Search results for: caregiving

Authors: Cecilia Fagerstrom, Solve Elmstahl, Lena S. Wranker

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The conditions of increased morbidity in an aging population cause the need for family care to become more common at an advanced age. The role of family caregivers may well last for a long time but may also change over time, from being caregivers to being non-caregivers or vice versa. Although demands associated with family caring change as individuals enter into, engage with, and exit from this role, the evidence regarding the impact of family caregiving transitions on the health of older carers is still limited. This study comprised individuals (n=2294, 60+years) from the southern part of Sweden included in the project Swedish National study of Aging and Care. Caregiving transitions are discussed in the categories: enter, exit, and continuing during a six-year period. Individuals who exited caregiving during the time were older than those who continued or entered into the role of caregiving. At the six-year follow-up, caregivers who were continuing or had exited caregiving were more often worried about their own health compared to baseline. Resembling findings were not found in those who entered caregiving. Family caregiving transitions of exiting, entering or continuing had no effect on the individuals’ functional, physical and mental health expect for participants who entered in caregiving. For them, entering the role of family caregiving was associated with an improvement in physical health during the six years follow up period. Conclusion: Although the health impact of different caregiving transitions in late life does not differ, individual conditions and health at baseline are important parameters to take into consideration to improve long-term health in family caregivers.

Keywords: family caregiving, health, old age, transition

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Authors: N. Anjana

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Worldwide, the prevalence of mental illnesses is increasing. The issues of persons with mental illness and their caregivers have been well documented in the literature. However, data regarding the factors affecting the caregiving experience of children with parental mental illnesses is sparse. This systematic review aimed to examine the existing literature of the factors affecting the caregiving experience of children of parents with mental illnesses. A comprehensive search of databases such as PubMed, EBSCO, JSTOR, ProQuest Central, Taylor and Francis Online, and Google Scholar were performed to identify peer-reviewed papers examining the factors associated with caregiving experiences of children with parental mental illnesses such as schizophrenia and major depression, for the 10-year period ending November 2019. Two researchers screened studies for eligibility. One researcher extracted data from eligible studies while a second performed verification of results for accuracy and completeness. Quality appraisal was conducted by both reviewers. Data describing major factors associated with caregiving experiences of children with parental mental illnesses were synthesized and reported in narrative form. Five studies were considered eligible and included in this review. Findings are organized under major themes such as the impact of parental mental illness on children’s daily life, how children provide care to their mentally ill parents as primary carers, social and relationship factors associated with their caregiving, positive and negative experiences in caregiving and how children cope with their experiences with parental mental illnesses. Literature relating to the caregiving experiences of children with parental mental illnesses is sparse. More research is required to better understand the children’s caregiving experiences related to parental mental illnesses so as to better inform management for enhancing their mental health, wellbeing, and caregiving practice.

Keywords: caregiving experience, children, parental mental illnesses, wellbeing

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Authors: Ricky Finzi-Dottan

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The actor–partner interdependence model (APIM) was employed in this study to investigate the mediating effect self-differentiation and spousal caregiving have on the relationship between recollection of parental care and acceptance and couple satisfaction. One hundred and forty-four non-clinical couples (N=288) in enduring relationships were recruited. Results for actor effects revealed two mediating paths whereby, among both partners, recollection of maternal (but not paternal) acceptance was associated with their self-differentiation and responsive spousal caregiving, which, in turn, were linked to their spousal relationship satisfaction. Partner effects revealed three mediating paths: for both partners, recollection of childhood maternal acceptance was associated with responsive caregiving, which, in turn, was linked with their partner’s relationship satisfaction. Interestingly, the husbands’ recollection of maternal acceptance was associated with their partners' responsive spousal caregiving, which was linked to both spouses’ relationship satisfaction. Our results may support the theoretical assumptions regarding intergenerational continuity from perceptions of childhood via self-differentiation effecting couple caregiving to couple relationship, but only on the mother's part.

Keywords: couple relationship satisfaction, childhood parental acceptance, self-differentiation, couple caregiving, dyadic perspective

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Authors: Mmapula Petunia Tsweleng

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This qualitative study presents an exploration and findings thereof the quality of primary caregiving relationships between adolescents orphaned through Acquired Immune Deficiency Syndrome (AIDS) and their grandmothers. This exploration was based on in-depth narratives of 6 stakeholders who provided community-based psychosocial support services to children and families affected by AIDS. The narratives show that grandmothers provided high-quality parental care and support to the orphans. Furthermore, stakeholders categorised grandmother caregiving as genuine. Findings also show that the orphans thrived emotionally, socially, and cognitively and performed well academically. However, it was also identified that grandmothers’ caregiving had elements of overprotectiveness as well as susceptibility to manipulation -which appeared to be a threat to the positive development of the orphans. Relevant interventions, with a special focus on strengthening grandmother caregiving, are needed. Special attention should be on equipping grandmothers with a better understanding of adolescent behaviours and abilities to provide appropriate monitoring and supervision.

Keywords: adolescent orphans, AIDS, caregiving relationships, grandmothers

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Authors: Walter Rafael Ramos Villanueva

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The overwhelming majority of scholarship on David Chariandy’s novel Soucouyant focuses on how Adele’s dementia represents the preservation of “cultural memory” and the perniciousness of “historical trauma.” However, by metaphorizing Adele’s mental condition, these critics risk treating her dementia as mostly figurative, and they thus elide a more detailed discussion of the literal ramifications of her dementia diagnosis. To move beyond these readings, then, my paper will approach Adele’s disorder as a literal medical condition and explore how her caregiving needs affect not only her but also those around her. Soucouyant subverts traditional caregiving narratives by depicting the difficult and typically invisible labour of informal caregiving that is undertaken by the families and friends of those who are ill or otherwise disabled. Because Adele’s family is unable to access proper public healthcare resources within the community, the burden of care falls upon the protagonist and his brother, who become “parentified children.” Parentified children, according to Nancy D. Chase, are “parents to their parents, and fulfill this role at the expense of their own developmentally appropriate needs and pursuits.” The novel provides a depiction of informal caregiving that is multi-faceted and asks us to question why is it exactly that we place the burden of care on those who are not equipped to handle such pressures instead of putting the onus on the government and the public healthcare system to take care of its most vulnerable members. Ageing Studies scholar Larry Polvika notes that although policymakers often offer “pious expressions of appreciation” and acknowledge that informal caregiving is “the backbone of our long-term care system,” governmental support for these caregivers remains inadequate. It is my belief that, by showcasing the struggles of informal caregivers, Chariandy’s text combats this dangerous and empty political rhetoric.

