Assist Family Caregivers Research Articles

‘I may have to give up on my career.’ Breadwinners or caregivers? Exploring the complexities of work-family conflict among parents of children with neurodevelopmental disabilities

Objectives The current study attempts to explore the work-family conflict experienced by working parents providing primary care for children with neurodevelopmental disabilities (NDDs) in India. Methods A qualitative research design was utilized. A semi-structured interview of 20 working parents was carried out and was subjected to Interpretative Phenomenological Analysis. Results Based on the responses from the one-on-one interview, it was revealed that working parents experienced overlapping work-related issues, family-related issues, caregiving-related issues, and physical and emotional exhaustion impacting their work, family, and caregiving domains. Conclusions Working parents of children with NDDs experience work-family conflict in which caregiving duties, work responsibilities, and family demands interfere with one another substantially. Based on their responses, a few caregiver-friendly workplace policies were formulated. The present findings would enable policymakers to formulate caregiver-friendly workplace policies to assist family caregivers.

2218 Experience of family caregivers for older patients with delirium: a qualitative study

Abstract Background Delirium is associated with psychological and cognitive complications that have impacts beyond the patients. Although family members and carers can play a significant role in the management and recognition of delirium, there is limited research on the experience of family caregivers in the context of delirium. This study aims to explore the needs and experiences of family caregivers for a person with delirium and offer suggestions to support them. Method A qualitative interview study with family caregivers of persons with delirium. Data were analysed using an abductive analysis approach. Results Fourteen family caregivers were interviewed. Carers explained their feeling of responsibility to support their loved ones with delirium, however, they perceived their caregiving role negatively because of increasing demands and the lack of sufficient support. Carers attributed their emotional exhaustion and distress to the onset of delirium, change in the personality of the person with delirium, confusion and progression of delirium. Additionally, carers indicated the negative impact of caregiving on the quality of the relationship between them and person with delirium. This highlights the need to enhance the support provided to carers to mitigate the emotional and relationship impact of caregiving on the carer. We identified the needs of carers for people with delirium including: education on delirium, reassurance, information on care pathways and support from formal carers to take breaks. Conclusions Viable solutions to assist family caregivers include more support for the carer in formulating care plans for people with delirium, the development of support groups for family caregivers of people with delirium, and a case worker. These solutions may help to decrease re-hospitalisation and admission to care homes. Future research should focus on approaches to better support carers of people with delirium, and to shift the care plan from person-centred into person and family-centred approach.

Through Alzheimer’s Eyes: A Virtual Pilot Intervention for Family Caregivers of People with Dementia

ABSTRACT Objective To evaluate the feasibility and acceptability of a virtually delivered psychoeducational skill-building intervention for ADRD caregivers. Methods A single-arm, pre-posttest pilot study design was employed to evaluate the intervention. Four 90-min group-based weekly sessions were combined with four individual coaching sessions via Zoom. Intervention components covered topics designed to reduce caregiver stress and distress, and a VR experience to help caregivers understand dementia. Data was gathered via REDCap pre- and post-intervention and through post-intervention interviews via Zoom. Results Results (N = 20) from individual interviews, surveys, and treatment implementation strategies suggest strong feasibility and acceptability. Key change exploration indicated medium effect sizes and statistical significance in preparedness for caregiving (t(19) = 2.69, p = .015, d = 63), communication (t(19) = 2.45, p = .024, d = 0.55), and a medium effect size for the mindful attention awareness scale (t(19) = 0.48, p = (0.637, d = 0.54). Further, participants reported their perceptions of improvement in outcomes such as the ability to care, increased understanding of memory loss, and confidence. Conclusions Through Alzheimer’s Eyes is a feasible and acceptable intervention that blends technology with skill-building strategies to help caregivers manage their stress and distress regardless of their location. Clinical Implications There is potential for interventions including VR to assist family caregivers in managing caregiving challenges and improve well-being.

Opportunities and Challenges for Augmented Reality in Family Caregiving: Qualitative Video Elicitation Study.

