Caregiver Preparedness Research Articles

Evaluation of care burden and preparedness of caregivers who provide care to palliative care patients.

Caregivers have a great role in palliative care. Considering the difficult process of palliative care, the caregiver undertakes an extra burden with the responsibility of the patient. This study was carried out to evaluate the care burden and preparedness of caregivers who provide care for palliative care patients. This study was conducted in the palliative care unit of a state hospital in Turkey between January and May 2019. No sample was selected in the study, and the study was carried out with individuals who were hospitalized in the palliative care unit and who volunteered to participate in the study between the specified dates. The data were collected with Patient Relative Questionnaire Form, Burden Interview, and Preparedness for Caregiving Scale. The average Burden Interview score was found as 33.6, SD 13.03 in the study. Patient relatives perceived the patients they cared for as a burden at moderate levels. The Preparedness for Caregiving score average was found as 18.55, SD 6.83. It was found that patient relatives were moderately prepared to undertake the role of caregiver. It was found that care burden decreased as preparedness for caregiving increased and burden increased as preparedness for caregiving decreased (p = 0.001). As a result of the study, it was found that caregivers of palliative patients had the moderate levels of care burden and preparedness for caregiving. It was found that as the preparedness levels of caregivers increased, their burdens decreased. Accordingly, it is important that nurses will plan nursing interventions by considering the factors that affect the care burden and preparedness of caregivers.

Caring ahead: Mixed methods development of a questionnaire to measure caregiver preparedness for end-of-life with dementia

Background: Family caregivers of persons with dementia often feel unprepared for end-of-life and preparedness predicts caregiver outcomes in bereavement. Existing questionnaires assessing preparedness have limitations. A multi-dimensional questionnaire assessing family caregiver preparedness for the end-of-life of persons with dementia is needed to identify caregivers at risk for negative outcomes in bereavement and evaluate the quality of strategies within a palliative approach. Aim: To develop a multi-dimensional questionnaire titled ‘Caring Ahead’ to assess feelings of preparedness for end-of-life in family caregivers of persons with dementia. Design: A mixed methods, sequential design employed semi-structured interviews, a Delphi-survey and pilot-testing of the questionnaire, June 2018 to July 2019. Setting/population: Participants included five current and 16 bereaved family caregivers of persons with symptoms advanced dementia from long-term care homes in Ontario, Canada; and 12 professional experts from clinical and academic settings in Canada, Europe, United States. Results: Interviews generated three core concepts and 114 indicators of preparedness sampling cognitive, affective and behavioural traits in four domains (i.e., medical, psychosocial, spiritual, practical). Indicators were translated and reduced to a pool of 73 potential questionnaire items. 30-items were selected to create the ‘Caring Ahead’ preparedness questionnaire through a Delphi-survey. Items were revised through a pilot-test with cognitive interviewing. Conclusions: Family caregivers’ feelings of preparedness for end-of-life need to be assessed and the quality of strategies within a palliative approach evaluated. Future psychometric testing of the Caring Ahead questionnaire will evaluate evidence for validity and reliability.

Transitional care from skilled nursing facilities to home: study protocol for a stepped wedge cluster randomized trial

BackgroundSkilled nursing facility (SNF) patients are medically complex with multiple, advanced chronic conditions. They are dependent on caregivers and have experienced recent acute illnesses. Among SNF patients, the rate of mortality or acute care use is over 50% within 90 days of discharge, yet these patients and their caregivers often do not receive the quality of transitional care that prepares them to manage serious illnesses at home.MethodsThe study will test the efficacy of Connect-Home, a successfully piloted transitional care intervention targeting seriously ill SNF patients discharged to home and their caregivers. The study setting will be SNFs in North Carolina, USA, and, following discharge, in patients’ home. Using a stepped wedge cluster randomized trial design, six SNFs will transition at randomly assigned intervals from standard discharge planning to the Connect-Home intervention. The SNFs will contribute data for patients (N = 360) and their caregivers (N = 360), during both the standard discharge planning and Connect-Home time periods. Connect-Home is a two-step intervention: (a) SNF staff create an individualized Transition Plan of Care to manage the patient’s illness at home; and (b) a Connect-Home Activation RN visits the patient’s home to implement the written Transition Plan of Care. A key feature of the trial includes training of the SNF and Home Care Agency staff to complete the transition plan rather than using study interventionists. The primary outcomes will be patient preparedness for discharge and caregiver preparedness for caregiving role. With the proposed sample and using a two-sided test at the 5% significance level, we have 80% power to detect a 18% increase in the patient’s preparedness for discharge score. We will employ linear mixed models to compare observations between intervention and usual care periods to assess primary outcomes. Secondary outcomes include (a) patients’ quality of life, functional status, and days of acute care use and (b) caregivers’ burden and distress.DiscussionStudy results will determine the efficacy of an intervention using existing clinical staff to (a) improve transitional care for seriously ill SNF patients and their caregivers, (b) prevent avoidable days of acute care use in a population with persistent risks from chronic conditions, and (c) advance the science of transitional care within end-of-life and palliative care trajectories of SNF patients and their caregivers. While this study protocol was being implemented, the COVID-19 pandemic occurred and this protocol was revised to mitigate COVID-related risks of patients, their caregivers, SNF staff, and the study team. Thus, this paper includes additional material describing these modifications.Trial registrationClinicalTrials.gov NCT03810534. Registered on January 18, 2019.

