Distance Caregiving Research Articles

A RECOMMENDATION FOR A UNIFORM DEFINITION OF DISTANCE CAREGIVING: A SCOPING REVIEW

Abstract Distance caregiving has increasingly attracted the attention of the gerontological research community. This indicates the importance of this caregiving arrangement in the face of progressive demographic change including fewer and fewer individuals providing local care. There have been attempts to define distance caregiving for more than two decades. The literature focuses predominantly on North America and Great Britain (e.g. Cagle & Munn, 2012; Franke et al., 2019). Although Cagle and Munn defined distance caregiving broadly, recent literature continues to focus on individual aspects, such as distance or time. Thus, future research on distance caregiving may benefit from using a uniform definition to compare findings across studies. Accordingly, we reviewed the literature of the last five years by means of a scoping review in 13 English and German databases. Following the systematic review on distance caregiving by Franke et al., we used May 2019 as the starting point of our search. Two independent raters classified the articles using prespecified inclusion and exclusion criteria. We identified a total of N=14,546 articles. After removal of duplicates, and title and abstract screening, we identified a total of n=59 articles for full text screening. We found the broad definition of distance caregiving by Cagle and Munn in 26 articles. The remaining articles referred to aspects like distance in miles or kilometers, time required, or other circumstances. In sum, our findings indicate that gerontological research on distance caregiving does not always build on existing knowledge.

Remote Technologies and Filial Obligations at a Distance: New Opportunities and Ethical Challenges

The coupled growth of population aging and international migration warrants attention on the methods and solutions available to adult children living overseas to provide distance caregiving for their aging parents. Despite living apart from their parents, the transnational informal care literature has indicated that first-generation immigrants remain committed to carry out their filial caregiving obligations in extensive and creative ways. With functions to remotely access health information enabled by emergency, wearable, motion, and video sensors, remote monitoring technologies (RMTs) may thus also allow these international migrants to be alerted in sudden changes and remain informed of their parent’s state of health. As technological solutions for caregiving, RMTs could allow independent living for older persons while any unusual deviations from normal health patterns are detected and appropriately supported. With a vignette of a distance care arrangement, we engage with concepts such as filial piety, in-absentia caregiving distress, and the social exchange theory, as well as the upholding of shifting cultural ideals to illustrate the complex dynamic of the satisfaction and quality of the informal caregiving relationship. This paper extends the traditional ethical issues in technology-aided caregiving, such as autonomy, privacy, and justice, to be considered within the context of distance care. We also posit newer ethical considerations such as consent in power imbalances, harm to caregivers, and stigma. These known and new ethical issues aim to encourage further ethically conscious design and use of RMTs to support distance care for older persons.

Close but Not Close Enough: How Distance Caregiving is Associated with Hospice Family Caregiver Hospice Communication Experiences

ABSTRACT Half of hospice family caregivers report having unmet information needs, which can contribute to poor pain and symptom management, emergency department use, and hospice disenrollment for care-recipients and to caregiver strain and stress. Effective communication between hospice teams and family caregivers is critical yet communication inadequacies persist. Despite the growing prevalence of distance caregiving, including in hospice care, and the relationship between caregiver proximity and communication effectiveness, little is known about how caregiver proximity is associated with caregiver perceptions of hospice communication. In this secondary analysis of quantitative data from two multisite randomized clinical trials (NCT03712410 and NCT02929108) for hospice family caregivers (N = 525), multivariate linear models with demographic and contextual controls were used to analyze caregivers’ perceptions of caregiver-centered communication with hospice providers based on caregiver proximity to the hospice care-recipient. In multivariate models, “local” hospice family caregivers who lived within 1 hour of the hospice care-recipient reported less effective communication with the hospice team than co-residing caregivers; and older caregivers rated communication more favorably than younger caregivers. To improve communication and collaboration between hospice teams and caregivers, regardless of proximity, distance communication training for hospice teams and interventions such as telehealth communication and virtual tools that enable triadic collaboration are recommended. Research is needed to understand why local caregivers, specifically, perceive communication quality less favorably and how hospice teams can better meet local and distance caregiver communication needs.

CaRegiving frOm A Distance (ROAD): home care in the future—flexible and nearby – multimethod qualitative study protocol

IntroductionDemographic change in Germany is accompanied by a birth rate deficit and increasing life expectancy. One effect of the ageing population is an increase in people needing care, most of...

Transnationalism and Caring for Migrant Families with Young Children

Abstract Background Migrant families’ transnational ties may contribute to their hardships and/or may be a source of resiliency. A care approach that acknowledges these transnational ties may foster a positive identity and give coherence to experiences. We conducted an integrative review to determine if there is evidence that health and social services supporting migrant families with young children consider transnational ties during care with these families. Methods We searched 15 databases to identify relevant literature including empirical research and discussion papers reporting on a health or social program, service, intervention or care experience of migrant families during early childhood (pregnancy to age five) in a Western country (i.e., Canada, US, Europe or Australia). Information regarding if and how the intervention/service/program/care addressed transnationalism, were extracted and synthesized. Results Over 34,000 records were screened; 296 articles met inclusion criteria. Most literature was from the US. Care, programs and interventions examined included prenatal classes, doula support, maternity care, postpartum home visits, breastfeeding support, nutrition and feeding counseling, and parenting and early childcare programs. There is evidence that care-providers empathize and offer information on family reunification processes for families dealing with separation from loved ones and are open to and accommodate cultural traditions (e.g., feeding and parenting practices) originating from the home country; otherwise there is little evidence that transnational ties are addressed during care. Conclusions Significant knowledge gaps remain regarding whether and how care-providers’ take into account transnational ties, including distance care-giving of children or elderly, use of health services abroad, and receipt of advice and support from family back home, which may affect their relationships with families and/or the effectiveness of their interventions. Key messages Significant knowledge gaps remain regarding whether and how care-providers’ take into account transnational ties in early chilldhood care. More research is needed on transnationalism and the health and social care of migrant families.

