Distance Caregivers Research Articles

Patients' and caregivers' experiences of hospitalization under COVID-19 visitation restrictions.

BackgroundDuring the COVID‐19 pandemic, hospitals did not allow caregiver visitation. Little is known about how caregivers' absence affected patients' care.ObjectiveThis study aimed to describe visitation restrictions' impact on patients and their caregivers experiences.DesignWe used a sequential explanatory mixed‐methods study design. First, we randomly selected 200 adult patients with cancer or heart failure hospitalized before (n = 100) and during visitor restrictions (n = 100) and abstracted data from the electronic medical record on communication between medical teams and caregivers and the topics discussed. Results from the quantitative analysis guided our thematic analysis of semi‐structured interviews conducted with a subsample of patients hospitalized during visitor restrictions and their caregivers to understand the impact of visitor restrictions on their experiences.ResultsCompared to prerestrictions, caregivers under visitation restrictions communicated less frequently with the medical team (29% vs. 37% of hospitalized days; p = .04), fewer received discharge counseling (37% vs. 52%; p = .04), and disproportionately more had no contact with the medical team (36% vs. 17%; p < .01). Video conferencing was documented for caregivers of only five patients. Qualitative analysis revealed that both caregivers and patients experienced emotional distress, increased conflict, and decreased perception of quality of care because of visitation restrictions.ConclusionsHospital visitor restrictions significantly reduced caregivers' communication with patients' medical team, causing caregivers and patients emotional distress. Protocols that facilitate communication between caregivers and care teams may benefit caregivers who cannot be physically present at care facilities, including distance caregivers.

Caring From Afar: Long-Distance Caregivers’ Use of Supportive Services for Themselves

Although long distance caregivers (LDCs) are starting to be recognized as a subgroup of care partners experiencing unique challenges and stresses, it is unknown 1) what types of supportive services LDCs use for themselves and 2) what factors are associated with supportive service use in this understudied caregiving population. In our sample of 304 LDCs (Mage=56.9), the most frequently utilized service was video phone/webcam systems to monitor the care recipient (CR). Guided by Andersen’s Model of Health Care Utilization and using multiple hierarchical regression analysis, younger age of the LDC (a predisposing factor) and need-related characteristics (greater caregiving burden and depressive symptoms, more time spent helping the CR, and worse CR functional status) were associated with greater use of supportive services. Enabling factors were not associated with service use. These study findings can help inform how to engage LDCs in supportive service utilization.

Geographic distance and social isolation among family care-givers providing care to older adults in Canada

AbstractFamily care-giving is associated with social isolation, which can lead to adverse health and wellbeing outcomes among family care-givers. The role of geographic distance in care-giver social isolation (CSI) is unclear and has received mixed research findings. Framed by the Ecological Model of Caregiver Isolation, this study examined the relationship between geographic distance and CSI, including the interaction between geographic distance and care-giving intensity for CSI. Linear regression and analysis of covariance were used to test these hypotheses using a sub-set of family care-givers from the 2012 Canadian General Social Survey (N = 2,881). Care-givers living a short distance from receivers reported lower levels of social isolation than co-resident, moderate-distance and long-distance care-givers. Being involved in higher-intensity care-giving as the primary care-giver, undertaking more care-giving tasks and providing care more frequently resulted in higher CSI scores. Long- and moderate-distance care-givers reported greater CSI than co-resident and short-distance care-givers only when providing higher-intensity care-giving. Employing a granulated measure of geographic distance positioned within an ecological framework facilitates an understanding of the nuanced association between geographic proximity and CSI. Furthermore, the identified interaction effects between geographic distance and care-giving intensity on CSI further explicate the complexity of care-giving experiences. The findings are relevant for programmes supporting care-givers in different contexts, especially distance care-givers.

Videoconference Intervention for Distance Caregivers of Patients With Cancer: A Randomized Controlled Trial.