Development and psychometric testing of the European Heart Failure Self-Care behaviour scale caregiver version (EHFScB-C)

BackgroundThe European Heart Failure Self-Care Behaviour Scale (EHFScBS) is used worldwide to measure heart failure (HF) patient self-care, but a caregiver version does not exist. ObjectiveTo develop and test the European HF Self-Care Behaviour Scale for Caregivers (EHFScBS-C) in a population of informal caregivers of HF patients. MethodsThe EHFScBS-C was derived from the EHFScBS to measure the extent to which caregivers contribute to HF patient self-care. The EHFScBS-C was developed in English and then translated into Italian, Spanish and Dutch, after which it was back-translated. EHFScBS-C data were collected from 193 HF caregivers enrolled in Italy, Spain and the Netherlands. ResultsExploratory factor analysis revealed two factors with supportive fit indices (CFI = 0.990; RMSEA = 0.048): caregivers’ contributions to HF self-care related to medical issues, and caregivers’ contributions related to lifestyle. Internal consistency reliability was supported as well (Cronbach’s alpha 0.90 for the overall scale). Construct validity was demonstrated with significant correlations with the Caregiver Preparedness Scale. Conclusion and Practice ImplicationsThe EHFScBS-C has adequate validity and reliability for its use in clinical practice and research to measure the extent to which caregivers contribute to HF patient self-care. The EHFScBS-C can be used in combination with the EHFScBS to conduct dyadic studies.

Patient and Caregiver Preparedness for Discharge from the Internal Medicine Wards of the University of the Philippines – Philippine General Hospital

Background. Preparedness before discharge correlates with good clinical outcomes.Objective. The study described the perception, attitudes, and perceived preparedness of patients and caregivers fordischarge from the Internal Medicine wards of the University of the Philippines-Philippine General Hospital (UP-PGH).Methods. A cross-sectional survey among 142 patients about to be discharged from the Internal Medicine wards ofthe Philippine General Hospital and/or their caregivers from May to June 2017 was done using a validated Filipinoversion of B-PREPARED, an 11-item self-administered questionnaire that measures patient preparedness for home.The questionnaire has three domains: self-care information, equipment/services, and confidence. The highest possibleB-PREPARED score is 22 with higher scores indicating better discharge preparedness. Mean B-PREPARED scoreswere calculated. Post-hoc linear regression analysis between the scores and characteristics was performed.Results. The Filipino translation of the B-PREPARED questionnaire had good internal consistency (Cronbach’salpha 0.8). One hundred forty-two patients and caregivers participated. The mean B-PREPARED score was 14.57± 4.34, with a median of 15. The lowest scores were for information on available community services (1.20 ± 0.76),arranged equipment (0.83 ± 0.88), information on side effects of medications (1.19 ± 0.85), and additional informationsought (0.61 ± 0.92). There was no significant correlation between preparedness and age, employment status,educational attainment, diagnosis, length of hospitalization, the number of admissions one year prior, or whether therespondent was a patient or caregiver.Conclusion. The Filipino translation of the B-PREPARED questionnaire had good internal consistency. Althoughmost participants reported being confident and prepared for discharge, most felt they did not receive sufficientinformation on side effects and available community services, and assistance in arranging for the necessary equipmentfor home care.

