Sibling Support Group Research Articles

"Why Are we Giving up on my Brother?"-The Unmet Needs of the Adolescent Facing End-of-Life Care in a Sibling.

Adolescence is a challenging time at baseline, and a sibling receiving end-of-life care can alter an adolescent's life irrevocably. It is imperative for the medical team to understand the unique needs and perspectives of such an adolescent sibling. This in turn facilitates the anticipation of an adolescent's grief response, and allows for parents to be appropriately guided. However, more can be done to evaluate the needs of adolescent siblings and improve their support. This can be through establishing a validated needs-based questionnaire, empowering families and the multidisciplinary team to engage siblings, and diverting resources toward culturally sensitive support groups for siblings with critical illness. A framework to involve key players in the adolescent's circle is presented.

Supporting Autistic Students and Their Siblings through Inclusive Music Groups

This article provides a brief review of research along with a recommended music program with the purpose of facilitating constructive and loving relationships between autistic individuals and their allistic siblings. We highlight research regarding the need for family-based interventions, as well as the benefits of music participation for both the individuals with autism and their allistic siblings. Finally, we recommend a world percussion program for the siblings to participate in together that coincides with an allistic sibling support group. Music educators can facilitate growth within these relationships because they have a unique perspective on the individuals involved.

The development of SIBS-ONLINE, a group-based video conference intervention for siblings of children with chronic disorders and their parents

ObjectiveDuring the last decade a knowledge-based group intervention called SIBS, aiming to prevent psychological difficulties in siblings of children with chronic disorders, has been developed and empirically evaluated. The results are promising, but SIBS has been difficult to implement in areas with low population density. To address the needs of low-density health regions a video conference-based version of SIBS, “SIBS-ONLINE”, was developed. MethodSIBS-ONLINE was developed in three phases: 1) Gaining experience by delivering five support groups for siblings during the Covid-19 pandemic over video conference; 2) Developing the SIBS-ONLINE intervention based on the experiences of Phase 1; 3) Pilot testing the SIBS-ONLINE intervention with four groups (14 families). ResultsThe end-product was SIBS-ONLINE, an intervention for siblings aged 10–16 years and their parents. SIBS-ONLINE consists of three separate sibling and parent groups and three joint sessions delivered over video conference. Intervention materials to enable delivery were developed, such as a manual comprising specification of communication techniques in video conference groups, technical advice, and a detailed description of sessions. ConclusionThe developmental process resulted in a feasible group-based video conference intervention for families of children with chronic health disorders. InnovationA unique group-based video conference intervention is described and general advice for developers and deliverers of future interventions provided.

Consensus on the items for early identification of unmet psychosocial needs of siblings of children with cancer and blood disease: A modified Delphi method.

To reach a consensus on question items for early identification of unmet psychosocial needs of school-aged siblings of children with cancer and blood disease. Modified Delphi method. Twenty-three studies were reviewed to extract question items, which were classified into seven categories. A total of 39 question items were selected for this study. The selected question items were carefully considered using the modified Delphi method. The participants were 28 medical staff from a childhood cancer hub hospital and 20 sibling support group staff members. The first round consisted of a questionnaire (n = 48); the second, a focus group interview (n = 8) and the third, another questionnaire (n = 8). The first and third rounds used a 5-point Likert scale. This survey was conducted from July to October 2021. A total of 38, 26, and 24 question items were included in the first, second, and third rounds respectively. A total of 24 question items were extracted using the modified Delphi method to identify siblings' unmet psychosocial needs: relationship with family members, 3; daily life issues, 4; stress, 6; emotions, 3; information, 3; relationships with medical staff, 1 and social and medical resources, 4. Seven categories and 24 question items were confirmed as items for identifying the unmet psychosocial needs of school-aged siblings of children with cancer and blood disease.

Exploring the experiences and responses of siblings living with a brother or sister with obsessive compulsive disorder.

