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1 – 10 of 839M A Shariful Amin, Vess L. Johnson, Victor Prybutok and Chang E. Koh
The purpose of this research is to propose and empirically validate a theoretical framework to investigate the willingness of the elderly to disclose personal health information…
Abstract
Purpose
The purpose of this research is to propose and empirically validate a theoretical framework to investigate the willingness of the elderly to disclose personal health information (PHI) to improve the operational efficiency of AI-integrated caregiver robots.
Design/methodology/approach
Drawing upon Privacy Calculus Theory (PCT) and the Technology Acceptance Model (TAM), 274 usable responses were collected through an online survey.
Findings
Empirical results reveal that trust, privacy concerns, and social isolation have a direct impact on the willingness to disclose PHI. Perceived ease of use (PEOU), perceived usefulness (PU), social isolation, and recognized benefits significantly influence user trust. Conversely, elderly individuals with pronounced privacy concerns are less inclined to disclose PHI when using AI-enabled caregiver robots.
Practical implications
Given the pressing need for AI-enabled caregiver robots due to the aging population and a decrease in professional human caregivers, understanding factors that influence the elderly's disclosure of PHI can guide design considerations and policymaking.
Originality/value
Considering the increased demand for accurate and comprehensive elder services, this is the first time that information disclosure and AI-enabled caregiver robot technologies have been combined in the field of healthcare management. This study bridges the gap between the necessity for technological improvement in caregiver robots and the importance of transparent operational information by disclosing the elderly's willingness to share PHI.
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Erica S. Jablonski, Chris R. Surfus and Megan Henly
This study compared different types of full-time caregiver (e.g., children, older adults, COVID-19 patients) and subgroups (e.g., disability, race/ethnicity, sexual orientation…
Abstract
Purpose
This study compared different types of full-time caregiver (e.g., children, older adults, COVID-19 patients) and subgroups (e.g., disability, race/ethnicity, sexual orientation) in the United States during the COVID-19 pandemic for potentially meaningful distinctions.
Methodology/Approach
Data from the 9,854 full-time caregivers identified in Phase 3.2 (July 21–October 11, 2021) of the US Census Household Pulse Survey (HPS) were analyzed in this study using multinomial logistic regression to examine relationships between caregiver types, marginalized subgroups, generation, and vaccination status.
Findings
The prevalence of caregiving was low, but the type of full-time caregiving performed varied by demographic group (i.e., disability, race/ethnicity, sexual orientation, gender, generation, and vaccination status). The relative risk of being a COVID-19 caregiver remained significant for being a member of each of the marginalized groups examined after all adjustments.
Limitations/Implications
To date, the HPS has not been analyzed to predict the type of full-time informal caregiving performed during the COVID-19 pandemic or their characteristics. Research limitations of this analysis include the cross-sectional, experimental dataset employed, as well as some variable measurement issues.
Originality/Value of Paper
Prior informal caregiver research has often focused on the experiences of those caring for older adults or children with special healthcare needs. It may be instructive to learn whether and how informal caregivers excluded from paid employment during infectious disease outbreaks vary in meaningful ways from those engaged in other full-time caregiving. Because COVID-19 magnified equity concerns, examining demographic differences may also facilitate customization of pathways to post-caregiving workforce integration.
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Tricia Olea Santos, Hanna K. Ulatowska and Carla Krishan A. Cuadro
Dementia is characterized by the progressive decline in cognitive and daily functioning. Although the decline is often the defining characteristic of dementia in biomedical…
Abstract
Dementia is characterized by the progressive decline in cognitive and daily functioning. Although the decline is often the defining characteristic of dementia in biomedical models, several scholars highlight the preserved skills of persons with dementia. Identity, or a sense of self, is among the areas relatively preserved in the later stages of dementia. It is the window through which caregivers understand the subjective experiences of persons with dementia.
This qualitative exploratory study highlights the value of social relationships, particularly the role of the Filipino family in recognizing personhood and maintaining identity in dementia care. Preserving identity entails understanding the person’s unique characteristics that reflect one’s sense of self. In a highly collectivistic culture, such as the Philippines, the family is crucial to preserving identity and overall well-being in dementia. This study explores the perspectives of 15 Filipino caregivers as regards caring for a family member with dementia. Participants discuss changes in family structure and the challenges in dementia care. More importantly, they delve into strategies used to preserve identity and encourage life participation in their loved one with dementia. Essential Filipino cultural values in dementia care, such as collectivism, religion, and the values of filial piety and utang na loob (or debt of gratitude) are further discussed.
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Neha Gupta, Manya Khanna, Rashi Garg, Vedantika Sethi, Shivangi Khattar, Purva Tekkar, Shwetha Maria, Muskan Gupta, Akash Saxena, Parul Gupta and Sara Ann Schuchert
This study aims to examine the psycho-emotional and social experiences of caregivers of children with autism spectrum disorder. Various facets of the caregiving experience are…
Abstract
Purpose
This study aims to examine the psycho-emotional and social experiences of caregivers of children with autism spectrum disorder. Various facets of the caregiving experience are explored, including the feelings and thoughts of the parents/caregivers, such as the resilience experienced in their journey, how they coped with the challenges and also their positive experiences.
