Search results for: BPS in caregiving
Commenced in January 2007
Frequency: Monthly
Edition: International
Paper Count: 65

Search results for: BPS in caregiving

35 Prevalence and Correlates of Anxiety and Depression among Family Carers of Cancer

Authors: Godfrey Katende, Lillian Nakimera

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The process of caregiving may cause emotional distress in form of anxiety and depression among family carers of cancer patients. Little is known about the prevalence anxiety and depression among family carers of cancer patients in Uganda. This cross-sectional study aimed to determine the prevalence of anxiety and depression among family carers of cancer patients and related factors associated with abnormal levels of anxiety and depression. A total of 119 family carers from Uganda Cancer Institute (UCI) were assessed by the Hospital Anxiety and Depression Scale (HADS) standardized questionnaire. The prevalence of anxiety and depression among family carers was high (45% and 26 % respectively); (2) abnormal levels of anxiety (ALA) and depression (ALD) was significantly associated with being a relative carer. Incorporating evidence based psychological therapies targeting family carers into usual care of cancer patients is imperative.

Keywords: anxiety, cancer, carer, cross-sectional design, depression, Uganda

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34 Chronic Care Management for the Medically Vulnerable during the Pandemic: Experiences of Family Caregivers of Youth with Substance Use Disorders in Zambia

Authors: Ireen Manase Kabembo, Patrick Chanda

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Background: Substance use disorders are among the chronic conditions that affect all age groups. Worldwide, there is an increase in young people affected by SUDs, which implies that more family members are transitioning into the caregiver role. Family caregivers play a buffering role in the formal healthcare system due to their involvement in caring for persons with acute and chronic conditions in the home setting. Family carers of youth with problematic alcohol and marijuana use experience myriad challenges in managing daily care for this medically vulnerable group. In addition, the poor health-seeking behaviours of youth with SUDs characterized by eluding treatment and runaway tendencies coupled with the effects of the pandemic made caregiving a daunting task for most family caregivers. Issues such as limited and unavailable psychotropic medications, social stigma and discrimination, financial hurdles, systemic barriers in adolescent and young adult mental healthcare services, and the lack of a perceived vulnerability to Covid-19 by youth with SUDs are experiences of family caretakers. Methods: A qualitative study with 30 family caregivers of youth aged 16-24 explored their lived experiences and subjective meanings using two in-depth semi-structured interviews, a caregiving timeline, and participant observation. Findings: Results indicate that most family caregivers had challenges managing care for treatment elusive youth, let alone having them adhere to Covid-19 regulations. However, youth who utilized healthcare services and adhered to treatment regimens had positive outcomes and sustained recovery. The effects of the pandemic, such as job losses and the closure of businesses, further exacerbated the financial challenges experienced by family caregivers, making it difficult to purchase needed medications and daily necessities for the youth. The unabated stigma and discrimination of families of substance-dependent youth in Zambian communities further isolated family caregivers, leaving them with limited support. Conclusion: Since young people with SUDs have a compromised mental capacity due to the cognitive impairments that come with continued substance abuse, they often have difficulties making sound judgements, including the need to utilize SUD recovery services. Also, their tendency to not adhere to the Covid-19 pandemic requirements places them at a higher risk for adverse health outcomes in the (post) pandemic era. This calls for urgent implementation of robust youth mental health services that address prevention and recovery for these emerging adults grappling with substance use disorders. Support for their family caregivers, often overlooked, cannot be overemphasized.

Keywords: chronic care management, Covid-19 pandemic, family caregivers, youth with substance use disorders

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33 Attachment Systems and Psychotherapy: An Internal Secure Caregiver to Heal and Protect the Parts of Our Clients: InCorporer Method

Authors: Julien Baillet

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In light of 30 years of scientific research, InCorporer Method was created in 2019 as a new approach to heal traumatic, developmental, and dissociative injuries. Following natural nervous system functions, InCorporer aims to heal, develop, and update the different defensive mammalian subsystems: fight, flight, freeze, feign death, cry for help, & energy regulator. The dimensions taken into account are: (i) Heal the traumatic injuries who are still bleeding, (ii) Develop the systems that never received the security, attention, and affection they needed. (iii) Update the parts that stayed stuck in the past, ignoring for too long that they are out of danger now. Through the Present Part and its caregiving skills, InCorporer method enables a balanced, soothed, and collaborative personality system. To be as integrative as possible, InCorporer method has been designed according to several fields of research, such as structural dissociation theory, attachment theory, and information processing theory. In this paper, the author presents how the internal caregiver is developed and trained to heal all the different parts/subsystems of our clients through mindful attention and reflex movement integration.

Keywords: PTSD, attachment, dissociation, part work

Procedia PDF Downloads 39
32 Strategies for Patient Families Integration in Caregiving: A Consensus Opinion

Authors: Ibrahim A. Alkali

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There is no reservation on the outstanding contribution of patient families in restoration of hospitalised patients, hence their consideration as essential component of hospital ward regimen. The psychological and emotional support a patient requires has been found to be solely provided by the patient’s family. However, consideration of their presence as one of the major functional requirements of an inpatient setting design have always been a source of disquiet, especially in developing countries where policies, norms and protocols of healthcare administration have no consideration for the patients’ family. This have been a major challenge to the hospital ward facilities, a concern for the hospital administration and patient management. The study therefore is aimed at obtaining a consensus opinion on the best approach for family integration in the design of an inpatient setting.  A one day visioning charrette involving Architects, Nurses, Medical Doctors, Healthcare assistants and representatives from the Patient families was conducted with the aim of arriving at a consensus opinion on practical design approach for sustainable family integration. Patient’s family are found to be decisive character of hospital ward regimen that cannot be undermined. However, several challenges that impede family integration were identified and subsequently a recommendation for an ideal approach. This will serve as a guide to both architects and hospital management in implementing much desired Patient and Family Centred Care.

Keywords: patient's family, inpatient setting, care giving, integration

Procedia PDF Downloads 182
31 Design of a Computer Vision Based Exercise Video Game for Senior Citizens

Authors: June Tay, Ivy Chia

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There are numerous changes, both mental and physical, taking place when people age. We need to understand the different aspects required for healthy living, including meeting nutritional needs, regular physical activities to keep agility, sufficient rest and sleep to have physical and mental well-being, social engagement to avoid the risk of social isolation and depression, and access to healthcare to detect and manage chronic conditions. Promoting physical activities for an ageing population is necessary as many may have enjoyed sedentary lifestyles for some time. In our study, we evaluate the considerations when designing a computer vision video game for the elderly. We need to design some low-impact activities, such as stretching and gentle movements, because some elderly individuals may have joint pains or mobility issues. The exercise game should consist of simple movements that are easy to follow and remember. It should be fun and enjoyable so that they can be motivated to do some exercise. Social engagement can keep the elderly motivated and competitive, and they are more willing to engage in game exercises. Elderly citizens can compare their game scores and try to improve them. We propose a computer vision-based video game for the elderly that will capture and track the movement of the elderly hand pushing a ball on the screen into a circle. It can be easily set up using a PC laptop with a webcam. Our video game adhered to the design framework we employed, and it encompassed ease of use, a simple graphical interface, easy-to-play game exercise, and fun gameplay.

