Sibling Care Research Articles

PP323 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: UN-SEEN PATIENTS: CARING FOR SIBLINGS DURING PEDIATRIC CRITICAL HOSPITALIZATION

PP323 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: UN-SEEN PATIENTS: CARING FOR SIBLINGS DURING PEDIATRIC CRITICAL HOSPITALIZATION

Does a correlation exist between delayed vaccination and a decreased vaccine confidence?

ABSTRACT Delay in vaccination schedule may result in increased risk of vaccine-preventable outbreaks. Lack of parental confidence in vaccines and sociodemographic factors could be related to those delays. Vaccine Confidence Index (VCI) is an indicator to estimate confidence in vaccines, composed of simple dimensions about it and evaluated using a 5-point Likert scale. Objectives of this study, conducted in the Region of Murcia, Spain, were to determine which sociodemographic factors were associated with delayed administration in measles, mumps and rubella (MMR) vaccine, both first and second doses, and to evaluate if there were differences in parental vaccine confidence of children who were delayed on MMR vaccine schedule compare to vaccinated on time. The 2019–2020 (first dose) and 2016–2017 (second dose) cohorts were divided into four categories: vaccinated on time, slightly delayed, moderately delayed and highly delayed. Online questionnaire was sent to their parents, followed by a telephone questionnaire for non-responders. Regarding MMR first dose, a significant association was found between delay and birth order and intellectual/motor delay of children. Parental educational status, the main source of vaccine information and the social networks more frequently used by parents were also associated with delay. Suffering motor/intellectual delay and the obstacles to vaccination process derived from caring for other siblings were associated with delay in second MMR dose. The VCI decreased significantly in first dose group as delay increases but did not change in the second one. Confidence in vaccines and sociodemographic factors, respectively, were associated with delaying MMR first and second dose.

Development of a blueprint for sibling psychosocial services: A nationwide study.

Siblings of youth with cancer have heightened risk for poor long-term psychosocial outcomes. Although sibling psychosocial care is a standard in pediatric oncology, this standard is among those least likely to be met. To address barriers to providing sibling services, a blueprint for systematic psychosocial screening and support of siblings was developed based on feedback from a national sample of psychosocial providers. Semi-structured interviews were conducted with a purposive sample of psychosocial care providers (N=27) of various disciplines working in US pediatric cancer centers, varied in size, type, and extent of sibling support. Interviews queried providers' suggestions for the future of sibling psychosocial care and impressions of a blueprint for sibling service delivery, which was iteratively refined based on respondents' feedback. Interviews were analyzed using applied thematic analysis. Based on existing literature and refined according to providers' recommendations, the Sibling Services Blueprint was developed to provide a comprehensive guide for systematizing sibling psychosocial care. The blueprint content includes: (i) a timeline for repeated sibling screening and assessment; (ii) a stepped model of psychosocial support; (iii) strategies for circumventing barriers to sibling care; and (iv) recommendations for how centers with varying resources might accomplish sibling-focused care. The blueprint is available online, allowing providers to easily access and individualize the content. Providers indicated enthusiasm and high potential utility and usability of the blueprint. The Sibling Services Blueprint may be a useful tool for systematizing sibling psychosocial care, promoting wider availability of sibling-focused services, and addressing siblings' unmet needs.

Parental factors affecting their participation in decision-making for neonates with life-threatening conditions: A qualitative study Parents' participation in decision-making.

Parents and healthcare professionals make decisions for neonates with life-threatening conditions (LTCs). Parents may be inadequately included. Limited studies have evaluated influential factors. We aimed to explore parental factors affecting parents' participation in decision-making (DM) for neonates with LTCs. A qualitative study was conducted in four level III neonatal intensive care units (NICUs) in Tehran, and twenty-two in-depth, semi-structured, face-to-face interviews were conducted in 2019. Interviews were transcribed and analyzed using a conventional content analysis approach. During the coding process, participants' words were condensed into meaning units, and 297 open-coded were extracted and then grouped into thirteen subcategories based on similarities and differences. This process was repeated until four main categories were identified. Main categories and subcategories include "parental capabilities" (level of health literacy, emotional state, paradoxical feelings, and perception of the situation), "a sense of parental self-efficacy" (perception of parental role, awareness of self-abilities, and willingness to accept the parental role), "convictions" (religious beliefs and cultural values), and "living conditions" (job balance, household management and caring for siblings, and commuting) were found. Although factors were parental, professionals who care for neonates with LTCs should be trained in family-centered care (FCC) principles to involve parents in DM. Nurses should be aware of parents' abilities and inform them of their rights. Parents' presentation at the bedside prevents their marginalization, reduces feelings of guilt, and helps them understand their baby's behavior and surrounding reality. A formal neonatal palliative care (NPC) program can encourage open communication between professionals and parents. A multidisciplinary team should consider parents' needs and values.

