Sibling Care Research Articles

Psychosocial standards of care for children with cancer and their families: A national survey of pediatric oncology social workers

ABSTRACTIn 2015, an interdisciplinary group of psychosocial experts developed The Standards of Psychosocial Care for Children with Cancer and Their Families. This paper presents data from a national survey of pediatric oncology social workers and their experiences in delivering psychosocial care to children and families. In total, 107 social workers from 81 cancer institutions participated in a 25-item online survey that mirrored the 15 Standards for Psychosocial Care. Both closed and open-ended questions were included.Social work participants reported that psychosocial support is being provided at most cancer centers surveyed, primarily by social workers and child life specialists, addressing adaptation to the cancer diagnosis, treatment, and transitions into survivorship or end-of-life care and bereavement. While social workers reported offering comprehensive services throughout the cancer trajectory, many of the 2015 Standards are not being systematically implemented. Areas for improvement include funding for psychosocial support staff and programs, incorporation of standardized assessment measures, assessment for financial burden throughout treatment and beyond, consistent access to psychology and psychiatry, integrated care for parents and siblings, and more inclusion of palliative care services from time of diagnosis.

Sibling Care Giving Experiences among the Rural NSO Children of Cameroon

Sibling Care Giving Experiences among the Rural NSO Children of Cameroon

Adolescent caretaking of younger siblings

Sibling interactions play important roles in socialization; however, little is known about sibling caretaking in contemporary families. This study examined the prevalence of adolescents providing care for younger siblings and the quality of care as associated with a broad spectrum of individual, microsystem, and macrosystem factors. Relying on nationally representative time diary data from the American Time Use Survey, we found that factors at multiple levels (individual, microsystem, and macrosystem) were associated with sibling caretaking. Gendered patterns in caretaking emerged. The caretaker’s sex and the ages and sexes of younger siblings correlated with the incidence and quality of sibling care. Boys more often cared for younger brothers, and girls more often cared for younger sisters. In addition, boys more often played with younger siblings while girls more often provided physical care and talked with younger siblings, mirroring gendered patterns seen in parents.

Escola, trabalho e perspectiva de futuro de jovens estudantes

This article addresses the relationship of young students with work and your future perspectives. It is noticed that the work is a reality among young people surveyed, involving remunerated activities or carried out by internships, as well as others systematic and everyday activities such as the care of siblings and housework. The work occupies a significant portion of the student's time out of school, so that this competes strongly to the studies, preventing young people fully live their student status. The submission to work earlier and increasingly in precarious conditions, in the current capitalist sociability, compromises not only the professional projects of these students, but especially strengthens your class condition, limiting increasingly its training possibilities, creation and human development.

Caregiver's Burden of the Patients With Traumatic Brain Injury.

Insufficient attention towards caregivers has resulted in the emergence of psychological and health complaints. Affliction tethers more towards spouses as compared to parents and females as compared to males. The role of sibling care givers was found to be no different from parents or spouses. Marital relationships were found to suffer the most, with the caregiver leaving the traumatic brain injury (TBI) patient in his time of need. The Brief Symptom Inventory (BSI) and family assessment device (FAD) predicted a correlation between patient variables and caregiver discontent. The Blacks/Hispanics proved to cope better with stress and their caregiver roles as compared to Whites. Time elapsed since the injury was found to relieve distress, while the surprising severity of the injury has no recorded impact. Social support or rather a lack of it has been seen to have an impact on family homeostasis, which can further be deteriorated by substance abuse by the patient. The therapeutic intervention found to be most advantageous was the D'Zurilla and Nezu social problem-solving model. Current evidence suggests that emphasis should be given on proper education and encouragement of caregivers before discharge of TBI patients from hospital to reduce the incidence of stressors. Additionally, counseling sessions should be led by professionally led support groups for dealing with psychological symptoms and peer-led group to eliminate social insecurities of caregivers.

Psychosocial care in the Department of Pediatric Hematology and Oncology of public hospitals in Argentina.

