Improving Care Provision For Individuals With Autism Through Action Research Essay.

Title: Identification of cause of poor care provision to individuals with autism and its improvement through action research  

Theme: Valuing and promoting diversity, difference and inclusion

Autism Spectrum Disorder (ASD) is defined as a complicated, neurodevelopmental disorder that is associated with problems in the communication behaviour of an individual. Incidence of Autism is associated with implications on a range of symptoms and skills and can impact the overall navigation of daily life for an affected individual (Akhter et al. 2018). Many individuals now see Autism as a classification under “neurodivergence”, where the goal is to understand the multiple forms of brain functioning and reduce the stigma that is prevalent around autism incidence (Pearson and Rose 2021). The three major core deficits that are associated with Autism include poor communication, difficulty in social interactions and repetitive and restrictive behavioural patterns (Brigido et al. 2021). While the goal of services and care units is to ensure the inclusion of diversity and promotion of holistic care and support, the same is often observed in application in the care facilities. Research indicates that individuals with Autism have higher physical and mental healthcare needs and health costs (Pearson and Rose 2021). Further, they also have a higher rate of hospitalisation and relatively poor quality of care and reduced life expectancy in comparison to individuals who do not have Autism. This indicates that the care service for patients with Autism is substandard (Sharma et al. 2018). This report will provide a systematic analysis of the issue and develop an action plan in accordance with the same. The background of the problem will be identified for the need for the development of the action research and planning. The methodology used for conducting the research and its ethical aspects will also be included in this discussion. Further, a succinct description of the impact of the findings will also be presented in this report.  This report applies a quantitative research approach and identifies the perspectives of the care service providers towards autism care and develops the importance of future research for education of the carers regarding autism to enhance inclusion of the affected individuals. 

The primary aim of the study was to identify the cause of poor treatment of individuals with autism in the care facility and to develop an intervention for minimisation of the identified cause of poor care.

The research question for this study will be: What are the cause of poor treatment of individuals with autism in the care facility and to develop means for its management?

Research aim and objectives

This study was completed by focussing on the following research objectives:

Objective 1: Rigorous analysis of literature associated with autism and discrepancies in the care.

Objective 2: Undertaking a systematic survey in a care facility to identify the cause.

Objective 3: Quantitative assessment of the survey and interpretation of its findings in alignment with the researched literature.

Objective 4: Development of an intervention action plan and its implementation.

Objective 5: Assessment of impact of developed intervention.

Over the past decade, the incidence of autism has risen significantly around the world, with a 78% increase in The United States alone (Lord et al. 2022). The access to the services and their impact on the well-being of the affected individuals is significant. The challenges that individuals with autism and their carers face are associated with several reasons. One of the prominent reasons is the complexity of the disorder itself. Management of autism requires both pharmacological and therapeutic behavioural interventions (Pearson and Rose 2021). Further, research indicates that people with autism are more likely to develop physical and developmental comorbidities. This demands a greater need for medications and healthcare management (Happé and Frith 2020). However, one of the primary challenges remains the lack of concrete evidence that can ensure effective improvement of individuals with the patients. People with autism generally experience poor quality of life in comparison to non-autistic individuals. In part, this is also associated with the stigma and prejudice that is prevalent in society regarding autism. The major stereotypical behaviours that are associated with autism include judgement and negative connotation, social isolation, discrimination, and rejection (Oakley, et al. 2021).

Incidence of autism is more common in males than in females. However, this claim is being questioned based on the research bias that has surrounded autism research (Rynkiewicz et al. 2019). The studies on autism have been associated with male participants. This has resulted in poor diagnosis and identification standards in women (Young et al. 2018).

The role of inclusion and promotion of competency in society is an integrated approach and demands improved competency and an empathetic approach to managing individuals with the disorder. Firstly, it is important to understand that autism is not a disease but a divergence in brain structure development (Gorczynski et al. 2021). It is for this reason that it is categorised as being a disorder falling in “neurodivergence” against the idea of “neurotypical” brain development, which is regarded as a more generalised form of brain function (Fletcher-Watson and Happé 2019). Stigma is regarded as one of the major complications associated with autism. It impacts the quality of life of the affected individuals as well as their families (Deguchi et al. 2021). Stigma results in subsiding the problems of individuals with autism in the care facilities and taking their care needs at a lower priority. Further, lack of acknowledgement of care needs and social and psychological support for individuals with autism is also associated with prevalent stigma and prejudice (Salleh et al. 2020).

