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Abstract

Autism was initially identified as a discrete entity in 1943. This now recognized group of disorders is often identified in children, but is a lifelong disorder requiring specialized assessment, planning, and care for patients. Nurses practicing in the Saudi Arabian healthcare system are often the first healthcare providers to encounter autism in the clinical setting. To highlight the perspective of practicing mental health nurses in Saudi Arabia regarding their experiences in caring for clients who have this disorder. A qualitative inquiry, made up of two focus groups of five members each, composed of mental health graduate students with experience in the field, facilitated a detailed investigation of nurses’ experiences in providing care for clients with these aspects of autism in clinical settings. Four principal themes and subthemes emerged from the data, which informed researchers about mental health nurses’ experiences with autism: (1) knowledge of autism; (2) previous experience in caring for those with autism; (3) practical applications used; and (4) challenges felt by mental health nurses. The Saudi nursing community appears to be looking for better training in identifying and caring for autistic patients. There also appears to be a desire to open channels of communication between primary and tertiary care facilities to improve client access.

Plain language summary

Nursing professionals working in a range of clinical contexts, particularly in the public healthcare system, are likely to encounter children with ASD. The need to introduce comprehensive training in the basic science of ASD has been highlighted by practising professional nurses. It is proposed that this initially take place during professional preparations for nursing practice and followed by continuing education once nursing professionals are practicing in clinical settings.

Keywords

autism disorder mental health nurse perception experience

Background

Neurological disorders known as disorders of autism (DOA) have been increasing worldwide. In 1943, a group of children were thought to be suffering from mental retardation. Their condition was marked by difficulty in developing speech, unsuccessful interaction with peers, ritualized behavior, and repetitive activities. They were the first persons diagnosed as suffering from autism (National Institute of Mental Health, 2020; Diagnostic and Statistical Manual of Mental Disorders [DSM-5]).

Interest in this group of disorders has increased. While formerly classified as discrete disorders as autistic disorder, pervasive developmental disorder no other specified, and Asperger syndrome they are now seen as a spectrum (Centers for Disease Control and Prevention [CDC], 2022). Variations in symptoms in the group of disorders classified as autism has resulted in the grouping of patients into various sub-set-based behavior which is considered to depart from general expectations of the client’s social milieu. These sub-groups are thus regarded as a spectrum of conditions which share various symptoms and levels of functioning and are now known as autism spectrum disorder (National Autism Center, 2020).

The World Health Organization (2013) believes that the nature, treatment, and manifestations of disorders of autism (DOA) warrants increased and urgent attention around the globe. Rates of prevalence of DOA worldwide expressed as diagnoses of children per 10,000 population range from 872, 268, 222 for Hong Kong, South Korea, and US, respectively, to 28, 5, and 3 for China, Taiwan, and Poland, respectively, suggesting a wide variation between national locations (Statista, 2020).

According to Jackson and Volkmar (2019), DOA includes several disorders, which were previously known as autistic disorder and are now referred to as disorders of autism. The group of disorders previously categorized as autistic disorder are now recognized as a range of dysfunction from severe to mild being characterized by differences in ability. Boys are four times more frequently diagnosed with is disorder when compared to girls. Intelligence levels of affected children range from normal to various levels of impairment but nearly half of 25-year-olds affected by autism have never held paid employment (Autism Speaks, 2020). Nearly half of affected adults suffer from an anxiety disorder (Ainsworth et al., 2020). Although commonly diagnosed in early childhood it continues to affect the lives of victims throughout the life span.

Beauvois and Kverno (2020) recommend that patients who are suspected of having a DOA diagnosis undergo assessment. Psychiatric-mental health nurses may be involved in identifying diagnosable disorders and modifiable symptoms, and subsequently create a treatment plan that can both improve function and reduce risk factors. Such holistic planning is centered on the needs of the family with an emphasis on providing educational resources for clinicians and parents, and continuing evidence-based assessment and monitoring (Beauvois & Kverno, 2020).

Lack of knowledge about DOA among many nurses can contribute to feelings of fear and apprehension (Hickey et al., 2018). Negative feelings among healthcare professionals, such as frustration, communication difficulties, and stigma related to working with DOA clients, may subsequently affect nurse attitudes and result in possible adverse effects on the level of care that people with DOA receive (Hannah & Stagg, 2016).