Blood diseases and cancer are part of a group of rare conditions in pediatrics. In general, cancer treatments are prolonged (months or years), so psychosocial support has been introduced to provide comprehensive care to these patients. To explore psychosocial care provided at the public hospitals of Argentina to children and adolescents with cancer. Population and Methods. An electronic questionnaire was sent to the heads of the Departments of Hematology and Oncology, Mental Health, and Social Services of 27 public hospitals providing care to pediatric patients with cancer. The survey included questions related to psychosocial care provided to this group of patients. Answers were collected and processed in the 2013-2014 period. Of the total number of health care providers contacted, 62.6% (47/75) completed the questionnaire. As per hematologist-oncologists, the three specialties complied with the recommendations made by the International Society of Pediatric Oncology to a greater extent than that reported by the psychosocial area. Such difference was repeatedly observed in all answers. The standards that were observed more consistently were continuation of education and care of healthy siblings. The health care providers from the three specialties indicated that they lacked formal mechanisms to detect failures in treatment adherence in an early manner, although treatment withdrawal interventions were systematized. Providers from the psychosocial area indicated that human resources were lacking and perceived little interdisciplinary work. This study reported partial adherence to the standards recommended by the International Society of Pediatric Oncology. The assessment made by hematologists-oncologists was different from that made by health care providers from the psychosocial area.

Why do women not adhere to advice on maternal referral in rural Tanzania? Narratives of women and their family members

ABSTRACT Background: In most low-income countries, many women with high-risk pregnancies and complications do not reach the referral hospitals despite the provision of referral advice. Objective: To explore how antenatal maternal referral advice is understood and handled in a rural Tanzanian community. Methods: Individual in-depth interviews were conducted with six women who did not go to hospital and 13 people who were involved in the referral advice. Narrative analysis was used to describe and create meanings out of the decision-making process. Results: In all interviews, not following the referral advice was greatly influenced by close family members. Three main traits of how referral advice was understood emerged: convinced referral is not necessary, accepting referral advice but delayed by others, and passive and moving with the wind. The main reasons given for declining the referral advice included discrediting midwives’ advice, citing previous successful deliveries despite referral advice; being afraid of undergoing surgery; lack of support for care of siblings at home; and high costs incurred during referral. Conclusions: Declining maternal referral advice centred around the pregnant women’s position and their dependence on the family members around them, with a decreased ability to show autonomy. If they were socially and economically empowered, women could positively influence decision making during maternal referrals.

Experimentally induced alloparental care in a solitary carpenter bee

Alloparenting, in which adults help to raise nondescendent offspring, is the hallmark of both cooperatively breeding and eusocial animal groups. Previous studies of the small carpenter bee, Ceratina calcarata, showed that mothers sometimes produce very small daughters, reminiscent of eusocial workers, suggesting retention of a complex social trait, alloparenting, in this secondarily solitary bee species. We tested the hypothesis that small daughters can act as alloparents by removing mothers from nests just prior to brood emergence, creating conditions under which small daughters should behave as alloparents. In 25 of 43 orphaned nests, a daughter took over the mother's role, foraging for pollen to feed her siblings. Alloparenting never occurred in control nests with surviving mothers. Alloparenting also did not occur when mothers disappeared before brood emerged as adults, as this invariably resulted in complete brood mortality. A second experiment demonstrated that post-eclosion feeding is necessary for overwintering survival. The expression of alloparenting in experimental nests suggests that alloparents could represent maternal insurance to ensure that adult offspring are fed before winter, and that alloparents could achieve indirect fitness from sibling care through assured fitness returns. However, complete nest failure in orphaned control nests demonstrates that brood only survive if their mother survives as well, which obviates the need for alloparenting. Therefore, alloparenting behaviour appears to represents the retention of an ancestral social trait that appears to have no current adaptive benefit in circumstances that highly favour solitary nesting and maternal brood care.

Living with disability. Taking care of siblings

The birth of a disabled child is a critical event that places all the members of the family in a condition of great vulnerability. When talking about families with a disabled child, attention is usually focused on the parents. Siblings tend to play a marginal role, as shown in the referred literature, in this specific field of investigation. Communicating diagnosis to siblings means involving them in the process of family change, making them active players rather than “spectators” in their own “existential niche”. Communication of diagnosis is a delicate, continuous process that has to be tackled appropriately, using targeted words and educational actions. Children need help in accepting and welcoming their disabled sibling, with all his/her characteristics (and deficits), through a balanced, pondered approach that includes both the dimension of co-development and the acknowledgement of problematic situations.