Telling Children with Perinatal HIV About Their HIV Serostatus: Healthcare Workers' Practices and Barriers to Disclosing in a South African Rural Health District.

In South Africa, caregivers and healthcare workers (HCWs) lack confidence and skills to disclose to children with perinatal HIV (PHIV). Moreover, existing disclosure guidelines do not provide strategies on how to approach disclosure. Although the caregiver has been endorsed as a responsible person to disclose to the child, the involvement of HCWs in the process is critical. Yet research suggests that many HCWs are reluctant to perform disclosure. This study examines the involvement in, practices of, and barriers against HCWs’ disclosing to children with PHIV.Methods:We conducted 8 focus group discussions with a total of 51 HCWs comprising nurses, lay counsellors, social workers, and dieticians. The HCWs were selected from 23 health facilities in a rural South African health district by purposive sampling. Data were transcribed verbatim, and data analysis followed qualitative thematic analysis.Results:A high proportion of HCWs had no formal training in pediatric disclosure and some had never disclosed to children. Those who routinely disclosed approached disclosure as an ongoing process that unfolded over time. They ensured caregiver readiness as a necessary step in the disclosure process. The main barriers for HCWs to participate fully in the disclosure process were the lack of relevant disclosure guidelines, inadequate disclosure skills, and a shortage of skilled staff. Inadequate skills affected the confidence of the HCWs to disclose, while a lack of standardized disclosure guidelines and HCWs’ reliance on personal experience during disclosure resulted in confusion and uncertainty among them due to the inconsistencies in their approach to disclosure.Conclusion:This study confirms the urgent need to train HCWs to attain skills and confidence in disclosure. Training HCWs in standardized disclosure counselling would lead to an increase in the rate of disclosure to children. It is essential that the district adapt the disclosure guidelines to the local context for use in health facilities.

Preparedness among Family Caregivers of Patients with Non-Communicable Diseases in Indonesia

Background: Family caregivers spend 24 hours a day looking after and assisting patients. However, they are not always adequately prepared for all the problems they face. There is a lack of evidence exploring caregivers’ preparedness among family caregivers of patients with non-communicable diseases in Indonesia.Purpose: This study aimed to identify caregivers’ preparedness among family caregivers of patients with non-communicable diseases.Methods: This was a cross-sectional study conducted on 120 Indonesian family caregivers for patients with non-communicable diseases, who were selected using a purposive sampling technique. Data were collected using the Indonesian version of the Preparedness for Caregiving Scale (PCS) which had been validated before its use. The possible scores of this tool ranged from 0.00 to 4.00. The higher the score, the more prepared the family caregivers were. Data were analyzed using one way ANOVA .Results: Family caregivers reported feeling of moderately prepared for caregiving. The score of family caregiver preparedness for patients with diabetes, cancer, and chronic kidney disease were 2.97±0.42; 2.83±0.40; 2.89±0.49, respectively with possible range from 0.00 to 4.00. There were no differences on the caregivers’ preparedness among family caregivers of patients with non-communicable diseases (p=0.387).Conclusion: Caregivers’ preparedness is an essential element of patient care. Nurses have to be proactive in assessing each family caregiver’s preparedness to enhance the quality of life of both the family caregivers and the patients themselves, so that they can be empowered as a source of nursing care.

The Psychosocial Impact of Spouse-Caregiver Chronic Health Conditions and Personal History of Cancer on Well-being in Patients With Advanced Cancer and Their Caregivers