Training for nurses can be helpful in becoming familiar with aspects of DOA and learning effective methods for assessing, planning, implementing, and evaluating care for those who are affected by it. Tint and Weiss (2018) found that nursing students tended to hold preconceived ideas about working with DOA patients and experienced mixed feelings ranging from sadness, tenderness, embarrassment, displeasure, uneasiness, and feelings of inadequacy when caring for DOA patients. They also reported additional demands associated with DOA patients, resulting in stress, difficulty in interaction, and increased time required for care. Lack of socio-emotional reciprocity, difficulty with establishing relationships, use of non-verbal behavior, and lack of spontaneous sharing were also cited as behaviors which resulted in the feeling of increased effort required in caring for DOA patients (National Autism Center, 2020). However, healthcare provider attitudes toward the stigma associated with DOA may be positively moderated through information and training (Brown et al., 2020; Frye, 2016; Tint & Weiss, 2018).

Nurses are generally held in high esteem by the public and, as such, are well-positioned to educate and support those affected by DOA, as well as directing them to appropriate caring resources (Bernie et al., 2019). Sturm and Kasari’s (2019) research found that people with DOA are more likely than the rest of society to be diagnosed with and seek treatment for medical and psychological comorbid conditions. This means that nurses have a likelihood of encountering this particular population across all healthcare settings, a finding echoed by Crane et al. (2019), who pointed out that the DOA population seeks care and treatment from the same healthcare sources as the rest of society, emphasizing that nursing staff, as a whole, need to become confident when interacting with those in the DOA community: caring for them, anticipating their needs and supporting them and their families.

Considering these data McMahon et al. (2020) further suggest that nurses in all settings become knowledgeable about evidence-based research in the area of DOA caring practices since contact between healthcare providers and DOA clients may be encountered anywhere. Kaya et al. (2016) suggest that the outcomes of nursing research may be instrumental in improving care and rehabilitation interventions, thus enhancing the opportunity for DOA clients to achieve increased levels of functioning.

Gardner et al. (2016) highlighted the scarcity of academic studies that relate to the proficiency of nursing staff in caring for those in the DOA community. Evidence-based information of appropriate care for patients with DOA is scarce and may be inadequately presented in nurse training programs. The dearth of evidence-based information may lead to a lack of confidence among nurses when interacting with DOA patients and may hinder their ability to provide DOA clients with access to specialized care via referral. Creating enhanced education and tools for DOA care providers may improve their confidence in interacting with this population (Gardner et al., 2016; Queisser, 2016; Thomas et al., 2018).

There is an added challenge in providing care to DOA clients. Recognition of this condition is quite new to the healthcare community especially in Saudi Arabia (AlBatti et al., 2022). Frye’s (2016) study reported that nurses felt their expertise in dealing with individuals with ASD (autism spectrum disorder) was low, while Gardner et al. (2016) and Dawson-Squibb et al. (2020) found that many of their participants reported having a limited knowledge base regarding the DOA spectrum, due to a lack of evidence-based research. Based on the evidence described above, the present study aims to highlight the perspective of practicing mental health nurses in Saudi Arabia regarding their experiences during their caring for clients who have DOA.

Theoretical Framework

This study employs social cognitive theory with emphasis on social interaction and relations between patients and psychiatric-mental health nurses experienced during care of patients suffering from DOA (Padgett, 2008; Willig, 2013). The Improved Clinical Effectiveness through Behavioral Research Group (ICEBeRG) (2006) discussed the transfer of research to application of knowledge noting that this process is sometimes not consistent and at times hampered by choice between theories suggesting that explicit use of theory offers opportunities to do so constructively.

Sister Callista Roy proposed the Adaptation Model in approaching nursing care. Among her explicit assumptions is that personal adaptation is a combination of the individual’s environment to which they are exposed and their adaptation to that environment. The Adaptation Model is composed of four adaptive modes of persons—physiologic, self-concept, role function, and interdependence (Wills & McEwen, 2002). Based on this model persons are viewed as being capable of behaving in effective or ineffective patterns. In this model the goal of nursing care is to achieve effective patterns of living based on the four adaptive modes explicated by Roy. Patients who are affected by their ability to adapt satisfactorily to their social and physical environment require specialized care to achieve their maximum functional potentials (Dunn & Dunn, 1997).

In the present study, the phenomenological question is: What does the experience of caring for a child diagnosed as autistic in a clinical setting mean to you? This approach enabled the researcher to identify and explore professional nurse subjective realities encountered during the caring process and may assist in enhancement of methodological approaches in caring, ways of thinking about these disorders, and contribute to illumination of delivery of appropriate care based on their experiences.

