Quantitative studies |
Greece | 38 N/R 77.3%M All autistic | 12 10.75 (6–15) 10 M, 2F 50% older than disabled sibling | 16 10.75 (6–15) 8 M, 8F 56.3% older Waitlist control | 8 × 90 min sessions Psycho-education, emotional education and regulation, cognitive restructuring, problem-solving Pre/post-intervention only | Coping skills Knowledge of autism | SDQ (sibling; emotional adjustment) Coping/Adjustment scale Knowledge of autism questionnaire No intervention evaluation survey |
U.K | No details provided other than had ‘learning disabilities’ with or without challenging behaviours | 2 groups 1st group: 9 8–12 years 6F, 3 M 2nd group: 9 7–12 years 7F, 2 M | None | 3 consecutive full days during school holidays, then weekly for 6 evenings, and 1 final full day on weekend. Structured program with age-appropriate activities Pre/post-intervention only | Problem-solving Coping skills Creativity | Culture Free Self-Esteem Test Knowledge of NDC questionnaire Evaluation survey CBCL (parent, baseline only; emotional adjustment) |
Cambodia | 54 9.6 (3–16) 56% M DS, ADHD, autism, ID, LD | 52 12.7 (8–21) 44% F SES rated good (11.9%), medium (54.8%), poor (33.3%) | None | Manualised, 1 full day of 5 sessions (1 × 20 min, 4 × 60 min): 3 sessions parallel group sessions for siblings and parents. 2 sessions integrated sibling-parent dialogues 4-month follow-up | Emotional and
cognitive-behavioural regulation Parent–child communication | SDQ (sibling and parent) DASS (parent self-report; depression) PCCS (child and parent; communication) Intervention evaluation survey (post-intervention and 4 month follow-up) |
U.K | 6 11–13 years N/S All autistic | 6 8–13 years 5F, 1 M | None | 4 face to face, 4 audio-conference, weekly 1 h for 8 weeks. Topics on group cohesion, problem-solving, psychoeducation, hope One follow-up interviews at 4–6 months | Understanding of NDC Forming new connections Emotion regulation | SDQ (sibling and parent) PedsQL4.0 (quality of life) Sibling’s Views Questionnaire (knowledge) Intervention evaluation survey |
Giallo and Gavidia-Payne ( 2008) Australia | Disabled siblings of intervention children: 12 10.92 (3–16) 58.2%M NDC n(%): DS 1 (8.3), Autism 3 (25.0), ADHD 1 (8.3), Polymicrogyria 1 (8.3), Multiple 2 (16.7), Congenital Heart Disorder 2 (16.7), WS 1 (8.3) NDC severity (parent-rated): Mild 3 (25.0), moderate 8 (66.7), severe 1 (8.3) | 12 11.75 (9–16) 50%M 58.3% older than disabled sibling | 9 11 (8–16) 33.3%M 88.9% older Waitlist control NDC siblings of control group children: n = 9 10.07 (6–21), 55.6% M NDC n (%): DS 3 (33.3), Autism 2 (22.2), Multiple 2 (22.2), CF 1 (11.1), WS 1 (11.1) | RCT SibStars program with waitlist control. Psycho-educational components, 6 × weekly 20–30 min sessions, with telephone support. Parallel parent−education program Pre/post-intervention only | Problem-solving, stress reduction, manage emotional reactions | Sibling Daily Hassles and Uplift Scale (stress) Self-Report Coping Scale SDQ (parent) Participant Satisfaction Questionnaire (custom intervention evaluation survey) |
Norway | 99 10.4 (3–21) 45%F Caucasian NDC (%) rare disorder with ID (29.3), Autism (25.3), rare disorder with physical impairment (23.2), Congenital heart disease (12.1), DS (7.1), CP (3.0) | 99 11.5 (8–16) 54.5% F 59.8% older than disabled sibling | None | Joint sibling-parent manual-based program, 5 sessions within 2–5 day samples. 22 groups with 3–7 siblings per group Parallel parent−education program T2 (n = 77) 18 weeks after completion. T3 (n = 55) 33 weeks after completion. | Improve knowledge of NDC, parent–child communication, emotion expression and regulation | SDQ (parent and sibling) PCCS (sibling) SPQ (sibling; negative adjustment sub-scale, NAS) Acceptability and Satisfaction Evaluation form (custom intervention evaluation survey) |
