SOLACE: A Psychosocial Stigma Protection Intervention to Improve the Mental Health of Parents of Autistic Children—A Feasibility Randomised Controlled Trial

Lodder, Annemarie; Papadopoulos, Chris; Randhawa, Gurch

doi:10.1007/s10803-020-04498-0

Cited by 19 publications

(18 citation statements)

References 87 publications

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“…Various interventions to promote wellbeing in parents of children with ASD have been done around the world but hardly in developing countries. Some involved spirituality [ 49 ] or multi component involving psycho education, cognitive restructuring strategies and compassion focused methods to help parents cope with, prevent, and reduce the harmful effects of self-stigma and eventually improve their mental health [ 50 ]. Varying degrees of success were recorded with implications for scaling.…”

Section: Discussionmentioning

confidence: 99%

Internalization of stigma among parents of children with autism spectrum disorder in Nigeria: a mixed method study

et al. 2021

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Background Autism Spectrum disorder (ASD) has uniquely stigmatizing aspects because children with ASD have no physical markers of their condition. Parents are usually blamed and judgment from others is often internalized (felt stigma). Aim This study was conducted to determine knowledge about ASD, negative experiences (enacted stigma), internalization of stigma (felt or self stigma) and its correlates among parents of children with ASD in Lagos, Nigeria. Methods This was a cross-sectional study of 230 parents in Lagos, Nigeria employing mixed-method data collection methods. Quantitative data were collected using a structured interviewer-administered questionnaire and analyzed with Epi- Info™ version 7.0 statistical package. Data were summarized with proportions, mean and standard deviation. Chi square and Spearman’s correlation tests were done, and the level of significance was pre-determined at 5% (p < 0.05). In-depth interviews were also conducted among six parents to further explore the topic. The interviews were analyzed narratively. Results The proportion of mothers and fathers were 175 (76.1%) and 55 (23.9%) respectively. The mean age of respondents was 42 ± 8.5 years. Overall knowledge of ASD was very poor as only 3(1.3%) had good knowledge. Overall, 122(53%) usually had negative experience of parenting a child with ASD (enacted stigma), mothers (17.1%) more than fathers (9.1%). Majority 192(83.5%) internalized stigma. There was a low–moderate correlation between ‘enacted’ stigma and ‘internalized’ stigma (ρ- 0.400, p < 0.001). From in-depth interviews, many parents revealed that their child’s condition had negative effects on the family. Many also recounted negative experience of stigma. Conclusion Overall, parents of children with ASD had poor knowledge of the condition. Majority internalized stigma and this increases with negative treatment from others. Parents should be properly educated about ASD. Community-based education to increase awareness about ASD in addition to encouraging people to show empathy and reduce stigmatizing behaviour towards parents of children with ASD are recommended.

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Section: Discussionmentioning

confidence: 99%

Internalization of stigma among parents of children with autism spectrum disorder in Nigeria: a mixed method study

et al. 2021

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“…Every session had a ‘core topic’ and finished with ‘free sharing time’ during which parents were encouraged to ask or share topics of their choice. A brief overview of the sessions is provided in Table 1 , and a more detailed description of the intervention development is published elsewhere ( Lodder et al, 2020 ). The intervention manual is available from the author.…”

Section: Methodsmentioning

confidence: 99%

“…The results of this pilot trial showed that the participants who took part in SOLACE reported significant improvements in their mental health compared to those allocated to the control group. The underpinning theoretical development and intervention mechanisms of SOLACE, including its preliminary effectiveness in relation to all measured outcomes (courtesy and affiliate stigma; self-esteem; self-compassion, positive meaning of caregiving; self-blame; social support; and social isolation) are reported elsewhere ( Lodder et al, 2019b , Lodder et al, 2020 ).…”

Section: Introductionmentioning

confidence: 99%

Using a blended format (videoconference and face to face) to deliver a group psychosocial intervention to parents of autistic children

Lodder

Papadopoulos

Randhawa

2020

Internet Interventions

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Background Parents and carers of autistic children report poor mental health. Autism stigma is a strong contributing factor to poor parental mental health, yet there are currently no interventions available that are evidenced to improve parents' mental health in part through increasing resilience to stigma. Childcare and travel are well known barriers to attendance and attrition rates for this population are high. Methods A blended format psychosocial group support intervention was developed with the aim to improve parental mental health. Three sessions were delivered face to face, and five sessions via videoconference. A secret Facebook group was set up to support the intervention and increase retention rates. Mixed methods were used to assess the feasibility and acceptability of this mode of delivery for both the facilitator and service users. Attendance rates, fidelity and implementation issues are discussed. A qualitative focus group was conducted ( n = 9) to explore the acceptability to the participants. Framework analysis was used to analyse the findings. Results Attendance rates were high with the online sessions having significantly higher attendance rates than the face to face sessions. The findings of the qualitative evaluation suggest that participants are positive about videoconferencing for a group support intervention. The facilitator reported sound quality, background distractions and late arrivals as challenges; the participants on the other hand, reported that the benefits far outweighed the negatives. Suggestions for improvement are made. Conclusions The results suggest that videoconference is a well-received method to provide a group support intervention to parents. Only preliminary conclusions can be drawn, owing to the small sample size.

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“…Interventions that encourage and provide opportunities for physical, sensory and emotional regulation (e.g., sensory integration therapy, Randell et al, 2019 ) are compatible with this stance. Interventions can promote an understanding of autism and neurodiversity in people in the child's world, such as caregivers (e.g., EMPOWER-ASD intervention, 2 Systemic Autism-related Family Enabling intervention, McKenzie et al, 2019 ; SOLACE programme, Lodder et al, 2020 ), and education professionals and peers (e.g., Learning about Neurodiversity at School project 3 ). These interventions also support non-autistic people to build resilience, develop a positive philosophy toward the autistic child, and to build relationships in a respectful, supportive and harmonious manner.…”

Section: Implications For Early Autism Interventionmentioning

confidence: 99%

Autistic Self-Advocacy and the Neurodiversity Movement: Implications for Autism Early Intervention Research and Practice

et al. 2021

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The growth of autistic self-advocacy and the neurodiversity movement has brought about new ethical, theoretical and ideological debates within autism theory, research and practice. These debates have had genuine impact within some areas of autism research but their influence is less evident within early intervention research. In this paper, we argue that all autism intervention stakeholders need to understand and actively engage with the views of autistic people and with neurodiversity as a concept and movement. In so doing, intervention researchers and practitioners are required to move away from a normative agenda and pay diligence to environmental goodness-of-fit, autistic developmental trajectories, internal drivers and experiences, and autistic prioritized intervention targets. Autism intervention researchers must respond to these debates by reframing effectiveness, developing tools to measure autistic prioritized outcomes, and forming partnerships with autistic people. There is a pressing need for increased reflection and articulation around how intervention practices align with a neurodiversity framework and greater emphasis within intervention programmes on natural developmental processes, coping strategies, autonomy, and well-being.

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SOLACE: A Psychosocial Stigma Protection Intervention to Improve the Mental Health of Parents of Autistic Children—A Feasibility Randomised Controlled Trial

Cited by 19 publications

References 87 publications

Internalization of stigma among parents of children with autism spectrum disorder in Nigeria: a mixed method study

Internalization of stigma among parents of children with autism spectrum disorder in Nigeria: a mixed method study

Using a blended format (videoconference and face to face) to deliver a group psychosocial intervention to parents of autistic children

Autistic Self-Advocacy and the Neurodiversity Movement: Implications for Autism Early Intervention Research and Practice

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