Method

Research Design

Qualitative research is particularly suited to research that exploring human experiences because it involves a naturalistic and interpretative focus on the phenomenon studied (Aspers & Corte, 2019). In the present study, the qualitative research approach focuses on an in-depth investigation of the perceptions of a small number of individuals who are involved in providing care to DOA patients. Use of detailed investigation of nurses’ perceptions of experiences in addressing manifestations of DOA and how symptoms are addressed in clinical settings with consideration of Roy’s modes of adaptation may illuminate opportunities to enhance DOA care.

Participants and Setting

This study employed 2 focus groups comprised of a total of 10 nursing students pursuing graduate education and having a minimum of 2 years’ experience in pediatric nursing care in publicly funded hospitals in Saudi Arabia. Focus groups have been found to produce important perspectives on a topic of interest (Guest et al., 2017) and groups are recommended to consist of 3 to 21 participants including the moderator (Nyumba et al., 2018). The sample was made up of Saudi Arabian nurses pursuing post-graduate education in mental health. A focus group can offer over 80% of emergent themes relating to a specific subject (Guest et al., 2017), providing understanding of jointly held opinions and a diverse selection of perspectives (Nyumba et al., 2018). Use of focus groups and guided interviews (which were subsequently grouped and analyzed by theme) may provide an opportunity for participants to explain their experiences related to the caring process as it is implemented with autistic children.

Recruitment, Sample, and Setting

A poster in the College of Nursing served as a recruitment instrument, inviting all students involved in graduate studies to participate. Focus group interviews were conducted by the authors acting as moderators. The moderators were known to the students having been instructors during their undergraduate studies. The meetings were conducted in the graduate school during 2022. Table 1 displays important characteristics of the participants:

Table 1.

Characteristics of Participants N = 10.

Age (years)	Gender (male/female)	Employment status	Highest	Educational level
22–25	Male 2	Pediatric inpatient	Diplomate	6
26–30	Female 8	Pediatric emergency	BSN	3
31–50		General emergency	MSN	1

Note. Diplomate = Associate of Nursing; BSN = Bachelor of Nursing; MSN = Master of Nursing Science.

Ethical Concerns

The study design was approved by the institutional review board of the affiliated university. Written and informed consent included an explanation of the purpose of the study, right to withdraw at any time, and use of digital recording of the proceedings. All materials including digital data and transcripts were kept in a secure locked location.

Data Collection and Procedure

Two focus groups were comprised of six participants each which convened simultaneously. Participants were asked open-ended questions intended to explore their beliefs and thoughts regarding the care of patients with DOA. Table 2 displays the initial open-ended probes employed to begin the meeting.

Table 2.

Initial Probes Employed to Initiate Discussion in the Focus Groups.

-When you meet a child and their family for their first clinic visit, do you have any special ways to observing that child?-Have you been trained in assessing children’s developmental milestones? Do you do this with each child you see? Why or why not?-Have you had curricular items in your pre-registration or continuing education which offered information about DOA and treatment of these disorders? Please explain.-How do you see your role in caring for a child you feel has some signs of DOA?-What do you feel will be outcome of treatment of children with DOA?

As participants discussed the topic based on initial probes, thematic sampling was employed to pursue additional inductive data. Sessions were digitally recorded and transcribed into a Word document. All information that identified participants, mental health settings, and staff or patients where participants had worked was removed. Individual participants were not identified during the recording to preserve their anonymity. An audit trail was preserved on flash memory drive containing the focus group interviews, transcripts, and field notes. Saturation occurred at 60 to 90 minutes signaled by cessation of emergence of new inductive data. The moderators engaged in member checking at the conclusion of focus group sessions to give participants an opportunity to add any additional inductive data or to clarify previous points of discussion.

Data Analysis

Data was reviewed after transcription into a WORD document. Thematic analysis software NVivo 10.1 (QSR International, Doncaster, Victoria, Australia) assisted in identifying and classifying codes from the inductive data. Resulting codes were reviewed by the principal investigators and induced to form axial codes. These codes comprised the main and sub-themes. Doctoral-prepared faculty of the affiliated university assisted by providing opportunities for reflection on the data.

