Disabled Sibling Research Articles

The role of family and individual factors in going through adolescence having a disabled sibling - analysis of a healthy child's functioning. A case-control study protocol.

Having a disabled sibling can be a source of extremely important and enriching experiences that foster the development of social and emotional competences, as well as broadening the child's perspective and knowledge. On the other hand, it also poses many challenges for the siblings, especially in adolescence. Thus, the aim of the proposed project is to investigate the specificity of the growing up process in young people with disabled siblings. A total of 160 dyads (320 participants) - an adolescent and one of his/her parents - will take part in this cross-sectional case-control study. Participants will be assigned to four groups, having a sibling with: 1) intellectual disability, 2) motor disability, 3) chronic somatic disease, and 4) the control group - having a sibling without any disability. Both the healthy adolescent and one of the parents will fill out a set of questionnaires regarding the study variables: Questionnaire of Relationships with Siblings, Parental Attitude Scale-2, KidScreen-27, Parentification Questionnaire for Youth, Teenage Rebellion Questionnaire, Child Behavior Checklist 6-18. The primary outcomes include investigating the healthy adolescent functioning in three environments: family, peers and school. The proposed research model focuses both on the difficulties associated with having a disabled sibling (e.g. possible occurrence of disorders) and resources (e.g. higher quality of relationships in the family, especially in the sibling subsystem). The proposed comprehensive approach to the issue of disability in the family from the perspective of a healthy child will allow for a better understanding of the mechanisms underlying the process of growing up with disabled siblings.

장애를 가진 형제를 둔 비장애학생의 회복탄력성과 스트레스 및 스트레스 대처방식과의 관계

Objectives This study aimed to explore the resilience, stress, and stress coping strategies of non-disabled students who have siblings with disabilities. The study also investigated the differences based on gender and school grade, as well as the correlations between these variables.
 Methods A survey was conducted with 89 non-disabled students who have siblings with disabilities from 8 private developmental rehabilitation centers in Gwangju, Jeonnam, and Jeonbuk. Descriptive statistics, one-way ANOVA, and correlation analysis were used to analyze the data.
 Results First, there was no significant difference in resilience and stress coping strategies for non-disabled students with siblings with disabilities; however, stress levels were higher among female students compared to male students. Second, as school grade increased, resilience also increased, while stress coping strategies decreased. Third, resilience showed a negative correlation with stress and a positive correlation with stress coping strategies.
 Conclusions Based on these findings, it is suggested that support programs are needed to enhance the resilience and stress coping strategies of non-disabled students who have siblings with disabilities, and to improve the quality of life for both the disabled siblings and the non-disabled students.

The Effects of Physical Contact-based Group Play Therapy on Ego-resilience and Peer competence in non-disabled siblings with disabled siblings

The Effects of Physical Contact-based Group Play Therapy on Ego-resilience and Peer competence in non-disabled siblings with disabled siblings

Bilişsel veya bedensel özel gereksinimi olan çocukların kardeşlerinin katılım düzeylerinin incelenmesi: anne perspektifi

Amaç: Özel gereksinimli bir çocuğa sahip olmak aileler için birçok sorunu beraberinde getirmekte aile yapısında, işleyişinde ve aile üyelerinin rollerinde değişiklikler yaratmaktadır. Çalışmanın amacı, bilişsel veya bedensel özel gereksinimli çocukların tipik gelişim gösteren kardeşlerinin katılım düzeyleri ile, katılım düzeylerini etkileyen bariyer ve destekleyicileri anne perspektifinden incelemekti.
 Yöntem: Çalışma bilişsel veya bedensel özel gereksinime sahip olan 8-17 yaş aralığındaki çocukların tipik gelişim gösteren, herhangi bir kronik rahatsızlığı olmayan kardeşleri ve anneleri ile gerçekleştirildi. Çalışma, bilişsel özel gereksinimli kardeşi olan grupta 30 (yaş ortalaması=12,5±2,25 yıl; 10 kadın, 20 erkek), bedensel özel gereksinimli kardeşi olan grupta 30 (yaş ortalaması=11,87±2,60 yıl; 16 kadın, 14 erkek) olmak üzere toplam 60 birey ile tamamlandı. Çalışmada sosyo-demografik bilgi formu ve katılımı değerlendirmek için Çocuklar ve Gençler İçin Katılım ve Çevre Ölçümü (PEM-CY) anketi kullanıldı.
 Bulgular: Bedensel özel gereksinimli kardeşi olan çocukların okul ve toplumsal ortamlardaki etkinliklerdeki katılım düzeyleri diğer grup ile karşılaştırıldığında daha fazla idi. Bu grupta yer alan bireyler toplumsal ortamda daha fazla çevresel desteğe sahip idi (p