Women in Empowered India; Challenges and Prospects

The expanding economy greatly benefits from the contributions of women in India. Women make up about half of our population. Over the past ten years, women’s literacy has increased at a rate that is 3% higher than that of men. Consequently, the number of illiterate women has decreased from 200.7 million in 1991 to 190 million in 2001. Nonetheless, the gender gap in schooling remains significant at 21.7%.There are several reasons for this, including restricted access to schools and inadequate restroom and drinking water facilities. In addition, as agriculture becomes more and more feminized, girls are burdened with caring for younger siblings, gathering water and fuel for cooking, and maintaining the home, all of which impede their ability to learn and grow. Women’s economic independence or self-reliance encourages women’s empowerment; nevertheless, chances for women are restricted by factors such as poverty, ill health, and discrimination, gender inequity and other issues, which eventually cause obstacles to women’s empowerment. Given that women are still discriminated against on many fronts, women’s empowerment is crucial. Several ministries and departments have created and implemented a variety of programs and initiatives to empower women. Attempts have been also made to go beyond empowerment and acknowledge women as agents of sustainable socio-economic growth and transformation. This paper aims to examine contemporary concerns and challenges facing women, as well as strategies and tactics for achieving women’s empowerment.

Rural adolescents schooling, skills learning-economic development for their own and community health and development

Background: Adolescents should be studying, have socio-cultural development, economic sufficiency is essential. But in remote, rural regions, there are many school drop-outs because of various reasons with possibilities of sequalae which affect health, development and wellbeing. Methods: After Institute’s Ethics Committees’ approval descriptive study was conducted in 100 villages to collect information from adolescents/young, 14-25, years neither studying nor working, as per objectives, 1046 study subjects. divided into, 14-17 years, 18-21 years, and 22-25 years. Results: Of 1046 study subjects, 717 (68.54%) were girls/ women 29.72% of 14-17 years, 32.35% of 18-21 years 37.93% of 22-25 years, 45 (6.27%) illiterates, 28.17% dropped at primary school. Reasons for dropouts included care of siblings, work in farms, household work. Total 693 of 1046 wanted to learn stitching. The 329 (31.46) boys/men, 30.30% 14-17 years old, 32.21%, 18-21 years, 37.99% 22-25 years 21 (6.38%) males were illiterate, 37.38% dropouts at primary level due to poverty, lack of interest, failure in examinations. Reasons for dropouts included work in farms; work at other places, household work. When asked about desires for skills learning, 1st choice of most of girls/women boys/ men was stitching second choice beauty parlour. Conclusions: Some adolescents/young were illiterate, many school dropout at primary level, more females married. Lack of support from family, poverty, care of sibling, infrastructure, lack of interest in education, repeated failure in exams, were reasons for drop outs. Most were interested in tailor’s job/beautician. They lacked vision of many possibilities.

‘No rest from the mess’: an intersectional analysis of young women’s pandemic lives in Aotearoa New Zealand

ABSTRACT This paper examines how the COVID-19 pandemic impacted the everyday lives of young women living in Aotearoa New Zealand. Engaging a feminist intersectional and youth studies approach and drawing upon interviews and focus groups with 45 young women (16–25 years) from diverse socio-economic and cultural backgrounds, we reveal how culture, ethnicity, socio-economic and living conditions impacted the gendered and emotional labor expected of young women (i.e. caring for younger siblings, vulnerable family members, various chores, part-time work), and how the practices of care for others impacted young women’s capacity for their own educational, social and career development. Ultimately, this paper highlights the remarkable agency of young women during the pandemic, their compassion and empathy for others, their learnings and reflections, and how this period of radical social disruption impacted their future imaginings for themselves. In so doing, our analysis raises important questions for youth-focused pandemic educational, social and employment policies, calling for more intersectional approaches that consider how COVID-19 is continuing to significantly and unevenly shape the identity development and life trajectories of young women.

