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This chapter explores the approach of the CJEU and the ECtHR to the highly contentious topic of surrogacy in order to unravel the understanding of motherhood endorsed by these two European courts. It shows that legal motherhood continues to be tied to gestation and birth, thus placing intended mothers in a precarious legal position, especially compared to intended (genetic) fathers. As part of its effort to explain this gender imbalance, the chapter uses the experience of surrogacy as a window for a broader discussion on the gender of legal fictions governing the attribution of parenthood. Whilst the rule mater semper certa est remains one of the most immutable facts of European family laws, legal systems have generally demonstrated a certain flexibility and attention to context in determining legal fatherhood, at times departing from the marital presumption. The chapter argues that this differential attitude reflects a long-standing socio-legal resistance to breaking the continuum gestation-motherhood-caregiving, and aligns with the gendered and higher expectations that legal systems place on mothers compared to fathers.
Internationally, stresses related to the COVID-19 pandemic negatively affected the mental health of family caregivers of adults with intellectual and developmental disabilities (IDDs).
Aims
This cross-sectional study investigated demographic, situational and psychological variables associated with mental wellbeing among family caregivers of adults with IDDs during the COVID-19 pandemic.
Method
Baseline data from 202 family caregivers participating in virtual courses to support caregiver mental well-being were collected from October 2020 to June 2022 via online survey. Mental well-being was assessed using total scores from the Warwick-Edinburgh Mental Wellbeing Scale. Demographic, situational and psychological contributors to mental well-being were identified using hierarchical regression analysis.
Results
Variables associated with lower levels of mental well-being were gender (women); age (<60 years old); lack of vaccine availability; loss of programming for their family member; social isolation; and low confidence in their ability to prepare for healthcare, support their family member's mental health, manage burnout and navigate healthcare and social systems. Connection with other families, confidence in managing burnout and building resilience and confidence in working effectively across health and social systems were significant predictors of mental well-being in the final regression model, which predicted 55.6% of variance in mental well-being (P < 0.001).
Conclusions
Family caregivers need ways to foster social connections with other families, and support to properly utilise healthcare and social services during public health emergencies. Helping them attend to their needs as caregivers can promote their mental health and ultimately improve outcomes for their family members with disabilities.
As demographics and gender norms shift, more older men will be providing care for their wives living with dementia than ever before. Research on husbands as caregivers is limited and offers an incomplete picture of their role development and how they experience caregiving. This study examined husbands whose wives have dementia and how they provide care and construct their sense of self. Semi-structured interviews with 11 men aged 61–88 were conducted in Ontario, Canada. Data were analyzed using constant comparison analysis and a constructivist grounded theory (CGT) approach. Two categories were developed: Adapting to the Role of Caregiver and Staying a Husband. Caregiving as a husband for a wife living with dementia required revision of the role of husband to include that of caregiver by reimaging intimacy, being a protector in new ways, and finding new meanings to being a provider and the value of wealth.
To explore the lived experience of informal dementia caregivers during the COVID-19 pandemic.
Methods:
Interpretative Phenomenological Analysis (IPA) was employed. Eight primary informal caregivers were recruited from a community mental health service for older people when attending in their role as caregiver of a service-user. Semi-structured interviews were conducted at home or in the clinic based on the participants’ convenience and preference. IPA was completed following Smith and colleagues framework for analysis.
Results:
Six group experiential themes, each with a number of subthemes, emerged from the cross-case interpretative analysis: the ambivalent experience of caregiving (subtheme: those complex emotional experiences); navigating lockdown: lived challenges and opportunities (subthemes: the pervasive fear, intensification of existing struggles, being prevented from caring for a loved one, and lockdown as a time for opportunity); transitioning out of lockdown (subthemes: regaining freedom, but restricted freedom after all and being in a lockdown of one’s own); the present with COVID-19, but mostly with dementia (subthemes: dementia, a disease that does not pause, and ‘takeaways’ from the journey); looking into the future (subthemes: embracing COVID-19 and the true needs); and a word on coping (subtheme: managing it all as best one can).
Conclusion:
Findings demonstrate the significance of the meaning caregivers ascribed to their experiences on their wellbeing and ability to cope in times of COVID-19 and thereafter. Gaining an understanding of the caregivers’ unique experiences is crucial to appreciate how to best support them.