U.S | 44 7.43(3.37) (3–17) All autistic Support group: 3F, 18 M Control group: 5F, 18 M | 24 8.31(3.52) (3.5–18) 10F, 14 M 40% older than disabled sibling 4 white, 3 mixed race, 13 Asian, 2 Hispanic, 1 Guyanese | 30 8.62(3.75) (4–15) 20F, 10 M (15 older, 13 younger, 2 same age) 6 white, 6 mixed race, 10 Asian, 6 Hispanic, 1 Guyanese Attention-only condition | RCT of pilot program (Kryzak, 2014) Support group: 2 h per week, 10 weeks, education in social, communication and problem-solving skills Attention condition did not include autism education Autistic siblings all received parallel intervention | Problem-solving, communication, emotion regulation | CDI-2 (depression) RCMAS-2 (anxiety) CCSC (coping) No intervention evaluation survey |
South Korea | All had ‘developmental disabilities’ no further details reported | 18 9.17 (7–13) 11 M, 7F | 11 10.27 (7–13) 7 M, 4F Control ‘free play’ condition (also waitlist) | RCT. Weekly art therapy in the forest for 8 weeks, 60 min per session. Waitlist control group with a free-play outside condition Pre/post-intervention only | Physiological and emotional conflict resolution, forming connection, self-esteem, stress reduction | Stress sale Self-esteem scale Attention quotient and anti-stress quotient (EEG measures) No intervention evaluation survey |
U.S | 1st group: n = 7 5–11 years 4 M, 3F 2nd group: n = 8 4–13 years 8 M All autistic | 1st group: n = 6 6–18 years 4 M, 2F 2nd group: n = 9 5 M, 4F 6–14 years | None | ‘Support and Skills Program’ (SSP), 2 h on Saturdays over 8 weeks (1st group) and 9 weeks (2nd group). Individualised skills session plus recreation time. Weekly topic focussed on a characteristic of autism and coping skills Parallel individualised skills interventions for the autistic child | Coping skills, forming connection, emotion education Behavioural observations of positive and negative affect (frequency, time) coded from videos of sessions | CDI
(depression) RCMAS-2 (anxiety) Autism Sibling Knowledge questionnaire Social validity questionnaire No intervention evaluation survey |
U.S | 44 8.7 (1–16 years) 33 M, 14F NDCs: physical disabilities (26%), autism (23%), MR (21%), medical coditions (17%), combined psychiatric and LD (13%) | 54 9.8 (8–13) 24 M, 30F 57% older than disabled sibling 89% Caucasian | None | Manualised SibLink program, 6 × 90 min group sessions, 6–8 weeks 9 groups with 6 siblings each Parallel parent education component with parent manual 3 month follow-up | Identifying and regulating emotions, problem-solving in challenging situations, knowledge of NDC family information exchange, connecting with other siblings | CBCL (parent) SPQ (NAS) (sibling and parent) Sibling Knowledge of CI/DD (structured interview, custom) Sibling Connectedness scale (sibling−dyad relationship, custom) Participant Satisfaction (1–5 scale) (no other intervention evaluation) |
U.S | N/R All identified as having MR, physical handicap (PH) or ‘multiply handicapped’ (MH; including MR and PH) | 6 9.17 (range N/R) 17% M, 83% F 100% Caucasian Siblings’ handicap: 17% MR, 17% PH, 67% MH | 5 10.6 (range N/R) 60% M, 40% F 80% Caucasian, 20% Hispanic Siblings’ handicap: 80% MR, 20% MH Not waitlist, different activities | One-hour group session per week for 6 weeks. Sessions held by two state-certified school psychologists. One activity per week (e.g. ‘Dear Aunt Blaby’, role-play, homework, completion of a ‘feelings book’) | Expression of feelings, education on NDCs, coping strategies, self-concept, sibling interactions | PHSCS (self-esteem) Let’s Grow Together (positive feelings or attitudes, custom) Who Helps Me (social support, custom) |
U.S | All siblings had ‘developmental disabilities’ with mild to moderate MR Further data N/R | 90 Overall (n = 180): 11.3 (9–12) 72 M (40%), 108F African-American ethnicity, low-income families | 90 Overall (n = 180): 11.3 (9–12) 72 M (40%), 108F African-American ethnicity, low-income families Waitlist control | RCT of a community-based after-school program. Every weekday for 2.5 h, 15 weeks. Group discussions (40–45 min), homework assistance, and education on NDCs (one topic per week) | Socioemotional functioning, self-esteem, anxiety, depression, chronic stress, family functioning, sibling relationship, and perception of social support | CDI (depression) CMAS-R (anxiety) SEQ (self-esteem) PSSS-R (social support) DHQ (stress) FES (family functioning) SRQ (sibling relationship) No evaluation survey |