The role of older siblings in the sexual and reproductive health of Mexican-origin young women in immigrant families

In the USA, young people of Mexican-origin are more economically disadvantaged and experience higher birth rates than many other Latino groups. In this paper, we examine the influence of older siblings on the sexual and reproductive health of Mexican-origin immigrant women. Qualitative data were drawn from life history interviews with 21 first- and second-generation Mexican-origin women, aged 27–41 years old, resident in the Metro Denver area. Data suggest that older siblings may protect younger sisters from risky sexual behaviours through older siblings’ responsibility and care for younger siblings, close and supportive sibling relationships, older siblings’ advice about both sexual health and academic success, and sibling modelling. These mechanisms appear particularly protective due to the social and economic hardships immigrant families often face. Implications include fostering healthy sibling relationships and involving older siblings more fully in the sexuality education of younger siblings.

Contributors to Adult Sibling Relationships and Intention to Care of Siblings of Individuals With Down Syndrome.

The contribution of childhood sibling relationships to adult sibling relationships and intention to provide care was investigated in a sample in which one member of each dyad had Down syndrome. Thirty-nine adult siblings of an adult with Down syndrome who had participated in a study of sibling relationships in childhood/adolescence provided data about the quality of current relationships and of their intention to provide care for their brother/sister with Down syndrome in the future. Only behavior problems in the child with Down syndrome predicted warmth of the current adult relationship. Although adult sibling relationships were reported to be warm, the quality of neither the current nor the past relationship was associated with the reported intention to provide care.

Altered Daily Activities and Shame Resulting from Children Experiencing Food Insecurity in Rural South Carolina and Oregon

Children are cognitively, emotionally, and physically aware of food insecurity and respond to it by participation in adult strategies, initiating their own, and generating resources. Food insecurity is substantially detrimental for children, resulting in behavior problems, disrupted social interactions, compromised school performance, poor diet, less physical activity, and poor health, but we lack empirical data on the possible mechanisms. Data from Venezuela suggest that child experiences of food insecurity result in alterations in child daily activities and shame, and that these in turn result in adverse behavior, social interactions, and school performance. This study investigated this possible mechanism in rural children in South Carolina and Oregon.We conducted a qualitative study in 40 children (9–15 y), with 20 in each state. The children were living in rural poor neighborhoods and ethnically diverse. Their families had low income; children and their families were food‐insecure. Individual in‐depth interviews were conducted with children in private using an interview guide with open‐ended, semi‐structured questions. Interviews were recorded, transcribed, coded, and analyzed using Nvivo 10.Alterations in activities occurred because of not having enough money and/or food. Children were exposed to lack of planning in activities after school, during weekends, and on vacations. Activities were low quality with respect to child health and development (e.g., phoning, texting, watching TV, “messing around”). Almost all children reported having responsibilities of chores at home, meaning less time being sedentary, resting, studying, and learning in after‐school activity. Some children, where one parent was absent, took adult responsibilities, such as taking care of siblings and doing more chores. During episodes of food insecurity, children had less frequent eating times together, disrupted eating pattern, or ate alone, or each member ate in different locations of home. Some rural children did healthy activities like having contacts with animals, gardening, or farming. All children who talked about receiving free lunch, free box of food, or visiting a food bank reported feeling shame; some did not want others to know about their situation. Children felt anger, sadness, frustration, and worry due to lack of food, and shame due to lack of food and receiving assistance. Some children interacted more with others to obtain food; others interacted less, and read, watched TV, did videogames, or slept. Some children missed school because of sleep disruptions or parental illness, which likely affected school performance.Children experienced shame for being food insecure and receiving food assistance, and had altered daily activities, which resulted in changes in behavior, social interactions, and school performance. The shame experienced particularly in receiving food assistance was universal and powerful, suggesting shame as an important mechanism leading to consequences for children and raising concern about detrimental effects of providing food assistance directly to children.Support or Funding InformationEconomic Research Service of the U.S. Department of Agriculture through the RIDGE Center for Targeted Studies at Purdue University

Non-Breeding Eusocial Mole-Rats Produce Viable Sperm--Spermiogram and Functional Testicular Morphology of Fukomys anselli.

