The focus of this research is the stress placed on a child when a sibling in the family has a chronic illness or disability, and analysis of what factors may buffer this stress and be associated with well child resilience in the face of family illness. Several major studies from other countries (Cadman, Boyle, & Offord, 1988; Houtzager, Grootenhuis, Caron & Last, 2005; Laufersweiler-Plass, Rudnik-Schoneborn, Zerres, Backes, Lehmkuhl & von Gontart, 2003; Sharpe & Rossiter, 2002; Williams, Williams, Graff, Hanson et al., 2002) suggest that there may be deleterious outcomes for well children in such families, for example higher rates of anxiety, depression, aggressive behaviour and rule breaking behaviour. However there is a lack of clarity about the processes which lead to these negative outcomes. The current study had two major research aims. The first was to describe social, family and personal characteristics of a group of well children with siblings who have a chronic illness or disability. The second aim was to examine relationships between adjustment problems in these well children and factors relating to the family (income, number of children in family, respite availability and utilisation), parents (stress, parenting style, maternal education, access to support) and children (ill child behaviour, amount of care required, well child age, well and ill child participation in social activities). Adjustment in well-children (n=102) was assessed using child self report, child projective and parent rating measures. Parents rated well children with ill siblings as significantly higher in externalising and internalising behaviour than age and gender matched population norms. Children did not rate their behaviour problems higher than norms but did indicate quite high rates of emotional problems on a projective (drawing) test. Parent-rated behaviours of well children were associated with parental, family and ill child variables, including (high) parental stress (daily hassles), (low) family income and (high) ill child internalising and externalising behaviours. Relationships between the well child's perception of having a sibling with a chronic illness or disability and various parent, child and family variables were also explored. Well children who listed more negative (than positive) attributes about having a sibling with a chronic illness were more aggressive and rule breaking in their behaviour. Well children with emotional problems, as assessed by the child family drawings, did not differ significantly from children without emotional problems in any of the parent, child or family variables however both the emotional problems index and the use of scribble drawings were associated with several measures of well child maladjustment. The results were discussed in terms of family systems and resilience theory. Implications for well children and their families including practical applications for existing interventions which target well children, ill siblings and parents were discussed and ideas for future directions for interventions to improve outcomes for well siblings were presented.

La thèse étudie le processus de parentification et les facteurs associés d'activation/inhibition sur plusieurs générations. D'autre part, elle distingue la parentification d'autres processus auxquels elle est régulièrement amalgamée. Ainsi, si la parentification, la parentalisation, l'adultisation, la délégation et la responsabilisation ont des points communs, ils n'en restent pas moins des processus distincts. La thèse cerne également la dynamique fraternelle à l'oeuvre dans le processus. L'organisation fraternelle lors d'une parentification n'ayant fait l'objet d'aucun écrit ou presque, la thèse se penche sur la thématique et fait des propositions.

This qualitative research project is a narrative inquiry into the lives of four bereaved siblings; one is myself. The purpose of the project was to explore our mutual experiences of loss, look for patterns, and create a forum for continuing our stories in a new way. Identified as a disenfranchised loss (Wray, 2003) adult siblings are often seen as the least impacted family member when a sibling dies. After such a death, the concern is first directed toward the grieving spouse and children and then the deceased’s parents. Adult siblings are often expected to be a source of strength and support for others. Through in-depth interviews and story telling, three participants shared their reflections of, first, living with and, then, living without beloved siblings. Their stories of loss and love are captured both with words and visually through photographs. My stories are woven throughout the text as I reflect upon my grief journey and ongoing search for meaning. Findings of this research offer a glimpse into the profound depth of this loss and some of the unique challenges faced by bereaved adult siblings. All participants experienced strained dynamics within families of origin as members grieved the loss differently. Elderly parents, in particular, were hesitant to speak of their deceased child, setting a tone of silence within the family. To help “protect” parents from further grief, participants gradually stopped talking about deceased siblings in their presence. Relationships with surviving siblings were also strained as roles were reformed. For the three women participants, passing years did not lessen the emptiness of the loss. The pain was rekindled with each passing family milestone. All of us were changed by this experience. Sharing stories with an interested listener created another avenue for meaning making and a new way to honour and memorialize our lost siblings. Each of us moved to new understandings about ourselves and our relationships with our deceased siblings, naming the experience as transformative on many levels. Hopefully this study will serve as support for other grieving adult siblings and contribute to furthering research in grief and bereavement.