Keywords: caregiving, dementia, literature, parentified children

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Authors: Akram Farhadi, Mahshid Froughan, Farahnaz Mohammadi, Maryam Rassouli, Maryam Noroozian, Leila Sadeghmoghaddam

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Background: The caregivers’ assessment of their own caregiving is considered the most important concept in exploring their experiences and has a major role in care outcomes. The rising number of people with dementia and their need for care makes family caregiving really important matter to consider and evaluate. Objectives: This study was conducted with the aim to naturalize and validate the Persian version of the Revised Caregiving Appraisal Scale (RCAS) in family caregivers of older adults with dementia. Patients and Method: In this cross-sectional methodological study, the Revised Caregiving Appraisal Scale (RCAS) was translated using International Quality of Life Assessment (IQOLA) protocol, and then a panel of experts examined its face and content validities. To ensure construct validity, the translated Revised Caregiving Appraisal Scale (RCAS) was completed by 236 family caregivers, and factor construct of the scale was assessed with 5 initial factors using confirmatory factor analysis. Internal consistency was found using Cronbach's alpha, and test-retest using intraclass correlation coefficient. Confirmatory factor analysis was performed in LISREL-8.8 software in Windows®. Results: Participating caregivers' mean age was 53.5±13.13 years. Content and face validities of the scale were confirmed according to the views expressed by family caregivers and panel of experts. The confirmatory factor analysis (CFA) results showed appropriate values for all fitness indices (RMSEA=0.046, df/X2=2.428, CFI=0.98, AGFI=0.84, GFI=0.9), and the 5-factor model was confirmed with 27 items. Overall Cronbach's alpha was reported 0.894, and test retest showed overall ICC=0.94. Conclusion: The Persian version of RCAS is a valid and reliable tool for family caregivers' assessment of their caregiving of older adults with dementia, and can be useful in assessing family caregiving interventions.

Keywords: psychometric, family caregivers, reliability and validity, elderly, dementia, self-appraisal

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Authors: Sharlene Fernandes

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Literature has shed light on the challenges of mothers of children with ASD, one of which involves sacrificing their professional jobs to fulfill the demands of their caregiving roles. However, the voices of the mothers who pursue employment along with caregiving roles have been overlooked. This study aimed to address this issue by exploring the narratives of Employed Mothers of Children with Autism Spectrum Disorder using the Narrative approach to inquiry. Through the view of Feminist Standpoint Theory, this study attempted to understand the role of sociocultural and systemic factors in shaping the lives of mothers. By employing the theoretical lens of Ethics of Care, this study explored how mothers balance care with their employment responsibilities, which are expected to be balanced seamlessly. Through narrative interviews, the study addressed the mothers' narratives on navigating work and caregiving, delving into their interpretations regarding expectations of care. The study gained valuable insights into the nuanced dynamics of employment, caregiving, and gender roles among mothers of children with Autism in the Indian context, implicating the urgent need for organizational policies, enhanced support systems, better quality therapeutic services, and inclusive school developments.

Keywords: Autism Spectrum Disorder, Caregivers, Employed Mothers, India, Narratives

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Authors: Kate Jonathan

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This article presents the findings of a qualitative study into parenting practices in families of Pakistani origin in the North of England. It focuses on the involvement of fathers in childrearing within the Pakistani community. Data was generated from thirty parents’ in-depth interviews and ethnographic observation of parent-child relationships. The data was analyzed by an initial coding, identifying themes, a grouping of patterns, and arriving at a meaningful understanding. The study shows that the traditional role of fathers as breadwinners, providing discipline and protection, was still prominent in most of the Pakistani families who took part in the study. However, few men were becoming pragmatic and would engage in more childrearing chores, as their wives. The findings indicate that previous general portrayal of fatherhood as the primary, and sometimes, only, breadwinner is changing to encompass a lot more in Pakistani communities. Nowadays, some fathers are more involved in caregiving and are increasingly become co-contributors in the development of their children. However, the change is slower in some families than others and varied within this community.

Keywords: caregiving, childrearing, fathers, Pakistani families

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Authors: Amanda Aliende da Matta

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In different fields, there are people who have something that stands out. In the educational world, for example, it is clear when some teachers have something: they are the best teachers, but this is not directly attributed to their disciplines, methodologies, etc. It is that they have something that captivates, inspires, and motivates. But we also find this something in other contexts. In this thesis, the interest is in something that some marginalized people, such as Ab (fictitious name), have. Ab was born in a rural community and saw the lifestyle of his family change drastically as a consequence of structural changes in his village. The community became impoverished, and together with a group of teenagers, he decided to migrate to Spain in search of opportunities. His best friend drowned during the crossing. After arriving, he lived in indecent conditions and felt unsafe. He now suffers from anxiety and frequently faints from it. Yet, he’s linked to Joves x la pau (a Christian project, although he is a Muslim), distributing food for people who live on the streets every Thursday afternoon. When he asked about what happens on cold and rainy days, he explained simply: "if it rains, I distribute the food, and immediately I get home, take a bath, and sleep warm under my roof. That is when we most have to go." This something he has will be called caring. And one of the general objectives of the thesis is to discover what are the meaning structures of this caring what is the lived experience of this caring. In this communication, preliminary results of an Applied Hermeneutic Phenomenology (AHP) study on the lived experience of caring as a vulnerable person are presented. The research means to answer what is the lived experience of caring as a vulnerable person. That is, to describe and explain what it is like to caregive for a vulnerable person, what it is, essentially, to caregive for a vulnerable person, what makes the lived experience of caregiving for a vulnerable person different from any other. In order to investigate the meaning of the phenomenon of caregiving as a vulnerable person, as already stated, the method used will be Applied Hermeneutic Phenomenology (AHP). We base ourselves, initially, on the proposal of Raquel Ayala-Carabajo and Max Van Manen. As Van Manen (1990) explains, AHP is a method that works essentially through fieldwork, with the collection of data on lived experience (experiential material). It is a phenomenology of practice. We here present the provisional themes we found: caregiving as a vulnerable person is seeing yourself in the other, identifying with the care-receiver; Caregiving as a vulnerable person is putting the other’s need before oneself’s; Caregiving as a vulnerable person is temporarily overcoming your weaknesses to make yourself strong for the other; Caregiving as a vulnerable person is going beyond the conventional approach; and Caregiving as a vulnerable person is taking responsibility even if it’s not yours.

Keywords: applied hermeneutic phenomenology, care ethics, hermeneutics, phenomenology

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Authors: Su-Lin Yu

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This paper will explore how gender and care discourse are intersected, reformulated and contested in American daughters’ caregiving memoirs. In particular, it will attempt to show how gender structure has worked to regulate a daughter’s response to her mother’s illness. In other words, how do certain cultural notions and class difference affect the ways in which the daughter enacts her caregiving response to her mother’s illness? What is the interrelation of female subjectivity and care practice? To understand care and gender politics in the memoirs, this paper will engage in close readings of five texts: Sandra Bullock Simith’s Trading Places: Becoming My Mother’s Mother: A Daughter’s Memoir (2015),Martha Stettinius’s Inside the Dementia Epidemic: A Daughter’s Memoir (2012), Patricia Thompson Collamer’s Grace on the Ledge: a Caregiver's Memoir, Judith Henry’s The Dutiful Daughter's Guide to Caregiving: A Practical Memoir (2015), and The Daughter's Dilemma: A Survival Guide to Caring for an Aging, Abusive Parent by Emily Wanderer Cohen (2018). By analyzing these texts, this paper will show why adult daughters become the primary caregivers, how gender norms and care practices influence a daughter’s thoughts and actions, and how it affects her self-understanding. Taken as a whole, then, the paper will provide an important examination not only of care and gender politics, but also a contribution to the intersecting discourses of illness, death, and mother-daughter relationship.