Providing care for siblings of children on hospice.

Providing care for siblings of children on hospice.

Discharge against medical advice in pediatrics: A review and recommendation of a five-component approach

Patients who are discharge against medical advice (DAMA) present significant challenges on clinical, ethical, financial, and legal levels. Despite its multilevel impact, the factors explaining and predicting DAMA in different regions of the world remain underevaluated, especially in pediatrics. This article aims to provide a scope of review of the phenomenon of DAMA in pediatrics and guide healthcare providers on how to deal with common scenarios of DAMA requests through a five-component approach. A literature search was performed using PubMed with the following keywords: “leave against medical” OR “discharge against medical” AND “pediatrics” OR “child*” without a time limit. This search yielded 30 articles, and two more were added as secondary sources. DAMA is associated with several health adverse outcomes such as a higher prevalence of morbidity, complications, and even mortality. Financial burden associated with medical care seems to be a major factor driving the parental decision as well as difficulties in arranging care for other siblings, the perception that the child’s condition has improved sufficiently to be discharged, parental preferences for traditional or alternative medicine, and dissatisfaction with treatments. Dealing with DAMA requests requires skilled communication paired with a good understanding and the ability to translate the concepts of informed consent and shared-decision making into clinical practice.

Families in quarantine: COVID‐19 pandemic effects on the work and home lives of women and their daughters

AbstractThe onset of the COVID‐19 pandemic in March 2020 disrupted the lives of millions of US families, with rising unemployment and initial lockdowns forcing nationwide school and daycare closures. These abrupt changes impacted women in particular, shifting how families navigated roles. Even pre‐pandemic, US women were responsible for the majority of household labor and childcare, and daughters bore greater chore responsibility than sons. We surveyed 280 families early in the pandemic (Spring 2020) and another 199 families more than a year later (Summer 2021) about pre‐pandemic versus current work‐family conflict (WFC), division of labor and schooling, and children's daily activities. Early on, mothers reported increased WFC (especially family impacting work), mothers assumed primary responsibility for children's education at home, and daughters spent more time doing chores and educating siblings. One year in, WFC remained high but mother's stress was lower, parents reported working less from home, and children largely returned to face‐to‐face schooling. Yet, children, especially daughters, actually spent more time caring for siblings than early in the pandemic, though less time on chores overall. We conclude that policies that support families such as paid family leave and subsidized childcare are needed to right the gender inequalities exacerbated by the pandemic.

Effects of parental HIV on children’s education: a qualitative study at Mashambanzou Zimbabwe

We investigate mechanisms that influence the effects of parental HIV on the education of children. The study was conducted at Mashambanzou Care Trust in Harare, Zimbabwe. We sampled low-income HIV-positive and HIV-negative mothers who had a total of 71 children in their care. HIV-positive mothers were on treatment and women in the sample had at least one school-going child. We use a framework that describes the channels that influence the direct and indirect effects of the HIV status of a parent on investments in their children’s education. We find that the main reported mechanisms that influence this relationship are financial barriers exacerbated by HIV, children taking care of sick parents or siblings (child carers), and gender-differences in how parental illness affects children. In addition, we find that children of HIV-positive mothers do not always have birth certificates, which is a major barrier to school and exam registration in Zimbabwe.

Peer or Parent: The Role of Adolescent Children of Local Authority Foster Carers

Abstract When I was sixteen years old, my parents became local authority foster carers. There is no legal recognition of the role that older children play in the care of younger foster siblings. We are not recognised as carers and yet are often involved in providing care and supervision of younger siblings. There are recorded benefits to being a foster sibling, but there are also challenges that come with the role. Within this reflective narrative piece, I seek to trigger a discussion within the field around the role that young adults play in the fostering process. I use my own experience to raise key issues around the safeguarding of not only young people who are looked after but also those whose parents choose to foster. In doing so I aim to open debate around the responsibilities of practitioners to recognise and adequately prepare young adults for the role they will play in a fostering household.