This qualitative research project is a narrative inquiry into the lives of four bereaved siblings; one is myself. The purpose of the project was to explore our mutual experiences of loss, look for patterns, and create a forum for continuing our stories in a new way. Identified as a disenfranchised loss (Wray, 2003) adult siblings are often seen as the least impacted family member when a sibling dies. After such a death, the concern is first directed toward the grieving spouse and children and then the deceased’s parents. Adult siblings are often expected to be a source of strength and support for others. Through in-depth interviews and story telling, three participants shared their reflections of, first, living with and, then, living without beloved siblings. Their stories of loss and love are captured both with words and visually through photographs. My stories are woven throughout the text as I reflect upon my grief journey and ongoing search for meaning. Findings of this research offer a glimpse into the profound depth of this loss and some of the unique challenges faced by bereaved adult siblings. All participants experienced strained dynamics within families of origin as members grieved the loss differently. Elderly parents, in particular, were hesitant to speak of their deceased child, setting a tone of silence within the family. To help “protect” parents from further grief, participants gradually stopped talking about deceased siblings in their presence. Relationships with surviving siblings were also strained as roles were reformed. For the three women participants, passing years did not lessen the emptiness of the loss. The pain was rekindled with each passing family milestone. All of us were changed by this experience. Sharing stories with an interested listener created another avenue for meaning making and a new way to honour and memorialize our lost siblings. Each of us moved to new understandings about ourselves and our relationships with our deceased siblings, naming the experience as transformative on many levels. Hopefully this study will serve as support for other grieving adult siblings and contribute to furthering research in grief and bereavement.

Background: Every year, in Sweden, 250 children and adolescents below 15 years of age are diagnosed with cancer. Over 75% of those diagnosed are cured. Cancer affects not only the child but the whole family. Siblings of the affected child can easily suffer from a lack of attention. Aim: This study aimed to illuminate siblings' experiences of living in a family with a child affected by cancer. Method: A literature-based study based on nine qualitative studies. Results: The result showed that it was important for siblings to have someone close and not be alone, they needed to feel a community. Not to know and not to understand what has happened made them to feel grief, fear, stress and jealousy. Many siblings felt an insecurity because of a feeling of being forgotten, neglected and a feeling of loneliness due to the changes in everyday life. Conclusion: Parents to a child with cancer have often prioritized the sick child and the needs of the siblings, are left aside. Because the siblings often get sidelined they feel an insecurity when their everyday living get different. If the siblings get a positive experience from this period of illness, this may lead to a positive experience in life which make it easier to process what was happened.

No description available.

Siblings of children with cancer are exposed to significant stress and experience challenges in many aspects of their lives throughout the pediatric cancer trajectory. As a result, siblings are at risk for acute and long-term psychosocial consequences and must be provided with appropriate supportive services during and after cancer treatment. At this time, there are no evidence-based standards to guide the supportive care of siblings of children with cancer. The purpose of this study was to explore and develop an understanding of the different ways in which siblings of children with cancer perceive their psychosocial needs are addressed from formal and informal sources. A qualitative interpretive descriptive methodology was used in the study design. Data were collected from a sample of ten siblings in Ontario whose siblings were diagnosed and treated for pediatric cancer within the past ten years. The data collection methods included semi-structured individual interviews, socio-demographic questionnaires, field notes, and the researcher’s reflexivity journal. A reflexive thematic and inductive approach was used for the analysis of the collected data. The study findings highlight that there are significant gaps in the psychosocial support provided to siblings of children with cancer. Four overarching issues were identified, including: (1) siblings’ isolation from the pediatric cancer experience, (2) limited parental awareness of siblings’ psychosocial needs, (3) needs for consistent academic and school support, and (4) needs for standardized psychosocial support from healthcare professionals and hospital systems. The study findings provide several implications for clinical practice, policy, education, and research for nurses and other healthcare professionals working in pediatric oncology settings. Recommendations include: (1) integration of psychosocial care for siblings into clinical practice, (2) development of evidence-based standards and guidelines for the psychosocial support of siblings, (3) ongoing education and training for healthcare professionals related to siblings’ psychosocial healthcare needs, and (4) additional research on standardized screening tools and interventions for siblings. / Thesis / Master of Science in Nursing (MSN)