Ansell’s mole-rats (Fukomys anselli) are subterranean rodents living in families composed of about 20 members with a single breeding pair and their non-breeding offspring. Most of them remain with their parents for their lifetime and help to maintain and defend the natal burrow system, forage, and care for younger siblings. Since incest avoidance is based on individual recognition (and not on social suppression) we expect that non-breeders produce viable sperm spontaneously. We compared the sperm of breeding and non-breeding males, obtained by electroejaculation and found no significant differences in sperm parameters between both groups. Here, we used electroejaculation to obtain semen for the first time in a subterranean mammal. Spermiogram analysis revealed no significant differences in sperm parameters between breeders and non-breeders. We found significantly larger testes (measured on autopsies and on living animals per ultrasonography) of breeders compared to non-breeders (with body mass having a significant effect). There were no marked histological differences between breeding and non-breeding males, and the relative area occupied by Leydig cells and seminiferous tubules on histological sections, respectively, was not significantly different between both groups. The seminiferous epithelium and to a lesser degree the interstitial testicular tissue are characterized by lesions (vacuolar degenerations), however, this feature does not hinder fertilization even in advanced stages of life. The continuous production of viable sperm also in sexually abstinent non-breeders might be best understood in light of the mating and social system of Fukomys anselli, and the potential to found a new family following an unpredictable and rare encounter with an unfamiliar female (“provoked or induced dispersal”). Apparently, the non-breeders do not reproduce because they do not copulate but not because they would be physiologically infertile. The significantly increased testes volume of breeding males (compared to non-breeders) is in agreement with previously found higher testosterone levels of breeders.

Child-headed households in Rakai District, Uganda: a mixed-methods study

Objective: An important but neglected consequence of the AIDS pandemic that continues across sub-Saharan Africa is the phenomenon of child-headed households (CHH). This study aims to describe the challenges to health and well-being for young people living in child-headed households.Methods: A mixed-methods research approach linked common themes using qualitative and quantitative instruments to provide a broad picture of the location and challenges of CHH in Kabira, Kyotera and Kamuganja in the Rakai District of southern Uganda. Local knowledge was used to locate CHH.Results: 163 children living in 40 CHH were traced: 42·5% of the household heads were double orphans caring for younger siblings, and 43% were also caring for chronically ill or disabled grandparents who were economically unproductive and largely dependent on the eldest child for survival. It was found that those heading households were more likely not to attend school than children living at home with a parent. Their immediate needs ranged from food and shelter to health-care and education. Fear was a major theme: 38% of those interviewed reported fear of ‘violence’. Children as young as 13 were responsible for navigating through complex decision-making processes from everyday basic necessities to decisions on the health care of younger siblings and grandparents.Conclusion: Children and young people living in CHH are a largely invisible and highly vulnerable population. Clear, officially accepted definitions of CHH are a first step in recognising this vulnerable group for whom safeguards will be necessary as social work develops in lower- and middle-income countries (LMICs). The precise numbers of CHH are unknown and further examination of this undocumented group is needed.

Desarrollo y validación de un instrumento para la evaluación de los subsistemas familiares de pacientes pediátricos hospitalizados por enfermedad crónica (eSisFam)

Resumen Antecedentes. La teoría sistémica de la familia plantea que en ésta existen tres subsistemas: conyugal, parental y filial, los cuales responden, según su particular función, cuando uno de los miembros en edad pediátrica enfrenta alguna enfermedad crónica que amenaza su vida. La evaluación de las familias en un contexto hospitalario institucional presenta distintos desafíos debido al tiempo mínimo necesario para obtener un diagnóstico preciso y por la escasez de recursos humanos preparados para dichas tareas. Objetivo. Desarrollar y validar un instrumento para la evaluación de los subsistemas familiares durante la hospitalización a causa de una enfermedad crónica pediátrica (eSisFam). Método. A partir de la bibliografía y de instrumentos conocidos de funcionamiento familiar, se conformó uno nuevo de cuatro secciones: sistema general y subsistemas conyugal, parental y filial. Participaron 312 cuidadores primarios de pacientes crónicos internados en un hospital público pediátrico. Los reactivos tipo Likert con cuatro opciones de respuesta, fueron contestados en un programa de cómputo. Se determinó la validez de contenido, de constructo y la confiabilidad. Resultados. La validez de contenido arrojó más del 80% de acuerdo interjueces. La validez de constructo por análisis factorial exploratorio identificó tres causas del sistema general (cohesión, comunicación y adaptación), dos del subsistema conyugal (relación afectivo-sexual y distanciamiento-infidelidad), tres del parental (bienestar, responsabilidad compartida y cuidado de los hermanos) y tres del filial (bienestar, conocimiento de la enfermedad y aceptación-participación) con coeficientes alfa de Cronbach superiores a 0.80. Discusión y conclusión. El instrumento desarrollado (eSisFam) es válido y confiable para una evaluación general del sistema familiar y de los subsistemas conyugal, parental y filial. La medida podrá ser utilizada en el hospital de pediatría para la detección temprana de situaciones familiares que pudieran interferir con la atención médica del niño o adolescente.

