The silent shot: An analysis of the origin, sustenance and implications of the MMR vaccine – autism rumour in the Somali diaspora in Sweden and beyond

ABSTRACT

This article traces the origin, sustenance and implications of a persistent rumour that is responsible for low measles mumps and rubella (MMR) vaccination uptake in the Somali diaspora in a number of countries across the globe. The rumour stipulates that the MMR vaccine – the silent shot – causes autism spectrum disorder (ASD). Although the association between MMR and ASD is non-causal, and various public health initiatives have promoted health information campaigns, the rumour continues to circulate in the Somali diaspora in many countries, including Sweden. This paper shows that there are valid reasons for this. The findings from this paper draw on a systematic scoping review and qualitative interview data from Sweden. The results show that the Somali community experiences higher than average rates of ASD compared to the general population. Moreover, ASD does not exist in the Somali language or their home country, is considered a Western disease that only affects Somali children in the diaspora, and is a highly stigmatised disease. Also, the Somali diaspora has had negative experiences with ASD diagnosis and care. The rumour has been sustained by the absence of an answer to their ASD fear and through active diaspora networks on social media. The network that surrounds the rumour has arguably further helped to create an epistemic community for a community whose concerns have been silenced.

KEYWORDS:

• Vaccine confidence
• rumours
• MMR
• ASD
• Somali diaspora
• Sweden

Introduction

In 1998, Andrew Wakefield and colleagues (Wakefield et al., 1998) published a paper in the Lancet, which raised concerns that the measles, mumps and rubella (MMR) vaccine may predispose children to behavioural regression and developmental disorders. Despite the small sample size (n = 12), the uncontrolled design, and the speculative nature of the findings, the paper received wide publicity raising concerns about the link between MMR and autism spectrum disorder (ASD). Consequently, MMR vaccination rates began to drop due to parents’ fear over the assumed risk of ASD following vaccination of their child (DeStefano & Chen, 1999). After the publication of the study, several epidemiological studies were conducted to investigate the association between the MMR vaccine and ASD (Dales et al., 2001; Taylor et al., 1999). Those studies refuted an association between the vaccination and the disease and concluded that it was rather the temporal association of the timing of the MMR vaccination and the onset of ASD symptoms than a causal association between the two (Dales et al., 2001; Taylor et al., 1999). The Lancet retracted Wakefield and colleagues’ paper in 2010, admitting its limitations and highlighting ethical misconduct.

Despite the scientifically refuted association and the disgracing of Wakefield, the MMR – ASD association continues to raise concerns for parents. Moreover, for some parents, it serves as an explanation for the cause of their child’s ASD. For example, the Children’s Health Defence Association based in the United States, with Robert F. Kennedy Jr as Chairman of the board collates theories and studies that sustain the association between MMR and ASD (Childrens Health Defence, 2022).

Autism spectrum disorder remains a poorly understood disease. Some evidence has established an association between socioeconomic status and ASD prevalence (Durkin et al., 2010). However, causal mechanism and confounding factors may be at play. Moreover, there are a number of studies that describe an association between ASD and migration background. For example, a study from Sweden described an association between parental migration status and ASD of the child, highlighting the possibility that parental exposure to environmental factors may play a role in the disease aetiology (Magnusson et al., 2012). A further explanation for the association between ASD and maternal migration status has been linked to epigenetic changes following a stressful experience (Crafa & Warfa, 2015). Yet, despite this evidence, the association between migration background and ASD requires further research.

Concerns over the MMR vaccine have been marked in the Somali diaspora across the globe. The Somali diaspora constitute some of the largest migrant communities in several countries. The MMR vaccine coverage has been low in the Somali community in Norway (Jenness et al., 2021), Sweden (Jama et al., 2018; Jama et al., 2019), Australia (Paxton et al., 2011; Skull et al., 2008), the UK (Tomlinson & Redwood, 2013) and the USA (Bahta & Ashkir, 2015; Christianson et al., 2020; Gahr et al., 2014; Wolf et al., 2016; Wolff & Madlon-Kay, 2014). Measles outbreaks have been reported in some of these countries (Banerjee et al., 2020; Gahr et al., 2014). An investigation into perceptions on the MMR vaccine revealed that Somali parents living in these countries fear that it will cause ASD in their children. For example, in Sweden, both parents and healthcare workers have raised continuous concerns about this rumour (Jama et al., 2018; Jama et al., 2019). Despite some success of information campaigns implemented over the past few years, the MMR – ASD rumour remains stuck (Jama et al., 2018).