Keywords: about computer vision, video games, gerontology technology, caregiving

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30 The Experiences of Hong Kong Chinese Divorced Wives in Facing the Cancer Death of Their Ex-Husbands

Authors: M. L. Yeung

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With the surge of divorce rate and male cancer onset/death rates, the phenomenon of divorced wives in the facing cancer death of their ex-husbands is not uncommon in Hong Kong. Yet, there is a dearth of study on the experiences of bereaved-divorced wives in the Hong Kong cultural context. This project fills the knowledge gap by conducting a qualitative study for having interviewed four bereaved ex-wives, who returned to ex-husbands’ end-of-life caregiving and eventually grieved for the ex-spousal’s death. From the perspectives of attachment theory and disenfranchised grief in the Hong Kong cultural context, a ‘double-loss’ experience is found in which interviewees suffer from the first loss of divorce and the second loss of ex-husbands’ death. Traumatic childhood experiences, attachment needs, role ambiguity, unresolved emotions and unrecognized grief are found significant in their lived experiences which alert the ‘double-loss’ is worthy of attention. Extending a family-centered end-of-life and bereavement care services to divorced couples is called for, in which validation on the attachment needs, ex-couple reconciliation, and acknowledgement on the disenfranchised grief are essential for social work practice on this group of clienteles specifically in Hong Kong cultural context.

Keywords: changing family, disenfranchised grief, divorce, ex-spousal death, marriage

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29 Pastoral Power, Early Modern Insurrections, and Contemporary Carelessness: What Foucault Can Teach Us about the “Crisis of Care”

Authors: Lucile Richard

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Contemporary thinkers studying biopolitics and its lethal logic find little interest in Foucault's "vague sketch of the pastorate.” Despite pastoral power being depicted as the matrix of governmentality in the genealogy of biopower, most post-Foucauldian theorists disregard its study. Sovereign power takes precedence in the examination of the governmental connection between care, violence, and death. Questioning this recurring motif, this article advocates for a feminist exploration of pastoral power. It argues that giving attention to the genealogy of the pastorate is essential to account for the carelessness that runs today's politics. Examining Foucault's understanding of this "power to care" uncovers the link between care work and politics, a facet of governmentality often overlooked in sovereignty-centered perspectives. His description of “pastoral insurrections”, in so far as it highlights that caring, far from being excluded from politics, is the object of competing problematizations, also calls for a more nuanced and complex comprehension of the politicization of care and care work than the ones developed by feminist theorists. As such, it provides an opportunity to delve into under-theorized dimensions of the "care crisis" in feminist accounts. On one hand, it reveals how populations are disciplined and controlled, not only through caregiving obligations, but also through being assigned or excluded from receiving care. On the other, it stresses that the organization of the public sphere is just as important as the organization of the private sphere, which is the main focus for most feminists, in preventing marginalized perspectives on caring from gaining political momentum.

Keywords: Foucault, feminist theory, resistance, pastoral power, crisis of care, biopolitics

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28 Effects of Training on Self-Efficacy, Competence, and Target Complaints of Dementia Family Support Program Facilitators

Authors: Myonghwa Park, Eun Jeong Choi

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Persons with dementia living at home have complex caregiving demands, which can be significant sources of stress for the family caregivers. Thus, the dementia family support program facilitators struggle to provide various health and social services, facing diverse challenges. The purpose of this study was to research the effects of training program for the dementia family support program facilitators on self-efficacy, competence, and target complaints concerning operating their program. We created a training program with systematic contents, which was composed of 10 sessions and we provided the program for the facilitators. The participants were 32 people at 28 community dementia support centers who manage dementia family support programs and they completed quantitative and qualitative self-report questionnaire before and after participating in the training program. For analyzing the data, descriptive statistics were used and with a paired t-test, pretest and posttest scores of self-efficacy, competence, and target complaints were analyzed. We used Statistical Package for the Social Sciences (SPSS) statistics (Version 21) to analyze the data. The average age of the participants was 39.6 years old and the 84.4% of participants were nurses. There were statistically meaningful increases in facilitators’ self-efficacy scores (t = -4.45, p < .001) and competence scores (t = -2.133, p = 0.041) after participating in training program and operating their own dementia family support program. Also, the facilitators’ difficulties in conducting their dementia family support program were decreased which was assessed with target complaints. Especially, the facilitators’ lack of dementia expertise and experience was decreased statistically significantly (t = 3.520, p = 0.002). Findings provided evidence of the benefits of the training program for facilitators to enhance managing dementia family support program by improving the facilitators’ self-efficacy and competence and decreasing their difficulties regarding operating their program.

Keywords: competence, dementia, facilitator, family, self-efficacy, training

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27 Working Memory in Children: The Relationship with Father-Child Rough-and-Tumble Play

Authors: Robinson, E. L., Freeman, E. E.

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Over the last few decades, the social movement of involved fatherhood has stimulated a research focus on fathers, leading to an increase in the body of evidence into the paternal contributions to child development. Past research has suggested that rough-and-tumble play, which involves wrestling, chasing and tumbling, is the preferred play type of western fathers. This type of play remains underutilized and underrepresented in child developmental research as it’s perceived to be dangerous or too aggressive. The limited research available has shown a relationship between high quality rough-and-tumble play interactions, lower childhood aggression and improved child emotional regulation. The aim of this study was to examine father-child rough-and-tumble play and assess the impact on cognitive development in children aged 4-7 years. Father-child dyads completed a 10-minute rough-and-tumble play interaction, which consisted of 2 games, at the University of Newcastle. Children then completed the Wechsler Preschool & Primary Scale of Intelligence - Fourth Edition Australian and New Zealand Standardized Edition (WPPSI-IV A&NZ). Fathers reported on their involvement in various caregiving activities and on their child’s development. Analyses revealed that fathers-child play quality was positively related to working memory outcomes in children. Furthermore, the amount of rough-and-tumble play father and child did together on a regular basis was also related to working memory outcomes. While father-child play interactions remain an understudied area of research, this study outlines the importance of examining the paternal play role in children’s cognitive development.

Keywords: children, development, father, executive function

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26 Psychological Wellbeing of Caregivers: Findings from a Large Cohort of Thai Adults

Authors: Vasoontara Yiengprugsawan, Sam-ang Seubsman

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As Thais live longer, caregivers will become even more important to social and healthcare systems. Commonly reported in many low and middle‐income countries in Asia, formal social welfare services to support caregivers are lacking and informal family support will be required for all levels of care. In 2005, 87,151 open‐university adults were recruited to the Thai Cohort Study, with the majority aged between 25 and 39 years, and residing nationwide. At the 4‐year follow up in 2009 (n=60569) and the 8‐year follow‐up in 2013 (n=42785), prospective cohort participants were asked if they provide care for chronically ill, disabled, or frail family members. Among Thai cohort members reporting between 2009 and 2013, approximately 56% were not caregivers in either year, 24.5% reported providing care in 2009 only, 8.6% in 2013 only, and 10.6% reported providing care at both time points. Caregivers in the cohort reported providing financial support, help with shopping, emotional support, and assist with daily activities. Kessler 6 psychological distress scale, measured in both 2009 and 2013, was used as the primary outcome of a relationship between caregiving status and mental health. Using multivariate logistic regression, our 4‐year longitudinal findings revealed that cohort members who reported providing care at both time points were 1.4 to 1.6 times more likely to report high psychological distress than non‐caregivers, after accounting for potential covariates. With increasing needs for informal care provided by family members, the future health and social welfare system will need to provide adequate support to caregivers (e.g., respite care, clinical support and information for the family, and awareness of mental health among caregivers).