Approximately 20% of caregivers (CGs) live > 1 hour away from the patient and are considered distance caregivers (DCGs) who often report higher distress and anxiety than local CGs. The purpose of this study was to test the effectiveness of an intervention aimed at reducing anxiety and distress in DCGs of patients with cancer. This randomized controlled trial enrolled DCGs of patients with all cancer types who were being seen monthly by oncologists in outpatient clinics. There were three arms of the intervention delivered over a 4-month period: arm 1 (a) received 4 monthly videoconference-tailored coaching sessions with an advanced practice nurse or social worker focused on information and support, (b) participated in patient's appointments with the oncologist via videoconference over the 4-month study period, and (c) had access to a website designed for DCGs. Arm 2 did not receive the coaching sessions but received the other two components, and arm 3 received access to the DCG website only. There were 302 DCGs who provided pre- and postintervention data. There were significant anxiety by group (P = .028 and r = 0.16) and distress by group interactions (P = .014 and r = 0.17). Arm 1 had the greatest percentage of DCGs who demonstrated improvement in anxiety (18.6%) and distress (25.2%). Coaching and use of videoconference technology (to join the DCG into the patient-oncologist office visit) were effective in reducing both anxiety and distress for DCGs. These components could be considered for local CGs who-with COVID-19-are unable to accompany the patient to oncologist visits.

Geographic Distance and Social Isolation Among Family Caregivers Providing Care to Older Adults

Family caregiving is associated with social isolation, but the role of geographic distance between caregiver and receiver in caregiving experience is unclear with mixed research findings. This study examined the relationship between geographic distance and caregiver social isolation (CSI), and explored the interaction between geographic distance and caregiving intensity in association with CSI. Based on the Ecological Model of Caregiver Isolation, hierarchical linear regression and ANCOVA analyses were applied to conduct data analysis with the 2012 Canadian General Social Survey (N=2,881). Caregivers living a short distance from receivers reported the lowest CSI than coresident, moderate and long distance caregivers. Being involved in higher intensity caregiving as the primary caregiver, undertaking more caregiving tasks, and providing care more frequently resulted in higher CSI scores. Additionally, long and moderate distance caregivers reported greater CSI than coresident and short distance caregivers only when providing higher intensity caregiving. Geographic distance is a salient contextual factor affecting CSI, and longer distance creates environmental barriers for caregiving provision. Employing a granulated measure of geographic distance positioned within an ecological framework facilitates an understanding of the nuanced association between geographic proximity and CSI. Furthermore, the identified interactive effects between geographic distance and caregiving intensity on CSI further reveal the complexity of caregiving experience. The findings are relevant for programs supporting caregivers in different contexts, especially physical distance.

Video conferencing long distance caregivers during oncology appointments: Implications for clinical practice.

e24198 Background: Distance Caregivers (DCGs) – caregivers living &gt; 1 hour away from the patient – face unique challenges regarding frustration at receiving second hand information about the patient’s condition and uncertainty regarding how to assist the patient. Videoconferencing allows DCGs to connect for the patient’s oncology appointments while avoiding costly travel expenses and time away from work and family. Methods: 441 patient-DCG dyads enrolled in a randomized controlled trial at a large, urban comprehensive cancer center. Patients of all cancer types were eligible if they had monthly oncologist appointments. DCGs were randomized to one of three arms. Arm 1 – received four monthly videoconference coaching sessions with a nurse or social worker, connected for the patient’s oncology appointments, and had access to a website designed for DCGs; Arm 2 – connected for the patient’s oncology appointments over four months and had access to the DCG website; Arm 3 – received access to the DCG website. To evaluate the impact on clinical practice, outpatient oncology appointments were timed. Helpfulness of the intervention was rated from 0-10 with higher scores representing greater amounts of helpfulness. Descriptive statistics, ANOVA, and Pearson’s correlation were conducted to describe features, determine group differences, and identify relationships among variables. Results: Mean helpfulness ratings were 9.06 (patients), 9.30 (local caregivers), 9.08 (DCGs), and 7.98 (oncologists). Average appointment times (in minutes) for Arm 1, Arm 2, and Arm 3 were 19.63 (SD = 7.69), 21.34 (SD = 9.95), and 17.80 (SD = 10.20), respectively. Arm 2 had significantly longer appointments than Arm 3 (mean difference: 3.54, p = .025). No relationships were found between length of appointment time and helpfulness ratings. Conclusions: The videoconferencing intervention was well-received by oncologists, patients, and DCGs. Appointments were longest in Arm 2, followed by Arm 1, then Arm 3 (control). It makes sense that connecting an additional person lengthened the meetings, but it was noteworthy that Arm 2 was longest. DCGs in Arm 2 (who did not have the coaching) likely had more unanswered questions that were discussed with the oncologist compared to Arm 1 DCGs. Cancer centers should consider this when implementing videoconferencing technology. Clinical trial information: NCT02666183 .