Background and review of literature

Rationale for selection of this topic

To prevent the incidence of discrimination and stigma in the care facilities, it is also crucial to understand the actual cause of disparity and the stereotyped behaviour (Wasserman et al. 2019). Therefore, it is critical to develop an understanding of the cause to infer the nature of the consequence and also to remediate it with specific interventions (Highet 2017). Hence, this action research project aimed to address the same and identify the causes of poor care delivery for children with autism in a care facility and design an intervention for minimisation of the same.

A primary quantitative research approach was followed for the completion of this research. A quantitative approach for this research is suitable as it would help in quantitative analysis of the action and help in the effective assessment of the intervention applied (Younas et al. 2019). The quantitative method  for research was chosen for this study as it helps in the development of an analytical approach for the research. The benefit of using quantitative methods is associated with the application of structural tools and the use of an adequate sample size (Khosla 2021).

This research method is beneficial as it helps in the collection of reliable and accurate data for research. It also helps in the quick collection of data and provides greater scope for the analysis of the data (Gravetter and Forzano 2018). The quantitative research approach is objective and helps in the elimination of bias. Therefore, the use of this study approach will help in a systematic analysis of data and in reaching effective research outcomes. Further, the data that is generated from quantitative research can be generalised to a larger section of the population (Lee 2019).

This study will use the research that is based on conducting closed surveys. Surveys act as one of the most effective data collection tools and can be used for the collection of both quantitative and qualitative data, that is, a mixed methods study approach will be used. In this research, the survey was designed using simple questions for which the participants had to answer in “yes” or no”.

The closed questions were used for conducting the survey. The use of closed questions in a survey is beneficial because it helps in the easy and quick generation of evidence and also assists in obtaining measurable quantitative data for research (Bell 2022). It also helps the respondents understand the answer options and helps eliminate the questions that are not required for the research questions. The closed questions allow for quantifiable assessment and are thus beneficial for this research (Stockemer et al. 2019).

Rationale for selection of this topic

The interview was done in a systematic manner, and the details of the participants were kept anonymous. The data were recorded systematically and analysed for further inferences. Once the data was analysed and the root cause was identified, an interventional educational plan for care service providers was developed and shared with the care service providers. A second survey was then conducted to observe the changes for assessment of the intervention and development of future research.

Act, Observe, Reflect, and Plan approach of action research was used for completion of this action research project (Figure 1).

 

Figure 1: Action research approach used for completion of this project.

Research setting

The research was conducted in domiciliary care setting facility

Participants

The selection of participants in the study was done through purposive sampling. The purposive sampling method is applied when the research is intended only for a specific set of population (Bell and Waters 2018). This study identified ten participants, which were the care service providers in the domiciliary care setting facility. The characteristics to be included in this research were as follows:

1. Individuals who were care service providers to autistic individuals were included in the study.
2. Individuals aged above 18 were included in the study.
3. Individuals from all social and cultural groups were included in the study.  

Procedure of research

Participants were recruited for the study and were informed about the scope of study. A formal consent was collected for completion of the research. The participants were asked a series of questions that were closed questions and the answers were documented. The results of the survey question were then assessed and analysed to produce results. Once the results were analysed, an intervention program was developed to educate the care service providers who participated in the research. After the completion of the intervention, data was collected again and analysed for which further development needs to be placed and analysed.

The educational intervention was developed as a focused group discussion that helped in asserting the importance of identification of autism as a disorder and to reduce the stigma around it. The discussion was designed as a 30 minute weekly session conducted over a period of four weeks.

The evaluation of intervention was done by retaking of the survey and comparison of the results in terms of changes of perceptions regarding improved inclusion and competence development in the carers.

Collection of consent is one of the primary responsibilities of the researcher (Cooker and Davies 2004). An informed consent is defined as an agreement for participation in an activity in complete acknowledgement of the risks and the benefits of participation (Andrews 2019). For this research, an informed consent was collected from all the participants regarding the study. The participants were informed that this research is being conducted in partial fulfilment of the university course (Stockemer et al. 2019). Further, it was ensured that no personal information of the participants was included in the research. The participants had the agency and control to discontinue their participation in the research at any given point of time.