Although family caregivers play a critical role in care delivery, research has shown that they face significant physical, emotional, and informational challenges. One promising avenue to address some of caregivers' unmet needs is via the design of digital technologies that support caregivers' complex portfolio of responsibilities. Augmented reality (AR) applications, specifically, offer new affordances to aid caregivers as they perform care tasks in the home. This study explored how AR might assist family caregivers with the delivery of home-based cancer care. The specific objectives were to shed light on challenges caregivers face where AR might help, investigate opportunities for AR to support caregivers, and understand the risks of AR exacerbating caregiver burdens. We conducted a qualitative video elicitation study with clinicians and caregivers. We created 3 video elicitations that offer ways in which AR might support caregivers as they perform often high-stakes, unfamiliar, and anxiety-inducing tasks in postsurgical cancer care: wound care, drain care, and rehabilitative exercise. The elicitations show functional AR applications built using Unity Technologies software and Microsoft Hololens2. Using elicitations enabled us to avoid rediscovering known usability issues with current AR technologies, allowing us to focus on high-level, substantive feedback on potential future roles for AR in caregiving. Moreover, it enabled nonintrusive exploration of the inherently sensitive in-home cancer care context. We recruited 22 participants for our study: 15 clinicians (eg, oncologists and nurses) and 7 family caregivers. Our findings shed light on clinicians' and caregivers' perceptions of current information and communication challenges caregivers face as they perform important physical care tasks as part of cancer treatment plans. Most significant was the need to provide better and ongoing support for execution of caregiving tasks in situ, when and where the tasks need to be performed. Such support needs to be tailored to the specific needs of the patient, to the stress-impaired capacities of the caregiver, and to the time-constrained communication availability of clinicians. We uncover opportunities for AR technologies to potentially increase caregiver confidence and reduce anxiety by supporting the capture and review of images and videos and by improving communication with clinicians. However, our findings also suggest ways in which, if not deployed carefully, AR technologies might exacerbate caregivers' already significant burdens. These findings can inform both the design of future AR devices, software, and applications and the design of caregiver support interventions based on already available technology and processes. Our study suggests that AR technologies and the affordances they provide (eg, tailored support, enhanced monitoring and task accuracy, and improved communications) should be considered as a part of an integrated care journey involving multiple stakeholders, changing information needs, and different communication channels that blend in-person and internet-based synchronous and asynchronous care, illness, and recovery.

Technologies' Potential And Difficulties In Assisting Family Caregivers Of Patients With Somatoform Diseases

Technologies' Potential And Difficulties In Assisting Family Caregivers Of Patients With Somatoform Diseases

Family physicians’ preferences for education to support family caregivers: a sequential mixed methods study

BackgroundOne in four Canadians is a family caregiver. Family caregivers (carers, care-partners) are relatives or chosen family, friends, or neighbors who provide 75 to 90% of the care for people with physical or mental illness, disabilities, or frailty living in community homes and assist with 15 to 30% of the care in congregate care. However, a recent (2022) Statistics Canada population health study reports 44% of family caregivers are distressed. Family physicians and primary care teams are well-positioned to support family caregivers; yet, family caregiver needs assessments tend to be ad hoc and their most common needs remain unmet. Research recommends training healthcare professionals to enhance their knowledge and skills to support family caregivers.MethodsThe objective of this sequential mixed methods research, a survey followed by qualitative interviews, was to explore family physicians’ desire and preferences for education about supporting family caregivers. 85 family physicians completed the online survey and eight took part in the interviews. Results from the survey and interviews were compared, contrasted, and interpreted together.ResultsPrimary care physicians expressed a desire to be better equipped to assess and support FCGs’ needs. Even though most physicians (61%) were very/confident about addressing family caregivers’ needs, 72% were highly/interested in education to support family caregivers of their patients. Topics with the most interest were assessing family caregivers needs in an organized way, assisting family caregivers to access resources, and address system and practice barriers to support family caregivers. The overarching theme running through the interviews was physicians hope for education to help change the patient-focused culture to inclusion of FCGs. The three themes reflect physicians’ conviction about including family caregivers in patient care: We need to take care of their caregivers, Practice and system barriers thwart including family caregivers, and Practical education might help.ConclusionsThis study of family physicians’ preferences for education to support family caregivers will inform the development of education about supporting family caregivers for family physicians and trainees.