Caregiving Activities and Its Impacts on Young Carers: Analysis of the Family Cases in the KBS 1TV program <Dong-Haeng>

본 연구의 목적은 ‘숨겨진 집단(hidden group)’으로 묘사되는 영케어러(young carers)가 어떤 환경에서 어떠한 돌봄활동을 하고 있는지 규명하고 그러한 활동이 아동에게 미치는 영향을 탐색하는 것이다. 이를 위해 KBS ITV <동행>에 출연한 가족사례에 대해 양적⋅질적 내용분석을 실행하였다. 먼저, 지난 2년 간(2020년 7월~2022년 6월) 방영된 99편 중 가족원을 돌보는 아동이 있는 41개의 사례를 선정한 후 빈도분석, 교차분석 등을 통해 영케어러의 인구사회학적 특성과 가정환경을 파악하였다. 이어서, 연령에 비해 과도한 수준의 돌봄활동을 수행하는 것으로 평가된 30명의 영케어러를 선정하여 구체적인 돌봄활동을 파악하였으며, 질적분석을 통해 돌봄활동이 영케어러에게 미친 영향을 조명하였다. 영케어러들은 가사, 가족원 돌봄은 물론 가정관리, 정서적 지원, 경제활동에 이르기까지 다양한 영역에서 돌봄활동을 수행하였는데, 설거지, 요리 및 상차림, 애정과 감사를 언어로 표현하는 것, 청소, 빨래 등이 특히 높은 참여율을 보였다. 돌봄활동으로 인한 부정적 영향으로는 학습활동에 투입할 에너지와 시간 부족, 친구관계 형성 및 유지의 어려움, 박탈당한 놀 권리, 가족상황을 우선적으로 고려한 진로선택, 장기간 지속되는 돌봄을 둘러싼 심리정서적인 어려움이 확인되었으며, 긍정적인 영향으로는 성숙함과 어른스러움, 경제개념과 삶의 지혜 터득이 도출되었다. 분석 결과를 바탕으로 영케어러를 위한 개입방안을 다각적으로 모색하고, 사회복지교육에서의 시사점을 제시하였다.The purpose of this study is to identify in what environment and what kind of caring activities are performed by young carers, described as a ’hidden group’, and to explore the impact of such activities on the children. To this end, a quantitative and qualitative content analysis was conducted on family cases appearing in the KBS ITV <Dong-Haeng> program. First, among the 99 episodes aired over the past two years (July 2020 to June 2022), 41 cases with children under the age of 18 taking care of family members were selected. Using frequency analysis and cross-tabulation, demographic characteristics and home environment were identified. Then, 30 young caregivers who were evaluated to be performing an excessive level of caregiving activities were selected, and their specific caring activities were identified and analyzed using a mixed method. Young carers have performed caring activities in a variety of areas including domestic tasks, sibling care, personal care, household management, emotional care, and financial care. Specifically, washing dishes, cooking and table setting, expressing verbal affection and gratitude to care receivers, cleaning, and laundry were observed most frequently in the cases. The impact of caring activities on young carers was illuminated through qualitative analysis. Negative effects of caring activities are more dominant and categorized as follows: lack of energy and time to invest in learning activities, difficulty in forming and maintaining friendships, deprivation of right to play, education and career choice influenced by family situations over individual needs, and psychological and emotional difficulties surrounding long-term care. As positive effects, maturity, sense of economy and life wisdom were derived. Based on the analysis results, interventions for young caregivers are suggested in multiple dimensions and implications for social welfare education are discussed.