Methods and skills for action research

This report declares that the research completed in this action research project is in alignment with the ethics guidelines of the university.

A total of ten participants were included in this study of which six individuals identified as males and four as females (Figure 2a). The age range of participants was between 28 years to 48 years with average age of 37 years. The age distribution of the participants that were included in the study has been summarised in figure 2b

 

Figure 2: Sex ratio of participants who were involved in this research.

 

Figure 2b: Age distribution of participants 

The findings of the survey before the application of the intervention were as follows:

Survey question: Do you think people with autism have more complex needs than those who do not have autism?

40% of the respondents agreed that individuals with autism have more diverse and complicated needs than those who do not have autism before the application of intervention. After the application of the education program, 80% of individuals agreed that they think that individual with autism require more comprehensive care and support than a non-autistic individual (Figure 3).  

 

Figure 3: Response of participants to if they think individuals with autism have special needs. 

Survey question: Do you think it is important to give prioritised care to other individuals as autistic individuals have more complex needs unless it is critical and need of medical attention?  

The findings of this result indicate that 70% of participants indicated they would not prioritise care of another patient over an autistic individual. After application of the intervention, it was realised that 100% of participants agreed that they would not prioritise the care of another patient over an autistic individual (Figure 4). 

 

Figure 4: Response of participants to if they think they would not prioritise care of another patient over an autistic individual. 

Survey question: Do you think you have sufficient knowledge about autism?  

Before the application of intervention, 30% of participants used to believe that they have sufficient knowledge regarding autism. This number increased to 70% after the application of intervention that was aimed as an educational program in the facility (Figure 5).

 

Figure 5: Response of participants to if they think they have sufficient knowledge about autism. 

Survey question: Do you know about the challenges that people with autism face in accessing care and services?  

Before the application of intervention 70% of participants indicated that they do not have sufficient knowledge and understanding about the challenges faced by the autistic individuals. This decreased to 20% after application of the suitable intervention (Figure 6).

 

Figure 6: Response of participants to if they think they know about the challenges that people with autism face in accessing care and services. 

Survey question: Is there a need to develop an inclusion policy and systematic changes in the current structure to increase the inclusivity of autistic individuals?  

Development of inclusion policy and need of its application was realised by 40% of carers before the application of intervention. This number increased to 70% after the effective application of educational intervention (Figure 7). 

 

Figure 7: Response of participants to if they think there is a need to develop an inclusion policy and systematic changes in the care service structure to enhance the inclusivity of the autistic individuals. 

Survey question: Do you think people with autism are difficult to provide care to? 

Before application of intervention, 80% of individuals who used to provide care felt that people with autism require more intensive care and thus providing care to them can be more difficult. After the application of intervention, 60% of the participants felt that it is difficult to provide care to individuals with autism (Figure 8). 

 

Figure 8: Response of participants to if they think that autistic individuals are difficult to provide care to in comparison to the non-autistic individuals. 

Survey question: Is autism a disease? 

90% of participants held the notion that autism is a disease that affects the individuals. However, this notion was changed with application of intervention where only 20% identified autism as a disease after application of the educational intervention (Figure 9). 

 

Figure 9: Response of participants to if they think that autism is a disease.   

Survey question: Do you agree with the statement, “There is no point in living if one has to do so with something like autism?  

The initial survey indicated that 90% of the carers disagreed with the statement. After the application of the intervention, the survey indicated that 100% of the participants disagreed with the statement (Figure 10). 

 

Figure 10: Response of participants to if they think they agree to the statement that there is no point in living if one has to do so with autism.

Survey question: Is it possible to cure autism? 

The initial survey indicated that 50% participants felt that it was possible to “cure” autism. However, with the development and application of the intervention, this ratio changed and 90% of individuals then identified autism as a lifelong disability (Figure 11).

With current evidence and research, there is no available cure of autism, however, with proper medication and support, its symptoms can be minimised and the affected individuals can live a good quality of life.

 

Figure 11: Response of participants to if they think that autism is “curable”.   

Survey question: Do you agree that caring for individuals with autism requires special care? 

The research indicated that before the application of intervention, the findings indicated that 40% of the individuals agreed that there is a need for special care for individuals with autism. Further, with application of the intervention, it was revealed that 70% of participants felt the need of special care and support to be given to individuals with autism (Figure 12). 