Keywords: care ethics, daughter-mother relationship, gender politics, memoirs

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Authors: Longtao He, Han Wu

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Summary: As the need for elder care increases in China due to a growing aging population and, in particular, rising cancer rates, it becomes increasingly important to also support family caregivers, who are often the main source of care. We used a qualitative meta-synthesis to systematically evaluate and integrate the caregiving experiences of family caregivers of elderly cancer patients as revealed by articles published in Chinese journals. Findings: Nine studies are included in the final analysis. The caregiver experiences they describe are synthesized into three primary themes: care needs, care burden, and care gains, with numerous secondary themes. Besides the findings that seem to align with other findings across cultures, we have highlighted three main discoveries from the synthesis that may be quite specific to the Chinese context: 1. more sub-themes related to specific caregiving skills caregivers of cancer patients; 2. a call for health professionals to improve their communication skills with family caregivers; 3. the important role of filial piety. Applications: Our findings can be used to help health social workers and relevant policymakers in China support family caregivers by identifying the education and training required for caregivers, ways to make the most of potential care gains, and ways to ease care burdens.

Keywords: cancer, Chinese family caregivers, caregiving skills, care burden, care gains, health social work

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Authors: Tulika Bhattacharyya, Suhita Chopra Chatterjee

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Family caregivers are vital in providing physical and emotional care to the aged. Providing care to aged involves physical as well as psycho-socio-economic challenges, compels the caregiver to fit in manifold roles, feel overburdened; which in turn requires them to change their priorities in life. The study conducted on family caregivers of the hospitalized elderly explores caregiver’s burden using Zarit Burden Scale (ZBS). The data has been collected from two randomly selected Multispecialty Hospitals in Kolkata (India), after obtaining ethical clearance from the Institutional Review Board of both the hospitals. The predictors of burden were also assessed using interview schedules. Among fifty-seven caregivers who participated in the study, caregiver’s burden was identified among thirty respondents with twenty-six having mild to moderate burden and four having moderate to severe burden. Majority of the caregivers were found to be female, reflecting the gendered nature of caregiving. Family caregivers spent more than six hours per day on caregiving, which severely disturbed their work-life including loss of job. The study revealed that the caregivers’ marital status, family structure, academic qualification, occupation and time spent on caregiving are related to family caregivers’ burden. The burden of care giving was accentuated by poor access to information, counseling, and lack of supportive services. The paper concludes by indicating the need for greater state interventions for caregivers.

Keywords: caregivers burden, family caregiving, hospitalized elderly, elderly in Kolkata, India, Zarit Burden Scale

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Authors: Kristine Demilou D. Santiago

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An access to a high-quality health care system is what sets apart industrialized nations, such as the United States from other developing countries, which in this case is specifically pertaining to their older population. But what was the underrated factor in the sphere of quality healthcare rendered to elderly people in the Western context? Will this salient factor could push conviction to prorogue the existing gaps between self-denial patient-client and cheek by jowl medications? Are the natural socio-environmental approaches of caregiving the protracted remedy to healthcare disparities for aging population considering their day to day living? The conceptual framework of this model is primarily associated with addressing health and illness of human beings considering the biological, psychological and socio-environmental factors around them. The relevance of biopsychosocial formulation advancing each of the characteristics in the Biopsychosocial (BPS) model in a balance contemplation is the tumult of this study in an attempt to respond to prevailing disparities in caregiving services for old-aged patients on a day to day living. Caregiving services have been the medium path connecting between the patient and its prescribed medications. Moreover, caregivers serve as positive reinforcers in a patient’s environment. Therefore, caregivers play an important role in healthcare delivery to patients. They are considered significant people whom their acts will give an impact to a patient’s view in life. This research study intends to present the supreme importance of biopsychosocial assessment to old-aged patients with mental health illness and conditions. Biopsychosocial assessment will secure the quality of full medication to an old-aged adult suffering from a mental illness. This is because it offers a recognizably wholesome approach to medical healing of old-aged adult patients. The principle of biopsychosocial supersedes the biomedicine being offered to old-aged adults having mental illness, but it does not take away the high relevance of scientific biomedicine in healing patients. The framework presented an overlapping participation of each of its factors in its BPS model that affects in general a person’s health. The correlation between the biological (physiological), psychological (mental) and social (environment) in a person’s health condition requires equal attention according to BPS, and it always coexist with each other. Indisputably said, bio-medicine has been and is being in its unceasing endeavor to provide scientifically proven health care medications for every individual seeking medical treatments. As we grow older and eventually reach the other side of the median population, not only our physiological aspects change, our psychological and socio-environmental changes happen too. Caregiving is a salient responsibility taking place on these inevitable changes.

Keywords: biopsychosocial formulation, caregiving through natural approaches, US health care, BPS in caregiving, caregiving for aging population

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Authors: Piyaorn Wajanatinapart, Diane R. Lauver

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The number of persons with dementia (PWD) has increased. Informal caregivers are the major providing care. They can have perceived gains and burdens. Caregivers who reported high in perceived gains may report low in burdens and better health. Gaps of caregiving literature were: no report psychometrics in a few studies and unclear definitions of gains; most studies with no theory-guided and conducting in Western countries; not fully described relationships among caregiving variables: motivations, satisfaction with psychological needs, social support, gains, burdens, and physical and psycho-emotional health. Those gaps were filled by assessing psychometric properties of selected measures, providing clearly definitions of gains, using self-determination theory (SDT) to guide the study, and developing the study in Thailand. The study purposes were to evaluate six measures for internal consistency reliability, content validity, and construct validity. This study also examined relationships of caregiving variables: motivations (controlled and autonomous motivations), satisfaction with psychological needs (autonomy, competency, and relatedness), perceived social support, perceived gains, perceived burdens, and physical and psycho-emotional health. This study was a cross-sectional and correlational descriptive design with two convenience samples. Sample 1 was five Thai experts to assess content validity of measures. Sample 2 was 146 Thai caregivers of PWD to assess construct validity, reliability, and relationships among caregiving variables. Experts rated questionnaires and sent them back via e-mail. Caregivers answered questionnaires at clinics of four Thai hospitals. Data analysis was used descriptive statistics and bivariate and multivariate analyses using the composite indicator structural equation model to control measurement errors. For study results, most caregivers were female (82%), middle age (M =51.1, SD =11.9), and daughters (57%). They provided care for 15 hours/day with 4.6 years. The content validity indices of items and scales were .80 or higher for clarity and relevance. Experts suggested item revisions. Cronbach’s alphas were .63 to .93 of ten subscales of four measures and .26 to .57 of three subscales. The gain scale was acceptable for construct validity. With controlling covariates, controlled motivations, the satisfaction with three subscales of psychological needs, and perceived social support had positive relationships with physical and psycho-emotional health. Both satisfaction with autonomy subscale and perceived social support had negative relationship with perceived burdens. The satisfaction with three subscales of psychological needs had positive relationships among them. Physical and psycho-emotional health subscales had positive relationships with each other. Furthermore, perceived burdens had negative relationships with physical and psycho-emotional health. This study was the first use SDT to describe relationships of caregiving variables in Thailand. Caregivers’ characteristics were consistent with literature. Four measures were valid and reliable except two measures. Breadth knowledge about relationships was provided. Interpretation of study results was cautious because of using same sample to evaluate psychometric properties of measures and relationships of caregiving variables. Researchers could use four measures for further caregiving studies. Using a theory would help describe concepts, propositions, and measures used. Researchers may examine the satisfaction with psychological needs as mediators. Future studies to collect data with caregivers in communities are needed.