Video conference intervention for distance caregivers (DCGs) of patients with cancer: Improving psychological outcomes.

12123 Background: Family caregivers are increasingly involved in providing care and support for patients with cancer. Approximately 20% of caregivers live &gt; 1 hour away from the patient and are considered DCGs. DCGs report higher distress and anxiety than local caregivers—often due to lack of first hand information and a high degree of uncertainty regarding the patient’s condition. Methods: This RCT was conducted at a large, urban comprehensive cancer center. Patients of all cancer types were eligible if they had monthly oncologist appointments and were receiving treatment. DCGs were randomized to one of three arms. Arm 1 received 4 monthly videoconference coaching sessions with a nurse practitioner or social worker focused upon information and support, participated in patient’s appointments with the oncologist via videoconference over the 4 month study period, and had access to a website designed for DCGs. Arm 2 did not receive the coaching sessions but received the other 2 components of Arm 1. Arm 3 received access to the DCG website only. Primary variables of interest were DCG distress and anxiety. DCGs completed online surveys prior to randomization and at the completion of the intervention period. PROMIS Anxiety and the NCCN distress thermometer were used. Results: Between November, 2016 and October, 2019, 441 patient-dyads were enrolled. Mean DCG age was 47 years; 71% were female, 65% Caucasian, 63% were the child of the patient and 81% were employed. Mean patient age was 65 years, 60% were female, 30% had GI cancer and 18% had hematologic cancer. For patients with solid tumor cancers, 59% were Stage IV. RMANOVA was used to examine the change in anxiety t-scores over time by arms of the intervention, controlling for DCG age, race, and gender. There was a significant anxiety by group interaction (p = .03) with Arm 1 being the only group that showed a significant reduction in anxiety over time (21.2% improved, ES = .57). Distress followed a similar pattern with a significant distress by group interaction (p = .02) with Arm 1 demonstrating the greatest improvement in distress over time (54.3%). Conclusions: These data suggest that the use of a coaching videoconference intervention made significant and clinically meaningful differences in anxiety and distress for these important members of the family caregiving team. Clinical trial information: NCT02666183 .

„Distance Caregiving“ – empirische Einblicke aus betrieblicher Perspektive

Labor market mobility and demographic change contribute to higher numbers of people providing care for their family members from a distance. Concerning the reconciliation of work and care the geographic distance between family members becomes more and more important. For progressive employers, this raises the question to what extent their portfolio is sufficient to support distance caregivers. Using an interview guideline, 4-6 expert interviews were conducted in 5partner companies (human resources department, management, executive, works council or employee representative, directors in nursing services; N = 24). The interviews were recorded, transcribed applying standardized procedures, and evaluated using content analysis by means of deductive and inductive categorization. The participating companies had already established numerous reconciliation measures but did not yet focus on distance caregiving. As caregiving issues generally touch on taboo subjects, there is an enhanced need for sensitization and information for all parties involved (management, executives, employees). For distance caregivers, aculture of trust, transparent information and good communication are particularly important. To achieve good reconciliation of work and care, working caregivers and executives need a corporate culture which is sensitive to care issues and able to address previously tabooed aspects. In addition, company portfolios for distance caregiving are needed to provide data-driven, thoughtful and timely support for employees and managers.

Distance caregiving: an issue among sociopolitical actors?

