scholarly journals How Is the Caregiver Doing? Capturing Caregivers’ Experiences With a Reflective Toolkit

10.2196/13688 ◽  
2019 ◽  
Vol 6 (5) ◽  
pp. e13688
Author(s):  
Lilian Bosch ◽  
Marije Kanis ◽  
Julia Dunn ◽  
Kearsley A Stewart ◽  
Ben Kröse

BackgroundThis paper describes the Co-Care-KIT, a reflective toolkit designed to provide insights into the diverse experiences of home-based informal caregivers during the delivery of care to a relative or loved one.ObjectiveThe aim of this study was to evaluate the toolkit, including a custom-designed journal, tools for photography-based experience sampling, and heart rate tracking, which enables caregivers to collect and reflect on their positive and negative daily experiences in situ.MethodsA 2-week field study with informal caregivers (N=7) was conducted to evaluate the Co-Care-KIT and to capture their daily personal emotional experiences. The collected data samples were analyzed and used for collaborative dialogue between the researcher and caregiver.ResultsThe results suggest that the toolkit (1) increased caregivers’ awareness of their own well-being through in situ reflection on their experiences; (2) empowered caregivers to share their identities and experiences as a caregiver within their social networks; (3) enabled the capturing of particularly positive experiences; and (4) provided caregivers reassurance with regards to their own mental health.ConclusionBy enabling capturing and collaborative reflection, the kit helped to gain a new understanding of caregivers’ day-to-day needs and emotional experiences.

Author(s):  
Linda A. Wardlaw

Friends, partners, and relatives of persons with HIV/AIDS face significant challenges in providing for the emotional, physical, and practical needs of their loved ones. Moreover, the responsibilities of caregiving often disrupt work life, finances, living arrangements, and relationships with family and friends as well as tax the emotional and physical well-being of the caregiver. The author reports on the experiences of 642 informal caregivers to persons with AIDS in order to identify the type of care provided; the physical, emotional, and financial costs of caring for a loved one with AIDS; the resources available to assist caregivers; and the benefits of providing such care.


GeroPsych ◽  
2013 ◽  
Vol 26 (3) ◽  
pp. 185-199 ◽  
Author(s):  
Christina Röcke ◽  
Annette Brose

Whereas subjective well-being remains relatively stable across adulthood, emotional experiences show remarkable short-term variability, with younger and older adults differing in both amount and correlates. Repeatedly assessed affect data captures both the dynamics and stability as well as stabilization that may indicate emotion-regulatory processes. The article reviews (1) research approaches to intraindividual affect variability, (2) functional implications of affect variability, and (3) age differences in affect variability. Based on this review, we discuss how the broader literature on emotional aging can be better integrated with theories and concepts of intraindividual affect variability by using appropriate methodological approaches. Finally, we show how a better understanding of affect variability and its underlying processes could contribute to the long-term stabilization of well-being in old age.


2019 ◽  
Vol 13 (3) ◽  
pp. 244-258
Author(s):  
Klaus R. Scherer ◽  
Stéphanie Trznadel ◽  
Bernardino Fantini ◽  
Eduardo Coutinho

2018 ◽  
pp. 60-67
Author(s):  
Henrika Pihlajaniemi ◽  
Anna Luusua ◽  
Eveliina Juntunen

This paper presents the evaluation of usersХ experiences in three intelligent lighting pilots in Finland. Two of the case studies are related to the use of intelligent lighting in different kinds of traffic areas, having emphasis on aspects of visibility, traffic and movement safety, and sense of security. The last case study presents a more complex view to the experience of intelligent lighting in smart city contexts. The evaluation methods, tailored to each pilot context, include questionnaires, an urban dashboard, in-situ interviews and observations, evaluation probes, and system data analyses. The applicability of the selected and tested methods is discussed reflecting the process and achieved results.