The conceptual framework that guides this paper draws on Larson’s concern with the origin and sustenance of vaccine rumours (Larson, 2020). She argues that rather than debunking rumours we should understand them. She argues, ‘debunking rumours will not fix questioning and convictions. It is too late for that. What is needed is a more fundamental change around the fertile ground which is fuelling the concerns, rumours and heated debates’ (Larson, 2020). In order to understand a rumour, we need to understand the web in which it is caught. In her words: ‘Rumours live inside the webs of daily life, embellished by culture, politics, personal experiences, beliefs and histories’ (Larson, 2020). Rumours can be very significant because drawing from its Latin origin rumorem (noise) they can make substantial noise and cause concern (Larson, 2020). Rumours are known to thrive during times of fear and uncertainty. Larson (2020) describes how vaccine decision making is a breeding ground for rumours because it involves the balance and benefit of risk coupled with fear and uncertainty. Thus, because vaccines are not risk free they constitute a fertile breeding ground for rumours. Larson highlights that rumours are ‘not moles to be whacked, but signals that call for a deeper understanding not only about why they came about but why they stick’ (Larson, 2020). From this conceptual premise, this paper analyses the origin and sustenance of the MMR – ASD rumour in the Somali diaspora in Sweden and with reference to existing literature. The data analysis further revealed the importance of describing the implications of a rumour.

Materials and methods

This is a qualitative study that draws on three data sources: a literature review, qualitative interview data and observations from the data collection process.

Study setting

Globally, there is at least 15% (1.5 million people) of the Somali population living outside of Somalia (Kleist, 2018). Sweden has the largest Somali migrant community in Scandinavia with many living in the Stockholm suburbs of Rinkeby and Tensta (Kleist, 2018). There are 64,477 Somali-born migrants living in Sweden (Centralbyrån, 2022) and over 95,000 Somalis overall including descendants and naturalised citizens (Kleist, 2018). According the UNHCR, there were 8307 refugees and 382 asylums seekers from Somalia in Sweden in 2022 (UNHCR., 2022). The foreign-born populations in Sweden, although a heterogeneous population, has worse reported health outcomes than the domestic-born population (Folkhälsomyndigheten., 2019). Among migrants and refugees being overweight, diabetes, high blood pressure, TB and Hep B are more commonly reported. There are also reports of poorer self-assessed mental health, and a lower likelihood to access mental health services (Osman et al., 2021). Moreover, a study of comorbidities and health related quality of life (HQoL) of Somali women found that they had low comorbidities, but high rates of vitamin D deficiency and lower physical and mental HQoL than the general population (Demeke et al., 2019). Somali women in Sweden further experience challenges regarding pre and antenatal care (Ahrne et al., 2019). Overall, Somali migrants have limited health literacy, which may impact their ability to access, appraise or understand health information (Wångdahl et al., 2014).

Data collection

Literature search

A systematic search of the literature was conducted to collate evidence that discusses either MMR and/or ASD/autism in the Somali diaspora. A literature search was performed in the following databases: Medline (Ovid), Cinahl(Ebsco), PsycINFO(Ebsco), Web of Science(Clarivate Analytics), Sociological Abstracts(ProQuest) and a complementary search was performed in Publicly Available Content Database(ProQuest. The last search was conducted on 18 October 2022. The search strategy was developed in Medline (Ovid) in collaboration with two librarians at the Karolinska Institutet University Library. For each search concept, Medical Subject Headings (MeSH-terms) and free text terms were identified. The search was then translated into the other databases. No language restriction was applied. Databases were searched from inception. The strategies were peer reviewed by another librarian at Karolinska Institute prior to execution. De-duplication was done using the method described by Bramer et al Bramer et al. (2017). One final, extra step was added to compare DOIs. The search revealed 1105 articles. Screening of articles by two researchers, led to the inclusion of 47 papers. Fourteen articles discussed the risk of individuals of Somali background to obtain an ASD diagnosis; four articles discussed the experience of Somali diaspora in accessing and actively participating in ASD services; 16 articles discussed the Somali experience and perception of ASD diagnosis; and seven articles discussed vaccine sentiments linked to ASD.

