Perceptions of Technology Experiences and Development among Family Caregivers and Technology Researchers: A Qualitative Study (Preprint)

2020 ◽  
Author(s):  
Chen Xiong ◽  
Andrea D'Souza ◽  
Graziella El-Khechen-Richandi ◽  
Alex Mihailidis ◽  
Jill I Cameron ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Technology Use ◽  
Informal Caregivers ◽  
Care Recipient ◽  
Main Theme ◽  
Initial Development ◽  
Adoption Of Technology ◽  
Health Technologies ◽  
Holistic Understanding ◽  
Technology Perceptions

BACKGROUND Caregiving is highly stressful and associated with poor mental and physical health. Technologies, including mobile and e-health applications, have been developed to address caregiver needs. Yet, there remains a paucity of research that examines the technology perceptions of informal caregivers, especially from a sex, gender and diversity perspective. OBJECTIVE To address this gap and inform the development of future caregiving technologies, this study aimed to (1) examine how family caregivers perceive the use of technology in assisting with their caregiving routines, (2) explore the sex, gender and diversity influences on these perceptions and (3) understand how these perceptions and needs are reflected within the current technology development process. METHODS Semi-structured interviews were conducted with 16 informal caregivers of individuals with a range of chronic medical conditions and eight technology researchers involved in caregiving technology projects. RESULTS Three main themes with subthemes were developed: the first main theme is Caregivers see a need for technology in their lives and consists of three subthemes: Caregiving is a challenging endeavor, Technology is multi-faceted, and Caregiver preferences mediate technology use. The second main theme is Relationships play a vital role in mediating technology uptake and comprises two subthemes: The caregiver-care recipient dynamic shapes technology perceptions, and Caregivers rely on external networks for technology information. Finally, the third main theme is Barriers are present in the use and adoption of technology and comprises two subthemes: Technology may not be compatible with personal values and abilities, and Technology that is not tailored towards caregivers lacks adoption. CONCLUSIONS The findings bring to light the multi-faceted role technology can play in aiding caregiving, while at the same time drawing attention to the pitfalls and drawbacks of these technologies perceived by caregivers. Bringing in technology researchers to the study provides a more holistic understanding of technology in caregiving from its initial development to eventual uptake by caregivers.

scholarly journals TECHNOLOGY USE IN RURAL DEMENTIA CARE: PERSPECTIVES FROM FAMILY CAREGIVERS, PWD, AND SERVICE PROFESSIONALS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S860-S860
Author(s):  
Lucas R Prieto ◽  
Fei Sun ◽  
Wenwu Zhang ◽  
Anastasia Kononova
Keyword(s):  
Rural Communities ◽  
Family Caregivers ◽  
Rural Areas ◽  
Technology Use ◽  
Public Libraries ◽  
Dementia Care ◽  
Care Recipient ◽  
Technology Literacy ◽  
Grocery Stores ◽  
Use Of Technology

Abstract Purpose: The use of technology in dementia care has shown promising benefits for both people living with dementia and their family caregivers, however, little is known regarding how technology is used among families affected by dementia who reside in rural communities. The purpose of this study was to explore technology use and barriers among people living with dementia, family caregivers, and service professionals who live in rural areas of Michigan. Methods: This study was based upon focus group data from six groups of family caregivers (n=32); one group of people living with early stages of dementia (n=4), and one group of service professionals (n=4) recruited from rural counties in Michigan. Results: Technology use included assisting caregiving tasks (e.g., monitoring a wandering care recipient), facilitating treatment (e.g., access treatment through telemedicine), and providing social connection and support. Themes related to strategies included addressing educational needs of young older and old-older caregivers, providing step-by-step toolkits, and collaborating with multi-sectors (e.g., public libraries, grocery stores, and churches). Discussion: Findings suggest a great need to facilitate technology literacy and competency for rural family caregivers to access caregiving resources. To effectively reach out to this population, technology methods such as local TV news network, radio, and newspaper are still beneficial. Health and social service professionals should consider collaborations with public service institutions (e.g. libraries) and faith-based organizations to include educational workshops about technology in their curriculum and training programs for dementia family caregivers.