Keywords: caregivers, caregiving, dementia, measures

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Authors: M. Petunia Tsweleng

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Statement of the Problem: Research and aid organisations report that children and adolescents orphaned due to HIV and AIDS are particularly vulnerable as they are often exposed to negative effects of both HIV and AIDS and orphanhood. Without much-needed parental love, care, and support, these children and adolescents are at risk of poor developmental outcomes. A cursory look at the available literature on AIDS-orphaned adolescents, and the quality of caregiving relationships with caregivers, shows that this is a relatively under-researched terrain. This article is a review of the literature on caregiving relationships of adolescents orphaned due to AIDS and their current primary caregivers. It aims to inform community programmes and policymakers by providing insight into the qualities of these relationships. Methodology: A comprehensive search of both peer-reviewed and non-peer-reviewed literature was conducted through EBSCOhost, SpringLINK, PsycINFO, SAGE, PubMed, Elsevier ScienceDirect, JSTOR, Wiley Online Library databases, and Google Scholar. The combination of keywords used for the search were: (caregiving relationships); (orphans OR AIDS orphaned children OR AIDS orphaned adolescents); (primary caregivers); and (quality caregiving); (orphans); (HIV and AIDS). The search took place between 24 January and 28 February 2022. Both qualitative and quantitative research studies published between 2010 and 2020 were reviewed. However, only qualitative studies were selected in the end -as they presented more profound findings concerning orphan-caregiver relationships. The following three stages of meta-synthesis analysis were used to analyse data: refutational syntheses, reciprocal syntheses, and line of argument. Results: The search resulted in a total of 2090 titles, of which 750 were duplicates and therefore subtracted. The researcher reviewed all the titles and abstracts of the remaining 1340 articles. 329 articles were identified as relevant, and full texts were reviewed. Following the review of the full texts, 313 studies were excluded for relevance and 4 for methodology. Twelve articles representing 11 studies fulfilled the inclusion criteria and were selected. These studies, representing different countries across the globe, reported similar forms of hardships experienced by caregivers economically, psychosocially, and healthwise. However, the studies also show that the majority of caregivers found contentment in caring for orphans, particularly grandmother carers, and were thus enabled to provide love, care, and support despite hardships. This resulted in positive caregiving relationships -as orphans fared well emotionally and psychosocially. Some relationships, however, were found negative due to unhealed emotional wounds suffered by both caregivers and orphans and others due to the caregiver’s lack of interest in providing care. These findings were based on self-report data from both orphans and caregivers. Conclusion: Findings suggest that intervention efforts need to be intensified to: alleviate poverty in households that are affected by HIV and AIDS pandemic, strengthen the community psychosocial support programmes for orphans and their caregivers; and integrate clinical services with community programmes for the healing of emotional and psychological wounds. Contributions: Findings inform community programmes and policymakers by providing insight into the qualities of the mentioned relationships as well as identifying factors commonly associated with high-quality caregiving and poor-quality caregiving.

Keywords: systematic review, caregiving relationships, orphans and primary caregivers, AIDS

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Authors: M. Abdul Jalil

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Parents caring for a child with a profound disability encounter different experiences compared to the parents caring for a child without a disability. The aim of this paper is to develop a greater understanding of parenting of a child with profound disabilities in the context of developing countries with reference to Bangladesh. The paper reveals that parents caring for a child with a profound disability are experiencing increased financial burden, affiliate and courtesy stigma and negative impact on mothers in terms of additional caregiving role, instability of conjugal relations, giving up of involvement in economic activities, and shrinking kinship and social relationships. In addition, government and non-government services for children with disabilities are very limited. Moreover, the information about the services is also not available to the parents. Therefore, parents find it difficult to cope with the challenges that lead to the alienation of the parents. The paper recommended the strategies to address the issues in the context of Bangladesh, which in turn might be applicable to the developing countries as well.

Keywords: caregiving, coping, parenting, profound disability

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Authors: Eliana Bergamin

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This philosophical inquiry, influenced by the seminal works of Annemarie Mol and Jeannette Pols, critically examines the transformative impact of artificial intelligence (AI) on emotional caregiving practices within virtual healthcare. Rooted in the traditions of philosophy of care, philosophy of emotions, and applied philosophy, this study seeks to unravel nuanced shifts in the moral and emotional fabric of healthcare mediated by AI-powered technologies. Departing from traditional empirical studies, the approach embraces the foundational principles of care ethics and phenomenology, offering a focused exploration of the ethical and existential dimensions of AI-mediated emotional caregiving. At its core, this research addresses the introduction of AI-powered technologies mediating emotional and care practices in the healthcare sector. By drawing on Mol and Pols' insights, the study offers a focused exploration of the ethical and existential dimensions of AI-mediated emotional caregiving. Anchored in ethnographic research within a pioneering private healthcare company in the Netherlands, this critical philosophical inquiry provides a unique lens into the dynamics of AI-mediated emotional practices. The study employs in-depth, semi-structured interviews with virtual caregivers and care receivers alongside ongoing ethnographic observations spanning approximately two and a half months. Delving into the lived experiences of those at the forefront of this technological evolution, the research aims to unravel subtle shifts in the emotional and moral landscape of healthcare, critically examining the implications of AI in reshaping the philosophy of care and human connection in virtual healthcare. Inspired by Mol and Pols' relational approach, the study prioritizes the lived experiences of individuals within the virtual healthcare landscape, offering a deeper understanding of the intertwining of technology, emotions, and the philosophy of care. In the realm of philosophy of care, the research elucidates how virtual tools, particularly those driven by AI, mediate emotions such as empathy, sympathy, and compassion—the bedrock of caregiving. Focusing on emotional nuances, the study contributes to the broader discourse on the ethics of care in the context of technological mediation. In the philosophy of emotions, the investigation examines how the introduction of AI alters the phenomenology of emotional experiences in caregiving. Exploring the interplay between human emotions and machine-mediated interactions, the nuanced analysis discerns implications for both caregivers and caretakers, contributing to the evolving understanding of emotional practices in a technologically mediated healthcare environment. Within applied philosophy, the study transcends empirical observations, positioning itself as a reflective exploration of the moral implications of AI in healthcare. The findings are intended to inform ethical considerations and policy formulations, bridging the gap between technological advancements and the enduring values of caregiving. In conclusion, this focused philosophical inquiry aims to provide a foundational understanding of the evolving landscape of virtual healthcare, drawing on the works of Mol and Pols to illuminate the essence of human connection, care, and empathy amid technological advancements.

