Lorraine O’Connor, Emma Stack and Maria Gomes
Autism spectrum disorder (ASD) emerges in early childhood and is characterised by atypical neurodevelopment resulting in impaired social communication and rigid and repetitive patterns of behaviour. Once thought to be relatively rare, there has been a worldwide increase in the prevalence of children diagnosed with ASD. Figures have risen from 2 to 6 in 10,000 children in epidemiological studies prior to the 1990s to current estimates of up to 260/10,000 or 2.6%1. In an Irish context, the most recent figures estimate a prevalence rate of 1.5% in a national school population aged 6-11 years2. Increased rates of ASD have resulted in a growth in research pertaining to ASD and its social and psychological impact on immediate family members. Currently, Sibshops have different criteria in terms of group size, age range, frequency and duration of groups, focus on a specific disability and therapeutic approach. This article will introduce five key recommendations to be implemented in future Sibshops based on these criteria.
Autism spectrum disorder (ASD) is a behaviourally defined neurodevelopmental disorder associated with the presence of social communication deficits and restricted and repetitive behaviours3. The incidence and prevalence of ASD have increased over the last 20 years4. This increase has directly resulted in an increase in the research topic of ASD and its impact on family members. The birth of a child with a disability or chronic illness, or the discovery that a child has an impairment, has a profound effect on the family. The family system model5, ecological model6, transactional model7 and developmental systems model8 suggest that as one family member is affected by a disability or disease, each family member, in turn, must individually adjust to the impact of that disability or disease9. Previous research has identified the significance of the sibling relationship. Hartup10 refers to the sibling relationship as the first peer relationship in life. He theorised that a) close peer relationships are crucial for social development during childhood and b) social interaction varies across relationships according to the extent of reciprocity and emotion involved.
Siblings of children with ASD are believed to confront unique challenges. These include encountering negative reactions from the public due to the stereotypical, repetitive and unpredictable behaviour of the child with ASD despite a typical physical presentation which may mask underlying cognitive and developmental deficits11, 12. Several studies have reported greater behavioural and emotional problems in siblings of children with ASD, including higher scores on depression measures and greater internalizing/ externalizing problem behaviours, in comparison to siblings of children with another disability or no disability13-16. In response to the identified difficulties faced by siblings of children with ASD, sibling support groups have emerged in recent years.
The original Sibshop programme was founded by Don Meyer and Greg Schell in 1978. Sibshops refer to sibling groups that incorporate Meyer and Schell’s original model. Sibling support groups generally have the same goals as Sibshops, but may not adhere to Meyer and Schell’s original model for implementation of the group17, 20, 21. As the fundamental features are similar, the terms Sibshops and sibling support groups will be used interchangeably throughout this article. The programme was designed to engage typically developing children and encourage them to make an impact on the lives of their siblings with a disability17. The target population was initially children between the ages of 8 to 13 years old. Since the programme’s inception, services’ implementation of Sibshops has varied. Some disability services offer one- or two-hour workshops over a period of 8 to 10 consecutive weeks18,19 while others conduct less frequent (monthly or biannually) day-long ‘events’ for siblings17, 20, 21 . Sibshops also differ in terms of the age range they target, the group size and whether they focus on a specific disability or disabilities in general. Data collected in 2012 estimates that 340 Sibshops were taking place across eight countries20. The common thread across all Sibshops appears to be the inclusion of both an informational component and a social component. The informational component educates children on the socio-emotional implications of their siblings’ disability on themselves and their immediate family members. Furthermore, the social component enables children to share their concerns and help each other problem solve the challenges they may be experiencing.