scholarly journals The 2020 Portrait of American Caregivers

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 681-681
Author(s):  
Regina Shih
Keyword(s):  
Family Member ◽  
Family Caregivers ◽  
Care Recipient ◽  
Health Conditions ◽  
Complex Care ◽  
The Past ◽  
Care Recipients ◽  
The Us ◽  
National Alliance

Abstract The prevalence of caregiving for an adult or child with special needs has increased significantly in the past five years (from 18.2% to over 21.3%), driven by an increase in the prevalence of caring for a family member or friend aged 50 and older. At the same time, care recipients have greater health and functional needs that necessitate care from others in comparison to 2015. These new 2020 data from the Caregiving in the US Survey by the National Alliance for Caregiving suggests that not only are more American adults taking on the role of caregiver, but they are doing so for increasingly complex care situations. This paper addresses the prevalence of caregiving including the demographics of family caregivers, relationship between the caregiver and the care recipient, health conditions of the care recipient, and living situations of care recipients and their caregivers.

scholarly journals Evaluating the provision of Further Enabling Care at Home (FECH+) for informal caregivers of older adults discharged home from hospital: protocol for a multicentre randomised controlled trial

BMJ Open ◽  
2021 ◽  
Vol 11 (6) ◽  
pp. e046600
Author(s):  
Anne-Marie Hill ◽  
Rachael Moorin ◽  
Susan Slatyer ◽  
Christina Bryant ◽  
Keith Hill ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
Randomised Controlled Trial ◽  
Usual Care ◽  
Controlled Trial ◽  
Informal Caregivers ◽  
Care Recipient ◽  
Care At Home ◽  
Randomised Controlled

IntroductionThere are personal and societal benefits from caregiving; however, caregiving can jeopardise caregivers’ health. The Further Enabling Care at Home (FECH+) programme provides structured nurse support, through telephone outreach, to informal caregivers of older adults following discharge from acute hospital care to home. The trial aims to evaluate the efficacy of the FECH+ programme on caregivers’ health-related quality of life (HRQOL) after care recipients’ hospital discharge.Methods and analysisA multisite, parallel-group, randomised controlled trial with blinded baseline and outcome assessment and intention-to-treat analysis, adhering to Consolidated Standards of Reporting Trials guidelines will be conducted. Participants (N=925 dyads) comprising informal home caregiver (18 years or older) and care recipient (70 years or older) will be recruited when the care recipient is discharged from hospital. Caregivers of patients discharged from wards in three hospitals in Australia (one in Western Australia and two in Queensland) are eligible for inclusion. Participants will be randomly assigned to one of the two groups. The intervention group receive the FECH+ programme, which provides structured support and problem-solving for the caregiver after the care recipient’s discharge, in addition to usual care. The control group receives usual care. The programme is delivered by a registered nurse and comprises six 30–45 min telephone support sessions over 6 months. The primary outcome is caregivers’ HRQOL measured using the Assessment of Quality of Life—eight dimensions. Secondary outcomes include caregiver preparedness, strain and distress and use of healthcare services. Changes in HRQOL between groups will be compared using a mixed regression model that accounts for the correlation between repeated measurements.Ethics and disseminationParticipants will provide written informed consent. Ethics approvals have been obtained from Sir Charles Gairdner and Osborne Park Health Care Group, Curtin University, Griffith University, Gold Coast Health Service and government health data linkage services. Findings will be disseminated through presentations, peer-reviewed journals and conferences.Trial registration numberACTRN12620000060943.

Technological Change and the International System

2021 ◽  
Vol 73 (3) ◽  
pp. 545-589 ◽  
Author(s):  
Helen V. Milner ◽  
Sondre Ulvund Solstad
Keyword(s):  
Technology Adoption ◽  
Technological Change ◽  
Technology Use ◽  
New Technologies ◽  
Causal Effect ◽  
International System ◽  
New Technology ◽  
World Politics ◽  
Adoption Of Technology ◽  
Adoption Of New Technology