Rigor

Trustworthiness is assessed using credibility, dependability, and confirmability (Polit & Beck, 2016). Porter (2007) cited transparency, purposive focus, and auditability as important components of rigor. Member checking, qualification of participants, and use of thick description also adds to the trustworthiness of data (Elliott & Lazenbatt, 2005; Hays et al., 2016).

The principal investigators conducted a comparative evaluation after which regular consistency checks of subject areas were explored during data analysis. Peer debriefing was employed to assist in analysis of inductive data and moderators avoided expression of views to avoid bias. Care was exercised to identify and evaluate how data fit key categories at all stages to ensure proper abstraction (Hsieh & Shannon, 2005).

Findings

Four principal themes and subthemes emerged during data processing, encapsulating the mental health nurses’ experiences with autism: (1) knowledge of DOA; (2) previous experience in caring for those with DOA; (3) practical applications used; and (4) challenges felt by mental health nurses.

Theme One: Knowledge of DOA

The participants in this study had a reasonably well informed about the early symptoms of DOA. Every participant emphasized that the initial symptoms that stood out for them in DOA patients were social impairments. Found that this supports research from Canu et al. (2020), which found that these social behavioral aspects are among the earliest observed features of DOA.

Several participants said:

“in relation to my experience, I guess we can communicate and speak to them but they don’t like it!” [Participant 7]

The same interviewees continued:

“The child doesn’t want to interact and play with other children.” [Participant 8]

Several participants mentioned:

“No eye contact and facial or emotional expression,” and added that “they prefer to stay alone.” [ Participant 8]

In addition to highlighting difficulties with social interactions in patients with DOA, this study’s participants expressed concerns about the patients’ speech and language development.

Participants offered comments, including one mentioned:

“Poverty of speech, few words or nothing at all; they don’t like to talk to me or others; difficulty with speech.” Participant [1]

In addition to referring to communication impairments, most interviewees also spoke about how the children were engaged in repetitive patterns of behavior, had restricted interests or activities, and were focused inward.

One said:

“They focused on nothing.” Participant [10]

Meanwhile, another participant stated:

“They have a special world or a world of their own; not paying attention to others at all, or most of the time.” Participant [ 8]

Parents felt confused that their child’s “normal” appearance was accompanied by developmental delays and early behavioral difficulties. This was one of the principal reasons why they initiated contact with health professionals, as they sought answers to their questions. One participant relayed a quote from a parent:

“My child appears healthy, and their physique is very good, so we didn’t know they had any problems” Participant [4]

The nurse caring for this child added their own thoughts on this: “The parents would sometimes tell us about some abnormal behavior and, at first, we thought perhaps they had mental health problems, were physically harmed, or abused.” Participant [3]

This data suggests that the healthcare provider felt under pressure to provide answers to the parents and thus considered alternatives that could potentially account for the child’s developmental delay. This is positive from the perspective that it is important to consider other diagnostic possibilities, particularly when nurses are presented with the sudden behavioral change that this interviewee described. However, this must be balanced against the tendency for psychiatric-mental health nurses to dismiss the early indicators of DOA, as documented in studies by Burke and Cocoman (2020).

Theme Two: Previous Experience in Caring for Those With DOA

Despite their knowledge of DOA features, and their encounters with children with the condition and the complexities associated with its detection, participants in the present study identified their knowledge of appropriate effective interventions for children with DOA as being poor, with one saying:

“Seriously, I don’t have any experience for what I have to do.” Participant [9]

Others added:

“I don’t know how to deal with them,” and “I don’t know how to assess them.” Participant [5]

“DOA was part of our psychiatric nursing training and education, but it was a brief topic in the course, and we did not receive exposure to it during our clinical training either in mental health or pediatric content.” Participant [3]

Another participant added:

“There was no DOA care taught in the nursing curriculum and nothing related to autistic children in particular.” Participant [6]

Theme Three: Practical Applications Used

In the present study, participants expressed a lack of confidence in practitioners having the proper skills to identify autism at the screening stage. In this environment, participants lacked confidence in their own ability to discern these difficulties in the children and hesitated to undertake screening activities, suggesting that other specialists were more qualified to do this:

“I’m not sure that I can make a proper assessment.” Participant [7]

“We usually refer them to other subspecialists, such as a psychologist, or to another hospital.” Participant [10]

Another participant noted that:

“I’m a nurse here for general mental healthcare, not for making therapeutic plans with DOA patients.” Participant [6]

One more participant indicated that:

“We cannot give the parents any clarification or answer any questions, actually. Also, we cannot make a proper assessment or therapeutic plan because we don’t meet with them for long-term care.” Participant [3]

Also:

“There are other specialists who are better and more qualified for these issues to diagnose them and set up the treatment and a therapeutic plan.” Participant [3]

Theme Four: Challenges Felt by Mental Health Nurses

The present study also identified several systemic problems that contribute to poor compliance and detection of DOA, something to be considered in addition DOA screening challenges. Two principal barriers that were identified are a deficiency of services and inadequate training and support. Both of these factors affected participants’ willingness to screen children with autism during their wellness appointments.