Caregiving from a distance is understudied as well as rarely sociopolitically debated in Germany. Accordingly, distance caregiving is a type of informal care work that has been little acknowledged in social law. This article addresses the issue of how aware sociopolitical experts in Germany are of distance caregiving. Moreover, it points out the challenges the experts perceive in the legal framework and which solutions they can identify. Guided interviews were conducted with six experts from sociopolitical areas in Germany with points of connection to care politics (ministries, associations, organizations). The interviews were analyzed based on the method of summarizing qualitative content analysis (according to Mayring). Even though distance caregiving has played a minor role among the sociopolitical experts, they were aware of individual aspects of this topic, mostly based on having been personally affected. Due to this experience they argued for a broader understanding of care including for example organizational support. They criticized the lack of sociopolitical consideration of distance caregivers and among other things demanded a functioning local support system. The interviews indicated a specific and personal awareness of distance caregiving; however, the findings pointed to stronger criticism of the overall situation regarding caregiving relatives. Thus, despite all recent reforms in distance caregiving there is still a need for action on the topic of caregiving relatives.

DISTANCE CARE: CHALLENGES AND POTENTIALS BEYOND NATIONAL DISTANCES AND INTERNATIONAL BOUNDARIES

In the course of demographic dynamics, increased labor market mobility and changing family patterns caring for a family member far away becomes more of a challenge. In this context “distance caregiving” is a new and so far under researched field. The binational Distance Caregiving “DiCa” project (2016–2019) with an interdisciplinary German and Swiss research team aims to investigate different dimensions and involved parties of distance caregiving: caregivers, employers and health care services. The focus is on distance caregivers who have a national but in some cases also a cross-border long distance to overcome to identify challenges and areas of burden for these caregivers. The aim of this study is on one hand to identify strategies to help both employed and unemployed caregivers with this particular challenge and burden. On the other hand the project aims to sensitize employers and health care services so that they are able to provide adequate help and communication. In this paper, results for Germany and Switzerland from a secondary data analysis from the Survey of Health, Aging and Retirement in Europe (SHARE) and the German Ageing Survey (DEAS) will be presented as well as first results from qualitative expert interviews with employers from different sectors (e.g. automobile, insurance company, healthcare institution). Supporting distance caregivers with appropriate actions and instruments is important to relieve these employees and to maintain their employability. Offering support with caregiving over a larger distance can also be seen as a strategic instrument for recruitment in the long term.

Distance caregiving a family member with cancer: A review of the literature on distance caregiving and recommendations for future research.

Distance caregivers (DCGs) are a growing phenomenon in the United States Family members are struggling to provide care to loved ones with chronic illnesses such as cancer, from a distance. Unlike local caregiving research, distance caregiving research is limited and inconsistent definitions of distance make it difficult to compare studies. To date, DCGs have not been afforded the opportunities for educational and emotional support that local caregivers have received from the health care teams. Because they are not usually present at medical appointments, DCGs do not receive first-hand information from the health care team about the patient's condition, disease progression, and/or treatment options. These caregivers report feeling left out of important family discussions. They experience anxiety related to the uncertainty of the family members' well-being and guilt related to not being available to help local caregivers more. The challenges of distance caregiving are especially evident when the distance caregiver has a parent with advanced cancer. Family-centered care, attending to the needs of the whole family regardless of their geographic location is critical for quality cancer care. In this manuscript, the sparse literature on distance caregiving is reviewed. Recommendations for future research and for the development of creative technologically advanced interventions for this underserved caregiving population are suggested.

Can eHealth help distance caregivers? A mixed-methods study exploring the use of ICT by carers at a distance in palliative care

Can eHealth help distance caregivers? A mixed-methods study exploring the use of ICT by carers at a distance in palliative care

Distance Caregivers of People with Alzheimer's Disease and Related Dementia: A Phenomenological Study