Keywords: family caregivers, psychological distress, prospective cohort, longitudinal study, Thailand

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25 The Influence of Married Women's Adult Children Care Burden and Stress on Depression: Testing the Moderated Mediating Effect of Satisfaction with Husbands’ Sharing of the Care

Authors: Soo-Bi Lee, Jun Young Jeong, Zehgn Lin, Chenminxi

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Background: In South Korea, a problematic phenomenon has recently arisen whereby adult children continue to receive parentalcaregivingin some cases. These phenomena has been shown to affect the mental health of mothers. Study Goals: The purposes of this study are to verify whether the mediating effects of stress on the relationship between a woman’s care burden for their adult children and depression are moderated by their satisfaction about their husbands’ sharing of the caregiving. Methodology: This study analyzed 3,053 married women with adult children using the most recent data from the “Korean Longitudinal Survey of Women & Families 7th(2018)" conducted at the national level. The analysis was conducted using the SPSS Process Macro Model 7 to verify the moderated mediating effects and subsequently confirm their significance based on the bootstrapping method. Results and Implications: (1) Stress was identified a mediating factor in the relationship between the care burden for adult children and depression; and (2) the mediating effects of stress on depression from the burden of caring for adult children are modulated by the woman's satisfaction with her husband’s sharing of the care burden. In other words, the higher the caring burden of adult children, the higher the mother's stress, which increases depression. At this time, the higher the their satisfaction with the husband's share of care in the path of mother's care burden and stress, the lower the mother's stress and, ultimately, the depression be alleviated. Conclusion: Programs that promote the mental health of married women heavily with the caring burden for their adult children, as well as those that improve social awareness regarding husbands' sharing of the care burden, should be implemented. Also, social welfare policy alternatives are needed at the national level to reduce the caring burden caused by adult children.

Keywords: married women, adult children care burden, stress, depression, satisfaction with husbands sharing of the care

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24 Coping with the Stress and Negative Emotions of Care-Giving by Using Techniques from Seneca, Epictetus, and Marcus Aurelius

Authors: Arsalan Memon

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There are many challenges that a caregiver faces in average everyday life. One such challenge is coping with the stress and negative emotions of caregiving. The Stoics (i.e. Lucius Annaeus Seneca [4 B.C.E. - 65 C.E.], Epictetus [50-135 C.E.], and Marcus Aurelius [121-180 C.E.]) have provided coping techniques that are useful for dealing with stress and negative emotions. This paper lists and explains some of the fundamental coping techniques provided by the Stoics. For instance, some Stoic coping techniques thus follow (the list is far from exhaustive): a) mindfulness: to the best of your ability, constantly being aware of your thoughts, habits, desires, norms, memories, likes/dislikes, beliefs, values, and of everything outside of you in the world (b) constantly adjusting one’s expectations in accordance with reality, c) memento mori: constantly reminding oneself that death is inevitable and that death is not to be seen as evil, and d) praemeditatio malorum: constantly detaching oneself from everything that is so dear to one so that the least amount of suffering follows from the loss, damage, or ceasing to be of such entities. All coping techniques will be extracted from the following original texts by the Stoics: Seneca’s Letters to Lucilius, Epictetus’ Discourses and the Encheiridion, and Marcus Aurelius’ Meditations. One major finding is that the usefulness of each Stoic coping technique can be empirically tested by anyone in the sense of applying it one’s own life especially when one is facing real-life challenges. Another major finding is that all of the Stoic coping techniques are predicated upon, and follow from, one fundamental principle: constantly differentiate what is and what is not in one’s control. After differentiating it, one should constantly habituate oneself in not controlling things that are beyond one’s control. For example, the following things are beyond one’s control (all things being equal): death, certain illnesses, being born in a particular socio-economic family, etc. The conclusion is that if one habituates oneself by practicing to the best of one’s ability both the fundamental Stoic principle and the Stoic coping techniques, then such a habitual practice can eventually decrease the stress and negative emotions that one experiences by being a caregiver.

Keywords: care-giving, coping techniques, negative emotions, stoicism, stress

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23 Family Quality of Life in the Context of Pediatric Sickle Cell Disease in Oman

Authors: Wafa Al Jabri

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Sickle cell disease (SCD) is a genetic blood disorder that is characterized by a severe painful crisis. SCD among children requires long term dependencies and high caregiving demands that increase the overall family burdens. It is, therefore, essential to examine, support, and promote the well-being of families of children with SCD. Although there has been considerable progress in the international research on family quality of life (FQOL) in recent years; however, research in this field is relatively recent and diverse. Oman is a country in which family quality of life has definitely been under-researched. Therefore, the purpose of the study is to describe the FQOL in families of children with SCD in Oman. The study will also examine the relationships between child, mother, and family-related factors that may influence the overall FQOL. Theoretical Framework: The study is guided by the unified theory of family quality of life to help in understanding the concept of FQOL and the factors that shape it. Method:A convenience sample of 98 mothers of children with SCD will be recruited from the pediatric hematology clinic at Sultan Qaboos University Hospital in Oman to participate in this descriptive, cross sectional, correlational study. Data will be obtained using a self-administered questionnaire that includes child and mother socio-demographic data, questions about the number of visits and admissions to health care facilities for vaso- occlusive crises (VOCs), the Perceived Stress Scale-10, and the Beachcenter-FQOL scale. Anticipated Results: It is expected to find an association among frequency of VOCs, mother’s perceived stress level, and FQOL in families of children with SCD in Oman. Family type, socio-economic status, and number of SCD children in the family are also expected to influence the overall FQOL. Conclusion: The findings of the study might be pivotal in designing and implementing tailored family-based interventions to improve families’ wellbeing.

Keywords: family quality of life, sickle cell disaes, children, family well-being

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22 A Real-World Evidence Analysis of Associations between Costs, Quality of Life and Disease-Severity Indicators of Alzheimer’s Disease in Thailand

Authors: Khachen Kongpakwattana, Charungthai Dejthevaporn, Orapitchaya Krairit, Piyameth Dilokthornsakul, Devi Mohan, Nathorn Chaiyakunapruk

Abstract:

Background: Although an increase in the burden of Alzheimer’s disease (AD) is evident worldwide, knowledge of costs and health-related quality of life (HR-QoL) associated with AD in Low- and Middle-Income Countries (LMICs) is still lacking. We, therefore, aimed to collect real-world cost and HR-QoL data, and investigate their associations with multiple disease-severity indicators among AD patients in Thailand. Methods: We recruited AD patients aged ≥ 60 years accompanied by their caregivers at a university-affiliated tertiary hospital. A one-time structured interview was conducted to collect disease-severity indicators, HR-QoL and caregiving information using standardized tools. The hospital’s database was used to retrieve healthcare resource utilization occurred over 6 months preceding the interview date. Costs were annualized and stratified based on cognitive status. Generalized linear models were employed to evaluate determinants of costs and HR-QoL. Results: Among 148 community-dwelling patients, average annual total societal costs of AD care were 8,014 US$ [95% Confidence Interval (95% CI): 7,295 US$ - 8,844 US$] per patient. Total costs of patients with severe stage (9,860 US$; 95% CI: 8,785 US$ - 11,328 US$) were almost twice as high as those of mild stage (5,524 US$; 95% CI: 4,649 US$ - 6,593 US$). The major cost driver was direct medical costs, particularly those incurred by AD prescriptions. Functional status was the strongest determinant for both total costs and patient’s HR-QoL (p-value < 0.001). Conclusions: Our real-world findings suggest the distinct major cost driver which results from expensive AD treatment, emphasizing the demand for country-specific cost evidence. Increases in cognitive and functional status are significantly associated with decreases in total costs of AD care and improvement on patient’s HR-QoL.