2019 ◽  
Author(s):  
Nikki Theofanopoulou ◽  
Katherine Isbister ◽  
Julian Edbrooke-Childs ◽  
Petr Slovák

BACKGROUND A common challenge within psychiatry and prevention science more broadly is the lack of effective, engaging, and scale-able mechanisms to deliver psycho-social interventions for children, especially beyond in-person therapeutic or school-based contexts. Although digital technology has the potential to address these issues, existing research on technology-enabled interventions for families remains limited. OBJECTIVE The aim of this pilot study was to examine the feasibility of in-situ deployments of a low-cost, bespoke prototype, which has been designed to support children’s in-the-moment emotion regulation efforts. This prototype instantiates a novel intervention model that aims to address the existing limitations by delivering the intervention through an interactive object (a ‘smart toy’) sent home with the child, without any prior training necessary for either the child or their carer. This pilot study examined (i) engagement and acceptability of the device in the homes during 1 week deployments; and (ii) qualitative indicators of emotion regulation effects, as reported by parents and children. METHODS In this qualitative study, ten families (altogether 11 children aged 6-10 years) were recruited from three under-privileged communities in the UK. The RA visited participants in their homes to give children the ‘smart toy’ and conduct a semi-structured interview with at least one parent from each family. Children were given the prototype, a discovery book, and a simple digital camera to keep at home for 7-8 days, after which we interviewed each child and their parent about their experience. Thematic analysis guided the identification and organisation of common themes and patterns across the dataset. In addition, the prototypes automatically logged every interaction with the toy throughout the week-long deployments. RESULTS Across all 10 families, parents and children reported that the ‘smart toy’ was incorporated into children’s emotion regulation practices and engaged with naturally in moments children wanted to relax or calm down. Data suggests that children interacted with the toy throughout the duration of the deployment, found the experience enjoyable, and all requested to keep the toy longer. Child emotional connection to the toy—caring for its ‘well-being’—appears to have driven this strong engagement. Parents reported satisfaction with and acceptability of the toy. CONCLUSIONS This is the first known study investigation of the use of object-enabled intervention delivery to support emotion regulation in-situ. The strong engagement and qualitative indications of effects are promising – children were able to use the prototype without any training and incorporated it into their emotion regulation practices during daily challenges. Future work is needed to extend this indicative data with efficacy studies examining the psychological efficacy of the proposed intervention. More broadly, our findings suggest the potential of a technology-enabled shift in how prevention interventions are designed and delivered: empowering children and parents through ‘child-led, situated interventions’, where participants learn through actionable support directly within family life, as opposed to didactic in-person workshops and a subsequent skills application.


2021 ◽  
pp. 089011712110244
Author(s):  
Kristi Rahrig Jenkins ◽  
Emily Stiehl ◽  
Bruce W. Sherman ◽  
Susan L. Bales

Purpose: This study examines the association between sources of stress and perceptions of organizational and supervisor support for health and well-being. Design: Retrospective, cross-sectional analysis. Setting: Large university in the mid-western United States. Sample: This study focused on university employees with complete data for all variables (organizational support/N = 19,536; supervisor support/N = 20,287). Measures: 2019 socioeconomic and demographic characteristics, count of chronic conditions, sources of stress and perceptions of organizational and supervisor support. Analysis: For the multivariate analyzes, linear regression models were analyzed separately by wage bands (low ≤$46,100; middle >$46,100-$62,800; high >$62,800). Results: For all employees, workplace stressors, including problematic relationships at work and heavy job responsibilities, were negatively associated with perceptions of supervisor and organizational support. In comparison, the most salient home-based stressors were negatively associated with perceptions of supervisor support for the lowest-wage band (the death of a loved one, b = −0.13) and middle-wage band (personal illness or injury, b = −0.09), while the one for the highest-wage band (illness or injury of a loved one, b = 0.07) was positively associated with perceptions of supervisor support. Conclusion: Stressful job responsibilities and work relationships are associated with lower perceptions of supervisor and organizational support for health and well-being across all wage bands. Favorable perceived support for personal stressors only among high wage earning employees may suggest a need for improved equity of perceived support for these stressors among lower wage workers.


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Chiaki Ura ◽  
Tsuyoshi Okamura ◽  
Sachiko Yamazaki ◽  
Masaya Shimmei ◽  
Keisuke Torishima ◽  
...  