Keywords: applied philosophy, artificial intelligence, healthcare, philosophy of care, philosophy of emotions

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Authors: Mohammad Didar Hossain

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Background/Purpose: The purpose of this study was to examine the associations between productive engagements and the psychological well-being of older adults in the U.S by analyzing cross-sectional data from a secondary dataset. Specifically, this paper analyzed the associations of 4 different types of productive engagements, including current work status, caregiving to the family members, volunteering and religious strengths with the psychological well-being as an outcome variable. Methods: Data and sample: The study used the data from the Health and Retirement Study (HRS). The HRS is a nationally representative prospective longitudinal cohort study that has been conducting biennial surveys since 1992 to community-dwelling individuals 50 years of age or older on diverse issues. This analysis was based on the 2016 wave (cross-sectional) of the HRS dataset and the data collection period was April 2016 through August 2017. The samples were recruited from a multistage, national area-clustered probability sampling frame. Measures: Four different variables were considered as the predicting variables in this analysis. Firstly, current working status was a binary variable that measured by 0=Yes and 1= No. The second and third variables were respectively caregiving and volunteering, and both of them were measured by; 0=Regularly, 1= Irregularly. Finally, find in strength was measured by 0= Agree and 1= Disagree. Outcome (Wellbeing) variable was measured by 0= High level of well-being, 1= Low level of well-being. Control variables including age were measured in years, education in the categories of 0=Low level of education, 1= Higher level of education and sex r in the categories 0=male, 1= female. Analysis and Results: Besides the descriptive statistics, binary logistic regression analyses were applied to examine the association between independent and dependent variables. The results showed that among the four independent variables, three of them including working status (OR: .392, p<.001), volunteering (OR: .471, p<.003) and strengths in religion (OR .588, p<.003), were significantly associated with psychological well-being while controlling for age, gender and education factors. Also, no significant association was found between the caregiving engagement of older adults and their psychological well-being outcome. Conclusions and Implications: The findings of this study are mostly consistent with the previous studies except for the caregiving engagements and their impact on older adults’ well-being outcomes. Therefore, the findings support the proactive initiatives from different micro to macro levels to facilitate opportunities for productive engagements for the older adults, and all of these may ultimately benefit their psychological well-being and life satisfaction in later life.

Keywords: productive engagements, older adults, psychological wellbeing, productive aging

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Authors: Cemile Kütmeç Yilmaz, Güler Duru Asiret, Gulcan Bagcivan

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The aim of this study was to evaluate the reliability and validity of the Turkish version of the Carer’s Assessment of Satisfaction Index (CASI-TR). The study was conducted between the dates of June 2016 and September 2017 at the Training and Research Hospital of Aksaray University with the caregiving family members of the inpatients with chronic diseases. For this study, the sample size was calculated as at least 10 individuals for each item (item number (30)X10=300). The study sample included 300 caregiving family members, who provided primer care for at least three months for a patient (who had at least one chronic disease and received inpatient treatment in general internal medicine and palliative care units). Data were collected by using a demographic questionnaire and CASI-TR. Descriptive statistics, and psychometric tests were used for the data analysis. Of those caregivers, 76.7% were female, 86.3% were 65 years old and below, 43.7% were primary school graduates, 87% were married, 86% were not working, 66.3% were housewives, and 60.3% defined their income status as having an income covering one’s expenses. Care recipients often had problems in terms of walking, sleep, balance, feeding and urinary incontinence. The Cronbach Alpha value calculated for the CASI-TR (30 items) was 0,949. Internal consistency coefficients calculated for subscales were: 0.922 for the subscale of ‘caregiver satisfaction related to care recipient’, 0.875 for the subscale of ‘caregiver satisfaction related to themselves’, and 0.723 for the subscale of ‘dynamics of interpersonal relations’. Factor analysis revealed that three factors accounted for 57.67% of the total variance, with an eigenvalue of >1. assessed in terms of significance, we saw that the items came together in a significant manner. The factor load of the items were between 0.311 and 0.874. These results show that the CASI-TR is a valid and reliable scale. The adoption of the translated CASI in Turkey is found reliable and valid to assessing the satisfaction of caregivers. CASI-TR can be used easily in clinics or house visits by nurses and other health professionals for assessing caregiver satisfaction from caregiving.

Keywords: carer’s assessment of satisfaction index, caregiver, validity, reliability

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Authors: Md. Shafiullah

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This study delves into the evolving landscape of urban childcare in Bangladesh, focusing on the experiences and challenges faced by parents in Dhaka city. This paper argues that the traditional childcare arrangement of city families is inadequate to meet the development needs of children. The study aims to explore the childcare challenges faced by urban parents as they transition from traditional family-based childcare networks to alternative caregiving arrangements amidst urbanization, economic shifts, and social transformations. Utilizing a mixed-method research approach, combining quantitative surveys (n = 200) and four qualitative interviews, the research examines the parental viewpoints on childcare practices and the role of societal norms and values. The study finds childcare crises in both the family and daycare settings. In family care, caregiving suffers from the less availability of grandparents, a lack of skills of caregivers, and a lack of child interaction. As for the daycare, it is affected by the absence of appropriate policies, a lack of quality, health and safety concerns, affordability issues, and cultural concerns. Additionally, the study highlights inadequacies in childcare policies and regulatory frameworks, calling for comprehensive reforms to address the childcare vacuum in urban areas. By shifting the focus from developed to developing countries, this study contributes to the literature and suggests policy implications for Bangladesh and beyond.