Qualitative interviews

Nine in-depth interviews with 13 participants were conducted by two Somali speakers in two Somali communities in Stockholm and in Malmö, Sweden between May and December 2022. One of the interviews was a group interview and the remainder were individual interviews. While the intention was a purposive sampling approach with maximum variation (mothers, fathers, different age groups), this was not possible in practice. Recruitment was very difficult and many participants who met the inclusion criteria declined participating in the study. This may in part be due to a growing concern of ethnically diverse community’s mistrust in authorities described elsewhere (Nilsson & Landstedt, 2022). Initially, recruitment efforts were made by sharing flyers in health centres and social spaces as well as on social media. Recruitment was successful using a convenience and snowball sampling approach, whereby two Somali research assistants managed to identify some key people in the community who then recommended someone else. Inclusion criteria included Somali speaking individuals who have children or are expecting children and who have concerns about vaccines. Interviews were conducted in a private space. They lasted between 30 minutes and 1 hour. The aim of the study as well as rights of participants was described in informed consent forms. Informed oral consent was obtained. There were 11 women; approximate age range was 20–50 years; and 2 men in their thirties. Levels of education varied significantly, yet detailed information on demographic information was omitted in the interest of maintaining trust. The interview guide was developed by the research team based on literature research and findings from the literature review. Themes included general questions about vaccine sentiments, exploration of perceptions of the MMR vaccine rumour (perceptions on the rumour, source of the rumour), and exploration of networks where information about vaccines are shared and spread.

Observation notes

Recruitment of participants for this study was challenging. One research assistant (KA) took extensive notes of the recruitment process, describing recruitment challenges and taking notes on her conversations with Somali mothers in public spaces while trying to recruit them (so-called open preschool day). During efforts to recruit participants, the research assistant gained important insights into participants concerns about research on the suggested topic. These insights were transcribed as notes.

Data analysis

Interview data was translated and transcribed verbatim to English. A sample of back translation was done for quality control. All three data sources (Interview data, observation notes and literature) were imported to NVivo 12.0 and systematically analysed with the research aim in mind. Reflexive thematic analysis was used to guide the analysis process (Braun & Clarke, 2019). Coding of research materials was a mix of deductive and inductive approach. For example, the two main themes origin of the rumour and sustenance of the rumour were inspired by the theoretical lens used in this study that is Larson’s theoretical work on rumours. Thereafter, sub-categories were created within those themes. The theme ‘implications of the rumour’ was added because it was a strong theme that could be created from the data. Coding was checked by an additional researcher KA for improved quality.

Ethics

This research project obtained ethical approval from the Swedish Ethics Research Board (Dnr 2021-06381-01). Informed oral consent was obtained and anonymity of participants ensured. Oral consent was preferred by participants due to participants’ hesitation to engage with this research project. There were also no demographic information sheets as some participants were hesitant to providing too much information about themselves.

Reflexivity

In all qualitative research, it is important to reflect on the positionality of the researchers involved in the project and how that may have influenced research findings. Two female Somali speaking research assistants (one being the second author) who are experienced and were well briefed collected the data on the objectives of the project and research methods. The data collectors are educated at postgraduate level and live in the respective communities. Since they are part of the study community, they could influence recruitment efforts and data collection. The insider perspective may lend itself to bias, yet; on the other hand, it was arguably the only way to gain trust. Conceptualisation of the study and data analysis was conducted by the first author. The first author is a white female social scientist employed at a Swedish University. Given that background and the sensitive research question, it would not have been advisable to collect data in the study communities. To reflect on the team’s position during data collection, we held regular meetings that allowed sharing and discussing concerns, particularly with regards to recruitment. In terms of data analysis, this was done by the first author. Parts of the coding were conducted by a second coder to ensure consistency. To further strengthen trustworthiness, the findings from the qualitative data analysis are also triangulated by research from the literature review.

Findings

This section presents the analysed data from the literature review that included 46 articles and 9 interviews with 13 participants from the Somali diaspora in Sweden.