Abstract Background Green care farms, which offer care for people with dementia in a farm setting, have been emerging in the Netherlands. The aim of this study was to 1) implement green care farms which use rice farming in Japan, 2) explore the positive experiences of rice farming care, and 3) compare the effect of rice farming care to that of usual care on well-being and cognitive ability. Methods We developed a new method of green care farm in Japan which uses rice farming, a farming that is practiced all over East Asia. The participants were 15 people with dementia (mean age = 75.6 ± 9.8 years) who participated in a one-hour rice farming care program once a week for 25 weeks. We also collected qualitative data on the positive experiences of study participants after the program. As a reference data, we also collected the corresponding data of the usual care group which included 14 people with dementia (mean age = 79.9 ± 5.8 years) who were attending the near-by day-care. Results The mean participation rate on the rice farming care group was 72.1%. After the intervention, participants reported experiencing enjoyment and connection during the program. It also changed the staff’s view on dementia. The green care farm group showed a significant improvement in well-being but no significant difference in cognitive function compared to the usual care group. Conclusions Green care farms by using rice farming is promising care method which is evidence-based, empowerment-oriented, strengths-based, community-based dementia service, which also delivers meaningful experience for the people with dementia in East Asia. Trial registration UMIN, UMIN000025020, Registered 1 April 2017.


2021 ◽  
Vol 7 ◽  
pp. 233372142110201
Author(s):  
M. Courtney Hughes ◽  
Yujun Liu ◽  
Abby Baumbach

Background: In December 2019, the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), or COVID-19, raised worldwide concern. Since then, the COVID-19 pandemic has negatively influenced health and wellness across the globe and caused nearly three million deaths. This study focuses on informal caregivers of people with dementia, a disease that affects about 50 million older adults worldwide and requires much caregiving support. Objective: Examine the current literature on the impact of COVID-19 on the health and well-being of informal caregivers for people with dementia. Method: This rapid review was conducted across five electronic databases for quantitative and qualitative articles published through March 15, 2021. Results: The 10 studies included in this review reported quantitative descriptive data from across the globe; however, no studies existed from the U.S. or East Asia countries. All of the studies examined the psychological rather than physical impact of COVID-19 and highlighted risk and protective factors in the areas of psychosocial (resilience, neuropsychiatric, and social isolation), sociodemographic (gender and education), and environmental (home confinement, living arrangement, and dementia stage). Conclusion: COVID-19 has had a considerable negative impact on the psychological well-being of informal caregivers of people with dementia, namely causing more depression and anxiety than pre-pandemic.


2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 72-72
Author(s):  
Emily Ihara ◽  
Catherine Tompkins ◽  
William Kennedy ◽  
Rhea Vance-Cheng ◽  
Bianca Kwan ◽  
...  

Abstract Research indicates that family caregivers of individuals living with dementia are at risk for high levels of stress, depression, physical health declines, and illness. The health and well-being of family caregivers is critically important to a long-term care system that is dependent on them to continue their caregiving role. In-depth individual and focus group interviews of 16 dementia caregivers were conducted to explore the emotional experiences of caregiving stress during transitions of individuals living with dementia to a higher level of care. Data were transcribed verbatim, checked for accuracy, and analyzed by at least two members of the research team. Line-by-line coding, memo writing, and constant comparative analyses were conducted until redundancy, when no new themes were discovered. Caregivers described various levels of feeling overwhelmed and symptom progression leading to the move to a nursing facility. Social isolation featured prominently, with caregivers describing a gradual erosion of their social network and socializing opportunities because of their caregiving responsibilities and the care recipient’s deteriorating symptoms. Caregivers described feeling isolated and stigmatized. One caregiver said, “…you’re being less invited, you’re being less involved. People don’t know how to deal with you…I don’t know if they become the pariah or I become the pariah.” At the same time, maintaining social connections and having help with caregiving featured prominently in the coping mechanisms described. The health of caregivers is equally as important as the person living with dementia, and programs, interventions, and resources should be a priority for supporting families through transitions.


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