The impact of having a child with diagnosed obsessive-compulsive disorder (OCD) can reportedly cause significant disruption to caregiver routines and negatively affect their mental health. Less is known about the impact to other first-degree relatives such as siblings due to limited research. It should not be assumed that findings in the caregiver literature can simply be applied to siblings. This study, therefore, aimed to explore the experiences and responses of cohabiting siblings of a brother or sister with an OCD diagnosis. Eight participant siblings were recruited from a UK specialist OCD NHS clinic and interviewed via telephone about their experiences co-habiting with a brother or sister with OCD. Interviews were transcribed and subjected to interpretative phenomenological analysis (IPA). Two superordinate themes of 'OCD as a dangerous dictator' and the 'unifying/polarising influence of OCD on relationships' were interpreted from the eight participant experiences. Siblings spoke to OCD creating a dictatorial environment characterised by sibling loss, helplessness and adjustment. This fragile domestic environment seemingly pushed non-anxious siblings to the periphery of the family or conversely centralised their position through parentification. Many of the sibling experiences of frustration, distress avoidance, helplessness and symptom accommodation are mirrored in the burgeoning caregiver literature. Longitudinal studies are required to track sibling experiences over the course of their siblings OCD journey and expand our knowledge in this area. Counselling services, sibling support groups and inclusion in family assessment, formulation and treatment are possible avenues of exploration for siblings of those with an OCD diagnosis.

41 Content Analysis of the Recommendations from Project Echo Ontario Autism

Abstract Background The rising prevalence of autism spectrum disorder (ASD) diagnoses has caused an increased number of community practitioners to care for this population. However, community practitioners report a lack of knowledge and confidence in treating these patients, resulting in unmet healthcare needs. The Extension of Community Healthcare Outcomes (ECHO) Autism model aims to address this through case-based and didactic learning to help guide community practitioners in providing comprehensive, best-practice care for ASD screening, diagnosis, and management of co-occurring conditions. Each ECHO session involves a case presentation followed by a list of recommendations generated by community participants and an interdisciplinary ‘hub’ team. While ECHO Autism has been shown to improve physicians' abilities to care for children with ASD in their practices, recommendations stemming from ECHO cases have yet to be characterized and may help guide future care. Objectives To quantify and characterize the common categories within ECHO Autism Ontario case recommendations. Design/Methods A content analysis of 422 recommendations from 61 ECHO cases was conducted to identify categories of recommendations and their frequencies. Three researchers independently coded recommendations from five ECHO cases, from which an original coding guide was developed. The researchers then independently coded the remaining cases and met regularly with the ECHO lead to modify and consolidate the codes and coding guide. From there, categories and sub-categories from the various codes were identified. Finally, the frequencies of each code and category were calculated. Results Fifty-seven codes were included in the final coding guide and grouped into eight broad categories. Categories included: 1) diagnosis; 2) concurrent mental and physical health conditions; 3) referrals to allied health providers and other specialists; 4) accessing community resources, such as parent and sibling support groups; 5) providing education and guidance to physicians, patients, and families; 6) management strategies such as nutrition, physical activity, and social skills; and 7) patient and family-centered care. A COVID-19 category was added, as many of the later recommendations were adapted to online service delivery. An analysis of the frequency of codes found that 1,384 total in-text codes were distributed amongst the various categories. The three highest frequencies of categories were providing general guidance and education (22%), accessing resources (16%), and referrals (15%). Conclusion This is the first time recommendations from ECHO Autism have been characterized and quantified. Our results, particularly the most common category of providing general guidance and education about ASD, show there is still important work to be done with educating clinicians and families about aspects of ASD. Furthermore, findings from this study should inform Pediatrics residency programs about real-world knowledge gaps in ASD care, and may help create more tailored ASD training programs and educational materials.

Hospital Support for Siblings of Children With Illness in Japan.

Recent years have seen increased attention to the needs and support of siblings of children with chronic illness, and reports of intervention studies on siblings are gradually increasing worldwide. In Japan, the basic policy approved by the Cabinet in 2021 of The Basic Law for Child and Maternal Health and Development stipulates promoting support for the siblings of children with chronic illness, medical care, and disabilities. Simultaneously, practical reports are emerging. However, reports on the actual state of sibling support at medical institutions in Japan are limited. This study aimed to describe the actual state of support for siblings of children with illness in Japanese medical institutions using a cross-sectional design. Responses were obtained from 207 of 484 registered training facilities for Board-Certified Pediatricians of the Japan Pediatric Society through anonymous questionnaires investigating the actual state of siblings' support. Descriptive statistics were calculated, and the state of siblings' support was described. Fifty-two participants (25.1%) answered that the entire ward, including two outpatient departments, provided siblings' support, while 37 (17.9%) answered some staff made an effort, and 117 (56.5%) did not. Support mentioned included conversing with siblings, actively speaking to siblings, calling siblings' names, and counseling care through the parents. Of the 45 cases (21.7%) where siblings were invited to events and gatherings, 10 (22.2%) were siblings-centered events. Some cases involved collaboration with local sibling support groups such as non-profit organizations. This study clarified the actual state of siblings' support, and further expansion of this support is required.