Das Potenzial neuer Technologien zur Unterstützung von Pflege über eine räumliche Distanz - Literaturstand und qualitative Befunde.

The potential of technological assistance to support distance caregiving - literature review and empirical results Abstract.Background: Due to demographic change, increasing labour mobility and changing family patterns, social relationships often exist over long distances. Supporting relatives over a distance is therefore a highly topical issue but still little discussed, also in Germany and Switzerland. Aim: The project "DiCa" (2016 - 2019) with an interdisciplinary research team from Germany (EH Ludwigsburg) and Switzerland (Careum School of Health, Zurich) aims to investigate different dimensions of "Distance Caregiving". This paper deals with the possible use of new technologies to support these care arrangements. Methods: Based on a literature review, qualitative interviews were conducted with "Distance Carers" and partner companies in Germany to investigate the use of new technologies in the context of "Distance Caregiving". Results: There are initial approaches concerning technical solutions in home care and in companies. So far communication options via telephone and smartphone and flexible working time and workplace regulations have played an important role. However, the potential of new technologies does not seem to be fully explored. Conclusions: In order to make the most of the various possibilities of innovative technologies in the context of "Distance Caregiving" for those affected but also for companies, well-researched information and independent advice and counseling are required for all parties involved in the care process.

„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.

Pflege über räumliche Distanz hinweg

The support of relatives living far away in terms of distance caregiving between children and their parents has gained in importance in Europe. At the same time, little is known about these care arrangements based on representative European survey data. This article is concerned with the following questions: which statements are possible in Europe about the prevalence of persons caring for at least one parent from ageographical distance? Which forms of support are provided and which other specific socioeconomic and health-related aspects characterize these care situations? In this respect special attention is paid to differences to relatives who provide help close to their parents who are in need of care. Data from the Survey of Health, Ageing and Retirement in Europe (SHARE) from the sixth wave of the survey in 2015 were used to perform a descriptive analysis and multivariate logistic regression. The analysis showed that distance caregiving is more than amarginal phenomenon in Europe with a prevalence of 11% for a relatively close terminology (over 100 km distance between locations) and 23% for a broader terminology (over 25 km); however, the various countries are very different in terms of prevalence. The findings also point to some significant differences in terms of resources, care tasks and quality of life compared to caregivers in the same household. In light of these dynamically developing distance caregiving arrangements, this article can provide further discussion, critical reflection, and advancement to the operationalization of informal care.

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.

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.

An intergroup communication approach to understanding the function of compliance, outgroup typicality, and honest explanations in distant caregiving relationships: Validation of a health-care communication scale

This study examines distant caregiving relationships to achieve a better understanding of the function of compliance, outgroup typicality, and honest explanations from an intergroup communication perspective. With more families living at a distance due to our increasingly mobile society, long-distance caregiving (LDC) is a unique and growing caregiving situation that caregivers must face. LDC differs for caregivers and patients in close geographic proximity due to lack of availability, lack of intimate understanding of the caregiving needs at hand, and unknown financial burdens. As family residential distance increases, additional and unknown stressors are placed on individuals who provide distant care to an aging adult; however, little is known about different accommodation types used in situations of close-proximity as compared with distance caregiving situations. A sample of 130 self-identified distant family caregivers completed an online survey about their communication with their care recipient. This study is one of the first known to examine communication in the distant family caregiving context, and it offers possibilities for future research on communication barriers and health issues that impact this growing population.

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.

Communication in the context of long-distance family caregiving: An integrated review and practical applications

ObjectiveUnderstanding how geographic distance impacts how individuals communicatively negotiate family caregiving is important for a number of reasons. Though long-distance caregiving (LDC) is a growing phenomenon with serious relational and health implications, this topic has yet to be approached from a communication perspective. In this review, LDC is thus considered as a communication context to offer caregiving scholars practical applications for contributing to this emerging research area. MethodsReview of the literature from 1999 to 2009 that studied aspects of distance caregiving communication obtained through searching Academic Search Premier, EBSCO, Communication and Mass Media Complete, PsycArticles, PsycInfo, PubMed/Medline, and Health Source: Nursing/Academic Edition online databases. ResultsEight published original research studies were included in the review. ConclusionThe extent to which LDC communication is studied by caregiving researchers has the potential to provide helpful guidance for distant caregivers and care recipients to achieve successful health and relational outcomes. Practice implicationsUpon reviewing distance caregiving communication research findings, four applications are discussed: (1) defining distance as a subjective experience; (2) encouraging the use of mediated communication in LDC; and examining (3) interpersonal conflict and (4) topic avoidance processes in the LDC context.

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.

Needs of distance caregiving of cognitively impaired elders living alone at home: Implications for technology-based interventions

Needs of distance caregiving of cognitively impaired elders living alone at home: Implications for technology-based interventions