Current evidence-based literature regarding the experiences of siblings of children with disabilities acknowledges that siblings have diverse experiences and that it is unclear to what extent siblings are negatively impacted. (Emerson & Giallo, 2014; Giallo, Roberts, Emerson, Wood, & Gavidia-Payne, 2014; Goudie, Havercamp, Jamieson, & Sahr, 2013; Neely-Barnes & Graff, 2011). Yet the literature also emphasizes that a substantial portion of siblings experience emotional and social difficulties and are in need of clinical services that better address their challenges. The aim of this doctoral project is to create an evidence-based and theoretically grounded program that supports siblings through the use of telehealth. Telehealth has previously been used with youth, mostly to address chronic conditions, and demonstrated comparable, and sometimes superior, outcomes when using telehealth as opposed to face-to-face treatment (Dougherty, Lipman, Hyams, & Montgomery, 2014; Gettings, Franco, & Santosh, 2015; Letourneau et al., 2012). The objectives of Sib Kinnect, the proposed program, are to use telehealth to increase knowledge about disability, promote development of meaningful interests, improve coping and problem solving skills, and provide an enjoyable experience in which siblings can connect and learn from each other. The eight-week manual-guided program is designed for siblings, ages 10-12, of children with developmental disabilities and will include fun, age-appropriate activities and discussions that address the desired outcomes in a format that is enjoyable and engaging. In order for this program to be implemented, this project will also discuss important operational components such as the evaluation plan, information dissemination, staffing, and funding

Siblings demonstrate variable psychosocial adjustment to childhood cancer, ranging from cancer-related post-traumatic stress symptoms (PTSS) to resilience. Theoretical frameworks suggest that PTSS are influenced by appraisals (e.g., fear of mortality) and coping. Siblings’ presence within clinical settings and participation in cancer treatment may allow them to appraise cancer-related experiences as less threatening and utilize engagement coping strategies, but the nature and effect of siblings’ involvement in cancer treatment remains unknown, especially in the context of COVID-19. This mixed-methods research (a) characterized siblings’ involvement in cancer treatment, (b) investigated how siblings’ involvement in cancer treatment, demographics, cancer characteristics, appraisals and coping relate to PTSS, and (c) characterized COVID-19’s impact on siblings. Thirty-eight participants (22 siblings, 16 parents) from 16 families of youth with cancer completed qualitative interviews and quantitative measures. Study 1 qualitatively illustrated treatment involvement. Within the hospital and clinic, siblings emotionally supported patients, observed treatment, and learned about cancer. At home, siblings continued to support patients, assumed helper roles with treatment, and adjusted to new cancer-induced norms (e.g., family diet, cleaning practices). Study 2 used a cross-sectional, convergent, mixed methods design to identify factors related to siblings’ PTSS. Quantitative analyses revealed that siblings’ PTSS were significantly related to siblings’ age, appraisals and coping strategies. Mixed methods analyses showed that siblings who qualitatively described more consistent involvement in treatment, including access to information and opportunities to express emotions, had lower quantitative PTSS scores. Study 3 qualitatively described siblings’ treatment involvement and experience of cancer in the context of COVID-19. Siblings worried about contracting and transmitting COVID-19 to patients, but also described that cancer-related experiences prepared them for pandemic-related precautions. Due to increased time at home, siblings encountered more cancer reminders and had fewer opportunities to “take a break” from cancer. Siblings’ exclusion from clinical settings led to reduced understanding of cancer and increased cancer-related stress. Together, findings suggest that treatment involvement offers opportunities for siblings to process cancer-related cues and use engagement coping techniques, which may facilitate positive adjustment to cancer. Findings have important clinical implications related to (re)establishing family-centered care practices that explicitly include siblings.

No description available.