Subtheme One: Deficiency of Services

Studies by Vohra et al. (2014) and Rosen et al. (2019) corroborated the participants’ dissatisfaction on another area: the level of appropriate services available to children with autism in Saudi Arabia, especially the inadequate supply of referral hospitals. One participant, speaking about other nurses, said “when they got to refer to a particular hospital, the parents met with a long waiting time to accept referrals.” Participant [10]

Another, in relation to being accepted in a public clinic:

“I see referrals can be difficult. In most cases it is not clear where we should refer to!! [Participant 3]

Maybe a good choice for them is to go to a private clinic.” Participant [7]

Meanwhile, one more added that:

“It is a long period before the referral results in being seen. This can lead to delays in the child being able to access early interventions.” Participant [9]

Also, another participant said:

“Going to the private clinic I think is much better. Faster interventions can lead to better care for those children with DOA because of the brain’s development.” Participant [2]

This was a key area of concern for all the participants, who know from experience that children and families have to wait a long time to receive a diagnosis from the specialist hospital, which has a long waiting list of children who require help. In the present study most of the participants said that the at-risk children they saw were referred to tertiary systems, including specialists at the local children’s hospital in which they were employed. While the participants in this study did use other local referral systems, they also suggested a dissatisfaction with the poor communication between these systems. Elaborating on this, they also mentioned that, once referrals had been made for children who needed additional assessment, there was little or no subsequent feedback. Every participant suggested that the referral process was disorganized and confusing, with one of them stating:

“Absolutely, it’s frustrating for parents, and when we refer the children to the hospital, we do not have a very good system reporting back to us.” Participant [8]

And:

“Our clinic does not get any more information once the child is found to have DOA. Their care becomes centered at another hospital.” Participant [4]

And:

“The problem is that we don’t get any feedback, so we don’t know if the child has been diagnosed with DOA or if they have a psychological problem. We may have had our suspicions that the child is autistic, but we don’t know. This is very difficult.” Participant [10]

The participants also suggested that this lack of information and feedback could inform their future encounters with children with DOA:

“We would benefit from receiving feedback, mental health issues or not! We need to be advised what they found and what they recommend; this would help us to develop our knowledge when it comes to the next child that comes to us.” Participant [1]

Subtheme Two: Inadequate Training and Support

The participants in the present study felt that their tertiary training did not prepare them to understand and provide appropriate screening, assessment, and care for patients who they suspected suffered from DOA. As a result, participants made referrals based on their knowledge base of the distinctive features of DOA, including social and communication deficits and behaviors they believed were indicative of potential DOA diagnosis. This supports the 2019 study by Saggers et al. (2019), which found that during their undergraduate degrees, over 50% of health professionals had either inadequate, or absence of training about autism-specific screening procedures and the broader range of autism characteristics.

In the present study, the participants who said they had minimal exposure to DOA during training were divided into two groups. The first described having received a short, basic introduction to autism during their professional nursing training. This finding is echoed in studies by Kuhlthau et al. (2015) and Yamada et al. (2020). Several participants advised that the brevity of the content made it difficult to remember, with one remarking:

“Maybe it was just a brief review and we didn’t go into many details and knowledge.” Participant [6]

Another participant commented:

“We covered it in our psychiatric nursing lectures, but it was very short and didn’t go into our clinical training.” Participant [3]

And:

“We had to learn of DOA by ourselves. We were not exposed to autism much during our educational background and in clinical practical areas. While we had basic training in psychiatry, the basic knowledge we gained is inadequate to enable us to perform proper assessments on children with DOA.” Participant [5]

These findings, regarding the lack of detailed knowledge arising from participants’ pre-registration training and the anxieties that the nurses felt when screening for autism, concur with the findings in studies by Ainsworth et al. (2020) and Tchanturia et al. (2020). As a result of insufficient training, they felt that they could not be properly prepared to meet the needs of children having signs that they might be affected with DOA.