Evaluations of the efficacy of Sibshops provide encouraging findings. Zona and his colleagues22 found positive changes in sibling relations as measured by the Sibling Need and Involvement Profile (SNIP)23. The area of greatest improvement was children’s awareness of their siblings’ developmental delay which illustrates that implementation of the educational component of the programme was successful. A sibling support group conducted in an Irish context21found similar advances in sibling involvement as well as overall improvements in family relationships. Participants valued the opportunity to meet other siblings of individuals with a developmental disability, to become more knowledgeable about their siblings’ disability, and to openly discuss the feelings and challenges they are experiencing. Dailey’s20 evaluation indicates that parents are equally pleased with the outcomes of the Sibshop programme. Parents report that the programme was a positive experience for their child; allowing them to feel like they were not alone and that their feelings were being recognised. They observed positive changes in terms of their child’s attitude and knowledge about their sibling’s disability. Both parental and sibling satisfaction with the programme is a promising finding as it aligns with the family-centred approach to service delivery.
Family-centred practice is an empowering approach to service delivery that involves supporting, involving and engaging with all family members as opposed to only the child who requires support and intervention. It recognises that the wellbeing and development of each family member and the family as a whole are critical to the wellbeing and development of the child24. Family-centred practice is one of the six guiding principles of the National Children’s Strategy25. The Health Service Executive (HSE) child disability services, who provide assessment and intervention for children with complex developmental needs, strive to implement a family-centred approach to service delivery. In addition to a family-centred approach, the HSE disability services endeavour to work on an interdisciplinary and interagency basis. These collaborative approaches are valuable as they increase communication effectiveness among team members and build a sense of partnership and teamwork. Improved communication and collaboration results in ameliorations in the overall care and support that each child and their family receives26.
Fifty-one per cent of the children registered with a school age disability service in the Mid-West of Ireland are diagnosed with ASD, with a further 25% of children having a query of ASD. While we do not possess statistics for other school age disability services in Ireland, we suspect these figures are relatively representative of national figures. As ASD is thought to account for a large proportion of presentations in child disability services in Ireland, many services provide family support in the form of programmes, such as ‘EarlyBird’ and ‘Understanding Autism’. These programmes, usually conducted by an interdisciplinary team, aim to empower parents in guiding their children’s social communication and positive behaviour in everyday life. Despite the known challenges experienced by siblings of children with ASD, sibling support groups are not as widely available as parental support groups in Ireland. Unfortunately, due to factors including the increase in demand for school age disability services27, such services are struggling to meet the needs of families. As parents are not only family members of children with a disability but usually also their primary caregivers and legal guardians28, training and support for parents appears to be prioritised above training and support for siblings. In light of research indicating the potential advantageous impact of Sibshops on siblings’ attitude, knowledge and engagement with their brothers or sisters with a disability, it is thought that sibling support groups would be beneficial for overall family relationships.
The purpose of this paper is to make recommendations on best practice for delivery of the Sibshop programme to siblings of children with ASD in Ireland. Thus far, services have varied in terms of their approach to conducting the Sibshop programme. We aim to make recommendations for best practice that are empirically or theoretically supported.
Recommendations for Best Practice
The following five recommendations, summarised in Table 1, expand on Meyer and Schell’s original model by providing more concrete guidelines for implementation of the Sibshop programme. These recommendations are based on theory, research and best practice guidelines. These guidelines, provided by the National Co-ordinating Group for the programme ‘Progressing Disability Services for Children & Young People’24, include adopting a family-centred, interdisciplinary and interagency approach.
Previous sibling support groups have varied in terms of group size, some groups being as small as three participants with others as large as 52 participants17, 20. According to Meyer and Vadasy29, the Sibshop programme should generally not exceed 12 participants to help ensure group cohesion. Small groups make it possible for programme facilitators to provide individualised attention and instruction, leading to a more meaningful experience for the participants. Pollock, Hamann, and Wilson’s study30 found that learning through discussion appears to be more beneficial in small groups than in large-class settings. Small-group settings allow for more frequent participation, offer fewer opportunities to disengage mentally from the discussion, and consequentially further students’ engagement compared to a large-class setting. Ideally, support groups that are offered to siblings of children with ASD should be limited to a group size of 8 to 12 children. Undoubtedly, many child disability services are under-resourced31 and may not have the option of coordinating multiple small-group Sibshops. In this case, it is advised that services invite all interested siblings to the Sibshops and split them into smaller subgroups to facilitate discussion and engagement.