Quality of the sibling relationship when one sibling has autism spectrum disorder: A randomized controlled trial of a sibling support group.

The sibling relationship can be negatively impacted when one child has autism spectrum disorder. One way to improve the quality of that relationship is through typically developing sibling participation in a support group in which they learn about autism spectrum disorder and coping skills, develop a peer network, and discuss their feelings. Compared to participating in a similar group without a focus on autism spectrum disorder, siblings in the support group showed improvements in the quality of the sibling relationship. Findings suggest that sibling support groups can be a valuable resource to improve sibling relationship quality when one sibling has autism spectrum disorder.

“It’s really unexplainable, but everyone here got it:” Analysis of an ASD sibling support group for emerging adults

BackgroundWhile the basic and applied literature on people with autism continues to expand in helpful ways, including substantial research on their families, less research exists focused specifically on siblings, and little on older siblings during emerging adulthood. This study's intervention goal was to create a support group for emerging adults with siblings with autism and share their experiences, and then to determine whether they found the group meaningful and useful. The study's research goal was to gain a better understanding of the TDS’s perspectives on their own identity and development and their perceptions of their family’s functioning during this period. MethodSix university students gave informed consent for audio-taping group discussions by the first author, a participant researcher. The support group, titled-Sibling Allies, met 5 times in Fall 2017; qualitative data from the meetings were analyzed using multi-grounded (MGT) theory analysis (Goldkuhl & Cronholm, 2010). ResultsResults show that sharing experiences was highly meaningful; participants' openness and comfort led to deep revelations and real friendships. Major themes were able to be identified using Multi Grounded Theory (MGT): lifelong responsibility, strong dedication to their families even as they become independent, and resilience to chronic challenges. Three theory categories emerged: Individual Experience, Family Life in Private, and Family Functioning in Public. Using MGT, thematic action paradigm models were constructed to illustrate researchable relationships among identified conditions, actions, and consequences in these domains. ConclusionsIn conclusion, this project shows the feasibility and value of developing intervention and research goals simultaneously. The participants reported the peer-led structured support group was meaningful and useful. MGT analysis of the recorded discussions substantiated previous findings and elaborated on themes such as the pervasive role that stigma plays in family decisions and how inseparable the sibling relationship is from the typically developing sibling’s (TDS’s) personal identity and development.

Examination of the Effectiveness and Acceptability of a Play-Based Sibling Intervention for Children with Autism: A Single-Case Research Design.

Complementary and reciprocal interactions are a defining feature of sibling relationships for young children. However, the social and communication difficulties of children with autism spectrum disorder (ASD) can make reciprocal play more difficult and play between siblings can be less rewarding. Sibling play can serve an important role in intervention and family cohesiveness, but there is no consistent method for involving siblings in intervention benefitting the sibling dyad. This study evaluated a novel treatment package including training siblings on play strategies to increase positive sibling play in combination with a sibling support group to offer social support for the neurotypical sibling (NT). The effects of the treatment package on NT sibling play and fidelity of implementation of naturalistic play strategies was examined using a concurrent multiple-baseline design across six dyads, five of whom completed the intervention. After behavior skills training, all NT siblings increased the number of strategies they used, and increased the frequency of initiations towards their sibling with ASD. In addition, the percentage of reciprocal play between siblings increased. Generalization probes and follow-up probes demonstrated above-baseline levels of performance across most dyads, indicating that the skills learned generalized across other toys and were maintained over time. Only three of the sibling support group sessions were completed due to the COVID-19 pandemic. Although the effectiveness of the sibling support group cannot be determined, social validity questionnaires suggest siblings and parents valued and liked the support group.Supplementary InformationThe online version contains supplementary material available at 10.1007/s43494-021-00043-5.