Impacts of maternal mortality on living children and families: A qualitative study from Butajira, Ethiopia

BackgroundThe consequences of maternal mortality on orphaned children and the family members who support them are dramatic, especially in countries that have high maternal mortality like Ethiopia. As part of a four country, mixed-methods study (Ethiopia, Malawi, South Africa, and Tanzania) qualitative data were collected in Butajira, Ethiopia with the aim of exploring the far reaching consequences of maternal deaths on families and children.MethodsWe conducted interviews with 28 adult family members of women who died from maternal causes, as well as 13 stakeholders (government officials, civil society, and a UN agency); and held 10 focus group discussions with 87 community members. Data were analyzed using NVivo10 software for qualitative analysis.ResultsWe found that newborns and children whose mothers died from maternal causes face nutrition deficits, and are less likely to access needed health care than children with living mothers. Older children drop out of school to care for younger siblings and contribute to household and farm labor which may be beyond their capacity and age, and often choose migration in search of better opportunities. Family fragmentation is common following maternal death, leading to tenuous relationships within a household with the births and prioritization of additional children further stretching limited financial resources. Currently, there is no formal standardized support system for families caring for vulnerable children in Ethiopia.ConclusionsImpacts of maternal mortality on children are far-reaching and have the potential to last into adulthood. Coordinated, multi-sectorial efforts towards mitigating the impacts on children and families following a maternal death are lacking. In order to prevent impacts on children and families, efforts targeting maternal mortality must address inequalities in access to care at the community, facility, and policy levels.

Mediocre or excellent-where does your facility stand? Becoming a perinatal loss gold standard hospital

During times of limited funding and health care challenges, hospitals and clinics must continue their commitment to give excellent, ‘gold standard’ care to bereaved families. Since families only get one chance to “do it right” when their baby dies in miscarriage, stillbirth, and infant death, they deserve excellent care. A premier perinatal loss program needs solid leadership; administrative support; financial resources; system-wide communication and coordination; and well-trained and supported staff, who can then offer individualized patient-based, comprehensive, and compassionate care to bereaved families. [1,2] Hospital management that supports the development, continuity, and ongoing financial support of a well-planned and implemented hospital-wide perinatal loss program, is the first component found in a Gold Standard program. All areas of the hospital that work with perinatal loss, clinics, emergency departments, surgical services, and the birth center, must be included in the program. Financial support allows for staff hours dedicated for bereavement support and budget for education, training, materials, resources and events. [1] The second component of the program is that all staff is appropriately and routinely trained, mentored, and supported, and that the program is based on comprehensive national standards, protocol, and policies [3]. Annual, mandatory education of staff, frequent updates, area workshops, and clear guidelines are essential [1,4]. Mentoring of new or unsure staff, support with paperwork, and help with memory making activities are important areas of focus. Recognition and support of staff is also essential for a successful program. The final component of the program is that there is an integrated process that offers seamless, excellent care to each and every family from the time of their diagnosis, during their hospital stay, and with ongoing care by their medical provider team, including clinic points of contact. Initial communication and referral upon diagnosis is critical for informing and educating families regarding their options [2]. When possible, slowing hospital admittance and sharing practical resources is recommended to assist families in preparation for the birth of their baby. This strategy usually results in lessened shock and more control for the parents. Birth planning and companioning, which is presently being offered by trained hospital/clinic staff, local care companions, and by Baby Loss Advisors™, can provide families with individualized, culturally specific care [5]. This care and support occurs prior to induction, throughout the process of meeting and saying goodbye to the baby, and continues post hospital discharge. When this type of adjunct care paradigm is utilized, parents have a better chance of receiving comprehensive, consistent, and ongoing care. Bedside care of the family includes involvement of extended family and friends, sibling care, memory making, and education of parents regarding handling of baby’s body and funeral planning [6,7]. Consistent, informed caregivers are critical during this difficult time for the family. The time of saying good-bye to the baby has been found to be one of the most difficult times during the family’s bereavement experience. Bereavement and medical discharge planning allows for a time to provide education, resources and a transition to home after the loss. Follow-up care involves supportive phone calls, support groups, and other touch points such as community memorial events [8]. Such ongoing care may help the family continue to heal. Barriers to the Gold Standard program are related to a lack of financial resources, staffing issues and needs, healthcare provider’s lack of interest, and communication challenges. However, a designated individual, who is responsible for advocating and directing the program, can work with leaders and providers to put bereaved families first and help them honour the lives of their babies. [2]. A Perinatal Loss Gold Standard manual, which includes checklists, assessment tools, and policy templates, was presented as one option to aid hospitals in developing and improving their own program [9]. The RTS program was also offered as another resource for hospital program training and development [1].