In recent years, sibling support groups have varied immensely regarding the range of participants’ ages. The Sibshop programme has been conducted for children ranging from the ages of 8 to 14 years old18, 4 to 14 years old20, 6 to 16 years old19 and 7 to 12 years old22. Such variation in age is not advisable. Age range should be restricted considering the significant cognitive development individuals experience during late childhood and early adolescence32. The information and activities in the Sibshop programme are tailored to siblings at the late childhood developmental stage. Research suggests that children’s understanding of ASD is largely dependent on his or her level of cognitive development33. Steinberg wrote that information processing, reasoning and expertise develop markedly during early adolescence32. As such, it would be pertinent to arrange Sibshops by age group so as to ensure that participants are at a similar stage of cognitive development. Therefore, it is advised that individuals in late childhood attend separate groups to those in adolescence. The impact of ASD on a sibling will also change as their cognitive skills, as well as their socio-emotional skills, develop throughout the lifespan. As per the original model introduced by Don Meyer and Greg Schell, it is recommended that the age range should be limited to 8 to 13 years old. If a service wishes to provide support to teenage siblings, it is advised that the content of the Sibshop programme be adjusted and the Sibshop for teenagers occur distinctly to the Sibshop for younger children. In relation to younger children who do not meet the age criteria proposed above it is advised that parents should act as the support system. In order to provide such parents with the skills required for supporting their younger children, it is recommended that groups such as ‘Understanding Autism’ and ‘EarlyBird’ equip parents with adequate training and resources.
Frequency and duration of groups
Sibshops tend to vary in terms of how frequently they occur and the duration of the group. The frequency of a support group is an important factor to consider. Some children who may be encountering a wide range of issues, or are introverted18, may feel that the support group should occur more frequently. It is proposed that the Sibshops run for 8 to 10 consecutive weeks. This would give ample time for children to ‘warm-up’ to each other, to ‘be themselves’, and to become comfortable sharing their thoughts and feelings with each other18. The duration of the support group is a further important factor for consideration. Moyer and Gilmer34 suggest that young children are built for action rather than sitting still for a period of time; therefore, it can be theorised that younger children may not benefit from discussion based Sibshops. Older children may have a slightly longer attention span and may be able to withstand a longer discussion centred on their thoughts, feelings and experiences35. It is advised that for children between the ages of 8 to 13 years old, the Sibshop last for one hour. Both the duration and frequency of a group are contributing factors to the rapport between child and practitioner being constructed. Rapport can be defined as “a positive emotional connection”36(p13). A recent study by Crary37 suggests that the longer one spends communicating, the stronger the interpersonal connection becomes38. This finding supports the recommendation of short but regular support groups as opposed to day-long, infrequent events. However, it is important to highlight that both the duration and frequency of Sibshops and their impact on the efficacy of the group has not been empirically investigated to date. Future research is required in order to gain greater insight as to what is the optimal duration and frequency for such groups.
Focus on specific disability
The original Sibshop programme was designed to support siblings of children with life-long mental and/ or physical impairments that appear before adulthood i.e. developmental disabilities. Over time, the specific groups of siblings that the programme has targeted has grown. Some services have expanded their service delivery, holding Sibshops for siblings of children with developmental disabilities such as neurological conditions, learning disabilities or developmental delay, mental health diagnoses, and medical conditions such as cancer or diabetes20. It is believed that siblings of children with developmental disabilities will encounter different challenges to siblings of children with chronic medical conditions. With regards to the latter, Fleary and Heffer found that for the sibling living with a chronically ill brother or sister, there can be negative effects on their social functioning (their ability to maintain trusting social relationships) in late adolescence39. It is important to note that even within the category of developmental disabilities; siblings are likely to experience different challenges depending on the specific diagnosis. Notwithstanding other characteristics, clinical markers of ASD include poorly integrated verbal and nonverbal communication, reduced facial expressions, poor eye contact and reduced sharing of interests40. As a result, siblings of children with ASD may experience unique difficulties when interacting with their sibling. To ensure that the programme is tailored to the specific challenges children are experiencing, we recommend that separate Sibshops are conducted for siblings of children with different diagnoses.