Family caregivers’ sense-making of the results of functional neurodiagnostics for patients with Prolonged Disorders of Consciousness

ABSTRACT Functional neuroimaging and electrophysiological assessments can identify evidence of residual consciousness and cognition in patients with prolonged disorders of consciousness (PDOC) who are otherwise behaviourally unresponsive. These functional neurodiagnostics are increasingly available in clinical settings and are recommended by international clinical guidelines to reduce diagnostic and prognostic uncertainty, and thereby assist family caregivers in their best-interests decision-making. Nevertheless, little is known about how family caregivers make sense of the results of these state-of-the-art functional neurodiagnostics. By applying Interpretative Phenomenological Analysis (IPA) to interviews with family caregivers of patients with diagnoses of PDOC who had received a functional neurodiagnostic assessment, we identify three primary themes of sense-making: The special significance of “brain scans”; A dynamic sense-making process; Holding on to hope and holding on to the person. These themes highlight the challenges of helping family caregivers to balance the relative importance of functional neurodiagnostic results with other clinical assessments and identify an ability of family caregivers to hold a contradiction in which they hope for recovery but simultaneously express a rational understanding of evidence to the contrary. We offer several recommendations for the ways in which family caregivers can be better supported to make sense of the results of functional neurodiagnostics.

EAST MEETS WEST: INTERVENTIONS, PRACTICE MODELS, AND POLICIES TO SUPPORT FAMILY CAREGIVERS IN DIVERSE CULTURES

Abstract This East Meets West symposium consists of six studies that examined innovative interventions, practice models and policies designed to support family caregivers of older adults in the U.S., Taiwan, and mainland China. The first two papers both used case management interventions to assist family caregivers with a focus on caregiver depression. The paper from the U.S. found that more difficulties of performing caregiving tasks and less caregiver preparation contributed to higher levels of depression, and the paper from Taiwan found that caregivers who received the case management service reduced depression at four-month and six-month follow-up assessments. The third paper discussed a “time travel” paradigm developed to guide service design and delivery for persons with dementia at different stages. The fourth paper used the state of Michigan as a case to examine service gaps in the current aging service network, and identifies an urgent need for statewide policy renovations to support family caregivers. The fifth and sixth papers both used large secondary data analyses to examine the effects of piloted policy and practice efforts on family caregiver outcomes. One study found that the long-term care insurance programs have resulted in positive caregiver outcomes including reduced caregiving financial cost, time, and physical and psychological burden. The other study found the use of home-based care services reduced adult children caregiver burden and did not affect the relationship between older adults and adult children caregivers. After individual presentations are done, two discussants will summarize shared themes in these papers and provide critical feedback.

Perspectives of Family Caregivers of People With Alzheimer's Disease on Caregiving Experience and Needs: A Qualitative Study.

The current study aimed to investigate the perspectives of family caregivers of people with Alzheimer's disease on caregiving experience and needs. A qualitative descriptive method was used with a sample of 23 family caregivers. Data were collected through in-depth, face-to-face interviews using a pilot-tested semi-structured interview guide. Data analysis was performed via content analysis. Three major themes emerged: (1) Stuck in Caregiving, (2) A Life in Metamorphosis, and (3) Needs. Findings revealed that caregivers struggled to manage the care process, adapt to life changes, and fulfill their needs. This study provides rich data to help create interventions to assist family caregivers. [Journal of Psychosocial Nursing and Mental Health Services, 62(6), 36-45.].

Caregiving stress among family caregivers of older adults living with disabilities in China

ObjectivesThis study aimed to describe caregiving stress among family caregivers of Chinese older adults living with disabilities, and explore how care intensity, financial expenses, and care difficulties are associated with caregiving stress. MethodsData of 220 older adult-caregiver dyads were collected from 6 urban districts and 6 rural counties from Shandong province, China. Descriptive analyses and multivariate ordinal logistic regression analyses were performed. ResultsFamily caregivers providing nine or more hours of care per day reported higher caregiving stress than those who provided fewer than nine hours. Caregivers who experienced insufficient care abilities, economic hardships, or time conflicts were more likely to report caregiving stress. Financial support provided to older adults was not associated with caregiving stress. ConclusionsFamily caregivers of Chinese older adults with disabilities are experiencing excessive caregiving stress. Social support groups and China's long-term care insurance system should be promoted to better assist family caregivers.

Factors Related to Family Caregivers' Readiness for the Hospital Discharge of Advanced Cancer Patients.