Australia | 42 (across control and treatment) 8.86 (4–17) Age difference 0–7 years range All autistic | 22 9.3 (7.5–12.5 years) 12 M 10F 48.8% older than disabled sibling | 20 Mean age N/R (7.5–12.5 years) 5 M, 15F 50% older Waitlist control | Alternating allocation controlled trial SibworkS: group-based manualised support program, 2 h weekly after school. Treatment had 4 × 6 week groups with 6–8 children each Parent component with parenting manual 3-month follow-up | Cognitive−behavioural therapy principles on goal-setting, sharing knowledge, expressing feeling, seeking social support, coping with stress, and problem-solving | SSSC (social support) SRCS (coping) RSES (self-esteem) ‘What I’ve learned’ Evaluation (knowledge) Satisfaction survey |
U.K | 23 Other data N/R Autism (23), other DD (8) | 26 10.63 (6–16 years) 14F, 12 M 53.8% older than disabled sibling | None | Weekly group for 8 weeks. No further information reported | Increasing knowledge, sharing feelings, learning coping skills, enhancing self-concept | PHSCS (self-esteem) Coping and Adjustment Scale (anger/resentment sub-scale) Autism Knowledge Measure for Young Children Intervention evaluation (interview) |
U.S | Treatment: 79 10.8 (1–19 years) Diagnoses (%): CF (5.1), diabetes (27.8), spina bifida (12.7), cancer (7.6), DDs (46.8) Control: 102 9 (1–19 years) Diagnoses (%) CF (3.9), diabetes (43.1), spina bifida (5.9), cancer (6.9), DDs (40.2) | 79 (full) 71 (partial) Full: 79 11.1 (7–16 years) 51.9%M 87.3% white ethnicity Partial: data N/R | 102 11.2 (6–16 years) 54.9%M 86.1% white ethnicity Waitlist control | Randomised, 3 groups (full, partial intervention and waitlist control), Full intervention: structured teaching about NDCs, psychosocial sessions, a 5-day residential summer camp, and two booster sibling sessions. Included parent education component. Partial treatment = camp only condition Assessments: baseline and 5 days post-intervention, 4, 9, 12 months | Sibling knowledge, sibling social support, self-esteem, mood and positive affect, behaviour problems, sibling attitude towards illness/NDC | SSSC (social support) SPPC (self-esteem) SPQ (sub-scale mood) SPQ (NAS) No evaluation
survey |
(same participant data as Jones et al., 2020) | 44 7.43(3.37) (3–17) All autistic Support group: 3F, 18 M Control group: 5F, 18 M | 24 8.31(3.52) (3.5–18) 10F, 14 M 40% older than disabled sibling 4 white, 3 mixed race, 13 Asian, 2 Hispanic, 1 Guyanese | 30 8.62(3.75) (4–15) 20F, 10 M 50% older than disabled sibling 6 white, 6 mixed race, 10 Asian, 6 Hispanic, 1 Guyanese Attention-only condition | Secondary data analysis on Jones et al. ( 2020) Randomised controlled trial over 10 weeks with an attention-only control. Lessons focussed on psycho-education, discussing emotions, learning coping skills, knowledge of autism, support network | Sibling−dyad relationship quality improvement | Observational coding during free play sessions in 2 × 5 min blocks by group facilitators Sibling Relationship Questionnaire (SIB-S) (modified Buhrmester & Furman, 1990) SIB-P (parent-report on sibling relationship) CBCL (parent) |
Mixed methods studies |
U.K | Data N/R All had ‘physical or intellectual disability or both’ | 16 8–10 years 11 M, 5F | None | SibShops model, monthly × 4 months, Saturday 10am–1 pm, psycho-education and recreation Parent and professional education opportunities in parallel Pre/post-intervention only | Discuss experiences, learn coping skills, learn about NDC, share common joys and worries | PHSCS (self-esteem) Sibling interview at home No evaluation survey |
U.S | 44 6–17 years All autistic | 37 15(1.2), 14–17 years 53% F (4 intervention groups of 8–10 participants) 80% white, 11% Hispanic/Latino | None | Modified Stress Management and Resiliency Training-Relaxation Response Resiliency Program [SMART-3RP “SibChat” 1 h virtual sessions weekly over 8 weeks. Incorporating CBT and positive psychology. Run by two clinical psychoogists. Program piloted on a sibling advisory panel | Improve sibling resiliency and stress coping abilities through mind–body techniques to elicit relaxation response, promote positivity, and empowering states of mind | Quantitative survey on benefits of intervention (non-standardised) Qualitative sibling interview |