Design/methodology/approach
In this study, these aspects of the caregiving experience are broadly probed using semi-structured interviews subjected to narrative analysis. Lastly, there is a focus on the role of therapist-led intervention, specifically, the Eye to I© intervention model and its contributions to the parent/caregiver experience.
Findings
Findings from this study indicate that parents benefit from interventions that bridge gaps in skills and interpersonal communication which parents/caregivers feel they encounter in their day-to-day activities. Additionally, support groups for parents and caregivers could further address these issues.
Originality/value
This exploration reveals insights about the roles of societal structures and the caregiving journey.
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Daniel James Acton, Sujeet Jaydeokar and Steven Jones
Education and training is vital in improving age-related care provisions. However, a lack of awareness and understanding of dementia could be a factor in meeting the age-related…
Abstract
Purpose
Education and training is vital in improving age-related care provisions. However, a lack of awareness and understanding of dementia could be a factor in meeting the age-related needs of people. This paper aims to examine the impact dementia education has on caregivers’ confidence to provide person-centred care for people with intellectual disability and identifies additional training needs.
Design/methodology/approach
A systematic scoping review was completed using preferred reporting items for systematic reviews and meta-analyses to guide the process of mapping existing evidence of dementia education and training programmes available to caregivers of people with intellectual disability.
Findings
A search of five electronic databases identified 11 articles that reported on the role of dementia education in improving the knowledge of caregivers in effectively delivering the age-related care. Findings suggest that improved training provision is needed to support early diagnosis and increase caregivers’ confidence in meeting the physical and psychological needs of older adults with intellectual disability.
Originality/value
This review contributes to the literature by identifying the value of and need for continued development in dementia education and training to improve person-centred dementia care.
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Chisom Joy Mbadugha, Ngozi Phoebe Ogbonnaya, Peace Njideka Iheanacho, Ngozi Joy Omotola, Pleasure Nwakaego Ogbonna and Chinenye Juliet Anetekhai
Schizophrenia, a chronic mental disorder, poses enormous threat to the individual, family and society. The advent of deinstitutionalization of the mentally ill transferred the…
Abstract
Purpose
Schizophrenia, a chronic mental disorder, poses enormous threat to the individual, family and society. The advent of deinstitutionalization of the mentally ill transferred the burden of care to families especially close relatives. Few studies have described the families' subjective views in this context. Hence, this study aimed to explore impacts of caregiving and coping strategies for family caregivers of patients with schizophrenia in Enugu, South East Nigeria.
Design/methodology/approach
A descriptive qualitative design was employed, and 14 family caregivers of individuals with schizophrenia attending federal neuropsychiatric hospital Enugu were purposively selected. A semi-structured interview guide was used to generate information, and the transcribed data were content analyzed using a thematic approach.
Findings
Three major themes and 16 subthemes were derived to reflect the perceived impact of caregiving and coping strategies of family caregivers, which include burden of care (physical-self neglect, ill health, sleep deprivation; psychological-gross irritability, ruminations; social-stigmatization, social restrictions, diminished connections, reduced productivity); positive aspects (heightened understanding; empathetic attitude, strengthened ties) and adaptive resources (acceptance, optimism, social support, spiritual devotion).
Originality/value
Family caregivers of individuals with schizophrenia experience bio-psychosocial burden as a result of caregiving. Coping with challenges of caregiving can prevent distress and burnout. Hence, there is need for mental health professionals to recognize caregivers as person in need of emotional and practical support and care for the mentally ill in the context of a family-centered approach.
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Sirinthip Nimitphuwadon, Pornchai Jullamate, Naiyana Piphatvanitcha, Sivasankari Nadarajan and Watchara Tabootwong
This study aims to examine the factors predicting burden among the male caregivers of older adults with stroke.
Abstract
Purpose
This study aims to examine the factors predicting burden among the male caregivers of older adults with stroke.
Design/methodology/approach
This was a descriptive cross-sectional study. A simple random sampling technique was used to recruit 98 male caregivers in the outpatient department’s neurological clinic, at Banphaeo General Hospital. Data was collected using six questionnaires: the demographic questionnaire, the center for epidemiologic studies depression scale, the perceived health status interview form, the caregiver and patient relationship interview form, the Barthel ADL index and the Zarit burden interview. Descriptive statistics and stepwise multiple regression analysis were used for data analysis.
Findings
The male caregivers of older adults with stroke had a mild to moderate level of burden. Factors such as depression of caregivers and activities of daily living of older adults predicted the burden among male caregivers, explaining 53.6% of the variance. The findings imply that nurses can plan new approaches and interventions to alleviate the burden of male caregivers by reducing their depression levels and encouraging activities of daily living in the older adults. In addition, effective programs can be developed to provide informational support to caregivers for reducing their burden level.