In this chapter, we reflect on how different disciplines have conceptualised ‘early life’ with particular insights from evolutionary, social, and medical anthropology to challenge and further expand the narrow framing of a Developmental Origins of Health and Disease (DOHaD) focus and to show the scope of a biosocial perspective. First, we introduce how childhood and early life have been studied in anthropology, followed by a discussion on how early life has been conceptualised in public health, lifecourse, and development research. We then discuss how concepts of early life may impact caregiving practice and childhood environments, which in turn impacts research on early life itself, with longitudinal birth cohort studies as an example. We highlight the need for critical and reflective thinking about the ways in which we do biosocial research, and the impact it has on our understanding of the DOHaD. We suggest that a reflexively engaged biosocial anthropological dialogue around research on early life broadens the scope of cross-disciplinary work, engages with the complex and dynamic process of childhood development, and contributes to a more nuanced framework of early life for DOHaD-informed research and health practice.
We evaluated stress and burden in epilepsy patient caregivers in a pediatric neurology clinic. Caregivers of 102 children with epilepsy completed the Caregivers’ Assessment of Difficulty Index and a questionnaire regarding caregiver sociocultural characteristics. A multiple linear regression statistical analysis found that caregiver burden was significantly increased for those who had a second child with a chronic disease, sole caregivers and for those with children with drug-resistant epilepsy. Caregiver stress was significantly increased for caregivers with a native language other than English or French, caregivers who had a second child with a chronic disease and sole caregivers.
Immigrant caregivers support the aging population, yet their own needs are often neglected. Mobile technology-facilitated interventions can promote caregiver health by providing easy access to self-care materials.
Objective
This study employed a design thinking framework to examine Chinese immigrant caregivers’ (CICs) unmet self-care needs and co-design an app for promoting self-care with CICs.
Methods
Nineteen semi-structured interviews were conducted in conceptual design and prototype co-design phases.
Findings
Participants reported unmet self-care needs influenced by psychological and social barriers, immigrant status, and caregiving tasks. They expressed the need to learn to keep healthy boundaries with the care recipient and respond to emergencies. Gaining knowledge was the main benefit that drew CICs’ interest in using the self-care app. However, potential barriers to use included issues of curriculum design, technology anxiety, limited free time, and caregiving burdens.
Discussion
The co-design process appears to be beneficial in having participants voice both barriers and preferences.
Post-traumatic stress symptoms (PTSS) were the most frequently reported mental health concern for youth during COVID-19, yet variations in youth's PTSS responses warrant empirical consideration. Features of the caregiving environment influence youth's responses to environmental stressors, and youth's parasympathetic nervous system regulation may qualify the magnitude and/or direction of these effects. This prospective investigation evaluated diathesis stress and differential susceptibility models of caregiving and parasympathetic influences on youth's PTSS responses to COVID-19.
Method
Participants were 225 caregiver-youth dyads (youth 49.8% female at birth; 88.4% non-white) followed from childhood through adolescence and COVID-19. Youth's resting respiratory sinus arrhythmia (RSA; Mage = 6.11, s.d. = 0.21), caregiving features (i.e. attachment security [youth Mage = 12.24, s.d. = 0.35] and caregiver internalizing psychopathology [caregiver Mage = 39.29, s.d. = 6.78]) were assessed pre-pandemic. Youth's PTSS was assessed one year prior to the US COVID-19 pandemic (Mage = 14.24, s.d. = 0.50) and during the spring of 2020 at the height of the pandemic (Mage = 15.23, s.d. = 0.57).
Results
Youth's PTSS increased during COVID-19. Youth with relatively high resting RSA evidenced the lowest PTSS when their caregiving environment featured high attachment security or low caregiver internalizing problems, but the highest PTSS when their caregiving environment featured low attachment security or high caregiver internalizing problems. In contrast, PTSS levels of youth with relatively low or average resting RSA did not differ significantly depending on attachment security or caregiver internalizing.
Conclusions
Results are consistent with a differential susceptibility hypothesis, wherein relatively high resting RSA conferred heightened sensitivity to caregiving environments in a for-better-and-for-worse manner during COVID-19.
La qualité des soins apportés aux personnes vivant avec la maladie d’Alzheimer (MA) dépend en partie de la capacité des professionnels à déterminer le degré de conscience de la maladie chez les patients. La présente recherche s’est intéressée aux représentations des soignants concernant la conscience des troubles chez les résidents d’établissements de soins de longue durée présentant un diagnostic de MA. Le pouvoir prédicteur de l’anosognosie sur le fardeau soignant a également été examiné. L’anosognosie des troubles de la construction (r = 0,40, p = 0,0164) et de l’initiation (r = 0,32, p = 0,052) était corrélée au fardeau soignant. Les professionnels se représentaient les résidents comme ayant une conscience altérée de leurs capacités, même en l’absence d’anosognosie. Les scores réels d’anosognosie ne prédisaient pas les estimations soignantes, hormis le score global sous forme de tendance (χ2 = 3,38, p = 0,066). Les soignants surestimaient pourtant les performances cognitives des résidents, telles que mesurées au moyen du protocole Misawareness (prédictions aidants/performances réelles : DC = 12,32, p < 0,0001).