ContextCaregiving during advanced cancer presents many physical and psychological challenges, especially for caregivers who are coping with their own history of cancer or their own chronic health conditions. There is growing recognition that caregiver health and patient health are interdependent. ObjectivesThe objective of this study was to use quantitative and interview data to examine and explore the impact of a caregiver's personal cancer history and chronic health conditions on the psychosocial well-being of both the caregiver and patient. MethodsThis was a secondary analysis of data from 88 patients with advanced lung/gastrointestinal cancer and their spouse-caregivers. Participants self-reported subjective health, chronic health conditions (including cancer), anxiety and depression symptoms, and social support and social stress. Caregivers self-reported caregiving burden and preparedness for caregiving. Caregivers also completed semistructured interviews. ResultsParticipants were mostly white, non-Hispanic, and in their mid-60s. Caregivers reported 1.40 (SD = 1.14) chronic conditions on average; 11 reported a personal history of cancer (“survivor-caregivers”). The number of caregiver chronic health conditions was positively associated with patient depression symptoms. Patients of survivor-caregivers also reported more depression symptoms than patients of caregivers without cancer (t(85) = −2.35, P = 0.021). Survivor-caregivers reported higher preparedness for caregiving than caregivers without cancer (t(85) = −2.48, P = 0.015). Interview data enriched quantitative findings and identified factors that may drive patient depression, including emotions such as resentment or guilt. Experiencing cancer personally may provide caregivers unique insight into the patient experience. ConclusionProviders should be aware of caregiver chronic conditions and cancer history, given the potential negative effects on patient psychosocial well-being.

Development and psychometric testing of the Spanish version of the Caregiver Preparedness Scale.

AimTo psychometrically test the Spanish version of the Caregiver Preparedness Scale (CPS) and document the preparedness level of caregivers.DesignA descriptive and validation study.MethodPurposive sampling method was used to select 171 family caregivers Spain. The scale was cross‐culturally adapted through a process that included translation, comparison with versions in other languages and back‐translation, review, pre‐testing and validity, and reliability tests.ResultsThe Spanish family caregivers are mainly female (79%) and married (75%). The Spanish version of the CPS presents changes with respect to the original. Confirmatory factor analysis supported the single‐factor model. Analysis of internal consistency yielded a Cronbach's α of 0.89. Significant correlations (p < .01) with other scales supported convergent validity. A descriptive analysis of the validated scale showed average levels of preparation (2.16 out of 4). Caregivers felt better prepared to attend to the patient's physical needs than emotional or spiritual needs.

Traveling the Path to Stroke Caregiver Readiness

Family members are often poorly prepared to assume the caregiving role post-stroke leaving them feeling overwhelmed, frustrated, and abandoned by the healthcare system leading to physical, mental, and emotional strain. To address this, we developed and tested the Preparedness Assessment for the Transition Home after stroke (PATH-s) instrument based on a theoretical framework for improving stroke caregiver readiness. Consecutive studies were conducted over the past 10 years to 1) develop the caregiver readiness theoretical model identifying gaps in caregiver preparation in 80 interviews with caregivers and stroke survivors as they transitioned home from inpatient rehabilitation care; 2) develop and validate the PATH-s instrument with 183 caregiver-stroke survivor dyads, and 3) develop and implement a corresponding catalogue of interventions developed in consultation with 5 expert rehabilitation nurse case managers to improve stroke caregiver readiness. The Improving Caregiver Readiness Model has 2 preparedness domains; commitment and capacity and six sub-domains. In a factor analysis each domain/sub-domain subscale in the PATH-s demonstrated satisfactory internal consistency (a=0.69-0.86). The overall mean score was 3.11 (range 1.68 to 4.00) with high internal consistency reliability (a=0.90). The PATH-s is highly correlated with the Preparedness for Caregiving Scale. The stroke survivor’s total FIM score at discharge had a small but significant correlation with the PATH-s. Case managers find the PATH-s results and corresponding interventions helpful in tailoring transitional care plans. Caregivers worldwide describe the negative impacts of providing stroke care post-discharge. The Path to Stroke Caregiver Readiness Program shows promise for improving stroke caregiver preparation for discharge home.

Post-Diagnostic Support and Occupational Therapy Program for Community-Based Dementia Services

Service gaps and the absence of a clear-cut care/symptom management pathway for people recently diagnosed with dementia and their family carepartners motivated LiveWell Dementia Specialists to implement a multi-service post diagnostic support program including three occupational therapy (OT) interventions. Program services include an education series on ‘Resilient Living with Dementia’, family coaching and topical education sessions, and OT services including Care of Persons with Dementia in their Environments (COPE), Skills2Care®, and Home Based Memory Rehabilitation. Program services promote adoption of adaptive strategies and action steps to increase carepartner capacity and enhance quality of life among people with dementia. Participants complete assessments at baseline, program completion, and 4- and/or 10-month follow-up. Carepartners show improvements in dementia knowledge (mean baseline score = 24.6, 4-month = 26.0) and preparedness for caregiving (mean baseline score = 18.1, 4-month = 21.9). Program elements and adaptations of COPE for real world practice are discussed.