Origin of the rumour

Autism spectrum disorder appeared to the Somali community as a new disease that did not previously exist in Somalia and exists in the diaspora only (Miller-Gairy & Mofya, 2015). The MMR – ASD rumour originated in a context where the Somali community was faced with ASD as a completely new disease, following migration to their new homes. Both literature from the literature review and interview data demonstrate clearly that the Somali diaspora is faced with a profound fear of their children being diagnosed with ASD. To add to that, there is no word for ASD in the Somali language (Decoteau, 2017; Ellen Selman et al., 2018; Miller-Gairy & Mofya, 2015), further supporting the notion that ASD emerged following migration. Parents interviewed in this study, describe fear of the disease and maintain that this disease did not exist in their countries of origin:

I am afraid that my child would become disabled … A lot of Somali children have autism. But in Somalia we didn’t have autism and until now we don’t know why children are getting autism. (GI1, Somali mothers)

Similarly, parents described that children were happier and healthier in Somalia and how the new Western world brought upon new diseases like ADHD (Attention deficit hyperactivity disorder) and ASD. In the words of a parent:

We used to let the children play outside and burn off their energy [in Somalia]. We didn’t have silent children, and this is something you would be able to see right away without diagnosis. So, we are sure we didn’t have silent children [in Somalia]. (IDI2, Somali mother)

Decoteau’s research makes a similar finding, where she shows that Somali parents in Toronto seek an alternative explanation to the cause of ASD. Parents maintain that autism is a Western disease brought upon by the diet and medications found in North America. This includes genetically modified foods and antibiotics in food production (Decoteau, 2017; Decoteau, 2021).

To add to that, not only was ASD a new disease observed in the community but there is some evidence to suggest that the Somali community is more affected by ASD than other communities (Abdullahi et al., 2018; Barnevik-Olsson et al., 2010; Hewitt et al., 2016; Kawa et al., 2017; Morinaga et al., 2021). While the evidence is not conclusive and further studies are needed, there appears to be a higher prevalence of ADHD and ASD in the Somali community. The notion that the Somali community is more strongly affected than other communities was well-established by members of the community: ‘Many Somali children have autism. We have it the most. In almost every Somali family, one child has autism, only a few don’t. Also, ADHD. And we don’t know why’ (IDI-1, Somali mother). All study participants shared ASD stories in the community where a family member, neighbours and friends have been affected by ASD. Many stories involved the narrative of a child being active and starting to speak and following the MMR vaccine stopped talking and subsequently developed symptoms of autism:

A lady that I listened to told me about her son, he was at first speaking but when he was vaccinated [MMR vaccine], he completely stopped. He was 1 and 8 months when she vaccinated him. He used to say mom and dad but after the vaccine he stopped speaking, not even a word. That’s why we call it the silent shot. (GI-1, Somali mother).

As Larson (2020) has argued, rumours thrive in a context of fear. In the Somali diaspora across the world, Somalis were faced with a new disease for which their language did not have a word. They also arguably faced an unexplained higher prevalence of ASD in their communities, for which an explanation needed to be sought. Both these reasons created a breeding ground for the MMR – ASD rumour to thrive.

Sustenance of the rumour

Rumours do not survive if they are not sustained. According to Larson, ‘rumours need gardening, perhaps weeding, but cycles of rumouring are important to reinforce social networks, share sentiments, and make sense of unknowns … It is an important medium for negotiating reason and emotion in the face of uncertainty’ (Larson, 2020). The anxiety over an ASD and ADHD diagnosis of Somali children has not disappeared from the Somali community. Several factors have arguably accentuated and sustained fears and uncertainty around the MMR – ASD rumour.

Firstly, there is evidence of delay of diagnosis and Somali parents’ hardship during the diagnosis and interventions to support autistic children. These negative experiences have arguably strengthened the MMR – ASD belief. Evidence from Australia and USA demonstrates a delay in access to diagnosis and care arguably linked to resistance of diagnosis (Abdullahi et al., 2017; Hall-Lande et al., 2021; Lin & Yu, 2015). Moreover, a study from the US describe how Somali parents disagree with the learning approach that was prescribed for their autistic child and describe that they are not well-informed about how to support their autistic child and describe experience of racism by the school (Sweeney, 2019). Further studies from the UK, show that Somali parents lacked support in navigating a complex health system, understanding the diagnosis and experiencing poor quality care, which did not incorporate their perception of the disease (Aabe et al., 2019; Fox et al., 2017). Further research from the UK shows that Somali parents have very low expectations in the services provided for their autistic children because their culture is not understood (Miller-Gairy & Mofya, 2015). A study with similar findings from the US, showed that Somali parents experienced cultural incompetence and lack of support when navigating the US healthcare system (Geremaw, 2022).