ABSTRACTDo world politics affect the adoption of new technology? States overwhelmingly rely on technology invented abroad, and their differential intensity of technology use accounts for many of their differences in economic development. Much of the literature on technology adoption focuses on domestic conditions. The authors argue instead that the structure of the international system is critical because it affects the level of competition among states, which in turn affects leaders’ willingness to enact policies that speed technology adoption. Countries adopt new technology as they seek to avoid being vulnerable to attack or coercion by other countries. By systematically examining states’ adoption of technology over the past two hundred years, the authors find that countries adopt new technologies faster when the international system is less concentrated, that changes in systemic concentration have a temporally causal effect on technology adoption, and that government policies to promote technology adoption are related to concerns about rising international competition. A competitive international system is an important incentive for technological change and may underlie global technology waves.

scholarly journals Positive Aspects of Caregiving Among Family Caregivers of Individuals With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 358-359
Author(s):  
Mary Grace Asirot ◽  
Anna Papazyan ◽  
Yeonsu Song
Keyword(s):  
Mental Health ◽  
Sleep Quality ◽  
Family Caregivers ◽  
Care Recipient ◽  
Related Factors ◽  
Negative Experience ◽  
Care Recipients ◽  
Positive Aspects Of Caregiving ◽  
Positive Caregiving ◽  
And Behavior

Abstract Traditionally, caregiving for individuals with dementia has been viewed as a negative experience. Understanding positive aspect of caregiving and related factors is important to improve health among family caregivers. We analyzed baseline data from an ongoing dyadic sleep education trial for individuals with dementia and their caregivers (N=21 dyads; mean age 70.8± 11.1 for caregivers, 80.5± 8.3 for care-recipients). The Positive Aspects of Caregiving (PAC 9-item) was used to assess subjective satisfaction with caregiving. Other measures included Zarit Burden Interview (ZBI), SF-12 Health Survey (SF-12v2), Revised Memory and Behavior Problems Checklist (RMBPC), and Pittsburgh Sleep Quality Index (PSQI). Pearson correlations and t-tests were calculated for analyses. Caregivers most frequently endorsed that caregiving enabled them to appreciate life more (n=16 agreed a lot). Caregivers who began providing care within the first few months of the care-recipient needing care (n=16) had greater positive aspects of caregiving than those who started providing care sometime later (n=5) (36.37±7.33 versus 25.8±8.29, p=0.01). Caregivers with higher PAC scores had lower ZBI score (r=-0.49, p=0.02), better mental health on the SF-12v2 (r=0.53, p=0.01), less distress related to care-recipient behaviors on the RMBPC (r=-0.50, p=0.02), and lower PSQI subscale (perceived sleep quality) score (r= -0.46, p=0.04). Findings suggest that higher positive caregiving experience was associated with better mental health and sleep quality, and less burden and distress from the care-recipients behaviors. More research is needed to better understand this relationship and to determine possible interventions to increase positive aspects of caregiving.

Female lens in urban mobility: technology-use behavior and individual differences

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Marcia Cassitas Hino ◽  
Maria Alexandra Cunha
Keyword(s):  
Individual Differences ◽  
Technology Use ◽  
Gender Segregation ◽  
Individual Characteristics ◽  
Urban Transport ◽  
Urban Mobility ◽  
Adoption Of Technology ◽  
Content Type ◽  
Mobility Service ◽  
Use Behavior

PurposeThe purpose of this study is to investigate how women's individual differences influence urban mobility service technology-use behavior. The reduction in urban mobility is a major problem in countries with emerging economies, thus affecting both the economy and quality of life.Design/methodology/approachThe theoretical approach follows the individual differences theory of gender and information technology (IDTGIT). This research combines structured interviews to understand how the use of urban mobility service technology in daily routines is perceived, questionnaires to map individual differences and user demonstrations to capture how participants used mobility applications on their cell phones.FindingsThis study shows the influence of individual characteristics on the use of mobile apps and presents five behavioral profiles of women. This article goes beyond gender segregation to also show intragender differences.Practical implicationsThis study explains women's behavior regarding urban mobility mobile applications through the generation of five profiles. These profiles can inform public policy managers on urban mobility and provide opportunities for improving the services of companies in the urban transport service chain.Originality/valueWith an intragender perspective, this study identifies the influence of individual characteristics on the use of technology and suggests that contextual identity, a novel dimension of characteristics that influence technology-use behavior, is relevant in the adoption of technology by its users.