Keywords: Alzheimer's disease, associations, costs, disease-severity indicators, health-related quality of life

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21 Psychological Intervention for Partners Post-Stroke: A Case Study

Authors: Natasha Yasmin Felles, Gerard Riley

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Background and Aims: Relationship breakdown is typical when one partner lives with an acquired brain injury caused by issues like a stroke. Research has found that the perception of relationship satisfaction decreases following such an injury among non-injured partners. Non-injured partners also are found to experience caregiver stress/burden as they immediately have to take the role of a caregiver along with being a partner of the injured. Research has also found that the perception of a continuous relationship, i.e. the perception of the relationship to be essentially the same as it was before the injury, also changes among those caregiving partners. However, there is a lack of available intervention strategies that can help those partners with both individual and relationship difficulties. The aim of this case study was to conduct a pilot test of an intervention aimed to explore whether it is possible to support a partner to experience greater continuity within the relationship poststroke, and what benefits such a change might have. Method: A couple, where one partner experienced an acquired brain injury poststroke were provided with Integrated Behavioural Couples Therapy for 3-months. The intervention addressed goals identified as necessary by the couple and by the formulation of their individual and relationship difficulties, alongside the goal of promoting relationship continuity. Before and after measures were taken using a battery of six questionnaires to evaluate changes in perceptions of continuity, stress, and other aspects of the relationship. Results: Both quantitative and qualitative data showed that relationship continuity was improved after the therapy, as were the measures of stress and other aspects of the relationship. The stress felt by the person with the acquired brain injury also showed some evidence of improvement. Conclusion: The study found that perceptions of relationship continuity can be improved by therapy and that improving these might have a beneficial impact on the stress felt by the carer, their satisfaction with the relationship and overall levels of conflict and closeness within the relationship. The study suggested the value of further research on enhancing perceptions of continuity in the relationship after an acquired brain injury. Currently, the findings of the study have been used to develop a pilot feasibility study to collect substantive evidence on the impact of the intervention on the couples and assess its feasibility and acceptability, which will help in further developing a specific generalized relationship continuity intervention, that will be beneficial in preventing relationship breakdown in the future.

Keywords: acquired brain injury, couples therapy, relationship continuity, stroke

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20 The Impact of Informal Care on Health Behavior among Older People with Chronic Diseases: A Study in China Using Propensity Score Matching

Authors: Hong Wu, Naiji Lu

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Improvement of health behavior among people with chronic diseases is vital for increasing longevity and enhancing quality of life. This paper researched the causal effects of informal care on the compliance with doctor’s health advices – smoking control, dietetic regulation, weight control and keep exercising – among older people with chronic diseases in China, which is facing the challenge of aging. We addressed the selection bias by using propensity score matching in the estimation process. We used the 2011-2012 national baseline data of the China Health and Retirement Longitudinal Study. Our results showed informal care can help improve health behavior of older people. First, informal care improved the compliance of smoking controls: whether smoke, frequency of smoking, and the time lag between wake up and the first cigarette was all lower for these older people with informal care; Second, for dietetic regulation, older people with informal care had more meals every day than older people without informal care; Third, three variables: BMI, whether gain weight and whether lose weight were used to measure the outcome of weight control. There were no significant difference between group with informal care and that without for BMI and the possibility of losing weight. Older people with informal care had lower possibility of gain weight than that without; Last, for the advice of keeping exercising, informal care increased the probability of walking exercise, however, the difference between groups for moderate and vigorous exercise were not significant. Our results indicate policy makers who aim to decrease accidents should take informal care to elders into account and provide an appropriate policy to meet the demand of informal care. Our birth policy and postponed retirement policy may decrease the informal caregiving hours, so adjustments of these policies are important and urgent to meet the current situation of aged tendency of population. In addition, government could give more support to develop organizations to provide formal care, such as nursing home. We infer that formal care is also useful for health behavior improvements.

Keywords: chronic diseases, compliance, CHARLS, health advice, informal care, older people, propensity score matching

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19 Analyzing How Working From Home Can Lead to Higher Job Satisfaction for Employees Who Have Care Responsibilities Using Structural Equation Modeling

Authors: Christian Louis Kühner, Florian Pfeffel, Valentin Nickolai

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Taking care of children, dependents, or pets can be a difficult and time-consuming task. Especially for part- and full-time employees, it can feel exhausting and overwhelming to meet these obligations besides working a job. Thus, working mostly at home and not having to drive to the company can save valuable time and stress. This study aims to show the influence that the working model has on the job satisfaction of employees with care responsibilities in comparison to employees who do not have such obligations. Using structural equation modeling (SEM), the three work models, “work from home”, “working remotely”, and a hybrid model, have been analyzed based on 13 influencing constructs on job satisfaction. These 13 factors have been further summarized into three groups “classic influencing factors”, “influencing factors changed by remote working”, and “new remote working influencing factors”. Based on the influencing factors on job satisfaction, an online survey was conducted with n = 684 employees from the service sector. Here, Cronbach’s alpha of the individual constructs was shown to be suitable. Furthermore, the construct validity of the constructs was confirmed by face validity, content validity, convergent validity (AVE > 0.5: CR > 0.7), and discriminant validity. In addition, confirmatory factor analysis (CFA) confirmed the model fit for the investigated sample (CMIN/DF: 2.567; CFI: 0.927; RMSEA: 0.048). The SEM-analysis has shown that the most significant influencing factor on job satisfaction is “identification with the work” with β = 0.540, followed by “Appreciation” (β = 0.151), “Compensation” (β = 0.124), “Work-Life-Balance” (β = 0.116), and “Communication and Exchange of Information” (β = 0.105). While the significance of each factor can vary depending on the work model, the SEM-analysis shows that the identification with the work is the most significant factor in all three work models and, in the case of the traditional office work model, it is the only significant influencing factor. The study shows that among the employees with care responsibilities, the higher the proportion of working from home in comparison to working from the office, the more satisfied the employees are with their job. Since the work models that meet the requirements of comprehensive care led to higher job satisfaction amongst employees with such obligations, adapting as a company to such private obligations by employees can be crucial to sustained success. Conversely, the satisfaction level of the working model where employees work at the office is higher for workers without caregiving responsibilities.

