The impact on the self of growing up with a sibling with autism spectrum : an exploratory study

This study explores the structure of the self in people who grew up with a sibling with an autism spectrum disorder (ASD). This research utilized a quantitative survey to assess their representations of self. D.W. Winnicott\u27s theory of True and Self guided this investigation. The study utilized self-report to explore participants\u27 identification with True and Self characteristics. Questions were phrased in past and present tense as a means of assessing how participants\u27 representations of self have changed over time. At the end of the survey, participants were asked two open-ended questions which generated qualitative data and resulted in a mixed-method study. The sample (N=33) was gathered from an online group called SibNet, defined as the internet\u27s first listserv for adult brothers and sisters of people with special health, developmental, and emotional needs. Inclusion criteria for research participants were that they must be 18 years of age or older and have at least one brother or sister with an autism spectrum disorder (ASD). Findings showed higher scores on Self measures than True Self measures. The change in responses from past to present in both the True and Self measures was statistically significant—suggesting that siblings\u27 representations of self have an evolving quality about them. Furthermore, the change was larger for True Self than Self. Participants\u27 narratives contained strong associations with Self characteristics, as well as themes such as gaining an improved ability to relate to others, and choosing a career in a helping profession

The Sibling Experience: Grief and Coping with Sibling Incarceration

Incarceration is an issue that affects thousands of families on a yearly basis. To date, the majority of studies examining this loss have observed the impact of incarceration on children and parents; primarily how imprisonment affects child attachment to mothers and fathers (Brown et. al., 2000). Most often overlooked within these studies have been the siblings of brothers and sisters who have been adjudicated (Brown et al., 2000). Specifically of interest to this study is how professionals understand the impact of sibling incarceration on grief and coping styles of non-offending siblings. Furthermore, how does this knowledge impact working relationships between professionals and these family members? Using a qualitative design, this study examined the impact of sibling incarceration from the professional perspective. Six professionals working through some capacity with the criminal justice were interviewed and asked to share their perceptions about the impact incarceration has on non-offending siblings. A total of four themes were identified, relating to the continual study of the impact of parent versus sibling relationships, sibling involvement related to program lengths, the various feelings and roles non-offending siblings take on, and the types of communication non-offending siblings use when incorporated into the treatment or reconciliation process. The findings of this study indicated a continued need for future research to explore the impact of sibling imprisonment on both offending and non-offending siblings. Implications for future social work practice were also discussed

Working in partnership through early support: distance learning text: family structures (book chapter)

This is a chapter from the distance learning text for the 'Working in Partnership through Early Support' accredited training programme. "The Early Support family pack and accompanying Early Support professional guidance (Department for Education and Skills (DfES), 2004a) are set in a clear framework of service delivery and family interaction. With Together from the Start (DfES/Department of Health (DoH), 2003), they advocate “flexible, family-centred support that is competent, compassionate, comprehensive, continuous, well-coordinated and culturally sensitive”. However, without first investigating how individual families work together, professionals cannot begin to deliver a service which can respond to the changing needs of those families. This chapter seeks to involve readers in considering family characteristics and their own ethos of responsive and inclusive practice." - Page 2

The Sisters\u27 Experience of Having a Sibling with an Autism Spectrum Disorder

This dissertation consists of two articles. This first article is a literature review identifying studies of autism spectrum disorders and sibling relationships published in the past 10 years. This search strategy identified 16 articles for inclusion in this review and conveyed the following main outcomes: a) parental factors influence sibling relationship and typically developing child, b) behavioral interactions/problems affect the quality of the sibling relationship, c) genetic factors have varying impact on diagnosis, and d) effects/outcomes for typically developing sibling are both positive and negative. This review supported the call for a better understanding of the family factors on the sibling relationship, as well as highlighted the absence of qualitative studies that include the voices of children and their siblings regarding their relationship experience. The second article reports on a qualitative study exploring the experiences of children who have a sibling with an autism spectrum disorder (ASD) using phenomenological methodology. The aim was to develop a better understanding of how the unique experience of having a sibling with ASD may alter, impact and enrich the lives of siblings. Data were collected through participant interviews, photographs, and drawings. The data analysis revealed the following themes: a) understanding of ASD, b) challenges and benefits of having a sibling with an ASD, c) relationships and interactions with others, d) attunement and unique connection, and e) advocacy and acceptance. The findings have implications for therapeutic practice, education, and research involving families with children when one child is diagnosed with an ASD. The electronic version of this dissertation is available in the open-access OhioLink ETD Center, www.ohiolink.edu/et

Siblings – Practical and Sensitive Relations

This book is about siblingship as a social and cultural phenomenon in contemporary Denmark. Being a sibling, having siblings and getting siblings are conditions in the lives of most children; actually 90 per cent of all children are registered as having siblings. Despite the prevalence, we have little knowledge of how children perceive being siblings, who they consider as siblings, and what they do or do not do together. Neither do we know much about how this phenomenon is culturally understood.Do children consider all the children they live with as siblings, even if they do not have parents in common?  Can you be more or less real siblings? Can you stop being siblings? Obviously, there are many ways of being a sibling, and sibling relations can change considerably as children grow up. New children may appear – in the shape of newborn babies or children from previous marriages – while other children may be separated by way of divorce or moving out. Sibling configurations vary, as do the experiences of having and getting siblings.The book is based on the research project “(Ex)Changeable Siblingships” conducted at the Danish School of Education, Aarhus University from 2011-2014 and financed by The Egmont Foundation. The project was based on empirical material collected throughout 2011 and 2012. It involved close to 100 children and their parents as well as selected professionals who work with children