 

Figure 12: Response of participants to if they think that individuals with autism require special care. 

Data for application of the intervention

• Week I: All ten participants were present in the session (32 minutes).
• Week II: All ten participants were present in the session (30 minutes)
• Week III: All ten participants were present in the session. (29 minutes).
• Week IV: All ten participants were present in the session. (33 minutes).

The findings indicate that the care service providers possess limited knowledge and understanding of autism and how it impacts the quality of care and services provided to affected individuals. It is also associated with the prevalent stigma and impacts the overall quality of life and well-being of autistic individuals. Therefore, a major impact of these findings can be asserted in finding the cause of poor care provided to autistic individuals due to poor understanding of the care needs and knowledge about the disorder. The prejudiced behaviour of the care service providers and the prevalent stigma against the disorder can also be identified as the primary causes. Hence, there is a need to develop a better strategic approach and implement them to enhance the quality of care for individuals who have autism and promote their inclusion in the system. To improve the inclusion of people with autism in the care facilities, the following recommendations can be placed into consideration: 

1. Development of training and educational programs for the carers who cater to the needs of autistic individuals: providing knowledge and training can help in the elimination of stigma and promote improved understanding of the care needs of people (Lord et al. 2022). 
2. Policymaking and implementation: The role of the care worker extends further from providing quality care to the development of policies and implementation. Policies to promote inclusion should be focused on ensuring the well-being of autistic individuals. The policies should be developed to reduce the stigma and enhance the participation and inclusion of autistic individuals in the process of care (Brigido et al. 2021). 
3. Evaluation of improvement programs and collection of feedback: Collection of feedback is an essential component of research. It helps in directing the research further for the future and also helps in the identification of limitations that can be remedied for improved outcomes and further development of the plans. Feedback should be collected from the participants as well as the autistic individuals who receive care to identify the impact of the change implemented (Lord et al. 2022). 

The current study only involved ten individuals who were part of this action research. This was a small sample size, and hence, the findings of this study are highly specific and cannot be generalised. One of the essential strengths of a strong quantitative study is the presence of methods of quantitative analysis. Therefore, for future research, a study with a greater sample size will be used and will be included in this research (Lee 2019).

The findings of this study also indicate that there exists a massive lack of knowledge about autism, and there are also prejudiced and stigmatised notions regarding the disorder. This impacts the overall care that a person with a disorder receives and impacts their overall quality of life and wellbeing. The findings of this research can therefore help in developing future strategies aimed at reduction of stigma and promoting of inclusion of individuals in the community. This will help in enhancing the opportunities available and promoting better living experiences, and minimising exclusion (Brigido et al. 2021). 

The role of National Autistic Society in the UK is pivotal to assist individuals with autism. It is the leading charity that has been working with families with affected children since 1962. It provided allowances and promotes holistic development of children and provides them with opportunities for their development (National Autistic Society 2022). The role of specialist schools also needs to be acknowledged. Children with autism may require supported learning support and with specially trained professionals, improved learning support can be provided to the students with autism.

Conclusion

Autism spectrum disorder or autism is one of the complicated developmental disorders that is now categorised as a form of neurodivergence. Individuals with the disorder are associated with complications in the completion of daily life activities and navigation through the regular working of society. The incidence is also associated with poor quality of service and care along with negligence of the care needs of individuals with the disorder. This paper provides an evidence-based discussion that is associated with the application and development of an action research program that aims to identify the cause of poor care and develop interventions to improve them so that a more inclusive approach to care can be developed. This study applied a quantitative research approach and recruited participants through purposive sampling. The data was collected through close-ended interviews. The findings of this research indicate that lack of knowledge and prevalence of stigma among the carers impacts the quality of care that is received by individuals with autism. The findings also suggest a need for more robust research with a greater sample size needs to be applied so that the outcomes can be generalised and improved outcomes and inclusion of autistic individuals can be achieved. Through this research it can be concluded that the carers have limited knowledge of autism and this impacts their process of care and prioritisation of patients also impacts the overall health outcomes if affected individuals.