Keywords: care responsibilities, home office, job satisfaction, structural equation modeling

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18 Revisiting Hospital Ward Design Basics for Sustainable Family Integration

Authors: Ibrahim Abubakar Alkali, Abubakar Sarkile Kawuwa, Ibrahim Sani Khalil

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The concept of space and function forms the bedrock for spatial configuration in architectural design. Thus, the effectiveness and functionality of an architectural product depends their cordial relationship. This applies to all buildings especially to a hospital ward setting designed to accommodate various complex and diverse functions. Health care facilities design, especially an inpatient setting, is governed by many regulations and technical requirements. It is also affected by many less defined needs, particularly, response to culture and the need to provide for patient families’ presence and participation. The spatial configuration of the hospital ward setting in developing countries has no consideration for the patient’s families despite the significant role they play in promoting recovery. Attempts to integrate facilities for patients’ families have always been challenging, especially in developing countries like Nigeria, where accommodation for inpatients is predominantly in an open ward system. In addition, the situation is compounded by culture, which significantly dictates healthcare practices in Africa. Therefore, achieving such a hospital ward setting that is patient and family-centered requires careful assessment of family care actions and transaction spaces so as to arrive at an evidence based solution. Therefore, the aim of this study is to identify how hospital ward spaces can be reconfigured to provide for sustainable family integration. In achieving this aim, a qualitative approach using the principles of behavioral mapping was employed in male and female medical wards of the Federal Teaching Hospital (FTH) Gombe, Nigeria. The data obtained was analysed using classical and comparative content analysis. Patients’ families have been found to be a critical component of hospital ward design that cannot be undermined. Accordingly, bedsides, open yards, corridors and foyers have been identified as patient families’ transaction spaces that require design attention. Arriving at sustainable family integration can be achieved by revisiting the design requirements of the family transaction spaces based on the findings in order to avoid the rowdiness of the wards and uncoordinated sprawl.

Keywords: caregiving, design basics, family integration, hospital ward, sustainability

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17 Care as a Situated Universal: Defining Care as a Practical Phenomenology Study

Authors: Amanda Aliende da Matta

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This communication presents an aspect of phenomenon selection in an applied hermeneutic phenomenology study on care and vulnerability: the need to consider it as a situated universal. For that, we will first present the study and its methodology. Secondly, we will expose the need to understand phenomena as situation-defined, incorporating feminist thought. In an informatics class for 14 year olds, we explained the exercise: students have to make a 5 slide presentation about a topic of their choice. A does it on streetwear, B on Cristiano Ronaldo, C on Marvel, but J did it on Down Syndrome. Introducing it to the class, J explains the physical and cognitive differences caused by trisomy; when asked to explain it further, he says: "they are angels, teacher," and shows us a poster on his cellphone that says: if you laugh at a different child he will laugh with you because his innocence outweighs your ignorance. The anecdote shows, better than any theoretical explanation, something that some vulnerable people have; something beautiful and special but difficult to define. Let's call this something caring. The research has the main objective of accounting for the experience of caregiving in vulnerability, and it will be carried out with Applied Hermeneutic Phenomenology (AHP). The method's objective is to investigate the lived human experience in its pre-reflexive dimension to know its meaning structures. Contrary to other research methods, AHP does not produce theory about a specific context but seeks the meaning of the lived experience, in its characteristic of human experience. However, it is necessary that we understand care as defined in a concrete situation. We cannot start the research with an a priori definitive concept of care, or we would fall into the mistake of closing ourselves to only what we already know, as explained by Levinas. We incorporate, then, the notion of situated universals. Loyal to phenomenology, the definition of the phenomenon should start with an investigation of the word's etymology: the word cura, in its etymological root, means care. And care comes from the Latin word cogitātus/cōgĭto, which means "to pursue something in mind" and "to consider thoroughly." The verb cōgĭto, meanwhile, is composed of co- (altogether) and agitare (to deal with or think committedly about something, to concern oneself with) / ăgĭto (to set in motion, to move). Care, therefore, has in its origin a meditation on something, a concern about something, a verb that has a sense of action and movement. To care is to act out of concern for something/someone. This etymology, though, is not the final definition of the phenomenon, but only its skeleton. It needs to be embodied in the concrete situation to become a possible lived experience. And that means that the lived experience descriptions (LEDs) should be selected by taking into consideration how and if care was engendered in that concrete experience. Defining the phenomenon has to take into consideration situated knowledge.

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

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16 Coping Strategies among Caregivers of Children with Autism Spectrum Disorders: A Cluster Analysis

Authors: Noor Ismael, Lisa Mische Lawson, Lauren Little, Murad Moqbel

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Background/Significance: Caregivers of children with Autism Spectrum Disorders (ASD) develop coping mechanisms to overcome daily challenges to successfully parent their child. There is variability in coping strategies used among caregivers of children with ASD. Capturing homogeneity among such variable groups may help elucidate targeted intervention approaches for caregivers of children with ASD. Study Purpose: This study aimed to identify groups of caregivers of children with ASD based on coping mechanisms, and to examine whether there are differences among these groups in terms of strain level. Methods: This study utilized a secondary data analysis, and included survey responses of 273 caregivers of children with ASD. Measures consisted of the COPE Inventory and the Caregiver Strain Questionnaire. Data analyses consisted of cluster analysis to group caregiver coping strategies, and analysis of variance to compare the caregiver coping groups on strain level. Results: Cluster analysis results showed four distinct groups with different combinations of coping strategies: Social-Supported/Planning (group one), Spontaneous/Reactive (group two), Self-Supporting/Reappraisal (group three), and Religious/Expressive (group four). Caregivers in group one (Social-Supported/Planning) demonstrated significantly higher levels than the remaining three groups in the use of the following coping strategies: planning, use of instrumental social support, and use of emotional social support, relative to the other three groups. Caregivers in group two (Spontaneous/Reactive) used less restraint relative to the other three groups, and less suppression of competing activities relative to the other three groups as coping strategies. Also, group two showed significantly lower levels of religious coping as compared to the other three groups. In contrast to group one, caregivers in group three (Self-Supporting/Reappraisal) demonstrated significantly lower levels of the use of instrumental social support and the use of emotional social support relative to the other three groups. Additionally, caregivers in group three showed more acceptance, positive reinterpretation and growth coping strategies. Caregivers in group four (Religious/Expressive) demonstrated significantly higher levels of religious coping relative to the other three groups and utilized more venting of emotions strategies. Analysis of Variance results showed no significant differences between the four groups on the strain scores. Conclusions: There are four distinct groups with different combinations of coping strategies: Social-Supported/Planning, Spontaneous/Reactive, Self-Supporting/Reappraisal, and Religious/Expressive. Each caregiver group engaged in a combination of coping strategies to overcome the strain of caregiving.

Keywords: autism, caregivers, cluster analysis, coping strategies

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15 Caregivers Roles, Care Home Management, Funding and Administration in Challenged Communities: Focus in North Eastern Nigeria

Authors: Chukwuka Justus Iwegbu

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Background: A major concern facing the world is providing senior citizens, individuals with disabilities, and other vulnerable groups with high-quality care. This issue is more serious in Nigeria's North Eastern area, where the burden of disease and disability is heavy, and access to care is constrained. This study aims to fill this gap by exploring the roles, challenges and support needs of caregivers, care home management, funding and administration in challenged communities in North Eastern Nigeria. The study will also provide a comprehensive understanding of the current situation and identify opportunities for improving the quality of care and support for caregivers and care recipients in these communities. Methods: A mixed-methods design, including both quantitative and qualitative data collection methods, will be used, and it will be guided by the stress process model of caregiving. The qualitative stage approach will comprise a survey, In-depth interviews, observations, and focus group discussion and the quantitative analysis will be used in order to comprehend the variations between caregiver's roles and care home management. A review of relevant documents, such as care home policies and funding reports, would be used to gather quantitative data on the administrative and financial aspects of care. The data collected will be analyzed using both descriptive statistics and thematic analysis. A sample size of around 200-300 participants, including caregivers, care recipients, care home managers and administrators, policymakers and health care providers, would be recruited. Findings: The study revealed that caregivers in challenged communities in North Eastern Nigeria face significant challenges, including lack of training and support, limited access to funding and resources, and high levels of burnout. Care home management and administration were also found to be inadequate, with a lack of clear policies and procedures and limited oversight and accountability. Conclusion: There is a need for increased investment in training and support for caregivers, as well as a need for improved care home management and administration in challenged communities in North Eastern Nigeria. It also highlights the importance of involving community members in decision-making and planning processes related to care homes and services. The study would contribute to the existing body of knowledge by providing a detailed understanding of the challenges faced by caregivers, care home managers and administrators.