Stillbirth : a loss for the whole family

Background: Stillbirth loss is a profound experience affecting around 450 families every year in Sweden. Method: Two questionnaires, one postal with three measurements over a two-year period with 55 parents (I), and a web questionnaire answered by 411 parents (III), five focus groups with a total of 25 parents (II), and individual face-to-face interviews with 13 bereaved adolescent siblings of a stillborn baby (IV) constitute the data collection. The qualitative data were analysed with a content analysis, descriptive statistics were used for the quantitative data. The overall aim of the thesis was to study the loss of a stillborn baby from the perspective of parents and siblings. Results: The parents strived to create an environment in which siblings are confidently allowed and invited to participate in processes surrounding the stillbirth. They promoted an understanding of the new and unexpected family situation. Some parents expressed difficulty in focusing on the needs of siblings during the acute grief after the loss. Most of the siblings met their stillborn sister or brother. The meeting was described as natural, enriching and self-evident and as an important component to create understanding; it attributed identity and personality to the stillborn baby. When the siblings created memories the baby was acknowledged and took on a tangible form. Furthermore, parents and siblings expressed feelings of broken expectations of becoming a larger family. Additionally, being a sister or brother of a stillborn baby brought up thoughts about the sibling relationship, and whether they could still identify themselves as big sisters or brothers. Many parents reported the loss had strengthened their relationship. Some parents and adolescent siblings expressed that they were grieving alone as well as together with other members of the family. They developed an inner strength and a trust in each other. For others, expectations of their own and other family members´ way of grieving could pose a threat to their close relationship; a lack of understanding for each other´s way to express grief or their needs could create an emotional distance. Some adolescents expressed feelings of being part of a common grief in the family, but simultaneously being outside. The loss of their baby sibling implied a temporary loss of their parents´ parenthood.clusions: This thesis gives new information on the thoughts and feelings in a family after they have experienced a stillbirth. Clinically the information can be used to help health-care professionals communicate with parents and siblings after this event. For parents seeking advice, it may help to know that the parents in this study, who actively involved the stillborn baby’s siblings in the meeting and farewell afterwards, by and large reported encouraging experiences only

The Impact of Childhood Chronic Illness on the Family: Psychosocial Adjustment of Siblings

Chronic illness is a multifaceted concept that significantly impacts millions of families and siblings each year. The biopsychosocial model shows that illness involves more than the biological and medical processes; it includes psychosocial implications on families as well. The purpose of this qualitative and quantitative study was to examine the effects of childhood chronic illness on families and siblings by exploring the positive and negative consequences from parents’ perspectives, the extent to which families experienced illness-related stress and strain, as well as further examining the specific ways in which families adapt their lives. This study specifically sought to explore the relationship between the impact on siblings and the impact on the family. By surveying parents associated with supportive non-profit organizations, this research sought to answer those questions. This study found that illness severity and the level of stress were statistically significant in their impact on the family. This study also found a positive correlation that showed illness’ impact on the family invariably impacts the siblings. The qualitative portion of this study illustrates how parents convey thoughtful, enlightening, and unique perspectives from their day-to-day lives and experiences. Social workers, Child Life Specialists, and other health care professionals need to be aware of the psychosocial implications of illness and its impact on families so that they can properly assess and provide intervention when necessary. Professionals should also be aware of and utilize a family systems perspective when working with chronically ill children and their families

“Alone in our Grief:” Exploring How Surviving Siblings Make Meaning After the Death of a Brother or Sister

Sibling loss is an important, yet often overlooked topic in the literature on grief. The purpose of this study was: (a) to better understand the phenomenon of sibling grief through personal narratives, (b) to explore common meanings made by bereaved siblings, and (c) to investigate strategies used by bereaved siblings to make meaning out of their siblings’ deaths. A narrative research design was used to identify core themes with regard to both meaning making outcomes and processes. Seven young adults who lost a sibling in adolescence each completed two in-depth interviews averaging almost 90 minutes each. Sibling profiles were created for each participant in order to give voice to the often silenced stories of bereaved siblings and to provide insight into how contextual and experiential factors impact individual stories of loss. Narrative analysis, including both thematic and structural analysis, was used to explore how surviving siblings structured their experiences of loss through stories. Thematic analysis resulted in three major categories of meanings made by bereaved siblings: (a) identity change, with the themes of changed view of self, changed view of the world, and changed view of others; (b) sense making, with the themes of spiritual or religious understandings, uniqueness of sibling relationship, continued connection to the deceased, and embracing the loss; and (c) benefit finding, with the theme of seeing positives that have come as a result of the loss. Structural analysis resulted in nine themes related to the strategies bereaved siblings use to make meaning out of the loss which included: (a) assimilation and accommodation, (b) the use of metaphor, (c) storytelling, (d) meaning making through action or the pursuit of life purpose, (e) affirmation or restoring a sense of self, (f) comparisons of loss, (g) questioning, (h) negotiation through relationships, and (i) seeing ‘signs’ as messages from deceased siblings. This study lends support to meaning making theories of loss while also adding unique components specific to sibling grief by highlighting important meaning making processes, which are often overlooked in grief research. A preliminary model of sibling grief is proposed. Guidelines for counselors working with grieving siblings are presented