-EPMC8583293 | biostudies-literature |
REPOSITORIES: biostudies-literature
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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 .
| S-EPMC5135766 | biostudies-literature
Project description:OBJECTIVE:To describe the modified Patient-Centered Medical Home Assessment (M-PCMH-A) survey module developed to track primary care practices' care delivery approaches over time, assess whether its underlying factor structure is reliable, and produce factor scores that provide a more reliable summary measure of the practice's care delivery than would a simple average of question responses. DATA SOURCES/STUDY SETTING:Survey data collected from diverse practices participating in the Comprehensive Primary Care (CPC) initiative in 2012 (n = 497) and 2014 (n = 493) and matched comparison practices in 2014 (n = 423). STUDY DESIGN:Confirmatory factor analysis. DATA COLLECTION:Thirty-eight questions organized in six domains: Access and Continuity of Care, Planned Care for Chronic Conditions and Preventive Care, Risk-Stratified Care Management, Patient and Caregiver Engagement, Coordination of Care across the Medical Neighborhood, and Continuous Data-Driven Improvement. PRINCIPAL FINDINGS:Confirmatory factor analysis suggested using seven factors (splitting one domain into two), reassigning two questions to different domain factors, and removing one question, resulting in high reliability, construct validity, and stability in all but one factor. The seven factors together formed a single higher-order factor summary measure. Factor scores guard against potential biases from equal weighting. CONCLUSIONS:The M-PCMH-A can validly and reliably track primary care delivery across practices and over time using factors representing seven key components of care as well as an overall score. Researchers should calculate factor loadings for their specific data if possible, but average scores may be suitable if they cannot use factor analysis due to resource or sample constraints.
| S-EPMC5867087 | biostudies-other
Project description:ObjectiveA longer life expectancy increases the number of older adults who require long-term care. The presence of a caregiver at home prevents the placement of older adults in care facilities. Identifying the caregivers' viewpoints around the care clarifies key factors in providing quality care.This study aimed to assess barriers to home care from the perspective of Iranian informal caregivers of older adults.DesignThis was a qualitative study with content analysis. Semistructured interviews were conducted via telephone in Persian with informal caregivers of older adults using open-ended questions.SettingSocial and health organisations in southern Tehran, Iran.ParticipantsSeventeen informal caregivers were selected on purpose. Participants were eligible to participate in the study if they were 18 years or older, and had at least 1 month of care experience for a minimum of 6 hours per week.ResultsBarriers to home care for older adults from informal caregivers' points of view were categorised into three domains: (1) Individual barriers include the physical, mental and social burden of care as well as personal characteristics of the caregiver; (2) interpersonal barriers include psychobehavioural characteristics of the older adult and misbehaviour of people around the caregiver and (3) care system barriers include inefficient institutional/organisational infrastructure, moral issues and inefficiency in public policy.ConclusionsOur study showed multiple individual, interpersonal and care system barriers to home care for older adults. Specific contextual challenges among Iranian caregivers, such as their attitudes and beliefs, as well as a lack of social and healthcare support for families, hindered the quality of care.Trial registration numberIRCT20201012048999N1.
| S-EPMC9730353 | biostudies-literature
Project description:ObjectivesTo understand current practices, challenges, and opportunities for a systematic assessment of family caregivers' needs and risks in primary care.DesignQualitative study consisting of in-depth semi-structured interviews.SettingFour primary care practices located in urban and rural settings.ParticipantsPrimary care clinicians, staff, and administrators (N = 30), as well as older adult patients and family caregivers (N = 40), recruited using purposive and maximum variation sampling.MeasurementsCurrent experiences, challenges, and opportunities for integrating standardized caregiver assessment into primary care delivery. Interviews were audio-recorded and transcribed; transcripts were analyzed using the constant comparative method of data analysis.ResultsParticipating clinicians had been in practice for an average of 12.8 years (range = 1-36 y). Patients had a mean age of 84.0 years (standard deviation [SD] = 9.7); caregivers had a mean age of 67.0 years (SD = 9.3). There was wide variability in current practices for identifying caregivers' needs and risks, encompassing direct and indirect approaches, when such issues are considered. Participants posited that integrating standardized caregiver assessment into primary care delivery could help improve patient care, enhance clinician-caregiver communication, and validate caregivers' efforts. Barriers to assessment included insufficient time and reimbursement, liability concerns, lack of awareness of community resources, and concerns about patient autonomy. To facilitate future uptake of caregiver assessment, participants recommended brief self-administered assessment tools and post-screen discussions with practice staff.ConclusionIdentification of caregivers' needs and risks in primary care is highly variable. Integration of standardized caregiver assessment into practice requires coordinated changes to policy, revision of practice workflows, and an interdisciplinary approach to the development of appropriate assessment tools. J Am Geriatr Soc 68:1262-1270, 2020.