Keywords: caregivers, care home management, funding, administration, challenge communities, North Eastern Nigeria

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14 Rethinking Gender Roles within the Family: Single Fathers and the Domestic Sphere

Authors: Mohamad Chour

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Nowadays, a record number of households are headed by single fathers in most of the European societies. Our research aims to explore how French single fathers experience the domestic sphere, a traditionally feminized field while accomplishing their role of fathers. We adopt a gender role and a parenting role construction theoretical perspectives. Indeed, the interior domestic sphere has been traditionally considered as related to the role of the mother. Moreover, according to the masculine domination theory of Bourdieu, men avoid caregiving and domestic practices that are economically and culturally undervalued. Hence, mothers are considered as more likely to handle the expressive dimension of duties whereas fathers’ role is represented as instrumental, functional and independent. Long interviews have been conducted with twenty French single fathers in order to investigate how the absence of the mother affects the practices of fatherhood. We combined the long interviews with projective techniques method in order to better understand their conception of the family and their family values. Seeking a qualitative diversity, our respondents are from various ages (between 30 and 60); they are coming from different regions in France; living in rural, semi-rural and urban areas. Based on the analysis of 427 pages of data, we identify three main categories of single fathers depending on their strategies to copy and/or delegate the role of the mother. 1) Nurturing fathers completely assume the role of the absent mother as well as her functions. Their discourse is characterized by abnegation and sacrifices reflecting a nurturing role. 2) Juggling fathers are those who take charge of a part of the household duties and delegate the other part to the market or to 'feminine resources' for lacking skills or time. 3) Resistant fathers are the very few respondents who refuse to assume any activities related to the domestic sphere that they perceive as feminine. For lacking competences and even for ideological reasons, they have tendency to delegate all the tasks that were assumed by their ex-spouses. Generally, the majority of fathers seem to experience the domestic sphere differently, and their domestic involvement has been underestimated and even misunderstood. Household duties such as cooking and housekeeping in addition to the nurturing role are experienced by many of the respondents as constructing elements of their fatherhood. Our respondents do not seem to accomplish house holding duties in a functional way. The domestic sphere is managed by those fathers with a strong dimension of abnegation. Thus, our research contributes to illustrating the evolution of gender roles and shows how being simultaneously 'a father and a mother' seems to be an emerging social norm in a French and European cultural context.

Keywords: fathering, gender roles, gender studies, identity construction, single fathers

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13 Development of the Family Capacity of Management of Patients with Autism Spectrum Disorder Diagnosis

Authors: Marcio Emilio Dos Santos, Kelly C. F. Dos Santos

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Caregivers of patients diagnosed with ASD are subjected to high stress situations due to the complexity and multiple levels of daily activities that require the organization of events, behaviors and socioemotional situations, such as immediate decision making and in public spaces. The cognitive and emotional requirement needed to fulfill this caregiving role exceeds the regular cultural process that adults receive in their process of preparation for conjugal and parental life. Therefore, in many cases, caregivers present a high level of overload, poor capacity to organize and mediate the development process of the child or patient about their care. Aims: Improvement in the cognitive and emotional capacities related to the caregiver function, allowing the reduction of the overload, the feeling of incompetence and the characteristic level of stress, developing a more organized conduct and decision making more oriented towards the objectives and procedural gains necessary for the integral development of the patient with diagnosis of ASD. Method: The study was performed with 20 relatives, randomly selected from a total of 140 patients attended. The family members were submitted to the Wechsler Adult Intelligence Scale III intelligence test and the Family assessment Management Measure (FaMM) questionnaire as a previous evaluation. Therapeutic activity in a small group of family members or caregivers, with weekly frequency, with a minimum workload of two hours, using the Feuerstein Instrumental Enrichment Cognitive Development Program - Feuerstein Instrumental Enrichment for ten months. Reapplication of the previous tests to verify the gains obtained. Results and Discussion: There is a change in the level of caregiver overload, improvement in the results of the Family assessment Management Measure and highlight to the increase of performance in the cognitive aspects related to problem solving, planned behavior and management of behavioral crises. These results lead to the discussion of the need to invest in the integrated care of patients and their caregivers, mainly by enabling cognitively to deal with the complexity of Autism. This goes beyond the simple therapeutic orientation about adjustments in family and school routines. The study showed that when the caregiver improves his/her capacity of management, the results of the treatment are potentiated and there is a reduction of the level of the caregiver's overload. Importantly, the study was performed for only ten months and the number of family members attended in the study (n = 20) needs to be expanded to have statistical strength.

Keywords: caregiver overload, cognitive development program ASD caregivers, feuerstein instrumental enrichment, family assessment management measure

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12 Advancing Women's Participation in SIDS' Renewable Energy Sector: A Multicriteria Evaluation Framework

Authors: Carolina Mayen Huerta, Clara Ivanescu, Paloma Marcos

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Due to their unique geographic challenges and the imperative to combat climate change, Small Island Developing States (SIDS) are experiencing rapid growth in the renewable energy (RE) sector. However, women's representation in formal employment within this burgeoning field remains significantly lower than their male counterparts. Conventional methodologies often overlook critical geographic data that influence women's job prospects. To address this gap, this paper introduces a Multicriteria Evaluation (MCE) framework designed to identify spatially enabling environments and restrictions affecting women's access to formal employment and business opportunities in the SIDS' RE sector. The proposed MCE framework comprises 24 key factors categorized into four dimensions: Individual, Contextual, Accessibility, and Place Characterization. "Individual factors" encompass personal attributes influencing women's career development, including caregiving responsibilities, exposure to domestic violence, and disparities in education. "Contextual factors" pertain to the legal and policy environment, influencing workplace gender discrimination, financial autonomy, and overall gender empowerment. "Accessibility factors" evaluate women's day-to-day mobility, considering travel patterns, access to public transport, educational facilities, RE job opportunities, healthcare facilities, and financial services. Finally, "Place Characterization factors" enclose attributes of geographical locations or environments. This dimension includes walkability, public transport availability, safety, electricity access, digital inclusion, fragility, conflict, violence, water and sanitation, and climatic factors in specific regions. The analytical framework proposed in this paper incorporates a spatial methodology to visualize regions within countries where conducive environments for women to access RE jobs exist. In areas where these environments are absent, the methodology serves as a decision-making tool to reinforce critical factors, such as transportation, education, and internet access, which currently hinder access to employment opportunities. This approach is designed to equip policymakers and institutions with data-driven insights, enabling them to make evidence-based decisions that consider the geographic dimensions of disparity. These insights, in turn, can help ensure the efficient allocation of resources to achieve gender equity objectives.