The findings from the interviews in this study further supported this claim. Parents felt misunderstood and poorly treated during the diagnosis and treatment of their autistic child. In the words of a parent:

We got the diagnose [ASD] when he was 3 years, I argued with them because I wanted to understand why. He was fine before. I had the vaccine in my head, it was because of it. But they didn’t listen to me. They didn’t want to look bad. (IDI-8, Somali mother)

A second reason that sustains the MMR-ASD rumour is due to the absence of an explanation for high numbers of ASD in the Somali community. The interview data highlighted strongly that the ASD fear in the Somali community in Sweden is not being addressed. In the words of a parent:

They [health care professionals] didn’t conduct any research, and researchers didn’t come with any recommendation on how to reduce the risk of autism in our community … If all of these was made more would have vaccinated their children. (IDI2 – Somali mother)

Despite this belief, there has been some research investigating the association between ASD and the Somali community. Some studies have investigated vitamin D deficiency as a possible explanation, yet more research is needed to conclude this association (Eyles, 2010; Fernell et al., 2010; Fernell et al., 2015; Fernell et al., 2015; Lerner et al., 2018). This research seems to have trickled down to the Somali community. One participant highlighted that MMR may not be the cause of ASD but instead vitamin D deficiency. In the words of this participant:

I thought that before it was only the vaccine [MMR] that caused autism. But now we have found out that there are other things that could cause autism such as vitamin deficiency for example vitamin D deficiency. But this is something we found out later, the pregnant women need sun and that the midwife doesn’t really know or examine properly to see if there are any nutrient deficiencies. (IDI-5 – Somali mother)

This arguably shows that alternative explanations for autism could possibly break the MMR-ASD rumour.

A third factor that contributes to the sustenance of the MMR – ASD rumour is linked to the finding that ASD is highly stigmatised in the Somali community. Several studies from the literature review describe deep stigmatisation of mental illness and ASD in the Somali community (Ellen Selman et al., 2018; Linney et al., 2020; Miller-Gairy & Mofya, 2015, 2016). For example, Ellen Selman et al. (2018) describe that children with ASD are labelled as ‘sick’, ‘naughty’ and parents often blamed for failing to control them, leading to parents isolation from the community. The findings from this study further support this, in the words of a Somali mother:

Most Somali don’t even talk about this [ASD]. They hide it and think their child is very active. They won’t express it [ASD], which is bad because the child could get help very early. We shouldn’t hide it. (IDI4 – Somali mother)

Using the MMR vaccine as an explanation for the disease arguably helps explain the occurrence of a highly stigmatised disease and unburdens the parents from stigma and blame.

Moreover, the MMR-ASD rumour has arguably been sustained because the Somali community has created an epistemic community around their interpretation of causes of the disease, upheld by strong diaspora networks and social media networks. Decoteau’s research shows that the Somalis’ pathway to group formation is inseparable from their experiences of exclusion due to race and nationality (Decoteau, 2017). She argues that the Somali diaspora in Toronto has forged an embodied health movement based on the politicised collective illness identity as a result of their experiences of forced migration and racial exclusion, as well as their cultural ontologies of health (Decoteau, 2017). In other words, the more excluded a group feels from society, the stronger their epistemic community or their beliefs about a matter become.

The qualitative interview data further adds to the notion of an active social media network that engages with vaccine sentiments in Somali language. Several interviewees make reference to a diaspora community in North America that share information on social media in the Somali language. There is also a reference made to a young woman on TikTok who gets a lot of attention from young people when describing how the causes of her disability is linked to the MMR vaccine:

A woman I know that lives in the US. I have heard about it on different social media platforms such as Facebook, Twitter, Instagram. She has shared her experience online about this vaccine [MMR vaccine]. She became paralyzed in one leg after taking this vaccine. (IDI4 – Somali mother)

The reference to this woman is made by two interviewees.

What further sustains the MMR – ASD rumour is the legitimisation of the link by organisations and platforms that claim to be scientific. Several interviewees consider themselves well informed and use scientific sources as their basis for their beliefs. Links are often made to the fact that there are scientific studies that proof the link between MMR and ASD (Children's Health Defense, 2023). Whilst this has been rejected by the scientific community, there is an alternative community that claims to have obtained a scientific link (Children's Health Defense, 2023). The existence of such platforms and the continuous production of such knowledge further sustains the MMR – ASD rumour because it claims to have a scientific basis.