Where to Begin: Assessing Caregiver Readiness

There have been many interventions targeting family caregivers for people living with dementia (PLwD) that have been found to have efficacy and effectiveness. However, very few of these interventions have been widely adopted. One reason may be that clinicians and other professionals working with caregivers are unsure of what intervention to use. One measure that may help with where to begin is Caregiver Readiness. This presentation will provide case studies on the use of the Caregiver Readiness Scale in one intervention, the Tailored Activity Program (TAP). We will highlight three cases that have low, moderate and high readiness scores and how the TAP interventionists use the readiness scores to tailor the intervention to match the caregiver’s need. Knowing a caregiver’s readiness to receive an intervention may help clinicians and providers identify where to being in helping the caregiver.

Dementia Caregivers Perspectives of Caregiving, Burden, Emergencies, and Emergency Preparedness

Limited research has been conducted regarding the perspectives of caregivers of persons with dementia (PWD) regarding preparing for emergencies. The purpose of this study was to understand dementia caregivers’ perceptions of burden, emergencies, and emergency preparedness through the caregiving lens. Fourteen semi-structured interviews were conducted with a purposive sample of dementia caregivers who reside in Hillsborough County, Florida, to gain participants’ perspectives. Data were analyzed using the thematic analysis method. Caregivers discussed emergencies in terms of medical issues, mostly related to the PWD’s health, as well as natural disasters such as hurricanes. Caregivers discussed their perspectives of caregiving and burden as centered around their roles and experiences with the PWD, including ways in which they would deal with emergencies such as natural disasters. Caregivers reported that they were physically prepared for emergencies (i.e., hurricanes) but not mentally prepared for coping with or helping their loved ones cope with the stress of an emergency related event. The interviews presented opportunities to raise awareness of emergency preparedness resources and provide information specific to each caregivers’ situation. The results suggest the caregiver role may be essential to mitigating the adverse effects of emergencies on PWDs. Recommendations for practice include providing person-centered care, individualized emergency planning, and interprofessional collaboration.

The PATH to Caregiving: Assessing Caregivers and Developing a Caregiver Plan of Care in the Acute Care Setting

Family caregivers of older adults report lack of preparation for their role, particularly upon acute hospital discharge following a medical event. Addressing the needs of family caregivers in the acute care setting prior to hospital discharge requires the identification of the caregiver, an assessment of caregiver preparedness, and a plan of care to address gaps in preparedness. The Preparedness Assessment for the Transition Home 7-item (PATH-7) is a valid and reliable instrument developed to assess family caregivers readiness for the caregiving role during acute care. The PATH-7 paper-pencil self-administered assessment was implemented in clinical care in medical-surgical nursing units in 2 acute care hospitals. Interventions to address gaps in preparedness were selected from a catalogue of interventions to develop a caregiver plan of care. The most frequent challenge identified by family caregivers was fulfilling the caregiving role on top of their other roles and responsibilities. This illustrated the need to assist family caregivers with exploring options for recruiting others to help with their roles and responsibilities and identify solutions soliciting and organizing help. This novel program promotes addressing the needs of the family unit, moving to a family-integrated are delivery model. Implementation challenges included in-person contact with caregiver to administer assessment, resources to respond to identified gaps in readiness, and lack of technology-enabled assessment administration. Positive staff experience with identifying and addressing needs of caregivers was a facilitator of staff engagement. Identifying, assessing, and addressing the needs of family caregivers of older adults is feasible in the acute care setting.

Family Caregiver Assessments: What Have We Learned From Assessments Across Populations and Health Conditions?