The interdisciplinary field of developmental psychopathology has made great strides by including context into theoretical and empirical approaches to studying risk and resilience. Perhaps no context is more important to the developing child than their relationships with their caregivers (typically a child’s parents), as caregivers are a key source of stimulation and nurturance to young children. Coupled with the high degree of brain plasticity in the earliest years of life, these caregiving relationships have an immense influence on shaping behavioral outcomes relevant to developmental psychopathology. In this article, we discuss three areas within caregiving relationships: (1) caregiver–child interactions in everyday, naturalistic settings; (2) caregivers’ social cognitions about their child; and (3) caregivers’ broader social and cultural context. For each area, we provide an overview of its significance to the field, identify existing knowledge gaps, and offer potential approaches for bridging these gaps to foster growth in the field. Lastly, given that one value of a scientific discipline is its ability to produce research useful in guiding real-world decisions related to policy and practice, we encourage developmental psychopathology to consider that a focus on caregiving, a modifiable target, supports this mission.
This study aimed to explore the prevalence of suicidal thoughts and potential associations (i.e., strength and direction) with caregiver characteristics or factors. A targeted survey was distributed to dementia caregivers aged 55+ years. Questions concerning psychological distress, suicidal thoughts while caregiving and antecedents of suicidal behaviours were administered. A sample of 71 French-speaking Canadian caregivers completed the survey between May and October 2019. Among them, 52.1 per cent (n = 37) reported suicidal ideation while providing care to a relative or a friend living with dementia. Caregivers who presented suicidal ideation reported more abusive behaviour toward the care recipient. Caregivers who reported suicidal thoughts were significantly more distressed than caregivers without them on measures of burden, depression, and anxiety. Suicidal thoughts in caregivers are important evaluation targets, primarily for the prevention of suicide, but also because caregivers who report suicidal thoughts also present a heightened risk for abusing the care recipient.
More than 1.5 million people have been diagnosed with dementia in Russia. Although we have all the necessary doctors and medicines, there is no clear, expert-approved special care system for people with dementia: caregivers do not have a manual for working with people with cognitive impairments. Our adapted web-guide and mobile application aim to educate professional and informal caregivers, and society about the principles of taking care for people with dementia, it’s any age prevention, creating an environment of equality.
The objective of this study is to explore the level of raising awareness of the Russian society about dementia after the implementation of our digital technologies.
Methods:
Conducting an in-depth expert interview and a focus group with caregivers who got acquainted with the adapted ISupport guide were applied in order to evaluate the appropriateness of care practice for people with dementia in terms of medical standards and to uncover practical infelicities and improve them. Collected data and respondent’s replies analyses, content-analysis that we made became the basic principles of our new application. The quantitative method allows us to track user activity and assess the level of social involvement in dementia issues. Moreover, we have collected caregivers' opinions after they used our application and web-version for the first time by virtue of a qualitative method.
Results:
We have reached various aims during our ISupport implementation and working on the research project. First, the number of users of our mobile application is steadily growing (+ 4 people per day at the launch stage). Second, we have received a lot of feedback about our ISupport web version: “it is easy to use; it has a good design, sipid content and a logical structure, which in turn facilitates the process of caring for a person with dementia. Third, medical experts approved our adaptation, web-version and mobile application and recommended it for use in Russian-speaking countries.
Conclusion:
we have come to both theoretical and practical results of ISupport implementation in Russia and successfully launched two digital projects. Thanks to the work we have done the dementia issue in Russia will become more popular among society and will prevent the disease of thousands of people.
For nineteenth-century British novels, illness did not exist just within the individual body; illness occurred at the level of communities. Responding to and building upon contemporary medicine’s focus on the social contexts of disease, novels of this era enlarge their plot structures to include more characters, more relationships, and more scopes of action than existed in novels before this century. In nineteenth-century novels, the collective experience of illness can be as intimate as the bonds between a sufferer and a caregiver or as diffuse as a global pandemic. In any case, illness revealed one’s embeddedness in larger structures of meaning. The formal characteristics of Victorian novels offer ways for critical medical humanities today to envision the social ties involved in the illness experience.