Middle and High School Students Who Take Care of Siblings, Parents, and Grandparents: Associations With School Engagement, Belonging, and Well-Being

This partnership-based study identified how many middle and high school students take care of parents, siblings, and grandparents at home, via student surveys across Rhode Island public schools (N = 48,508; 46% White non-Latinx; 21% Latinx; 47% girls). Further, we investigated how students’ caregiving for family related to their school engagement, belonging, and emotional well-being. A sizable proportion of students reported caring for family for part (29%) or most of the day (7%). Girls and Black, Asian, Latinx, Native, and multiracial youth were more likely to care for family, compared to boys and White non-Latinx youth. Caregiving students from all demographics were more likely to experience intense sadness compared to noncaregivers, revealing a need to support caregiving youth in schools. In addition, caregiving girls reported lower levels of school engagement and school belonging. However, caregiving for part of the day was related to greater belonging among Black and Native youth.

Parents’ Perspectives of Partnering With Therapists to Administer Intensive Rehabilitation for Children With Perinatal Stroke

<h3>Research Objectives</h3> Parental participation in their young children's rehabilitation has been promoted to increase intervention intensity. Yet, parents' perspectives on increased involvement, including the barriers and facilitators, remain unclear. The objective of this study was to explore parent perspectives of partnering with therapists to administer early, intensive rehabilitation to their children with perinatal stroke. <h3>Design</h3> Parents participated in semi-structured interviews before and after partnering with a physical therapist (PT) to deliver a 12-week intervention for their child. Interviews were audio recorded and transcribed verbatim. Interpretive description methodology was used to generate knowledge that is relevant for clinical practice. <h3>Setting</h3> Rehabilitation occurred in the child's home and in pediatric physical therapy clinical sites in three cities in Canada. <h3>Participants</h3> Twelve Parents (11 mothers, 1 father) of children between 8 months and 3 years old with spastic unilateral cerebral palsy (CP) as a result of perinatal stroke. A diverse group was sampled including single parents, parents of one or multiple children, parents working in and outside the home, families who had immigrated to Canada and families with a wide range of previous experience with rehabilitation. <h3>Interventions</h3> The intervention was ELEVATE (Engaging the Lower Extremity Via Active Therapy Early), a play-based PT intervention targeting the lower extremity of children with CP. The intervention was 1 hour/day, 4 days/week for 12 weeks and was administered by a PT in partnership with parents (2 sessions delivered by each/week). <h3>Main Outcome Measures</h3> N/A. <h3>Results</h3> The three themes were 1) the importance of taking a positive approach to therapy, 2) the focus on maximizing their child's potential, and 3) participating in intensive rehabilitation is "worth it", despite the challenges. Families discussed the importance of making therapy fun, the value of intervening when their child is young, and a number of barriers to participating in intensive rehabilitation including long commutes and requiring child care for siblings. <h3>Conclusions</h3> These results will help facilitate meaningful engagement of parents in their children's rehabilitation, especially early, intensive rehabilitation and home exercise programs. <h3>Author(s) Disclosures</h3> None.

Inconsistent, uncoordinated, and reactive: The current state of sibling psychosocial care.

Although providing sibling psychosocial services is a standard of care in pediatric oncology, initial survey research suggests that this standard is rarely achieved and siblings' support needs remain unmet. Which sibling psychosocial services are available and how centers provide such services is unknown. To identify targetable services gaps, this qualitative study characterizes current sibling psychosocial care practices at select pediatric cancer centers across the United States. Semi-structured interviews were conducted with a purposive sample of psychosocial care providers (N=27) working across the United States in pediatric oncology centers of varied sizes. Interviews queried providers regarding sibling-focused parent psychoeducation, psychosocial screening, comprehensive assessment, and psychosocial support offerings. Interview data were analyzed using Applied Thematic Analysis. Across cancer centers, sibling care practices did not align with consensus-based recommendations. The nature and availability of sibling-focused psychoeducation, screening, assessment, and support were variable between and within centers. Siblings themselves were largely absent from sibling psychosocial care, and care was rarely sibling-specific. The flow of information about siblings was discontinuous and uncoordinated across the care continuum, resulting in psychosocial care provided reactively, typically in response to parental concerns. Sibling psychosocial care provision falls short of established care recommendations, leaving sibling psychosocial needs unmet. Findings highlight the need for tools and strategies to facilitate the implementation of sibling psychosocial care across the care continuum, to support siblings' psychosocial functioning across the life course.