Keywords: gender, women, spatial analysis, renewable energy, access

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11 A Multicriteria Evaluation Framework for Enhancing Women's Participation in SIDS Renewable Energy Sector

Authors: Carolina Mayen Huerta, Clara Ivanescu, Paloma Marcos

Abstract:

Due to their unique geographic challenges and the imperative to combat climate change, Small Island Developing States (SIDS) are experiencing rapid growth in the renewable energy (RE) sector. However, women's representation in formal employment within this burgeoning field remains significantly lower than their male counterparts. Conventional methodologies often overlook critical geographic data that influence women's job prospects. To address this gap, this paper introduces a Multicriteria Evaluation (MCE) framework designed to identify spatially enabling environments and restrictions affecting women's access to formal employment and business opportunities in the SIDS' RE sector. The proposed MCE framework comprises 24 key factors categorized into four dimensions: Individual, Contextual, Accessibility, and Place Characterization. "Individual factors" encompass personal attributes influencing women's career development, including caregiving responsibilities, exposure to domestic violence, and disparities in education. "Contextual factors" pertain to the legal and policy environment, influencing workplace gender discrimination, financial autonomy, and overall gender empowerment. "Accessibility factors" evaluate women's day-to-day mobility, considering travel patterns, access to public transport, educational facilities, RE job opportunities, healthcare facilities, and financial services. Finally, "Place Characterization factors" enclose attributes of geographical locations or environments. This dimension includes walkability, public transport availability, safety, electricity access, digital inclusion, fragility, conflict, violence, water and sanitation, and climatic factors in specific regions. The analytical framework proposed in this paper incorporates a spatial methodology to visualize regions within countries where conducive environments for women to access RE jobs exist. In areas where these environments are absent, the methodology serves as a decision-making tool to reinforce critical factors, such as transportation, education, and internet access, which currently hinder access to employment opportunities. This approach is designed to equip policymakers and institutions with data-driven insights, enabling them to make evidence-based decisions that consider the geographic dimensions of disparity. These insights, in turn, can help ensure the efficient allocation of resources to achieve gender equity objectives.

Keywords: gender, women, spatial analysis, renewable energy, access

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10 Pandemic-Related Disruption to the Home Environment and Early Vocabulary Acquisition

Authors: Matthew McArthur, Margaret Friend

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The COVID-19 pandemic disrupted the stability of the home environment for families across the world. Potential disruptions include parent work modality (in-person vs. remote), levels of health anxiety, family routines, and caregiving. These disruptions may have interfered with the processes of early vocabulary acquisition, carrying lasting effects over the life course. Our justification for this research is as follows: First, early, stable, caregiver-child reciprocal interactions, which may have been disrupted during the pandemic, contribute to the development of the brain architecture that supports language, cognitive, and social-emotional development. Second, early vocabulary predicts several cognitive outcomes, such as numeracy, literacy, and executive function. Further, disruption in the home is associated with adverse cognitive, academic, socio-emotional, behavioral, and communication outcomes in young children. We are interested in how disruptions related to the COVID-19 pandemic are associated with vocabulary acquisition in children born during the first two waves of the pandemic. We are conducting a moderated online experiment to assess this question. Participants are 16 children (10F) ranging in age from 19 to 39 months (M=25.27) and their caregivers. All child participants were screened for language background, health history, and history of language disorders, and were typically developing. Parents completed a modified version of the COVID-19 Family Stressor Scale (CoFaSS), a published measure of COVID-19-related family stressors. Thirteen items from the original scale were replaced to better capture change in family organization and stability specifically related to disruptions in income, anxiety, family relations, and childcare. Following completion of the modified CoFaSS, children completed a Web-Based version of the Computerized Comprehension Task and the Receptive One Word Picture Vocabulary if 24 months or older or the MacArthur-Bates Communicative Development Inventory if younger than 24 months. We report our preliminary data as a partial correlation analysis controlling for age. Raw vocabulary scores on the CCT, ROWPVT-4, and MCDI were all negatively associated with pandemic-related disruptions related to anxiety (r12=-.321; r1=-.332; r9=-.509), family relations (r12=-.590*; r1=-.155; r9=-.468), and childcare (r12=-.294; r1=-.468; r9=-.177). Although the small sample size for these preliminary data limits our power to detect significance, this trend is in the predicted direction, suggesting that increased pandemic-related disruption across multiple domains is associated with lower vocabulary scores. We anticipate presenting data on a full sample of 50 monolingual English participants. A sample of 50 participants would provide sufficient statistical power to detect a moderate effect size, adhering to a nominal alpha of 0.05 and ensuring a power level of 0.80.

Keywords: COVID-19, early vocabulary, home environment, language acquisition, multiple measures

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9 Parenting Interventions for Refugee Families: A Systematic Scoping Review

Authors: Ripudaman S. Minhas, Pardeep K. Benipal, Aisha K. Yousafzai

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Background: Children of refugee or asylum-seeking background have multiple, complex needs (e.g. trauma, mental health concerns, separation, relocation, poverty, etc.) that places them at an increased risk for developing learning problems. Families encounter challenges accessing support during resettlement, preventing children from achieving their full developmental potential. There are very few studies in literature that examine the unique parenting challenges refugee families’ face. Providing appropriate support services and educational resources that address these distinctive concerns of refugee parents, will alleviate these challenges allowing for a better developmental outcome for children. Objective: To identify the characteristics of effective parenting interventions that address the unique needs of refugee families. Methods: English-language articles published from 1997 onwards were included if they described or evaluated programmes or interventions for parents of refugee or asylum-seeking background, globally. Data were extracted and analyzed according to Arksey and O’Malley’s descriptive analysis model for scoping reviews. Results: Seven studies met criteria and were included, primarily studying families settled in high-income countries. Refugee parents identified parenting to be a major concern, citing they experienced: alienation/unwelcoming services, language barriers, and lack of familiarity with school and early years services. Services that focused on building the resilience of parents, parent education, or provided services in the family’s native language, and offered families safe spaces to promote parent-child interactions were most successful. Home-visit and family-centered programs showed particular success, minimizing barriers such as transportation and inflexible work schedules, while allowing caregivers to receive feedback from facilitators. The vast majority of studies evaluated programs implementing existing curricula and frameworks. Interventions were designed in a prescriptive manner, without direct participation by family members and not directly addressing accessibility barriers. The studies also did not employ evaluation measures of parenting practices or the caregiving environment, or child development outcomes, primarily focusing on parental perceptions. Conclusion: There is scarce literature describing parenting interventions for refugee families. Successful interventions focused on building parenting resilience and capacity in their native language. To date, there are no studies that employ a participatory approach to program design to tailor content or accessibility, and few that employ parenting, developmental, behavioural, or environmental outcome measures.