At a time in U.S. politics when advocacy groups are increasingly relying on supporters to help advance their agendas, this chapter considers how intersectional advocates are mobilizing their supporters in Chapter 6. While membership in women’s advocacy organizations has decreased over the years, supporters that volunteer their time to advocacy organizations to advance their policy goals has been largely overlooked. Yet, these supporters are important contributors to intersectional advocacy. In Chapter 6, two original survey experiments are presented with the supporters from this organization that also engages in intersectional advocacy. Each experiment contain authentic policy platforms that either present an intersectional advocacy approach or a traditional single issue policy approach to supporters. The findings from these experiments answer the final question: does intersectional advocacy resonate with the intersectionally marginalized populations it aims to serve, and if so, to what extent does it mobilize them to participate in the policymaking process? This chapter highlights the role of supporters in advancing these policy efforts while showcasing tangible
The COVID-19 pandemic has been devastating for people living with dementia (PLWD) and their caregivers. While prior research has documented these effects, it has not delved into their specific causes or how they are modified by contextual variation in caregiving circumstances.
The former South West Local Health Integration Network (SW LHIN) of Ontario, which is in a predominantly rural region, regularly reports the lowest rates of caregiver distress in the province. Caregivers from rural communities regularly face challenges related to the access, applicability, and availability of supports and services, This qualitative case study describes perspectives of caregiving from the region, and explores how role construction and expectations of caregivers might both mitigate distress and influence service support use. Thematic analysis identified five themes: anticipated care, gendered caring, service support assumptions, confidence in community, and the “line in the sand”: care decisions for evolving needs. Using the lens of caregiver identity theory, the findings suggest that these caregivers conceptualize identity as an extension of their primary role, to include caregiving obligations and responsibilities. We also noted a steadfast confidence in community and perceived service support assumptions across the region, with no notable rural–urban divide.
Black Women’s Mothering and Caregiving explores Black women as parental and family caregivers and caregiving as a source of joy and yet burden in Black women’s lives. We discuss contemporary challenges of Black women as caregivers, including their fears and anxieties about present conditions that create risks for Black children and adolescents. Such conditions include stereotypes, institutional biases around educational achievement, violence, police aggression, and the need to juggle professional and domestic responsibilities. Finally, this chapter offers strategies to help Black women manage and balance their caregiving roles and responsibilities.
In March 2020, the Government of Ontario, Canada implemented public health measures, including visitor restrictions in institutional care settings, to protect vulnerable populations, including older adults (> 65 years), against COVID-19 infection. Prior research has shown that visitor restrictions can negatively influence older adults’ physical and mental health and can cause increased stress and anxiety for care partners. This study explores the experiences of care partners separated from the person they care for because of institutional visitor restrictions during the COVID-19 pandemic. We interviewed 14 care partners between the ages of 50 and 89; 11 were female. The main themes that emerged were changing public health and infection prevention and control policies, shifting care partner roles as a result of visitor restrictions, resident isolation and deterioration from the care partner perspective, communication challenges, and reflections on the impacts of visitor restrictions. Findings may be used to inform future health policy and system reforms.
With the tremendous growth of people over age 65—10,000 people a day cross that marker—it is expected that in the next 20 years nearly every middle-aged person will be caregiving someone. Few have any idea what lies ahead. No clear charted course. Takes a toll, mentally and physically. Caregivers need help too. Chapter describes Seven Core Strategies that can provide the support and renewal caregivers need throughout their journey. Look for outside help. Find a support group. Figure out a self-care plan, and do it. Enlist outside help for your loved one’s physical needs. Maintain your own health. Make time to reflect on your situation. Find your team. The greatest comfort you can know is that you have cared, you have invested yourself, and that you have loved.
Older adults who experience social isolation are at as high risk of dying as those who smoke 15 cigarettes daily or drink more than 6 alcoholic drinks per day. Human beings are social creatures who need collaborative groups. But as we age, those groups become smaller in number. Social isolation sneaks up on us over many years. At least ¼ of older adults in US report feeling isolated. Men who are socially isolated die of an accident or suicide at twice the rate of those not socially isolated, and have far greater risk of heart attack and stroke. Both isolated men and women have higher rates of dementia. Chapter outlines seven actions to help prevent social isolation: Seek out social interaction! (Book clubs; Museum docent; volunteer to read to children.) Reach out to cultural and ethnic groups unfamiliar to you. Take advantage of home-based care. Own a pet. Maintain a healthy self-image. Consider co-housing. Reach out and connect with others.