The Mother-Sister of Victorian Fiction: Domestic Compromises and Replaceable Heroines

Abstract This article critically examines the figure of the “mother-sister” in Victorian popular fiction. Sisters whose main function in the household comprises mothering their siblings, combines several narrative possibilities in nineteenth-century fiction, while constructively complicating the representation of domestic work. Whereas canonical fiction depicts sisters taking care of motherless siblings more often than their general absence from critical discussion might suggest, for several Victorian women writers, the mother-sister’s experience offers an opportunity to detail everyday domestic labor, to validate homemaking without sentimentalizing it, and to express frustration without rejecting domestic ideals. After a general discussion of the significance of this hitherto neglected figure in Victorian culture, this article juxtaposes the mother-sister’s representation in novels by otherwise markedly different popular authors of the time: the religious writer Charlotte Yonge and Mrs. Henry Wood, one of the most successful sensation novelists of the time. Their contrasting portrayal of reluctant, resentful, and resented mother-sisters offers a different angle on expected depictions of capable homemaking as a sign of value in Victorian fiction.

Professionals' Awareness of Young Carers in Schools: Results from a French Survey.

Few studies have investigated professionals' awareness of young carers (YCs). Therefore, the main aim of this study was to explore school professionals' awareness of YCs. The secondary aim was to compare professionals' responses according to their occupation. A total of 2658 professionals took part in this study by completing an online questionnaire. The results indicated that the mean for the perceived age for care beginning was 10.3 years old, with parents being perceived as the most frequent care recipient. The main caring activities reported were domestic chores, emotional support and sibling care, while care provided directly to the care recipient was perceived as less frequent. Many suggestions for improving the identification, referral and support of YCs were seen as relevant, but professionals were less supportive of suggestions for adjustments within schools. The key training needs centered around better identifying YCs and developing better knowledge of their difficulties. Differences were observed according to occupation, with administrative staff and teachers having less accurate perceptions than school counsellors as well as social and health professionals. This study shows that it can be difficult for school professionals to imagine a child providing care. Specific training, therefore, needs to be proposed according to school professionals' occupations.

Are We All the Same When Faced with an Ill Relative? A Person-Oriented Approach to Caring Activities and Mental Health in Emerging Adult Students.

Dealing with the illness/disability of a relative is part of everyday life for many students, who may have to take on caring responsibilities. Fulfilling a caring role during emerging adulthood has been associated with poorer mental health. This study adopts a person-oriented approach in exploring the caring experience in relation to mental health. The sample comprised 3273 students (Mage = 20.19 years, SDage = 1.89; 80.35% female) who answered a series of questionnaires. A cluster analysis identified six patterns of caregiving activities in terms of their nature and extent: few caring activities; household chores; household and financial/practical help; emotional care; sibling care; and many caring activities with emotional and personal care. A series of analyses showed that caring activities differed according to age, gender, living arrangements, financial status, the ill/disabled relative being supported, and the relative’s type of illness/disability. A multivariate analysis of covariance showed that emerging adult students with patterns featuring household chores had better mental health than those with few caring activities. Overall, our findings indicate that having an ill/disabled relative can lead an individual to take on a wide range of caring responsibilities that may have varying consequences for emerging adult students’ mental health.

“Continuously struggling for balance”: The lived experiences of Dutch parents caring for children with profound intellectual and multiple disabilities

ABSTRACT Background Parents of children with profound intellectual and multiple disabilities (PIMD) have extensive care duties. This study describes the phenomenon “parenting a child with PIMD.” Method We conducted in-depth interviews with 25 Dutch parents. A reflective lifeworld research was used. Findings The essential meaning of the phenomenon was understood as “continuously struggling to create and maintain new equilibriums that protect the child and the family from hardship; changing in context through time.” The following eight constituents were identified: (1) medical complexity; (2) multidimensional weariness; (3) care for siblings; (4) social connectedness; (5) uncertainty about the future; (6) wrecking bureaucracy; (7) dependency on healthcare delivery; and (8) financial concerns. Conclusions Healthcare services should provide families with easy access to assistive technology and services needed to manage family life. Responsiveness to parents’ challenges offers them the possibility to participate in society. Healthcare professionals should address the parents’ perspectives related to the child’s quality of life.