Keywords: asylum-seekers, developmental pediatrics, parenting interventions, refugee families

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8 Family Resilience of Children with Cancer: A Latent Profile Analysis

Authors: Bowen Li, Dan Shu, Shiguang Pang, Li Wang, Qian Liu

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Background: Every year, approximately 429,000 adolescents aged 0-19 are diagnosed with cancer worldwide. The diagnosis brings about substantial psychological pressure and caregiving responsibilities for family members and impacts the families significantly. Family resilience has been found to reduce caregiver distress and can also foster post-traumatic growth in cancer survivors. However, current research on family resilience in childhood cancer mainly focuses on individual caregiver resilience and child adaptation, with less attention given to categorizing family resilience among caregivers of children with cancer. Method: A total of 292 caregivers of children with cancer were recruited from four tertiary hospitals in central China from July 2022 to March 2024. This study was approved by the ethics committee, and participants provided informed consent, with the option to withdraw at any time. The Family Resilience Assessment Scale was used to measure family resilience among caregivers of children with cancer. The Quality of Life scale-family, The Perceived Social Support Scale, and The Connor-Davidson Resilience Scale were used to measure potential influencing factors. This study used latent profile analysis (LPA) to identify latent categories of family resilience among caregivers of children with cancer. Binary logistic regression was used to analyze the influencing factors of family resilience. Results: The results reveal two distinct categories: "high family resilience" and "low family resilience." "Low family resilience" group accounts for 85.96% of the total while "high family resilience" group is 14.04%. "High family resilience" scores higher across all dimensions compared to "low family resilience". Within-group comparisons reveals that "family communication and problem-solving" and "empowering the meaning of adversity" received the highest scores, while "utilizing social and economic resources" scores the lowest. "Maintaining a positive attitude" scores similarly high to "family communication and problem-solving" in the high family resilience group, whereas it scores similarly low to "utilizing social and economic resources" in the low family resilience group. In single-factor analysis, residence, number of siblings, caregiver's education level, resilience, social support, quality of life, physical well-being and psychological well-being showed significant difference between two categories. In binary logistic regression analysis, households with only one child are more likely to exhibit low family resilience, whereas high personal resilience is associated with a high level of family resilience. Conclusion: Most families with children suffering from cancer require strengthened family resilience. Support for utilizing socio-economic resources is important for both high and low family resilience families. Single-child families and caregivers with lower resilience require more attention. These findings imply the development of targeted interventions to enhance family resilience among families with children of cancer. Future studies could involve children and other family members for a comprehensive understanding of family resilience. Longitudinal studies are necessary to explore the dynamic changes in family resilience throughout the cancer journey.

Keywords: cancer children, caregivers, family resilience, latent profile analysis

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7 Social Factors That Contribute to Promoting and Supporting Resilience in Children and Youth following Environmental Disasters: A Mixed Methods Approach

Authors: Caroline McDonald-Harker, Julie Drolet

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Abstract— In the last six years Canada In the last six years Canada has experienced two major and catastrophic environmental disasters– the 2013 Southern Alberta flood and the 2016 Fort McMurray, Alberta wildfire. These two disasters resulted in damages exceeding 12 billion dollars, the costliest disasters in Canadian history. In the aftermath of these disasters, many families faced the loss of homes, places of employment, schools, recreational facilities, and also experienced social, emotional, and psychological difficulties. Children and youth are among the most vulnerable to the devastating effects of disasters due to the physical, cognitive, and social factors related to their developmental life stage. Yet children and youth also have the capacity to be resilient and act as powerful catalyst for change in their own lives and wider communities following disaster. Little is known, particularly from a sociological perspective, about the specific factors that contribute to resilience in children and youth, and effective ways to support their overall health and well-being. This paper focuses on the voices and experiences of children and youth residing in these two disaster-affected communities in Alberta, Canada and specifically examines: 1) How children and youth’s lives are impacted by the tragedy, devastation, and upheaval of disaster; 2) Ways that children and youth demonstrate resilience when directly faced with the adversarial circumstances of disaster; and 3) The cumulative internal and external factors that contribute to bolstering and supporting resilience among children and youth post-disaster. This paper discusses the characteristics associated with high levels of resilience in 183 children and youth ages 5 to 17 based on quantitative and qualitative data obtained through a mix methods approach. Child and youth participants were administered the Children and Youth Resilience Measure (CYRM-28) in order to examine factors that influence resilience processes including: individual, caregiver, and context factors. The CYRM-28 was then supplemented with qualitative interviews with children and youth to contextualize the CYRM-28 resiliency factors and provide further insight into their overall disaster experience. Findings reveal that high levels of resilience among child and youth participants is associated with both individual factors and caregiver factors, specifically positive outlook, effective communication, peer support, and physical and psychological caregiving. Individual and caregiver factors helped mitigate the negative effects of disaster, thus bolstering resilience in children and youth. This paper discusses the implications that these findings have for understanding the specific mechanisms that support the resiliency processes and overall recovery of children and youth following disaster; the importance of bridging the gap between children and youth’s needs and the services and supports provided to them post-disaster; and the need to develop resiliency processes and practices that empower children and youth as active agents of change in their own lives following disaster. These findings contribute to furthering knowledge about pragmatic and representative changes to resources, programs, and policies surrounding disaster response, recovery, and mitigation.

Keywords: children and youth, disaster, environment, resilience

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6 The Effect of a Multidisciplinary Spine Clinic on Treatment Rates and Lead Times to Care

Authors: Ishan Naidu, Jessica Ryvlin, Devin Videlefsky

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Introduction: Back pain is a leading cause of years lived with disability and economic burden, exceeding over $20 billion in healthcare costs not including indirect costs such as absence from work and caregiving. The multifactorial nature of back pain leads to treatment modalities administered by a variety of specialists, which are often disjointed. Multiple studies have found that patients receiving delayed physical therapy for lower back pain had higher medical-related costs from increased health service utilization as well as a reduced improvement in pain severity compared to early management. Uncoordinated health care delivery can exacerbate the physical and economic toll of the chronic condition, thus improvements in interdisciplinary, shared decision-making may improve outcomes. Objective: To assess whether a multidisciplinary spine clinic (MSC), consisting of orthopedic surgery, neurosurgery, pain medicine, and physiatry, alters interventional and non-interventional planning and treatment compared to a traditional unidisciplinary spine clinic (USC) including only orthopedic surgery. Methods: We conducted a retrospective cohort study with patients initially presenting for spine care to orthopedic surgeons between July 1, 2018 to June 30, 2019. Time to treatment recommendation, time to treatment and rates of treatment recommendations were assessed, including physical therapy, injections and surgery. Treatment rates were compared between MSC and USC using Pearson’s chi-square test logistic regression. Time to treatment recommendation and time to treatment were compared using log-rank test and Cox proportional hazard regression. All analyses were repeated for the propensity score (PS) matched subsample. Results: This study included 1,764 patients, with 692 at MSC and 1,072 at USC. Patients in MSC were more likely to be recommended injection when compared to USC (8.5% vs. 5.4%, p=0.01). When adjusted for confounders, the likelihood of injection recommendation remained greater in MSC than USC (Odds ratio [OR]=2.22, 95% CI: (1.39, 3.53), p=0.001). MSC was also associated with a shorter time to receiving injection recommendation versus USC (median: 21 vs. 32 days, log-rank: p<0.001; hazard ratio [HR]=1.90, 95% CI: (1.25, 2.90), p=0.003). MSC was associated with a higher likelihood of injection treatment (OR=2.27, 95% CI: (1.39, 3.73), p=0.001) and shorter lead time (HR=1.98, 95% CI: (1.27, 3.09), p=0.003). PS-matched analyses yielded similar conclusions. Conclusions: Care delivered at a multidisciplinary spine clinic was associated with a higher likelihood of recommending injection and a shorter lead time to injection administration when compared to a traditional unidisciplinary spine surgery clinic. Multidisciplinary clinics may facilitate coordinated care amongst different specialties resulting in increased utilization of less invasive treatment modalities while also improving care efficiency. The multidisciplinary clinic model is an important advancement in care delivery and communication, which can be used as a powerful method of improving patient outcomes as treatment guidelines evolve.

Keywords: coordinated care, epidural steroid injection, multi-disciplinary, non-invasive

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