Implications of the rumour

Whilst Larson (2020) has placed much emphasis on the origin and context in which a rumour emerges, the analysis of this data and the literature review further suggests that it is relevant to understand the implications of a rumour. An analysis of the implications is important because it can give indication as to whether and how a rumour should be actively countered. The analysis of the MMR – ASD rumour has several implications, some which are concerning.

Several interviewees strongly support childhood vaccines and they vaccinated their children following the Swedish vaccination schedule. Moreover, despite the fear of the MMR vaccine, several parents still vaccinate their children but they delay the vaccine and believe that to be the most appropriate way of managing their fears. In the words of a participant:

My two youngest I vaccinated them at 2 years, when they started speaking properly. I decided to not give my children the vaccine before they could speak, because of the problem people shared. (IDI3 – Somali mother).

Getting the option to delay by the children’s health centre was appreciated by Somali mothers and arguably reinforces trust with the healthcare system: ‘They [the children’s health centre] told me that I could vaccinate them or if I wanted to wait until they could speak, I could. They said I had the choice and could choose freely.’. (IDI9 – Somali mother). From this observation, it appears important to understand the vaccination gap in more detail. If delaying the vaccine helps address the MMR – ASD concern, perhaps this is a window of opportunity to address the rumour.

Yet, despite strong confidence in essential childhood vaccines, the MMR – ASD rumour in the Somali community affects vaccine beliefs for new vaccines. Several interview participants expressed vaccine hesitancy or refusal for the human papilloma virus vaccine (HPV) and the COVID-19 vaccine. In the words of a participant:

I heard from a relative about the [HPV] vaccine. I was wondering if I should vaccinate my daughter and she told me not to. Some take it and some don’t, it’s about how much you trust these new vaccines. (IDI4 – Somali mother)

Moreover, interview participants describe that the rumour encourages own research by talking to individuals they trust. In the words of a participant:

They [the children’s healthcare centre] will just tell me what they are instructed. They will tell me the recommendations, which they are instructed to say. I would rather talk to parents that don’t vaccinate their children to hear why [they don’t vaccinate]. (IDI9 – Somali mother).

Participants further describe that they joined Facebook groups and WhatsApp groups to learn more about the rumour they heard:

So, I had these concerns [about the MMR – ASD rumour] and now I am a part of a Facebook group where people have shared the side effects they have gotten from vaccines. It is a Facebook group were real people write their problems, a certain amount of information can be wrong. But I don’t thing 20-30 thousands of people are lying about their experience or that they are exaggerating. I think it’s a lot of information that is accurate. (IDI8 – Somali woman])

The statement further indicates some reliance on the validity of the information on social media sites or networks.

Some participants further describe that the way the rumour was addressed by healthcare providers effected their trust in the health system. Further encouraging the search for own information and resources.

Moreover, some participants describe having received incomplete information when vaccinating their child: ‘They just told me it’s a good vaccine. If I would have known the consequences, I would not have given my son the vaccine’ (IDI-8, Somali mother)

To add to that, the MMR – ASD rumour has arguably created tensions between the community and researchers that need further investigation. Our observation notes include descriptions of the challenges during the recruitment of participants for this study. Many Somali people declined participation in this study and they provided a clear explanation. Some people felt they have previously been misunderstood and misrepresented by researchers. One person who declined the study wrote that ‘this is not the research question we are interested in’. Some further added that, ‘you write what you want anyway’. This further shows that the MMR – ASD rumour has arguably been misunderstood by researchers and health professionals who have often highlighted issues of misinformation and false beliefs in that community. Although, this finding is not conclusive, it is an important observation that warrants further careful investigation.