This symposium will bring together research on assessments of family caregivers for older individuals with different health conditions and discuss the components of effective assessments. Comprehensive characterizations of caregivers are essential due to an increase in the demand on caregivers, and how intense care contexts contribute to the caregiver’s decline in health and diminished capacity to provide quality care. According to Caregiving in the U.S. 2020 (n=1,400), only 13% of caregivers were asked by healthcare professionals what they needed to take care of themselves. Peer-reviewed studies have reported that caregivers are often reluctant to self-identify and to ask for the help that they need for themselves and those in their care. Since supports to caregivers have historically relied on this self-identification, the first presentation (Grace Whiting) will focus on the work NAC has done to build pathways between caregivers and supportive services to increase availability, accessibility, and patient-centeredness. The second presentation (Esther Friedman) will identify and discuss the barriers to fully incorporating family caregivers into the health care team, as well as the solutions for removing barriers. The next two presentations, respectively, will focus on characterizing the prevalence, burden, and unmet needs of caregivers of cancer patients (Erin Kent), and the unmet needs of families of adults with intellectual and development disabilities (Tamar Heller). The final presentation will explore caregiver readiness in dementia care using the Tailored Activity Program (TAP) and how TAP interventionists can use readiness scores to determine caregiver’s capacity (Katherine Marx).

The Influence of Preparedness, Mutuality, and Self-efficacy on Home Care Workers' Contribution to Self-care in Heart Failure: A Structural Equation Modeling Analysis.

Home care workers (HCWs) are increasingly caring for patients with heart failure (HF). Previous studies have shown that they contribute to HF patients' care, but how their preparedness and their relationship with patients (mutuality) influence caregiving is unknown, as well as the role of HCWs' self-efficacy. Guided by the Situation-Specific Theory of Caregiver Contribution to HF Self-Care, we investigated the influence of HCWs' preparedness and mutuality on HCWs' contribution to HF self-care and the mediating effect of HCWs' self-efficacy in the process. We conducted a cross-sectional survey of HCWs who cared for patients with HF. The survey included the Caregiver Preparedness Scale, Mutuality Scale, Caregiver Contribution to Self-Care of HF Index, and Caregiver Self-Efficacy in Contributing to Self-Care Scale. We performed structural equation modeling and a mediation analysis. A total of 317 HCWs employed by 22 unique home care agencies across New York, NY, completed the survey. They had a median age of 50 years, 94% were women, and 44% were non-Hispanic Black. Results demonstrated that mutuality had a direct influence on HCW contribution to self-care and preparedness influenced their contribution to self-care, but only through the mediation of self-efficacy. Home care workers' preparedness, mutuality, and self-efficacy have important roles in influencing their contribution to HF self-care. As a workforce increasingly involved in the care of patients with HF, knowing the mechanisms underpinning HCWs' contribution to self-care may illuminate future interventions aimed at improving their contributions and HF patient outcomes.

Nudging Discharge Readiness With a Poster: A Sequential, Exploratory Mixed Methods Pilot Study of Patient Caregivers.

Many hospitals face a common challenge: limited space for a high number of patients. This has led to quick patient throughput, which can impact patient perception of discharge readiness. This study examined whether a poster highlighting tasks to complete as part of the discharge process improved caregiver perception of readiness to transition home. Using a sequential, exploratory mixed methods design, focus groups were convened to explore clinical staff perspective on the discharge process on 3 pediatric inpatient units at a large, urban, pediatric academic medical center in the United States. Analysis of this content informed the design of a poster intervention to “nudge” caregivers (eg, parents, legal guardians) toward readiness and self-efficacy that was then tested in a randomized, controlled experiment. The poster focused on practical knowledge for specific areas of transition adjustment, such as medication and care recipient recovery behaviors, barriers, and enablers. Caregivers (n = 135) completed surveys at discharge indicating their perceived readiness to transition home with their child. Analysis of covariance was used to test the effect of the poster condition (poster vs no poster) on caregiver readiness, preparedness, and confidence for discharge while controlling for previous admission history. Significant effects for poster presence were found on caregivers’ perceived readiness for discharge, F 1,125 = 7.75, P = .006, Cohen’s d = 0.44; and caregivers’ perceived preparedness for the transition home, F 1,121 =7.24, P = .008, Cohen’s d = 0.44. Only a marginal effect was found for poster condition on caregivers’ confidence ratings, F 1,125 = 2.93, P = .090, Cohen’s d = 0.29. The results suggest that simple nudges in the patient care environment may yield measurable improvements in caregiver outcomes.