Keywords: childcare, child development, childcare policy, daycare, Bangladesh

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Authors: Maari Sugawara

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This study investigates the constructed notion of “motherhood” and queered forms of care in contemporary Japan, focusing on rental family services. In Japan, the concept of motherhood is often equated with womanhood, reflecting a pervasive ideology that views motherhood as an essential aspect of a woman's societal role, particularly amidst economic recovery and an aging population. This study interrogates these gendered expectations by linking rental family services, particularly the role of rental mothers, to traditional caregiving roles. It critiques the gendered construction of domestic labor and aims to expand conceptions of alternative family structures and caregiving roles beyond normative frameworks. Emerging in the 1980s to provide companionship for the elderly, rental family services have evolved to meet diverse social needs, with paid actors fulfilling familial roles at various social events. Despite their growing prevalence, academic exploration of this phenomenon remains limited. This research aims to fill that gap by investigating the cultural, social, and economic factors fueling the popularity of rental family services and analyzing their implications for contemporary understandings of family dynamics and care labor in Japan. Furthermore, this study underscores the disproportionate domestic labor burden women in Japan bear, often managing time-intensive household tasks, which creates a "double burden" for those in full-time employment. Care work, including elderly and disability support, is undervalued and typically compensated at near-minimum wage levels, with women predominantly filling these low-wage roles. This gender disparity in Japan's care industry contributes to labor shortages in caregiving and childcare, highlighting broader structural inequities in the labor market. Through semi-structured qualitative interviews with fifteen rental mothers, this study investigates their experiences, motivations, role dynamics, and emotional labor. It critically examines whether the labor performed by rental family actors constitutes a subversive practice deserving of appropriate compensation. Utilizing a role-playing method, the author engages with rental mothers as if they were her own, reflecting the dynamics of compensated labor. This interaction delves into the economic and emotional aspects of constructed motherhood, facilitating a broader inquiry into the value of both productive and reproductive labor in Japan. The study also investigates the relationship between sex work and rental family services within the socio-economic landscape, recognizing the links between the welfare sector and female employment in legal sex work. Although distinct, these sectors merit joint consideration due to the commonality of male clients in both industries. This research engages with theoretical perspectives framing mobile sex work as inherently queer, directly challenging the dominance of heteronormativity. The agency exercised by sex workers complicates narratives of conformity and deviance, underscoring the need to reevaluate caregiving labor in both paid and unpaid contexts. Ultimately, this research critiques the intersection of gender, care, and labor in contemporary Japan by examining the undervaluation of traditional caregiving roles alongside the labor involved in rental family services. It challenges Japanese policies that equate womanhood with motherhood and explores the potential of viewing outsourced care as queered maternal and non-reproductive labor, advocating for the recognition of alternative family structures and non-reproductive forms of motherhood.

Keywords: motherhood, alternative family structures, carework, Japan, queer studies

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Authors: Nuraisyah H. Zulkifley, Suriani Ismail, Rosliza Abdul Manaf, Poh Y. Lim

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Taking care of a person with dementia (PWD) is one of the most problematic and challenging caregiving situations. Without proper support, caregiver would need to deal with the impact of caregiving that would lead to caregiver burden. One of the most common tools used to measure caregiver burden among caregivers of PWD is Zarit Burden Interview (ZBI). A systematic review has been conducted through searching Medline, Science Direct, Cochrane Library, Embase, PsycINFO, ProQuest, and Scopus databases to identify relevant articles that elaborate on intervention and outcomes on ZBI among informal caregiver of PWD. The articles were searched in October 2019 with no restriction on language or publication status. Inclusion criteria are randomized control trial (RCT) studies, participants were informal caregivers of PWD, ZBI measured as outcomes, and intervention group was compared with no intervention control or usual care control. Two authors reviewed and extracted the data from the full-text articles. From a total of 344 records, nine studies were selected and included in this narrative review, and eight studies were included in the meta-analysis. The types of interventions that were implemented to ease caregiver burden are psychoeducation, physical activity, psychosocial, and computer-based intervention. The meta-analysis showed that there is a significant difference in the mean score of ZBI (p = 0.006) in the intervention group compared to the control group after implementation of intervention. In conclusion, interventions such as psychoeducation, psychosocial, and physical activity can help to reduce the burden experiencing by the caregivers of PWD.

Keywords: dementia, informal caregiver, randomized control trial, Zarit burden interview

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Authors: Mindy A. Brown, Emma E. Reardon, Jennifer Isenhour, Sheila E. Crowell, K. Lee Raby, Elisabeth Conradt

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The positive impact of maternal sensitivity on infant social and emotional development is well-known, as is the notion that stress may impair a mother’s ability to provide sensitive care for her infant. However, individual differences in susceptibility to parenting-related stress are less understood. This study explores how chronic prenatal stress moderates the effect of acute stressors on maternal sensitivity. Data were gathered from 110 mothers and their 7-month-old infants. Mothers were exposed to either an acute stress task or a control task, after which they engaged in the still-face paradigm, a face-to-face interaction where maternal sensitivity was measured. Chronic maternal stress was assessed using the UCLA Life Stress Interview during the third trimester of pregnancy. The results revealed that among mothers exposed to the stress condition, those with higher chronic stress levels in the previous six months displayed significantly lower sensitivity during the still-face paradigm compared to those with lower chronic stress. Notably, past stress levels had no effect on maternal sensitivity in the control condition. These findings suggest a moderating effect of chronic stress on maternal caregiving behavior, with higher prenatal stress diminishing a mother’s ability to cope with acute parenting-related stressors in the present. The mechanisms behind this may involve changes in stress reactivity pathways, such as the hypothalamic-pituitary-adrenal (HPA) axis or altered emotion regulation strategies developed in response to chronic stress. Understanding these pathways could guide targeted interventions for mothers who may be more vulnerable to stress, improving caregiving outcomes.

Keywords: acute stress, maternal stress, prenatal stress, still-face paradigm

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Authors: Xue Bai, Ranran He, Chang Liu

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Care planning before the onset of intensive care needs can benefit older adults’ psychological well-being and increases families’ ability to manage caregiving crises and cope with care transitions. Effective care planning requires collaborative ‘team-work’ in families. However, future care planning has not been substantially examined in intergenerational or family contexts, let alone among immigrant families who have to face particular challenges in parental caregiving. From a family systems perspective, this study intends to explore the extent, processes, and contents of intergenerational care planning of Mainland immigrant ageing families in Hong Kong and to examine the intergenerational congruence and discrepancies in the care planning process. Adopting a qualitative research design, semi-structured in-depth interviews were conducted with 17 adult child-older parent pairs and another 33 adult children. In total, 50 adult children who migrated to Hong Kong after the age of 18 with more than three years’ work experience in Hong Kong had at least one parent aged over 55 years old who was not a Hong Kong resident and considered his/herself as the primary caregiver of the parent were recruited. Seventeen ageing parents of the recruited adult children were invited for dyadic interviews. Scarcity of caregiving resources in the context of cross-border migration, intergenerational discrepancies in care planning stages, both generations’ struggle and ambivalence toward filial care, intergenerational transmission of care values, and facilitating role of accumulated family capital in care preparation were primary themes concluded from participants’ narratives. Compared with ageing parents, immigrant adult children generally displayed lower levels of care planning. Although with a strong awareness of parents’ future care needs, few adult children were found engaged in concrete planning activities. This is largely due to their uncertainties toward future life and career, huge work and living pressure, the relatively good health status of their parents, and restrictions of public welfare policies in the receiving society. By contrast, children’s cross-border migration encouraged ageing parents to have early and clear preparation for future care. Ageing parents mostly expressed low filial care expectations when realizing the scarcity of family caregiving resources in the cross-border context. Even though they prefer in-person support from children, most of them prepare themselves for independent ageing to prioritize the next generation’s needs or choose to utilize paid services, welfare systems, friend networks, or extended family networks in their sending society. Adult children were frequently found caught in the dilemma of desiring to provide high quality and in-person support for their parents but lacking sufficient resources. Notably, a salient pattern of intergenerational transmission in terms of family and care values and ideal care arrangement emerged from intergenerational care preparation. Moreover, the positive role of accumulated family capital generated by a reunion in care preparation and joint decision-making were also identified. The findings of the current study will enhance professionals’ and service providers’ awareness of intergenerational care planning in cross-border migration contexts, inform services to alleviate unpreparedness for elderly care and intergenerational discrepancies concerning care arrangements and broaden family services to encompass intergenerational care planning interventions. Acknowledgment: This study is supported by a General Research Grant from the Research Grants Council of the HKSAR, China (Project Number: 15603818).