The cancer journey through the lens of a sibling: a photovoice intervention for teen siblings of children with cancer

ABSTRACT Photovoice was employed as a clinical intervention to engage siblings of children with cancer, provide opportunity for sibling support, and elicit information about their lived experiences. Sibling support groups have been effective, however, none have utilized this intervention. Four teenagers who had a sibling diagnosed with cancer participated in a seven-week intervention group. Themes were identified to inform future clinical practice. Four main themes included: (i) support, (ii) changes, (iii) feelings, and (iv) Photovoice group experience. Photovoice, used as a clinical intervention, elicited valuable information and generated fruitful conversations, enabling siblings to relate to and learn from one another.

Groupes fratries comme dispositifs d’accompagnement des frères et sœurs d’enfants porteurs de handicap et/ou maladie : une revue de la littérature

This paper is aiming to a literature review on support groups for siblings of children with disability or illness. It is in line with the work of Dayan, Picon, Scelles and Bouteyre (2006), with an inventory of publications in English and French published between 2006 and 2020. Given the increase in studies targeting autism spectrum disorders (ASD), a focus is proposed on groups conducted in this specific context. After describing the diversity of the sibling groups’ methodological/theoretical frameworks and approaches, their functioning and objectives, a comparative analysis of the benefits they provide is carried out according to whether they concern any type of disability/disease or focus on ASDs. The limitations of these studies are analyzed and perspectives for future work are outlined.

Randomized controlled trial of a sibling support group: Mental health outcomes for siblings of children with autism.

Typically developing siblings of a child with autism spectrum disorder may show mental health difficulties. A support group is one approach to help typically developing siblings. During support groups, typically developing siblings discuss their feelings, learn coping strategies and problem-solving skills, and develop a peer network. We compared a support group to participation in a similar group without a focus on the sibling with autism spectrum disorder. Some areas of mental health improved. Improvements were also impacted by autism spectrum disorder symptom severity in the sibling with autism spectrum disorder. Findings suggest continuing to examine how support groups can help typically developing siblings and for which siblings support groups might be particularly effective.

Mental Health Trainee Facilitation of Sibling Support Groups: Understanding its Influence on Views and Skills of Family-Centered Care.

Prior research suggests family-centered interventions are among the least taught yet most needed skills for practicing psychiatry. In this study, we evaluated whether having mental health trainees lead a sibling support group could serve as a method to promote family-centered care among trainees. All trainees in psychiatry, psychology, and social work were invited to participate as sibling support group facilitators. Both facilitator and non-facilitator trainees were then surveyed using a questionnaire inquiring about exposure to family-centered care, comfort level in providing family-centered care, attitudes regarding the importance of family-centered care, and desire to provide family-centered care in the future. A second survey was administered to the facilitator trainees to assess their perceptions of the sibling group leader experience. Facilitator trainees reported increased engagement in family-centered activities during training (p < 0.05), expressed greater confidence in their family-centered care skills (p < 0.05), and reported stronger intentions to practice in a family-centered way (p < 0.05). Facilitator trainees were overwhelmingly positive about their experience with the sibling support program and reported it strengthened their commitment to addressing the needs of siblings as a part of family-centered care. Facilitating a sibling support group may be an effective way for mental health trainees to gain skills and confidence in delivering family-centered care. Mental health training programs aiming to imbue trainees with the importance of family-centered care may consider creating opportunities for trainees to facilitate sibling support groups.

Augmenting Sibling Support with Parent-Sibling Training in Families of Children with Autism

ABSTRACT Background: Typically developing (TD) siblings are an important part of the family system, but may show strained relationships in families of children with ASD. Objective: We augmented a sibling support group with parent-sibling training in which parents learned (through instructions, modeling, rehearsal, and feedback) how to prompt and reinforce prosocial behaviors in their TD children. Method: We examined the effects of parent-sibling training on parent and TD sibling behaviors in a multiple baseline across families design. Results: Parent prompting and reinforcement of TD sibling prosocial behaviors increase. TD sibling prosocial behaviors such as sharing with and talking to their sibling with ASD also increased. Broader measures of the sibling relationship showed some improvements. Conclusion: Findings suggest ways to support families of children with ASD with future investigations of parent-sibling training examining longer intervention, all family members’ adjustment and relationships, and sibling characteristics that influence response to parent-sibling training.