A qualitative study investigating the experiences of young adults caring for a sibling with disability within immigrant families in the UK: “Challenges are just the constant”

ABSTRACT Background Despite a growing body of literature investigating the impact of disabilities on family relationships, the experiences of ethnic minorities remain underexplored. Method Semi-structured online interviews were conducted with eight young people (aged 18-28 years) with disabled sibling(s) within an immigrant family to understand how this affects their wellbeing and relationships, identify sources of support and strain, and explore the significance of balancing different cultural expectations. We used reflexive thematic analysis to analyse the transcribed data. Results Analysis identified three themes: constant challenges, negative consequences on self and relationships, and coping strategies to overcome difficulties. Despite maintaining positive relationships with their siblings, challenges took a serious toll on young people’s psychological wellbeing and relationships. Participants used various coping strategies but desired culturally appropriate extra-familial support. Conclusions This study has highlighted the urgent requirement for policy makers to investigate how to better support young carers from diverse backgrounds.

Influences of sibling disability and childhood caregiving experiences on interest in a disability-specific helping profession

Individuals with a disabled sibling (WDS) are more likely than individuals without a disabled sibling (WODS) to select a helping profession (Martins, 2007). However, research focusing on specific types of helping professions, rather than helping professions as a whole, that individuals WDS may choose and research examining experiences that influence individuals’ WDS choice of a helping profession remains limited. In the present study we examine the association between sibling disability status (e.g., individuals WDS versus individuals WODS) and emerging adults’ interest in a career working with youth with disabilities. Additionally, we examine childhood emotional caregiving (e.g., caregiving experiences aimed at fulfilling the emotional needs of the family) and childhood instrumental caregiving (e.g., caregiving experiences aimed at fulfilling the physical needs of the family) as potential moderators of this association. The present study included 858 undergraduate students enrolled in courses in human development and education at 11 institutions. Data were collected using online surveys. Results revealed that when individuals WDS experienced high levels of emotional caregiving roles in their families they were more likely to express interest in a career working with youth with disabilities than individuals WODS. Additionally, instrumental caregiving demonstrated different associations with interest in this career for individuals WDS versus individuals WODS at low levels of emotional caregiving. Our findings suggest that emotional caregiving roles experienced by individuals WDS are influential in emerging adults’ decisions to pursue a career working with youth with disabilities.

Impact of Assistive Technologies to Inclusive Education and Independent Life of Down Syndrome Persons: A Systematic Literature Review and Research Agenda

Since the beginning of the 21st century, the lifespan of people born with Down syndrome (DS) has increased. They now outlive their parents and rely on their relatives who usually sacrifice their own families to care for their disabled siblings. To reduce the pressure on families and the wider community, it is crucial to prepare DS people for independent life from early childhood. Emerging technologies can significantly support the process of acquiring the skills that are necessary for solving real-life problems at home and work. To assess their impact and estimate how much they are implemented in inclusive education, a review of 564 papers published after 2015 was done using the PRISMA review model. After gradual exclusion, 24 papers were used for the final review. Thematic analysis resulted in four themes with one common concept: variety. The results of examining the four research questions defined in the paper’s background confirm that the synergy of emerging assistive technologies and inclusive education has the potential of becoming a very effective strategy for creating an independent life for DS individuals. Many questions remain open, mainly related to a DS persons’ specific needs and capabilities. The acceptance of the proposed synergy will depend on them.