| S-EPMC7325837 | biostudies-literature
Project description:BackgroundHeart failure is a progressive condition characterized by frequent hospitalizations for exacerbated symptoms. Informal family caregivers may help patients improve self-care, which may in turn reduce hospitalizations. However, little is known about how mutuality, defined as the quality of the patient-caregiver relationship, and caregiver burden affect self-care.ObjectiveThis study examines the associations among mutuality, patient self-care confidence (beliefs in abilities to engage in self-care behaviors) and maintenance (behaviors such as medication adherence, activity, and low salt intake), caregiver confidence in and maintenance of patient care, and caregiver perceived burden.MethodsThis study used cross-sectional baseline data from a multi-site randomized clinical trial of a symptom and psychosocial care intervention. Patient-caregiver dyads ( N=99) completed self-report surveys of mutuality and self-care confidence and maintenance, and caregivers completed a measure of caregiver burden. Path analysis, with actor (effects within a person) partner (effects across the dyad) interdependence model paths and regression models were used to examine the associations among mutuality, caregiver burden, and self-care.ResultsThe majority of patients ( M age=66, 21% female) and caregivers ( M age=57, 81% female) were spouses (60%). The path model demonstrated significant actor effects; patients and caregivers with better mutuality were more confident in patient self-care ( p<.05). Partner effects were not significant. Regression models indicated that caregivers with greater mutuality reported less perceived burden ( p<.01).ConclusionsMutuality in patient-caregiver dyads is associated with patient self-care and caregiver burden and may be an important intervention target to improve self-care and reduce hospitalizations.
| S-EPMC9390005 | biostudies-literature
Project description:BackgroundDue to a growing shortage in residential care, people with dementia will increasingly be encouraged to live at home for longer. Although people with dementia prefer extended independent living, this also puts more pressure on both their informal and formal care networks. To support (in)formal caregivers of people with dementia, there is growing interest in unobtrusive contactless in-home monitoring technologies that allow caregivers to remotely monitor the lifestyle, health, and safety of their care recipients. Despite their potential, these solutions will only be viable if they meet the expectations and needs of formal and informal caregivers of people with dementia.ObjectiveThe objective of this study was to explore the expected benefits, barriers, needs, and requirements toward unobtrusive in-home monitoring from the perspective of formal and informal caregivers of community-dwelling people with dementia.MethodsA combination of semistructured interviews and focus groups was used to collect data among informal (n=19) and formal (n=16) caregivers of people with dementia. Both sets of participants were presented with examples of unobtrusive in-home monitoring followed by questions addressing expected benefits, barriers, and needs. Relevant in-home monitoring goals were identified using a previously developed topic list. Interviews and focus groups were transcribed and inductively analyzed. Requirements for unobtrusive in-home monitoring were elicited based on the procedure of van Velsen and Bergvall-Kåreborn.ResultsFormal and informal caregivers saw unobtrusive in-home monitoring as a support tool that should particularly be used to monitor (the risk of) falls, day and night rhythm, personal hygiene, nocturnal restlessness, and eating and drinking behavior. Generally, (in)formal caregivers reported cross-checking self-care information, extended independent living, objective communication, prevention and proactive measures, emotional reassurance, and personalized and optimized care as the key benefits of unobtrusive in-home monitoring. Main concerns centered around privacy, information overload, and ethical concerns related to dehumanizing care. Furthermore, 16 requirements for unobtrusive in-home monitoring were generated that specified desired functions, how the technology should communicate with the user, which services surrounding the technology were seen as needed, and how the technology should be integrated into the existing work context.ConclusionsDespite the presence of barriers, formal and informal caregivers of people with dementia generally saw value in unobtrusive in-home monitoring, and felt that these systems could contribute to a shift from reactive to more proactive and less obtrusive care. However, the full potential of unobtrusive in-home monitoring can only unfold if relevant concerns are considered. Our requirements can inform the development of more acceptable and goal-directed in-home monitoring technologies to support home-based dementia care.
| S-EPMC8076981 | biostudies-literature
Project description:The European policy emphasis on providing informal care at home causes caregivers and home care professionals having more contact with each other, which makes it important for them to find satisfying ways to share care. Findings from the literature show that sharing care between caregivers and professionals can be improved. This study therefore examines to what degree and why caregivers' judgements on sharing care with home care professionals vary. To improve our understanding of social inequities in caregiving experiences, the study adopts an intersectional perspective. We investigate how personal and situational characteristics attached to care judgements are interwoven. Using data of the Netherlands Institute for Social Research, we conducted bivariate and multivariate linear regression analysis (N = 292). We combined four survey questions into a 1-4 scale on 'caregiver judgement' (α = 0.69) and used caregivers' personal (such as gender and health status) and situational characteristics (such as the care recipient's impairment and type of care) as determinants to discern whether these are related to the caregivers' judgement. Using a multiplicative approach, we also examined the relationship between mutually constituting factors of the caregivers' judgement. Adjusted for all characteristics, caregivers who provide care to a parent or child with a mental impairment and those aged between 45 and 64 years or with a paid job providing care to someone with a mental impairment are likely to judge sharing care more negatively. Also, men providing care with help from other caregivers and caregivers providing care because they like to do so who provide domestic help seem more likely to be less satisfied about sharing care. This knowledge is vital for professionals providing home care, because it clarifies differences in caregivers' experiences and hence induce knowledge how to pay special attention to those who may experience less satisfaction while sharing care.