Pediatric Cancer Genetics Research and an Evolving Preventive Ethics Approach for Return of Results after Death of the Subject.

The return of genetic research results after death in the pediatric setting comes with unique complexities. Researchers must determine which results and through which processes results are returned. This paper discusses the experience over 15 years in pediatric cancer genetics research of returning research results after the death of a child and proposes a preventive ethics approach to protocol development in order to improve the quality of return of results in pediatric genomic settings.

Mothering & Psychoanalysis: Clinical, Sociological and Feminist Perspectives

Petra Bueskens has edited and organised an impressive array of contemporary writing on mothering and psychoanalysis from clinical, sociological and feminist perspectives. The book consists of five sections: the therapist as mother; the mother in therapy; mothers in art and culture; mothers in theory and practice; and mothering, therapy culture and the social. Highlights of the volume address maternal subjectivity; the rewards and unrecognised costs paid by working mothers; the relation between the devaluation of care and the feminisation of the helping professions; and how maternal legacies may ravage daughters, whose maternal bonds may lay siege to a sense of agency hijacked by anger, envy and a perpetual sense of loss. This issue of mother-daughter ambivalence is touched on in many of the essays across the five sections of the volume, and will be the focus of my discussion here, particularly in relation to how maternity and a woman’s identity are thought of as either condensed, distinct or informing one another. One of the themes of the volume is the way a daughter’s sense of abandonment, or a perceived absence of care, (whether due to her mother’s own ambivalence, or depression, for instance, or her other social commitments), can animate what Jungians refer to as dark animus, where the struggle to individuate from the mother prevents realisation of a maternal inheritance on the side of agency and care. S. Alease Ferguson and Toni C. King’s chapter ‘Dark Animus: A Psychodynamic Interpretation of the Consequences of Diverted Mothering among African-American Daughters’ presents cases of African American women whose adolescence was marked by the absence of their mothers, many of whom were working as domestic carers in other households. Such absence and the demand to pick up the domestic work and care for siblings left these women struggling with maternal ambivalence or a refusal to become mothers themselves. Nancy Chodorow, in ‘Too late: The Reproduction and Non

Separation, Visitation and Reunification: Michigan Child Welfare Reform and Its Implications for Siblings

Removal of children from abusive or neglectful families is an unfortunate but necessary aspect of child protective services, and the separation of siblings can be especially traumatic. This paper examines the Dwayne B. v. Snyder Modified Settlement Agreement (MSA), the result of a class action lawsuit regarding the management of the child welfare foster care system by the Michigan Department of Human Services. The MSA contains several mandates regarding the handling of siblings, though various measures of compliance remain unmet. Through field observations and interviews within the Michigan foster care system, we identify several factors prohibiting effective sibling care. Each year over 200,000 children enter foster care in the United States, most often upon the intervention of child protective services [CPS] who become involved in children's lives when allegations of abuse and neglect are confirmed (Child Welfare Information Gateway, 2012). While such intervention may be necessary, state interference in child-victims' lives is often traumatic as well. Allowing (non-offending) siblings regular and quality contact with one another, and where possible placing them in the same foster home, may mitigate the effects of CPS involvement. Unfortunately a host of factors impact sibling interaction and out-of-home placement.