Keywords: intergenerational care planning, mainland immigrants in Hong Kong, migrant family, older adults

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Authors: Antonio Lopez-Villegas, Rafael Bautista-Mesa, Emilio Robles-Musso, Daniel Catalan-Matamoros, Cesar Leal-Costa

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Objectives: The purpose of this trial was to evaluate the burden borne by and the costs to informal caregivers of users with telemonitoring of pacemakers. Methods: This is a controlled, non-randomised clinical trial, with data collected from informal caregivers, five years after implantation of pacemakers. The Spanish version of the Survey on Disabilities, Personal Autonomy, and Dependency Situations was used to get information on clinical and social characteristics, levels of professionalism, duration and types of care, difficulties in providing care, health status, economic and job aspects, impact on the family or leisure due to informal caregiving for patients with pacemakers. Results: After five years of follow-up, 55 users with pacemakers finished the study. Of which, 50 were helped by a caregiver, 18 were included in the telemonitoring group (TM) and 32 in the conventional follow-up group (HM). Overall, females represented 96.0% of the informal caregivers (88.89% in TM and 100.0% in HM group). The mean ages were 63.17 ± 15.92 and 63.13 ± 14.56 years, respectively (p = 0.83) in the groups. The majority (88.0%) of the caregivers declared that they had to provide their services between 6 and 7 days per week (83.33% in TM group versus 90.63% in HM group), without significant differences between both groups. The costs related to care provided by the informal caregivers were 47.04% higher in the conventional follow-up group than in the TM group. Conclusions: The results of this trial confirm that there were no significant differences between the informal caregivers regarding to baseline characteristics, workload and time worked in both groups of follow-up. The costs incurred by the informal caregivers providing care for users with pacemakers included in telemonitoring group are significantly lower than those in the conventional follow-up group. Trial registration: ClinicalTrials.gov NCT02234245. Funding: The PONIENTE study, has been funded by the General Secretariat for Research, Development and Innovation, Regional Government of Andalusia (Spain), project reference number PI/0256/2017, under the research call 'Development and Innovation Projects in the Field of Biomedicine and Health Sciences', 2017.

Keywords: costs, disease burden, informal caregiving, pacemaker follow-up, remote monitoring, telemedicine

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Authors: Ekaterina Reznikova

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The paper provides an overview of the comparative analysis of legal novelties on telework in Portugal and Spain from a gender perspective. Telework, defined as the practice of working remotely using information and communication technologies, has gained increased attention in recent years, particularly in the context of the COVID-19 pandemic. As countries implement legal frameworks to regulate telework, it is essential to assess their gender implications and their impact on promoting gender equality in the workplace. In Portugal, legal novelties on telework have been introduced through various legislative measures, including the Telework Regulation Act (Lei do Teletrabalho) enacted in 2018. This legislation aims to provide a framework for telework arrangements, outlining rights and obligations for both employers and employees. However, the gender perspective in Portugal's telework regulations remains somewhat limited, with few explicit provisions addressing gender disparities in telework participation or the unequal distribution of caregiving responsibilities. In contrast, Spain has taken a more proactive approach to addressing gender equality in telework through its legal novelties. The Spanish government passed the Royal Decree-Law 28/2020, which introduced significant reforms to telework regulations in response to the COVID-19 pandemic. This legislation includes provisions aimed at promoting gender equality in telework, such as measures to ensure work-life balance and prevent discrimination based on gender in telework arrangements. Additionally, Spain has implemented initiatives to encourage "joint responsibility" at home, emphasizing the importance of shared caregiving duties between men and women. By comparing the legal novelties on telework in Portugal and Spain from a gender perspective, this study aims to identify best practices and areas for improvement in promoting gender equality in telework arrangements. Through a comprehensive analysis of the legal frameworks, this study will assess the extent to which Portugal and Spain's telework regulations address gender disparities and support the advancement of women in the workforce. The findings of this comparative analysis will have significant implications for policymakers, employers, and other stakeholders involved in shaping telework policies. By identifying effective strategies for promoting gender equality in telework, this study seeks to contribute to the development of inclusive and sustainable work environments that benefit all employees, regardless of gender.

Keywords: telework, labour law, digitalization, gender

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Authors: Elzbieta Sikorska-Simmons

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Dementia is a progressive terminal disease. Despite this recognition, research shows that most family caregivers do not know it, and it is unclear how this knowledge affects the quality of patient care. The aim of this qualitative study of 20 family caregivers for patients with advanced dementia is to examine how the caregiver's knowledge about dementia affects the quality of patient care in the context of healthcare decision-making, advanced care planning, and access to adequate support systems. Knowledge about dementia implies family caregivers' understanding of dementia trajectories, common symptoms/complications, and alternative treatment options (e.g., comfort feeding versus tube feeding). Data were collected in semi-structured interviews with 20 family caregivers. The interviews were conducted in person by the author and designed to elicit rich descriptions of family caregivers' experiences with healthcare decision-making and the management of common symptoms/complications of end-stage dementia as patient healthcare proxies. The study findings suggest that caregivers who recognize that dementia is a terminal disease are less likely to opt for life-extending treatments during the advanced stages. They are also more likely to seek palliative/hospice care, and consequently, they are better able to avoid unnecessary hospitalizations or medical procedures. For example, those who know that dementia is a terminal disease tend to opt for "comfort feeding" rather than "tube feeding" in managing the swallowing difficulties that accompany advanced dementia. In the context of advance care planning, family caregivers who know that dementia is a terminal disease tend to have more meaningful advance directives (e.g., Power of Attorney and Do Not Resuscitate orders). They are better prepared to anticipate common problems and pursue treatments that foster the best quality of patient life and care. Greater knowledge about advanced dementia helps them make more informed decisions that focus on enhancing the quality of patient life rather than just survival. In addition, those who know that dementia is a terminal disease are more likely to establish adequate support systems to help them cope with the complex demands of caregiving. For example, they are more likely to seek dementia-oriented primary care programs that offer house visits or respite services. Based on the study findings, knowledge about dementia as a terminal disease is critical in the optimal management of patient care needs and the establishment of adequate support systems. More research is needed to better understand what caregivers need to know to better prepare them for the complex demands of dementia caregiving.