U.K | Data N/R 49.1% autism, 51.9% included DS and other ‘chronic conditions’ | 55 (from 11 schools) 9.18 (7–11) 54.5% F 43.6% white-British, 23.6% Pakistani | None | Sibs Talk. One-to-one manualised support for school students. 10 sessions of 25–35 min over 1 school term. Focus on sibling’s feelings, experiences, challenges Pre/post-intervention only | Improve overall wellbeing, engagement with learning. Reduce anxiety | HIFAMS.(positive mood, social support) SDQ (parent) Evaluation interview |
Qualitative studies |
Calio and Higgins-D’Alessandro ( 2021) U.S | 6 19.5 (11–26 years) Autism All male 5 living at home with parents, 1 living in a group home | 6 21 (20–22 years) 4 M, 2F Two older than the autistic sibling All Caucasian university students, Catholic or Christian upbringing | None | Peer-led structured support group for university students; the ‘Sibling Allies’ model. 5 sessions, 35–65 min every second week. Topics: sense of responsibility, leaving home, misconceptions, community interactions, maturity, family relationships, school experience, worries about the future. Follow-up survey 1–2 years post-intervention | Evaluate group’s meaningfulness and usefulness; improve sibling willingness to share experiences; improve social connections | Thematic analysis conducted by study authors of 5 recorded support group discussions, using Multi-Grounded Theory (MGT) to develop causal relationships between conditions (contexts, background), actions (response to NDC), and consequences (attitudes, feelings, and resulting circumstances) |
Norway | Data N/R NDCs (n) Rare chromosomal conditions with ID (16), spinal muscular atrophy (7), Sotos syndrome (6), Friedreich’s ataxia (5), 22q11.2 deletion syndrome (5), neuronal ceroid lipofuscinoses (2), ID (2), other (5) | 58 11.4 (7–17 years) 69%F 55.2% older than disabled sibling All Caucasian | None | Age-matched groups of 4–7 children, met for 3 × 60 min sessions over 5-day residential stay; 1 group leader and 1 facilitator. Topics on: diagnostic information, creative art, emotions and coping | Knowledge of NDC, emotion regulation and expression, family communication | Video recordings of 20 regular group sessions with 11 groups (verbal statements coded) |
McCullough and Simon ( 2011) U.K | 3 All male All autistic with ID and limited verbal ability | 3 1F age 7, 1 M age 8, 1F age 10. (Broader group, but these 3 participants most regular attendees) | None | Psycho-educational strengths-based group intervention Strengths-based activities to highlight special traits of siblings, build positive feelings, self-efficacy, and self-esteem | Socialising techniques, affective expression, overcome isolation, better communication with
family | Feasibility and acceptance evaluation Themes identified through behavioural observation and conversation (No interview protocol) |
Naylor and Prescott ( 2004) Canada | 55 N/R All LD | 55 8–18 years | None | Group-based support and discussion Quality of life approach to foster support, safeguarding, autonomy and resilience | Feasibility study to establish needs of siblings, reflect on direct experiences and feelings of siblings | Evaluation and feasibility through dialogue with siblings Final evaluation interview to highlight changes in siblings’ perceptions (No interview protocol) |
U.K | All under 16 years Other data N/R All had moderate to severe NDC (autism, severe LD, chromosomal deletion, CP, epilepsy) | 7 8–13 years 1 M, 6F (the 1 M stopped after one session) 2 White-British, 1 Asian British, 1 mixed race British | None | Community intervention offered through child and adolescent mental health service. Based on Sibs (UK) manualised program. 10 weekly 2-h sessions after school adopting a strengths-based approach | Improve family communication, problem-solving coping strategies, increase knowledge of NDC, recognise and describe feelings | Semi-structured interview evaluation during final session (n = 4 in attendance) with thematic analysis |