The primary goals of the Sibshop programme are to a) educate children on the challenges associated with their siblings’ disability and b) provide a supportive environment in which they can discuss the challenges they are experiencing21. To guide children in problem solving, it may be helpful to discuss their thoughts and feelings related to their experiences. Cognitive Behavioural Therapy (CBT) is a therapeutic approach that aims to improve how one feels and behaves by challenging and changing unhelpful thoughts.
Research suggests that implementation of a CBT approach when working with children and adolescents results in reduced anxiety, anger, irritability and physical aggression and increased coping skills and emotional awareness41, 42. Based on this research, it is likely that adopting a CBT approach to the Sibshop programme would be advantageous to the emotional wellbeing of the siblings. It is understood that CBT training is not compulsory for all professionals involved in the school age disability team. Subsequently, there may not be CBT trained professionals available to deliver the sibling support group. However, where possible, it is advised that a professional with CBT training delivers the group as research suggests this approach may carry added benefits for the siblings.
It is important to consider that in the case of Sibshops, the CBT approach would be implemented within a group setting. Meyer, Vadasy and Fewell43 highlighted that siblings of children with a disability may experience negative emotions related to their sibling including anxiety, guilt, embarrassment and resentment. For example, children may have anxiety around their peers’ reactions to their sibling with ASD or who will provide care and support to their sibling in the future12, 43. Irvin Yalom44, who has researched group psychotherapy extensively, noted that group therapy aids in cultivating strategies to manage the anxiety and tension that may be triggered by having a sibling with a disability.
Summary of recommendations
|Group size||8-12 children|
|Age range||8-13 years old|
|Frequency & duration||8-10 consecutive weeks, one hour in duration|
|Focus on specific disability
|Yes, Autism Spectrum Disorder
The need for support services for the child with ASD and their immediate family members has increased in recent years as a direct consequence of the increase in the prevalence of ASD. This article outlines five key recommendations to be implemented when carrying out future Sibshops in Ireland. Along with the suggestions introduced in this article, it is advised that Sibshops continue to implement both an interdisciplinary and interagency approach to ensure ample communication and collaboration among team members and consequentially improving the overall level of care and support that each child and their family receives. Currently, parental support groups for ASD generally lack information regarding the sibling relationship and the importance of Sibshops. It is suggested that going forward support groups offered to parents, for instance, ‘Early Bird’ and ‘Understanding Autism’, highlight a) the impact that ASD has on siblings and b) how Sibshops can provide support to siblings of children with ASD. The literature on Sibshops is generally positive; it indicates improvements in siblings’ knowledge of ASD, their family relationships and social support following attending the support group. However, such evidence is sparse. Thus far, there appears to be considerable variation in how services implement the Sibshop programme (i.e. how frequent the workshops are, what age child can attend, how many can attend). We hope to pilot the above recommendations when implementing the Sibshop programme in our school age disability service. Our objectives are to a) measure the efficacy of this model of service delivery and b) enhance the existing literature on this topic. In conclusion, we predict that the implementation of the Sibshop programme with the above recommendations will be beneficial for families attending disability services throughout Ireland.
Lorraine O’Connor, Assistant Psychologist, St. Gabriel’s Children Services.
Emma Stack, Assistant Psychologist, St. Gabriel’s Children Services.
Dr Maria Gomes, Senior Clinical Psychologist, St. Gabriel’s Children Services.
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