Introduction: This research study focused on exploring the lived experience of people caring for someone with Alzheimer's disease and related dementia from a distance (defined as 2 or more hours' distance by car) to help shed light on this caregiving population. Method: Ten participants (all adult children caring for a parent with Alzheimer's disease and related dementia) were involved in this qualitative, phenomenological study. Each participant took part in two individual interviews, the first interview in person with a follow-up interview by telephone phone. After the interviews were transcribed, data were analysed using Moustakas's (1994) modified Van Kaam Method. Findings: Six general themes were derived from quotations from participants, revealing different aspects of the distance caregiving experience. Findings indicated that participants spent much time managing and coordinating the care of their relative. Participants indicated a wish to provide information on their relative that could help healthcare professionals provide effective care, and felt that the process of providing care to their relative impacted their professional and personal lives, including developing deeper connections with their relative and others. According to participants, the experience of caregiving, and balancing caregiving demands with other life demands, led to personal changes and growth. Conclusion: Occupational therapists and other healthcare professionals need to interact and communicate with distance caregivers of people with Alzheimer's disease and related dementia to better support the caregivers and the care being provided to the person with dementia.

Distance Caregiving a Parent With Cancer

To discuss the new phenomenon of distance caregiving, with an emphasis on the experience of adult children providing distance caregiving to a parent with cancer. Literature review and author research. Although the research is limited, it forms the foundation for beginning to describe the phenomenon and the associated psychosocial burdens that distance caregivers are struggling with. With the growing population of distance caregivers, it is important for nurses to address these burdens. Interventions for clinical practice are recommended.

Lack of communication and control: experiences of distance caregivers of parents with advanced cancer.

To explore the new and complex phenomenon of distance caregiving in the advanced cancer population. Qualitative. A large comprehensive cancer center in the midwestern region of the United States. 14 distance caregivers of parents with advanced cancer. Patients with advanced lung, gastrointestinal, and gynecologic malignancies consented to have their distance caregiving adult children contacted to participate in the study. Responses to three open-ended questions guided the tape-recorded telephone interviews with the distance caregivers. Following transcription, content analysis with inductive coding was performed. Two major themes, communication and control, and five subthemes, benefits and burdens of distance caregiving, dealing with uncertainty, direct action through information seeking, protecting, and staying connected, emerged from the data. Distance caregivers experience some of the same stressors that local caregivers of patients with cancer experience. In addition, they have unique psychosocial needs related to the burden of geographic distance. Distance caregivers could benefit from nursing interventions targeted at their unique needs. Innovative interventions using Web-based computer technology for improved communication, as well as supportive care interventions, may be helpful.

Long Distance Caregiving: An Evaluative Review of the Literature

A comprehensive and evaluative review of empirical research published between 2000 and 2010 specific to long distance caregiving is provided to identify what is known about this subgroup of caregivers and to identify gaps in knowledge. We searched peer-reviewed journals included in the following databases: Academic Search Premier (EBSCO), PROQuest Direct, Social Work Abstracts, CINAHL, MEDLINE, and PsychInfo. Searches were restricted to English language publications between 2000 and 2010. Search terms included: ‘review + caregiving + dementia’, ‘meta-analyses + caregiving + dementia,’ ‘caregiving + dementia + not institutional,’ ‘informal + caregiving,’ ‘family + caregiving’, ‘caregiving + technology’. Any searches including the term ‘dementia’ were repeated without that term. These same searches were repeated with the term ‘distance’ added to each. Empirical research specific to long distance caregiving is reviewed in detail. A brief review is provided of other closely related research. Long distance caregivers report being heavily involved in the care of their family member, regardless of distance and surprisingly, are often the only or primary caregiver. The specific needs for future research to inform best practice that goes beyond description of this important subgroup of caregivers is discussed.

Long Distance Caregivers

A long distance caregiver program was developed by the Alzheimer's Association of Los Angeles to provide services to caregivers living at a distance from Los Angeles. Data on demographic characteristics and service use were compared between 90 long distance and 187 local caregivers. Similar to local caregiving families, the most frequently used services by long distance families included written materials, the website, and the telephone helpline. Satisfaction with services was high. Open-ended responses provided further information on unmet service needs and barriers. Results demonstrate the feasibility of a program to provide family consultation for long distance caregivers of a relative with dementia. Future work needs to focus on assisting long distance caregivers with family disagreements about care and long distance care recipients who live alone.