P12.06 Unmet needs and wish for support of informal caregivers of primary brain tumour patients

2021 ◽  
Vol 23 (Supplement_2) ◽  
pp. ii31-ii32
Author(s):  
L Pointon ◽  
R Grant ◽  
S Peoples ◽  
S Erridge ◽  
P Sherwood ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Disease Progression ◽  
Family Caregivers ◽  
Brain Tumour ◽  
Unmet Needs ◽  
Emotional Health ◽  
Informal Caregivers ◽  
Family Members ◽  
Primary Brain Tumour ◽  
Caregiver Needs

Abstract BACKGROUND Most primary brain tumour patients rely on informal caregivers (i.e. family members or friends) for practical and emotional support. While caregiving can be rewarding, it also commonly leads to significant burden. In developing support for caregivers, it is vital to distinguish between caregivers’ unmet needs, and their actual wish for support to resolve unmet needs. We aimed to 1) identify the presence and magnitude of unmet needs; 2) examine associations between unmet needs and desire for support; 3) evaluate perceived usefulness of caregiver needs screening in clinical practice. MATERIAL AND METHODS Family caregivers of patients with primary brain tumours were recruited and asked to complete an adapted version of the Caregiver Needs Screen (CNS). This covered the level of distress resulting from 33 common issues in neuro-oncology caregiving (scale 0–10), and wish for information or support for any issue (yes/no). In addition, participants were asked to rank (0–7) their experience of using the CNS based on items covering ‘ease of us’, ‘usefulness’ and ‘satisfaction’. Descriptive and correlational analyses were applied. RESULTS Caregivers (N=79) reported between 1–33 unmet needs (M=17.20, sd=7.98) but did not always wish for support for each need (range 0–28, M=4.71, sd=6.63). Most distressing items were patient’s fatigue (M=5.58), recognising signs of disease progression (M=5.23), changes in patients’ thinking or behaviour (M=5.04), patient distress or sadness (M=4.68), and changes in caregivers’ own emotional health (M=4.44). A weak correlation was found between the total number of unmet needs and the desire for support (r=0.296, p=0.014). Caregivers most often desired support with recognising disease progression (N=24), managing medications and side-effects (N=18), and least often with managing spiritual issues (N=0), communication with (grand)children (N=2) and communication with family members and friends (N=3). Caregivers evaluated the CNS tool positively (mean item scores ranging 4.19–6.21 out of 7). CONCLUSION Family caregivers of brain tumour patients experience distress resulting from many neuro-oncology specific needs, but this is not directly related to a wish for support or information. Caregiver needs screening could be useful to tailor support or information to suit caregivers’ preferences in clinical practice.

The Work Caregivers Do

2020 ◽  
pp. 19-37
Author(s):  
Sherry N. Mong
Keyword(s):  
Family Caregivers ◽  
Wound Care ◽  
Medication Administration ◽  
Care Recipient ◽  
Positive Pressure ◽  
Medical Procedures ◽  
Nasogastric Tubes ◽  
Routine Basis ◽  
Gastrostomy Tubes ◽  
Anxiety And Fear

This chapter discusses the type of work caregivers do. Among the medical procedures that caregivers do that are mentioned in the chapter are: intravenous therapies (IVs), total parenteral nutrition (TPN), gastrostomy tubes (G-tubes) and nasogastric tubes (NG-tubes), urinary catheters, external catheters, intermittent catheters, wound care, ostomy, bowel management programs, respiratory procedures, tracheostomy, and positive-pressure ventilators. The chapter discusses caregiver insights and the dilemmas they face in having to provide skilled care. In general, many of the medical procedures are not only difficult to master but also cause trepidation because of the possible complications that can result if the caregiver makes a mistake. Several caregivers who gave IVs said they worried about contaminating the IV site or shooting air in the line. In hospitals, problems with medication administration are a leading cause of death, and so are infections that occur when a wound is not correctly dressed or an IV carefully accessed. Yet family caregivers are asked to do these activities on a routine basis — over a period of months or even years. The worry about complications is well founded, as they can have deleterious consequences. Coupled with issues of anxiety and fear of causing harm to the care recipient are issues of manual dexterity and “getting the feel” of the procedures. Not only do caregivers have to overcome fear, get the feel of procedures, and make sure they are done correctly, but they also have to get past the personal discomfort they may have regarding the intimate nature of the work they are asked to do.