Social support, school achievement and social competencies in adolescents with disabled siblings

Social support, school achievement and social competencies in adolescents with disabled siblings

Care in the context of disability: a tool for (in)dependence and (dis)empowerment

The aim of this study was to explore care in the context of disability as a tool to promote independence and empower disabled people. The study was based on the case of two women, Anna and Lena, who switched the roles of being either the cared-for or the one-caring. Data was collected with semi-structured interviews with the above mother and daughter. The participants discussed their experiences and feelings regarding the process of switching roles and taking responsibilities, the barriers to independence and autonomy, the implications of disability on the personal and family level, the process of adaptation to disability and their expectations for the future. It was found that switching roles had a twofold and oxymoron effect: on the one hand, a negative impact on the former one-caring’s self-esteem and level of dependence was observed and, on the other, a positive impact on the disabled daughter’s autonomy and independence occurred. Points of interest Providing care is a moral act, which involves the one-caring and the cared-for. Caring may generate power relations and mutual dependence. In the context of impairment, sometimes need for care may be unavoidable. For this reason, dependence of some disabled people on non-disabled others may be observed. In Cyprus, caring for disabled siblings is considered as a moral duty and a virtue of females. For this reason, some women may devote themselves to caring for disabled siblings to feel valued and worthy. Switching the roles between the one-caring and the cared-for may be beneficial for the latter, because becoming the one-caring may result to feeling independent, self-confident, and free from previous control. In contrast, becoming the cared-for was related to increased stress and difficulties to adapt to impairment, since the new role was interpreted as acceptance of being depended on others and thereby unwanted loss of power.

A Study on the Life Experiences of Adolescents Who Grew up with Younger Siblings with Developmental Disabilities: Focusing on Phenomenological Analysis Methods.

This study aims to explore specific life experiences and what it means to “live as a sibling of a disabled person”, by focusing on the brothers and sisters of persons with disabilities; this is a cohort that has been relatively marginalized in the field of welfare for the disabled. To this end, the author conducted 1:1 in-depth interviews with four adolescents who grew up with younger siblings who have developmental disabilities, and analyzed the meaning underlying their life experiences through phenomenological research methods. As a result, a total of five core themes of those life experiences were identified: (1) the birth of a disabled younger sibling, wherein their trials began; (2) surviving differentiation within the family; (3) ambivalence toward parents; (4) adolescence, with resurfaced psychological conflicts and relieving emotions; and (5) a future to be planned around a life of coexisting with disabled siblings. This study aims to provide basic data for social welfare intervention through an illuminating and deeper understanding of the lives of siblings of the developmentally disabled who require a high level of care.

A Field Study on the Relationship Between Children with Disabled Sibling and Their Mothers

A Field Study on the Relationship Between Children with Disabled Sibling and Their Mothers