3.35 Understanding the Influence of Sibling Support Group Facilitation on Mental Health Trainee Views and Skills of Family-Centered Care

Prior research suggests that family-centered interventions are among the least taught in training, yet most needed skills for practicing psychiatry. In this study, we sought to evaluate whether having mental health trainees lead a sibling support group could serve as a method to promote family-centered care among trainees.

Depression and Quality of Life in Siblings of Children With Cancer After Group Intervention Participation: A Randomized Control Trial.

The objective of this study was to (1) assess the effects of a group intervention called Siblings Coping Together on siblings' psychosocial adjustment compared with controls; (2) explore the potential moderating effect of siblings' gender; and (3) investigate whether the intervention was more effective for siblings with more depressive symptoms at baseline. This was a repeated measure, parallel randomized controlled trial (RCT) with two groups. Seventy-five healthy siblings (7-16 years old, 41 males) participated. Both groups had 8 weekly 2-hr sessions. Intervention sessions had psychoeducational, social, and therapeutic problem-solving goals taught through games and crafts (n = 41); controls (n = 34) had games and crafts only. Self-reported symptoms of depression (Children's Depression Inventory, CDI) and self- and proxy-reported quality of life (QOL) (Pediatric Quality of Life Inventory, PedsQL) were obtained at baseline, postintervention, and 3 months later. Multivariable analyses with a mixed effects model were performed. No significant main group effect or group × time interactions were found for any of the scales assessed. Significant improvement over time was found for total CDI (p < .01) and proxy-reported PedsQL total (p < .001) in both groups, which may have been attributable to the passage of time. No sufficient evidence was obtained for the efficacy of the intervention in the current study. Future research may examine conducting a larger RCT comparing sibling support group to no treatment control group.

A Psychoeducational Group Intervention for Siblings of Children With Autism Spectrum Disorder

This study examined the effectiveness of an 8-week psychoeducational group program for siblings of children with autism spectrum disorder (ASD). The sample consisted of 38 siblings aged 6–15 years (M = 10.75), allocated to the experimental (n = 22) or control group (n = 16). Self-report questionnaires were administered before and after the intervention. Results indicated a significant increase in knowledge of ASD in the experimental group, but not in the control group. In addition, a statistically significant reduction in adjustment difficulties and emotional/behavioral problems in the experimental group was detected. The theoretical and practical relevance of the findings for facilitating sibling support groups is discussed.

Emotional communication in support groups for siblings of children with disabilities

ObjectiveSupport groups are often arranged for siblings of children with disabilities to prevent psychological maladjustment. This study describes how children express emotions in support groups and how group leaders and other children respond. MethodConversations in 17 group sessions for siblings aged 11 to 16 were coded with VR-CoDES to report frequency of emotional expressions and responses. ResultsChildren expressed negative emotion during group sessions (n=235), 59% as cues and 41%concerns. The immediate response was in 98% of the instances from the group leader. 38% of the responses focused on emotion, cognition or behavior. ConclusionChildren express emotions, but seldom respond immediately to others’ emotional expressions in support groups. Group leaders should attend to emotion, cognition and behavior more frequently. Practice implicationsGroup leaders may better fulfill the support potential of support groups through explicitly stating the role of participants, and by exploring emotional aspects.

The interaction between people with Down syndrome and their siblings: an exploratory study

The presence of a disabled person causes transformations in the family that demand a redefinition of the role of each member. Siblings, like all other members, experience frustration, acceptance, guilt and adaptation. In this respect, an attempt was made to; (a) analyze the interaction between a sibling with standard development and a sibling with Down syndrome; (b) identify what information and reaction the siblings with standard development have regarding the diagnosis of Down syndrome; (c) verify whether or not there were changes in the family context and also changes in their own lives after the birth of the sibling with Down syndrome. The survey was conducted through interviews, the participants being seven children with standard development having siblings with Down syndrome. The study showed that the siblings, as well as the other family members, experience processes of acceptance, confusion and other complex emotions related to the disability, albeit they are not as marked as those experienced by their parents. A fact revealed in this study is the importance of support groups for siblings, seeking to handle issues such as prejudice and adverse feelings towards disability. The siblings with standard development must have correct information, as well as support, in order to foster healthy interaction between siblings.