scholarly journals WHAT FAMILY CAREGIVERS THINK AND FEEL WHEN PROXY ASSESSING FROM DIFFERENT PERSPECTIVES

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S977-S977 ◽  
Author(s):  
Patricia Egan
Keyword(s):  
Quality Of Life ◽  
Family Caregivers ◽  
Emotional Experience ◽  
Assessment Process ◽  
Care Recipient ◽  
Care Recipients ◽  
Self Assessments ◽  
Affective Experiences ◽  
Service Agencies

Abstract Dementia family caregivers are routinely enlisted as proxy assessors of care recipient quality of life (QOL). Proxy assessment is not ideal because proxy assessments differ systematically from self-assessments and the assessment process can elicit negative affect from family caregivers. Prompting adoption of the care recipient’s perspective can enhance assessment congruence and may improve the emotional experience for assessors. This study explored family caregivers’ cognitive and affective experiences during QOL proxy assessments made from both their own and care recipients’ perspectives. Thirty-six dementia family caregivers were recruited from senior service agencies. Subjects completed the Quality of Life-Alzheimer Disease (QOL-AD), Caregiver Version using standard instructions to assess QOL across thirteen domains of their care recipient’s life without specifying the perspective to be used. Subjects were next asked to repeat the QOL-AD with instructions to adopt the perspective of their care recipient, as they imagined it to be. Subjects were then interviewed about what they thought and felt during each proxy assessment experience. Content analysis indicated that spontaneous perspective shifts and response shifts frequently occurred. Most subjects (91.7%) reported changed thinking for one or more QOL-AD domains when they were prompted to switch perspectives. Over half (61.12%) reported changed affect when switching perspectives and 90.9% of those experiencing changed affect reported affective improvement. Little or no affective change was reported by 38.89%. Findings suggest awareness of perspective can enhance clinical interpretation of proxy assessed QOL and can inform clinical response to dementia family caregivers who experience negative emotions while proxy reporting QOL.

scholarly journals Informal Caregivers’ Well-Being at the Transition to Caregiving

2020 ◽  
pp. 003435522096218
Author(s):  
Natalie A. Williams ◽  
Holly Hatton-Bowers ◽  
Kara L. Kohel ◽  
Shruti Pillai ◽  
Judith M. Burnfield
Keyword(s):  
Mental Health ◽  
Mindfulness Meditation ◽  
Readiness To Change ◽  
Informal Caregivers ◽  
Well Being ◽  
Screening Tools ◽  
Care Recipient ◽  
Physical And Mental Health ◽  
Health Habits ◽  
Rehabilitation Hospital

The aim of this study was to describe the psychological and physical health needs of informal caregivers in a rehabilitation hospital and explore differences related to informal caregiver and care recipient characteristics. Readiness to engage in health promotion and perspectives on mindfulness meditation were assessed. Informal caregivers ( N = 33) to patients receiving inpatient or outpatient treatment completed the Multidimensional Health Profile screening tools. Readiness to change was assessed using the readiness ruler approach. Almost half of participants (45.5%) had a chronic illness and 18.2% reported that it interferes with daily functioning. Low Positive Health Habits were reported by 43% of participants, and Negative Health Habits were reported by 25%. A subgroup (15%–20%) reported both physical and mental health concerns. A majority of participants indicated it was both very important for them to improve their physical and mental health and felt very confident they could do so. Receptivity to mindfulness meditation was high, with 72.7% reporting an interest. Comprehensive screening and counseling interventions to address the physical and mental health of informal caregivers in physical rehabilitation hospital settings are needed, and information gained from screening could be addressed in interventions delivered by systems-oriented rehabilitation counselors. A mindfulness meditation intervention may be a useful strategy for promoting well-being in this population.

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