Family caregivers\u2019 support needs during allo-HSCT\u2014a longitudinal study

PurposeThe study aimed to explore family caregivers’ support needs prior to allo-HSCT, how these change over time and whether they are associated with demographic factors and caregiver outcome.MethodsThis longitudinal repeated measure study included 87 family caregivers of allo-HSCT recipients: 63% were partners, 74% women, 65% lived with the recipient, and their mean age was 54 years. They completed the 14-item Carer Support Needs Assessment Tool (CSNAT) and caregiver outcome measures (caregiver burden, anxiety, depression, preparedness for caregiving and general health) prior to allo-HSCT and 3, 6 and 16 weeks later.ResultsThe two top support needs prior to allo-HSCT were ‘knowing what to expect in the future’ (79%) and ‘dealing with your own feelings’ (70%). Several support needs were associated with younger age and not being a partner, while higher needs implied worse caregiver outcomes for at least one of the outcomes prior to transplantation. Most support needs remained the same at the last follow-up.ConclusionThe findings that high support needs are often associated with worse caregiver outcomes and most support needs do not diminish over time indicate that more attention should be placed on the situation of family caregivers.

Exploring the caregiver's experience in an innovative homebound hematopoietic stem cell transplantation program.

Home care for hematopoietic stem cell transplants (HSCTs), an alternative to traditional inpatient or outpatient recovery programs, is safe and feasible but may place greater demand on full-time caregivers. The goal of this study was to characterize the experiences of caregivers in a newly piloted homebound HSCT program as a means of identifying unmet needs and ensuring adequate support. A qualitative approach was utilized. Participants created self-recorded video diaries guided by open-ended prompts at designated time points throughout recovery and participated in a single follow-up interview within four weeks post-discharge. Diaries and interviews were transcribed, analyzed, and coded to identify recurrent ideas and themes. Data were collected from 12 caregivers of homebound HSCT patients. Thematic content analysis yielded four themes: facilitators (external support, sense of normalcy, and patient wellness), challenges (difficulties with transplant care instructions, managing the patient's physical and emotional health, and caregiver psychological distress), roles in recovery (caregiving responsibilities), and analysis of homebound experience (positive outcomes and suggestions for improvement). Caregivers perceived the homebound program as offering high-quality medical care in a setting that provided a sense of normalcy, privacy, and greater level of oversight. Unmet needs included lacking preparedness in completing nursing responsibilities and handling caregiver and patient distress. While the homebound program was preferred to routine hospital care, psychotherapeutic support and programming to improve caregiver preparedness in a homebound HSCT recovery program is indicated.

A technology-enhanced model of care for transitional palliative care versus attention control for adult family caregivers in rural or medically underserved areas: study protocol for a randomized controlled trial

BackgroundTransitioning care from hospital to home is associated with risks of adverse events and poor continuity of care. These transitions are even more challenging when new approaches to care, such as palliative care, are introduced before discharge. Family caregivers (FCGs) are expected to navigate these transitions while also managing care. In addition to extensive caregiving responsibilities, FCGs often have their own health needs that can inhibit their ability to provide care. Those living in rural areas have even fewer resources to meet their self-care and caregiving needs. The purpose of this study is to test the efficacy and cost-effectiveness of an intervention to improve FCGs’ health and well-being. The intervention uses video visits to teach, guide, and counsel FCGs in rural areas during hospital-to-home transitions. The intervention is based on evidence of transitional and palliative care principles, which are individualized to improve continuity of care, provide caregiver support, enhance knowledge and skills, and attend to caregivers’ health needs. It aims to test whether usual care practices are similar to this technology-enhanced intervention in (1) caregiving skills (e.g., caregiving preparedness, communication with clinicians, and satisfaction with care), (2) FCG health outcomes (e.g., quality of life, burden, coping skills, depression), and (3) cost. We describe the rationale for targeting rural caregivers, the methods for the study and intervention, and the analysis plan to test the intervention’s effect.MethodsThe study uses a randomized controlled trial design, with FCGs assigned to the control condition or the caregiver intervention by computer-generated lists. The intervention period continues for 8 weeks after care recipients are discharged from the hospital. Data are collected at baseline, 2 weeks, 8 weeks, and 6 months. Time and monetary costs from a societal perspective are captured monthly.DiscussionThis study addresses 2 independent yet interrelated health care foci—transitional care and palliative care—by testing an intervention to extend palliative care practice and improve transition management for caregivers of seriously ill patients in rural areas. The comprehensive cost assessment will quantify the commitment and financial burden of FCGs.Trial registrationClinicalTrials.gov NCT03339271. Registered on 13 November 2017.Protocol version: 11.