Originality/value
Male caregivers with depressive symptoms had an increased caregiving burden. Therefore, health-care professionals should support and formulate guidelines to reduce the burden of caregiving among the male caregivers by considering predictive factors.
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Narongdej Phanthaphoommee and Sunida Siwapathomchai
This article seeks to provide a fresh perspective on the methodological approach to studying caregiving in a transnational context by analysing, local caregiver’s lifeworld…
Abstract
Purpose
This article seeks to provide a fresh perspective on the methodological approach to studying caregiving in a transnational context by analysing, local caregiver’s lifeworld, informal interpreting/translation and professional communication with foreign retirees.
Design/methodology/approach
This project explores the complex and multifaceted meanings of everyday objects through diffractive vignettes to illuminate the communicative entanglements that arise between caregivers and foreign retirees receiving care in Thailand. To identify intra-actions in caregiving, we collected data through informal interviews, observations and various artefacts before combining them in a group of potential communicative relationships by creating a narrative summary of situations.
Findings
Communicative relationships in the vignettes are multidimensional, with diverse logics underlying choices, rapport formation and communication effectiveness. This premise also illuminates how caregivers perceive and intra-act with their accommodation strategies, considering trust, comfort and comprehension. Our findings were also discussed with the concept of communication accommodation theory.
Originality/value
As an extension of the post-humanist approach to the diffractive reading of vignettes, this study sees its value in studying agent-related informal translation/interpreting and human-to-human relationships.
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Kelly Norwood and Mary Webster
Research ethics and integrity stipulates that research must be conducted with responsibility towards the research community and should benefit the intended population. This…
Abstract
Research ethics and integrity stipulates that research must be conducted with responsibility towards the research community and should benefit the intended population. This chapter will share insights from an ongoing research programme to reduce family conflict in the context of dementia care while discussing the accompanying ethical considerations. Research into dementia care has primarily focused on improving outcomes for the care dyad, leaving the influence and input of the wider family unit under investigated. Family conflict can detrimentally impact the quality of care provided and leave caregivers vulnerable to psychosocial difficulties. Family conflict occurs in the context of dementia care but there is little research on how to reduce, or prevent, such conflict occurring. In this research programme, a systematic review investigated the effectiveness of interventions that include the wider family unit to reduce family conflict; only one study was included which evidenced the lack of interventions in this area. A qualitative scoping review was then conducted to explore the lived experiences of caregiving families with experience of family conflict and reported solutions. It was found that conflict occurred due to factors including care decisions and role transitions which impacted relationships and affected care provision. Solutions to conflict were less often reported, indicating an important gap in the literature. Interviews with Alzheimer's Society staff and volunteers revealed that stigma and denial surrounding dementia were prevalent, and families were often reluctant to seek external help. This research programme is currently establishing public patient involvement (PPI) to develop the research methodology and interview questions for people with dementia (PWD) and their family caregivers to explore their lived experiences and potential solutions to family conflict. To conclude, this research programme will propose a family-focused intervention aimed at systemic family conflict for those caring for someone with dementia.
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Fatemeh Ranjbar Noei, Vajihe Atashi and Elaheh Ashouri
High levels of depression and anxiety in the family caregivers of a patient with cancer affect their quality of life. The purpose of this study was to investigate the effects of a…
Abstract
Purpose
High levels of depression and anxiety in the family caregivers of a patient with cancer affect their quality of life. The purpose of this study was to investigate the effects of a mindful self-compassion (MSC) training program on self-compassion in the family caregivers of patients with cancer.
Design/methodology/approach
In 2020, this quasi-experimental study used convenience sampling to select 92 family caregivers of patients with cancer presenting to the oncology ward of Seyed-Al-Shohada Hospital, Isfahan, Iran. The subjects randomly assigned to two groups participated in an online MSC program for 1.5 months. All the participants completed a self-compassion scale (Neff) before, immediately after and one month after the intervention. The data were analyzed using the Mann–Whitney U test, the Chi-squared test, the LSD test, the t-test and repeated measures ANOVA.
Findings
The total mean score of self-compassion, respectively, obtained as 64.64 ± 8.23 and 64.44 ± 4.94 in the experimental and control groups before the intervention significantly increased to 81.15 ± 7.94 and 64.06 ± 5.22 immediately after and 78.94 ± 8.22 and 64.22 ± 4.85 one month after the intervention (P < 0.001).
Practical implications
Given the potential for negative psychological impacts for patients, caregivers and clinicians in cancer care, the online MSC program can be recommended to support and reduce psychological distress in them.
Originality/value
This paper examined the effect of the online MSC program on self-compassion in the family caregivers of patients with cancer and can contribute to our understanding of the value of integrating mental health of caregivers and care of patients with cancer.
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