Keywords: dementia education, family caregiver, management of dementia, quality of care

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Authors: Jessica Ding

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The field of global health is currently advocating for a resurgence in the use of traditional medicines to improve people-centered care. Healthcare policies are rapidly changing in response; in China, the increasing presence of TCM in the same spaces as biomedicine has led to a new term: integrative medicine. However, the existence of TCM as a part of integrative medicine creates a pressing paradoxical tension where TCM is both seen as a marginalized system within ‘modern’ hospitals and as a modality worth integrating. Additionally, the impact of such shifts has not been fully explored: the World Health Organization for one focuses only on three angles —practices, products, and practitioners— with regards to traditional medicines. Through ten weeks of fieldwork conducted at an urban hospital in Shanghai, China, this research expands the perspective of existing strategies by looking at integrative care through a fourth lens: patients and families. The understanding of self-care, health-seeking behavior, and non-professional caregiving structures are critical to grasping the significance of traditional medicine for people-centered care. Indeed, those individual and informal health care expectations align with the very spaces and needs that traditional medicine has filled before such ideas of integration. It specifically looks at this issue via three processes that operationalize experiences of care: (1) how aspects of TCM are valued within integrative medicine, (2) how negotiations of care occur between patients and doctors, and (3) how 'good quality' caregiving presents in integrative clinical spaces. This research hopes to lend insight into how culturally embedded traditions, bureaucratic and institutional rationalities, and social patterns of health-seeking behavior influence care to shape illness experiences at the intersection of two medical modalities. This analysis of patients’ clinical and illness experiences serves to enrich the narratives of integrative medical care’s ability to provide patient-centered care to determine how international policies are realized at the individual level. This anthropological study of the integration of Traditional Chinese medicine in local contexts can reveal the extent to which global strategies, as promoted by the WHO and the Chinese government actually align with the expectations and perspectives of patients receiving care. Ultimately, this ethnographic analysis of a local Chinese context hopes to inform global policies regarding the future use and integration of traditional medicines.

Keywords: emergent systems, global health, integrative medicine, traditional Chinese medicine, TCM

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Authors: Mei Li, Victor Meddalena

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Background: Newfoundland and Labrador (NL) has rapidly aging population and is characterized by its vast geography with high proportion of dispersed rural communities when compared to other provinces in Canada. Structural, demographic and geographic factors have created big gaps for rural residents across NL with respect to accessing various health and social services. While the barriers are well documented for patients’ access to cancer care in rural and remote areas, challenges faced by family caregivers are not fully recognized. Caregiving burden coupled with challenges associated with relocation and frequent travels create situations where caregivers are vulnerable physically, emotionally, financially and socially. This study examines the experiences of family caregivers living in rural NL through a social justice lens. It is expected to identify the gaps existing in social policy and support for rural family caregivers. It will make a novel contribution to the literature in this regard. Methods: Design: This qualitative study adopted the hermeneutic phenomenology to best describe and interpret rural-based family caregivers’ living experiences and explore the meaning, impact, and the influence of both individual experience and contextual factors shaping these experiences. Data Collection: In-depth interviews with key informants were conducted with 12 participants from various rural communities in NL. A case study was also used to explore an individual’s experience in complex social units consisting of multiple variables of in-depth understanding of the reality. Data Analysis: Thematic analysis guided by the Voice-Centred Relational (VCR) method was employed to explore the relationships and contexts of participants. Emerging Themes: Six major emerging themes were identified, namely, overwhelming caregiving burden on rural family caregivers, long existing financial hardship, separation from family and community, low level of social support and self-reliance coping strategies, and social vulnerability and isolation. Conclusion: Understanding the lived experiences of rural-based family caregivers is critical to inform the policy makers the gap of health and social service in NL. The findings of this study also have implications for family caregivers who are vulnerable in other similar contexts. This study adds innovative insights for policy making and service provision in this regard.

Keywords: family caregivers, policy, relocation, rural

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Authors: V. Howard, R. Maguire, S. Corrigan

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Background: Type 1 Diabetes (T1D) is a chronic autoimmune disease, typically diagnosed in childhood. T1D puts an enormous strain on families; controlling blood-glucose in children is difficult and the consequences of poor control for patient health are significant. Successful illness management and better health outcomes can be dependent on quality of caregiving. On diagnosis, parent-caregivers face a steep learning curve as T1D care requires a significant level of knowledge to inform complex decision making throughout the day. The majority of illness management is carried out in the home setting, independent of clinical health providers. Parent-caregivers vary in their level of knowledge and their level of engagement in applying this knowledge in the practice of illness management. Enabling researchers to quantify these aspects of the caregiver experience is key to identifying targets for psychosocial support interventions, which are desirable for reducing stress and anxiety in this highly burdened cohort, and supporting better health outcomes in children. Currently, there are limited tools available that are designed to capture this information. Where tools do exist, they are not comprehensive and do not adequately capture the lived experience. Objectives: Development of quantitative tools, informed by lived experience, to enable researchers gather data on parent-caregiver knowledge and engagement, which accurately represents the experience/cohort and enables exploration of questions that are of real-world value to the cohort themselves. Methods: This research employed an engaged approach to address the problem of quantifying two key aspects of caregiver diabetes management: Knowledge and engagement. The research process was multi-staged and iterative. Stage 1: Working from a constructivist standpoint, literature was reviewed to identify relevant questionnaires, scales and single-item measures of T1D caregiver knowledge and engagement, and harvest candidate questionnaire items. Stage 2: Aggregated findings from the review were circulated among a PPI (patient and public involvement) expert panel of caregivers (n=6), for discussion and feedback. Stage 3: In collaboration with the expert panel, data were interpreted through the lens of lived experience to create a long-list of candidate items for novel questionnaires. Items were categorized as either ‘knowledge’ or ‘engagement’. Stage 4: A Delphi-method process (iterative surveys) was used to prioritize question items and generate novel questions that further captured the lived experience. Stage 5: Both questionnaires were piloted to refine wording of text to increase accessibility and limit socially desirable responding. Stage 6: Tools were piloted using an online survey that was deployed using an online peer-support group for caregivers for Juveniles with T1D. Ongoing Research: 123 parent-caregivers completed the survey. Data analysis is ongoing to establish face and content validity qualitatively and through exploratory factor analysis. Reliability will be established using an alternative-form method and Cronbach’s alpha will assess internal consistency. Work will be completed by early 2024. Conclusion: These tools will enable researchers to gain deeper insights into caregiving practices among parents of juveniles with T1D. Development was driven by lived experience, illustrating the value of engaged research at all levels of the research process.

Keywords: caregiving, engaged research, juvenile type 1 diabetes, quantified engagement and knowledge

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