Background: Many family caregivers of advanced cancer patients worry about being unable to provide in-home care and delay the discharge. Little is known about the influencing factors of discharge readiness. Methods: This study aimed to investigate the influencing factors of family caregivers’ readiness, used a cross-sectional survey, and enrolled 123 sets of advanced cancer patients and family caregivers using convenience sampling from four oncology wards in a medical centre in northern Taiwan. A self-developed five-point Likert questionnaire, the “Discharge Care Assessment Scale”, surveyed the family caregivers’ difficulties with providing in-home care. Results: The study showed that the discharge readiness of family caregivers affects whether patients can be discharged home. Moreover, the influencing factors of family caregivers’ discharge readiness were the patient’s physical activity performance status and expressed discharge willingness; the presence of someone to assist family caregivers with in-home care; and the difficulties of in-home care. The best prediction model accuracy was78.0%, and the Nagelkerke R2 was 0.52. Conclusion: Discharge planning should start at the point of admission data collection, with the influencing factors of family caregivers’ discharge readiness. It is essential to help patients increase the likelihood of being discharged home.

Family Caregiver Preparedness: Developing an Educational Intervention for Symptom Management.

Family caregivers provide complex care for patients with cancer, including management of multiple symptoms associated with the disease and its treatment. The objective of this pilot project was to develop and conduct feasibility testing of a family caregiver educational intervention for symptom management. The intervention was conducted with 23 family caregivers of patients with lung or gynecologic cancer to evaluate feasibility testing and assessment of caregiver preparedness, quality of life, and psychological distress at baseline and three and seven weeks postintervention. Family caregivers were very interested in education related to their role in symptom management, with management of constipation, dyspnea, and diarrhea as the highest priorities. The intervention was feasible and valuable in assisting family caregivers in assessing symptoms and making decisions regarding treatment choices.

Virtual Geriatric Education Preferences of Rural Social Workers

Older adults in rural communities need access to comprehensive healthcare services provided by practitioners equipped with geriatric knowledge and skills. The Geriatric Rural Extension of Expertise through Telegeriatric Service (GREETS) project goal is to use telemedicine and telehealth to expand geriatric service options to underserved Michigan regions. GREETS educational programs train health practitioners to provide geriatric care for vulnerable older adults. To determine gaps in geriatric competencies, the team conducted an online survey of health professionals including behavioral health practitioners. Respondents identified educational topics and preferred virtual delivery methods. Demographic information included respondent’s professional position, practice setting, and county. The respondents were asked to indicate level of educational need using a scale ranging from a low, medium, or high need. Fifty (47%) of 106 total responses were from social workers. We compared the percent of social workers to other practitioners’ responses in our analysis. Four topics emerged for both groups as medium or high educational needs: 1) transitional care when changing residential settings or post-hospitalization; 2) assisting family caregivers cope with caregiving responsibilities; 3) incorporating community-based services into care plans; and 4) and managing frail older adults. Social workers noted higher need than the other respondents for: 1) managing chronic pain; 2) managing care of patients with multiple chronic conditions; 3) having serious illness conversations; 4) diagnosing dementia; and 5) discussing advance care planning. Both social worker and other respondents indicated interactive case-based webinars; published tools, toolkits, tip sheets; and didactic webinars as their top three learning formats.

Compassion Fatigue Among Family Caregivers of Schizophrenic Patients

Caring for schizophrenic patients can cause long-term family caregivers to experience suffering and compassion fatigue (CF). However, the manifestations of CF among family caregivers of schizophrenic patients are unclear. The purpose of this study was to explore manifestations of CF among family caregivers of schizophrenic patients. In this study, grounded theory was used, and purposive and theoretical sampling was employed to recruit participants. Data were collected from 29 family caregivers through in-depth interviews and field notes. Constant and comparative methods were used to analyze data. The study revealed that participants had experienced several manifestations of CF, including stress, physical and mental exhaustion, disheartenment, anxiety and uncertainty, difficulty sleeping, a feeling of endless hard work, and a strong bonding with the patient. Compassion fatigue among family caregivers is a major concern impacting their ability to care for and aid schizophrenic patients. These findings can alert mental health professionals, including mental health nurses, to improve awareness and understanding of CF experienced by family caregivers. Mental health professionals can use these findings to develop plans to assist family caregivers of schizophrenic patients in alleviating manifestations of CF among these caregivers.

Caregivers' Technology Acceptance of an In-Home Care Management App: A Mixed-Methods Study.