Implications of findings for global public health

The findings from this research have several implications for Global Public Health. This study provides context-specific knowledge from Sweden – that can possibly be generalised to the wider Somali diaspora globally. It adds to Larson (2020) argument that highlights the importance of understanding vaccine concerns more thoroughly rather than merely focusing on debunking myths or rumours. This study focused on the MMR – ASD rumour but findings on the importance of origin, sustenance and implication of rumour may be of relevance to other vaccine-related rumours. Moreover, the findings presented in this study can help inform strategies for addressing the rumours by frontline workers. Previous research has described healthcare worker’s challenges in facing the MMR – ASD vaccine rumour in Sweden (Jama et al., 2019). An improved understanding of the origin of the rumour may help frontline workers engage with the rumour more empathetically. This is important because previous research has described low uptake and concerns about vaccines other than MMR among the Somali diaspora in Sweden and the Netherlands (Jama et al., 2019; Salad et al., 2015). The paper also possibly adds to the discussion on diagnosing complex behavioural problems such as ASD and ADHD in culturally diverse and complex settings, as has been described elsewhere (Batstra & Frances, 2012; Batstra et al., 2012). To engage with the alienation that parents describe in the findings, efforts and ways of understanding alternative interpretations and views of health and illness may need repositioning in light of growing ethnic and cultural diversity in many high-income settings like Sweden.

The findings from this paper are also relevant for social services in Sweden. As described elsewhere, there is a current strong distrust towards social services and government authorities (Nilsson & Landstedt, 2022). The findings from this research highlight this distrust, since researchers were largely associated with public authorities. More efforts and research should go into finding effective strategies to rebuild this trust. Since low trust can effect communities access to all public services ultimately leading to further alienation and poorer health outcomes among migrant populations in comparison to the general population. The findings on distrust and challenges in engaging the research community may also be of relevance to researchers working on migration and health-related topics. Innovative co-design approach are needed to increase trust between researchers and communities as described elsewhere (Kilander et al., 2023). One such strategy could be the involvement of the community in formulating research aims.

Strengths and limitations

The strengths of this study lie in a thorough literature review that was triangulated with in-depth interview data and observation notes. The combination of the sources allows analysing the research question from a rich data source. The findings highlight a different perspective on understanding the persistent MMR-ASD rumour association than previously described and summarises existing knowledge on this question. There are some limitations to this study. Although this study draws on qualitative data and thus does not aim to achieve broad generalisations, there may be some limitations to the findings due to the sample size and limited variation of participants. Although, repetition of data occurred, the findings could have been strengthened with additional interviews and with different members of the community (e.g. more men). However, as described above, recruitment for this study was extremely difficult. The team found that recruitment was difficult because of limited trust in researchers on this particular topic, which in itself is a finding of this study. Recruitment issues could have perhaps been improved if this project would have been more large scale, with more funding to embed and fund a Somali research assistant in the project more long-term rather than merely engaging assistants for data collection. However, this was not possible due to resource constraints. Despite rigorous methods, there may be gaps in the literature review.

Conclusion

To conclude, this paper shows that the analysis of the MMR – ASD rumour in the Somali community provides insight into the origins, sustenance and implications of the rumour. These finding have implications for public health. It shows that an analysis of a specific rumour reveals that people are not merely misinformed but instead have reasonable reasons that sustain the belief of a causal association between MMR and ASD. Thus, information campaigns to address or debunk the link between MMR and ASD may simply not be enough. Instead, engagement with parent’s deep fear of ASD and the way in which they receive support when a child is diagnosed is of foremost importance. Moreover, research into why ASD is so prevalent in the Somali community is very important and constitutes the question that the Somali community want addressing. Building on research that explain this phenomenon will arguably allow dissociating the deeply engrained association that is made between MMR – ASD. Moreover, the importance of keeping people’s trust and addressing the Somali community’s fading confidence in mainstream science is of urgent importance. Lastly, ensuring an inclusive approach where the community feels in control of what is being studied and how they are being studied was highlighted in this study. The field research showed resistance and low confidence in the research project, specifically in relation to the vaccination question. It is crucial to listen to communities, involve them in research and allow them to be active participants who co-design public health interventions and research questions and own them.

Acknowledgements

We would like to thank Jonas Pettersson and Emma-Lotta Säätelä from Karolinska Institute library for conducting the literature search. We would also like to thank the participants who participated in this study. Also big thanks to Khadija Abunnaja (who supported recruitment and conducted coding checks) and Zarah Abdi for their efforts in recruiting and collecting the data. Also, thanks to Elisa Gobbo reviewed sections of this manuscript.

Disclosure statement

No potential conflict of interest was reported by the authors.

Data availability statement

Part of the data is available upon reasonable request.

Additional information

Funding

Sibylle Herzig van Wees has received a PostDoc grant from FORTE (2021-01299) to work on vaccine confidence in Sweden. Samira Dini was also funded by this grant.