PSYCHOSOCIAL DEVELOPMENT OF A CHILD DURING SIBLING INTERACTIONS

The article studies the relationships between a disabled sibling and his/her healthy brother or sister, and the influence of this interaction on their psychosocial adaptation and the formation of their personality traits. The article states that siblings’ interactions are studied at the individual and system levels. At the individual level, they are studied by theorists of psychoanalysis, behaviourism, humanistic and cognitive psychology. The systemic approach has shown its productivity through the works made by representatives of transgenerational (Bowen’s), structural, strategic and experience-based directions of systemic family psychotherapy. We noted that researchers mainly studied how a sibling’s position affects their personality development but forgot about the relationships between siblings themselves. Based on the analysed theoretical material, we found that the studied relationships of children with their disabled siblings do not describe unambiguously their influence on the formation of personality traits and psychosocial adaptation of healthy siblings. The seriousness of developmental disabilities, different parental attitudes towards children, and a family psychological climate are the factors affecting the most strongly the emotional aspect of sibling interactions. The article notes that the factors reducing psychophysical traumatisation are: the parental marriage stability, high spiritual values of parents, open discussion of feelings among family members, the absence of overburdening a healthy child with care for his/her disabled sibling, understanding of children’s needs and the ability to effectively interact with them. We determined that accumulation by a child of his/her own experience of interacting with his/her sick sibling and knowledge about his/her own and sibling’s abilities and their limits is an important product of sibling interactions. The ability of children having siblings with psychophysical disabilities to respect the physical and psychological space of another is lower in comparison with children of the same age. It is more difficult for them to hold balance between personal autonomy and dependence. The respondents having sibling with psychophysical disabilities are characterized by an excessive manifestation of emotional alienation and value-orientation separation, as well as an inherent excessive manifestation of dominance and control. The self-esteem of children having siblings with psychophysical disabilities is lower in comparison with children of the same age, namely, the indicators of “self-esteem of character” and “self-esteem of appearance” are lower. We conclude that siblings of disabled children are emotionally more sensitive, they have higher self-control. They better understand social norms and have a higher level of self-regulation, but they are more anxious and more often feel guilty about their sick siblings. &nbsp

An insight into the lives of young siblings of disabled children in Malta

This qualitative study examines the experiences of seven young children, aged eight to twelve, siblings of disabled children living in Malta. It aims at giving a voice to young siblings of disabled children and at identifying the need for services for these siblings. Participants in this study shared their experiences during individual interviews, and during a focus group discussion. The data were analysed in the light of the ‘new sociology of childhood’ and the ‘social model of disability’ using Thematic Analysis. Findings from this study show that siblings of disabled children share a unique relationship with their disabled siblings. Both positive and negative aspects of these experiences and their effect on the siblings emerged from this study. Different feelings towards their disabled siblings were shared. The siblings articulated their unique personal needs Points of interest This article recounts the personal experiences of young siblings of disabled children based on a study with seven Maltese children who have a disabled brother or sister. Siblings shared their life experiences in relation to three main aspects: their life as children, their relationships with their disabled siblings, and their relationships with their family and friends. Children mentioned that they would like to obtain information about their sibling’s impairment so as to understand them better. Siblings need to feel better prioritised when it comes to parental attention and support from family members. Siblings may also benefit from services of organised peer support groups

장애형제가 있는 비장애자녀가 지각하는 부모양육태도와 주관적안녕감 간의 관계에서 정서표현성과 또래관계의 매개효과

The purpose of this study was to examine the mediating effects of emotional expressiveness and peer relationship between parents' rearing attitude and subjective well-being perceived by non-disabled children with disabled sibling. The study subjects were 135 non-disabled children with disabled sibling living in Seoul, Gyeonggi, and Incheon. Data analysis was performed with correlation analysis using SPSS 22.0, path analysis using SPSS Macro, and verification of mediating effect using bootstrapping. The result of the analysis showed that, first, affectionate rearing attitudes of the mother and father revealed a significant positive correlation with emotional expressiveness, peer relationship, and subjective well-being, but the autonomous rearing attitude of the mother and father showed no significant correlation with emotional expression. Second, in the relationship between the mother's and father's affectionate parenting attitude and subjective well-being, emotional expressiveness was mediated through peer relationships. In the relationship between mother's and father's autonomous rearing attitude and subjective well-being, emotional expressiveness had no mediating effect; only peer relationships were found to have mediating effects. Finally, the implications and limitations of this study are discussed.