Taiwan faces challenges in providing long-term family care as its population rapidly ages. This study aimed to construct a health application that could effectively meet family caregivers' needs in providing home care. Mixed methods were adopted to explore their acceptance of the application, as well as to gather their suggestions for improving the application. A nonrandomized controlled group pretest-posttest design was utilized. The participants were family caregivers who were recruited via purposive sampling at a regional hospital in Taipei, Taiwan. The caregivers used the application to monitor and manage the health of those they were caring for. Elderly family caregivers scored 1.57 and 1.16 points higher than their middle-aged counterparts in terms of performance expectancy (0.61-2.53, P = .01) and effort expectancy (0.25-2.06, P = .01), respectively. The caregivers opined that it was convenient to use the application for managing the health data of their patients, and resources and solutions for overcoming problems when using the application were easily within their reach. They also suggested that relevant information for promoting patient mental health could also be included in the application. Thus, the software is acceptable to all the family caregivers regardless of age, indicating that it can assist family caregivers in the future in performing home care management.

A Systematic Review of In-Home Smart Technology Adoption to Improve Older Adult Health and Family Caregiving

In-home and internet-based smart technologies to improve older adult health has been rapidly developing. Technologies such as in-home sensors and smart homes enable older adults to live independently and age in place. These technologies also assist informal caregivers in their roles, thus reducing caregiver burden. However, technology adoption among older adults and family caregivers has been relatively low and reasons for technology acceptance are complex. Therefore, the purpose of this study was to conduct a systematic review of the literature, examining acceptance and adoption of in-home, internet-based smart technologies that are designed to improve health outcomes of older adults and can assist family caregivers in providing supports. This study utilized the Rew method (2011) and included peer-reviewed research articles published between 1991 and 2019 and available in: ISI Web of Science; PubMed; Scopus; CINAHL; and PsycInfo. A total of 1,227 relevant articles were identified with the search strings used and a final sample of 48 articles were included after the title, abstract, and full article review processes. Findings highlight several facilitators and barriers to technology adoption. Some facilitators to adoption include: technology familiarity, safety/security, personally tailored, non-obtrusive design, easy access, and reduction of caregiver burden. A few barriers include: cost, difficulty to use, time, stigma, privacy, data accuracy, and confidence. Additional findings will also be presented. A more thorough understanding of these facilitators and barriers to acceptance/adoption is crucial for the successful dissemination of in-home, internet-based smart technologies. Increased adoption can improve older adult health and reduce caregiver burden.

Federal Advisory Councils Established to Assist Working Caregiving Families

This presentation will describe the legislative charge of two advisory councils established in 2018 through the Recognize, Assist, Include, Support and Engage Family Caregivers Act and the Supporting Grandparents Raising Grandchildren Act to support working family caregivers. The advisory councils are charged with 1) providing recommendations on effective models of family caregiving 2) improving coordination across federal government programs; and 3) identifying, coordinating, and promoting information, resources, and 4) best practices for working grandparents raising grandchildren, while maintaining their own physical, mental, and emotional well-being. The experiences of working family caregivers will be the foundation for these recommendations that are being developed over the next two years to present to Congress. These recommendations will support the development and execution of a national family caregiving strategy.

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.

Cloud-based physiological sound-controlled intelligent music and blood-pressure control system for assisting family caregivers of dementia patients

Population aging causes the prevalence of hypertension to increase, which increases the incidence of dementia and leads to premature death. The simultaneous development of these two diseases accelerates the progression of dementia, leading to a reduction in the patient’s quality of life. This is difficult for caregivers, as it causes them to shoulder a greater burden and brings greater emotional stress, resulting in their wanting to end the care relationship or even neglect or abuse patients. In addition, their own mental and physical health is also severely affected, causing them to seek medical treatment themselves. In view of this problem, we propose a cloud-based physiological sound-controlled intelligent music and blood-pressure control system to assist family caregivers of dementia patients to reduce their burden as well as their stress. We interview family caregivers regarding the benefits of this system in assisting them and find that most caregivers find the system to be helpful.

1 in 5 North Carolina Adults are Caregivers: Addressing Unpaid Family Caregiver Burden with Supportive Services.

Medical advances paired with expanding home care technology and shorter hospital stays have placed increased responsibilities on family and friends. Yet, most caregivers report they are ill-prepared for their role. There are services and supports specifically designed to assist family caregivers.