Slide 1: Action research project

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Slide 2: Theme and Title of the research

 

Autism is a complex disorder that is associated with several social complications. However, it has also been identified that the disorder is associated with stigma and prejudiced behaviour in society (Akhter et al., 2018). This impacts the process of care and support that is provided to the patients. This action research was done to identify the cause of poor treatment of individuals with autism in the care facility and to develop an intervention for minimisation of the identified cause of poor care (Brigido et al., 2018). This presentation will provide a summary of the research undertaken along with implications of its findings and future recommendations that can be undertaken. 

Slide 4: Role of research in minimisation of stigma against autism in care

Research plays an important role in the development of interventions (Sharma et al.,2018). In the given case, it is of prime importance as it will help in the identification of factors associated with the exclusion of autistic individuals and promote competence and inclusivity in the carers with an evidence-based approach (Khosla 2021). It will also help in the identification of knowledge of autism among the carers (Lee 2019).  

 

Slide 5: Review of literature

The incidence of autism has increased globally. However, the analysis of literature on the research done so far indicates that people have limited knowledge of autism. There is also a prevalent stigma around the incidence of the disorder (Salleh et al. 2020). The quality of care that is impacted for the individuals with the process of care and has been associated with worse healthcare outcomes for people with autism (Fletcher-Watson and Happe 2019). The major stigma results in prejudiced behaviour, lack of prioritisation of care needs of autistic individuals and exclusion (Gorczynski et al. 2021).

 

Slide 6: Methodological framework applied in the research

A primary quantitative research design was chosen for the study. The participants were recruited through purposive sampling. A total of ten individuals were included in the research. Formal informed consent was collected from the individuals before they were included in the study. The participant characteristics were also defined. The data was collected by the development of survey questions that were asked personally through interviews. An educational intervention was then designed, and its weekly session was given. The interview was retaken to assess the outcomes of the interventions.

 

Slide 7-8-9: Findings

The participants of the study were both males and females, with 60% males and 40% females. Only 40% of individual carers understood that people with autism have more complex needs. Further, 70% of participants indicated that they would not prioritise the needs of an autistic individual. Most participants did not have knowledge of autism and indicated that only 30% of individuals agreed that they had sufficient knowledge of autism. In congruence to the same, 70% of participants also indicated that they did not have any knowledge of the challenges that were faced by individuals with autism.  

Slide 10-11-12: Findings

The need for the inclusion of policy for autistic individuals was realised by only 40% of participants. 80% of participants also thought that it is difficult to provide care to individuals with autism in comparison to non-autistic individuals. One of the major findings was the prevalent perception among the participants that 90% of participants thought that autism is a disease. While most carers discarded the thought that they would dismiss the idea that life is not worth autism. 50% of participants also felt that it was possible to cure autism in the initial survey. Only 30% of participants realised that people with autism might require special care and acknowledged the diverse needs of the autistic individuals.   

 

Slide 13: Analysis of findings

The findings indicated that many carers did not have sufficient knowledge about autism and were also associated with stigma and prejudice in the understanding of the disorder. The findings also suggested that the application of an education-based intervention could be beneficial and limit the stigma and promote a more inclusive approach to the management of individuals with autism.   

Slide 14: Potential impact of research for service improvement and professional development

The impact of this research will help in outlining the interventional strategies for providing inclusive care to individuals with autism. The findings of this research can be used to develop programs that promote the inclusion of autistic individuals and can also help in reducing the disparity that exists in the provision of healthcare. As a care professional in future, this will help me provide more informed care and support. At a personal level, I have been able to gather knowledge and understanding of research methods and the application of action research. I will use these skills in my future research and its outcomes.   

The recommendations for future study and practice indicate the following:1. Need for improvement of inclusion principles by education and training of workers (Lord et al. 2022)

2. Promotion of policy development and implementation (Brigido et al. 2021)
3. Evaluation of programs to ensure their effective development (Lord et al. 2022).

Applications of these recommendations will help in enhancing the research and development for the inclusion of individuals with autism and ensure the provision of their quality care. 

Slide 16: Conclusion

This research was conducted for the identification of the cause of poor quality of care provided to the patients with autism in the care facilities. This action research project was completed with a quantitative approach and was able to identify that stigma and lack of knowledge in the carers impacted the care provided to the autistic individual. This research also concluded that education-based interventions could be beneficial in minimising the incidence of such prejudice and improving the inclusion of autistic individuals in the process of care. 

Slide 17: References

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