Siblings, Disability, Genre in Jennifer Egan's Manhattan Beach

Jennifer Egan is known for her formal and thematic virtuosity, a constant reinvention that makes each of her novels feel fresh and surprising. “If I've read it or done it before then I'm not interested,” she claims, describing an “aesthetic … guided by curiosity and desire” (Julavitz). But this isn't the whole story; an exacting reader will find familiar threads running through Egan's fiction. Among the most consistent is an interest in siblings (or cousins, in The Keep): how their relationships evolve over time, as they develop horizontal intimacies apart from the world of parents, and how they negotiate various forms of inequality—for instance, how a more typical sibling contends with a beloved other who is ill or disabled. These themes carry over into Egan's most recent novel, Manhattan Beach. Although many reviewers described it as an abrupt departure (Franklin; O'Rourke; Charles), the novel is consistent with Egan's previous work in featuring a disabled sibling and in being concerned with how genre—whether mystery, romance, PowerPoint presentation, or text message—shapes family dynamics. But where earlier projects are marked by unexpected generic combinations, Manhattan Beach hews closely to the contours of two interrelated forms: the historical novel and literary sentimentalism. At the heart of its thick portrait of a particular time and place is a sibling relationship that becomes an occasion for exploring the possibilities and limitations of genre.

Predictors of Relationship Outcome between Disabled and Non-Disabled Siblings

In recent years, there has been increasing research on individuals with a disabled sibling looking at the impact of the relationship on the adjustment and behaviour of the non-disabled sibling and predictors of sibling relationships such as behaviour disabled sibling. Although research to date has focused on individual factors, there is a need for research on the relative contributions of multiple factors. The purpose of this study is to understand the sibling relationship outcome between a disabled and non-disabled sibling as predicted by the stressors caused by the disabled sibling, the non-disabled sibling’s relationship perception and available coping and resources. This study will use the ABCX model (McCubbin & Patterson, 1983) as a framework to study predictors of relationship outcome between disabled and non-disabled siblings. Predictor variables will include: stress, aA factor, (demographic information and behaviour of sibling with a disability), resources, bB factor (knowledge about disability and resource use), perceptions, cC factor (self-efficacy and comfort with disabled sibling) and outcome, xX factor (relationship quality). I hypothesize that when the non-disabled sibling is more comfortable and knowledgeable about the disability and has a higher level of self-efficacy and available resources, the relationship will be perceived more positively, improving relationship quality and leading to a positive relationship outcome. Participants will consist of approximately 100 individuals aged 16 – 26 who have a sibling with a developmental disability. Data will be collected through an online survey. The results of this study are valuable, as understanding what the predictors are that lead to a positive versus negative relationship outcome is the first step in helping to intervene in the relationship and input the right implementations to ensure a positive outcome

Non-disabled siblings’ perceptions of their disabled siblings shown in fairy tales

Non-disabled siblings’ perceptions of their disabled siblings shown in fairy tales

Mentoring for Mental Health within a University: A psychodynamic approach

This paper explores the role of mentoring in a British University for students with mental health issues and is written from the perspective of the Mentor who is also a Psychodynamic Psychotherapist. Psychodynamic theory is applied to two case studies in order to understand the conscious and unconscious factors when considering these students’ particular learning difficulties and motivation for entering a learning environment. In the first case study, it is suggested that the student hopes to find his lost father within the containing bricks of the institution. When confronted with frustration and disappointment, he mobilises schizoid defences, precipitating a psychotic episode. The second case study formulates the student’s chronic procrastination, which verges on academic sabotage, as a defence against the unbearable guilt concerning his abilities and achievements in contrast with his unsuccessful and disabled siblings. The challenge of helping these students is explored, including the approaches taken by the Mentor, given her remit and the particular issues presented by the students.

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.

Sibling Health, Schooling and Longer-Term Developmental Outcomes

We explore the extent to which starting primary school earlier by up to one year can help shield children from the detrimental, long-term developmental consequences of having an ill or disabled sibling. Using data from the Longitudinal Study of Australian Children, we employ a Regression Discontinuity Design based on birthday eligibility cut-offs. We find that Australian children who have a sibling in poor health persistently lag behind other children in their cognitive development - but only for the children who start school later. In contrast, for the children who commence school earlier, we do not find any cognitive developmental gaps. The results are strongest when the ill-health in the sibling is of a temporary rather than longer-term nature. We hypothesise that an early school start achieves this by lessening the importance of resource-access inequalities within the family home. However, we find mixed impacts on the gaps in non-cognitive development.