| S-EPMC6988496 | biostudies-literature
Project description:BackgroundGeneral practitioners (GPs), nurses and informal caregivers are often jointly involved in healthcare situations in which ethical issues play an important role.ObjectivesTo describe ethical problems from the perspective of these three groups and to investigate whether there is a common experience of ethical issues in primary care.MethodsWe conducted six focus groups with general practitioners, nurses and informal caregivers in Germany. We asked the participants to describe at least one experience of ethical problem in detail and documented the findings by an illustration software that visualized and structured the discussion. We used thematic analysis to identify ethical problems and to develop categories of ethical issues.ResultsProblems reported barely overlapped. GPs had to do mainly with uncertainty about the scope and limits of their responsibility for patients. Nurses were concerned about bureaucratic and other barriers to professional care and about dual loyalty if they had to consider the conflicting interests of patients and family members. They often felt powerless and unable to act according to their professional standards. Informal caregivers reported problems that resulted from role strain and being both a family member and a caregiver. GPs, nurses and informal caregivers sometimes perceived the other parties as a source of ethical problems.ConclusionsAll parties may benefit from ethics support services, a rarity in German primary care so far. Furthermore, nurses' self-confidence towards GPs, demanding patients and family members has to be strengthened. Informal caregivers, the most vulnerable group, need more attendance and tailored support.
| S-EPMC6425460 | biostudies-literature
Project description:Although home-dwelling older adults are frequently assisted with polypharmacy management by their informal caregivers, they can still face medication-related problems. Identifying older adults' and their informal caregivers' beliefs about medication is a gateway to understanding and improving medication adherence. This study aimed to analyse beliefs about polypharmacy among home-dwelling older adults with multiple chronic conditions and their informal caregivers, focusing on their daily medication practices. Semi-structured interviews were conducted with 28 older adults, 17 informal caregivers, but also 13 healthcare professionals. Based on an inductive methodological approach, data were analysed using thematic content analysis. Interviews revealed the different attitudes adopted by older adults and their informal caregivers in relation to the treatment information provided by healthcare professionals. A variety of beliefs were identified and linked to medication adherence by examining daily medication practices. Polypharmacy was experienced as a habit but also an obligation, highlighting some of the strategies and negotiations underlying medication use at home. Collecting viewpoints from multiple stakeholders is an innovative way of accessing and analysing beliefs about polypharmacy. Daily medication practices provided information about medication beliefs and may contribute to developing targeted professional interventions that improve medication adherence.
| S-EPMC8466336 | biostudies-literature
Project description:BackgroundThere is a growing interest to support home-based dementia care via contactless monitoring (CM) technologies which do not require any body contact, and allow informal caregivers to remotely monitor the health and safety of people with dementia (PwD). However, sustainable implementation of CM technologies requires a better understanding of informal caregivers' acceptance. This study aimed to examine the (1) general acceptance of CM technology for home-based dementia care, (2) acceptance of different sensor types and use scenarios, and (3) differences between accepters and refusers of CM technology.MethodA cross-sectional online survey was conducted among n = 304 informal caregivers of community-dwelling PwD [Mean(SD) age = 58.5 (10.7)] in the Netherlands and Germany. The survey contained a textual and graphical introduction to CM technologies, as well as questions targeting (1) general acceptance of CM technology, (2) acceptance of seven different contactless sensor types, (3) acceptance of five different use scenarios, and (4) caregivers' own and their care recipients' personal characteristics. Data were examined using descriptive and bivariate analyses.ResultsParticipants' general acceptance of CM technology was slightly positive. We found significant differences in acceptability between contactless sensor types (p < .001). RF-based sensors (e.g., radar) and light sensors were considered most acceptable, whereas camera-based sensors and audio sensors (e.g., microphones, smart speakers) were seen as least acceptable for home-based dementia care. Furthermore, participants' acceptance of different use scenarios for CM technology varied significantly (p < .001). The intention to use CM technology was highest for detecting emergencies (e.g., falls, wandering), and lowest for predicting acute situations (e.g., fall prediction). Lastly, accepters and refusers of CM technology significantly differed regarding gender (p = .010), their relation with the PwD (p = .003), eHealth literacy (p = .025), personal innovativeness (p < .001), usage of safety technology (p = .002), and the PwD's type of cognitive impairment (p = .035) and housing situation (p = .023).ConclusionOur findings can inform the development and implementation of acceptable CM technology to support home-based dementia care. Specifically, we show which sensor types and use scenarios should be prioritized from the informal caregiver's view. Additionally, our study highlights several personal characteristics associated with informal caregivers' acceptance of CM technology that should be taken into account during implementation.
| S-EPMC10582629 | biostudies-literature