The second group of participants who declared they had minimal exposure to DOA during training said that the knowledge that they did have was gained through their own efforts.

“It’s not something that I have been trained to do but really what I have heard and read in newspapers and books, and in social media, and seen on television.” Participant [2]

Another commented:

“Most of my information about autism has come from what I’ve read in magazines and on social media and seen in movies.” Participant [9]

The participants in this study were particularly interested in learning how to identify signs and symptoms of DOA, with one participant noting:

“It would be nice to have more information from courses about signs and symptoms of DOA that we could look out for.” Participant [4]

Another said:

“Because we don’t really know what to do, I feel like we’re not helping. We need an in-depth course of a few days or weeks to clarify the nursing role exactly!” Participant [1]

The same person added:

“I need to acquire the training to learn a lot of skills and tools to be able to identify the signs and symptoms of autism. I’m so interested in that, for gaining new knowledge.”

Another added:

“We have to know how to assess children with DOA.” Participant [3]

Many participants also suggested that they needed more thorough DOA training and asked whether the present study intended to deliver more comprehensive training as one of its outcomes. They also advised that their training preference would be a combination of classroom setting and clinical exposure outside their clinical workplace.

While there are considerable barriers to improving developmental screening in mental healthcare and general pediatric practice, this study’s participants repeatedly demonstrated their willingness to engage in training if it was open to them. Current screening practices were considered by the participants to be inadequate, placing undue reliance on experience and self-directed knowledge.

Mazurek et al. (2020) emphasize that during wellness appointments, it is feasible for nurses to conduct routine developmental screening and further assessment of symptoms of autism. The findings of this and other studies provide clear evidence that there are multiple perspectives regarding screening for DOA, including the lack of relevant training, as well as poor communication among health services and limited levels of professional responsibility. Mazurek et al. (2020) highlighted that nurses tend to struggle for quick and easy methods that make screening and treatment easier but encounter challenges to meet patient targets and complete all the tasks that they are required to complete as part of their day-to-day work.

Discussion

Findings of this study reflected that the participants while having been in contact with DOA patients, felt the critical need for increased theoretical and practical experience in order to function appropriately in their caring role. This agrees with McCormack et al. (2020), who found that health professionals’ understanding of the early indicators of autism was poor and that nurses’ symptom knowledge of DOA was worse than for other domains in their field. Despite their knowledge of early indicators and symptoms, Saudi psychiatric-mental health nurses still felt their concerns about caring for DOA patients were being left unmet. This assessment included speech, language, communication, and social behaviors, which Raviola et al. (2019) suggest should be closely monitored when conducting regular check-ups for children and assessing appropriate developmental milestones for specific ages although Nowell et al. (2020) found that these signs may not be observed in all cases and advised caution in using generalization, especially when counseling parents.

Deficiencies in identifying socially appropriate communication by the child was also identified and consistent with Hyman et al. (2020), who found that a complete absence of speech indicates a severe verbal communication deficit. Canu et al. (2020) highlight that the lack of communication with peers and poor socialization skills may lead to a diagnosis, but also may be difficult to recognize until the child is older.

The normal physical appearance of autistic children may cause confusion among health practitioners and was observed by Burke and Cocoman (2020) Parents as well find it confusing that the child appears normal but has developmental delays and early behavioral difficulties. This disconnect was found by Rabba et al. (2019) as the principal reason parents initiated contact with the health care community.

Assessment of suspected DOA in a patient was emphasized by the participants as a principal concern in providing care. Raviola et al. (2019), Maddox and Gaus (2019), Kerns et al. (2020) found that psychiatric- mental health nurses tended to dismiss the early indicators of DOA or provided incorrect information to families because of lack of appropriate training or ambiguity about their role in care of affected children. However, Smith-Young, Smith-Young et al. (2020) and Yi et al. (2020) note that having nurses ask parents about their child’s attainment of developmental milestones may be beneficial in obtaining a timely diagnosis and lead to appropriate referrals and interventions.

Participants indicated that they felt somewhat knowledgeable about the symptom domains of DOA through their theoretical preparation. Practical experience with patients affected by DOA was perceived to be inadequate among the participants thus interfering in their caring abilities, especially at the screening stage as also observed by Ainsworth et al., (2020) and Corsano et al. (2020). This is further corroborated by Kirby et al. (2020), Roman-Urrestarazu et al. (2021), van’t Hof et al. (2020), and Zwaigenbaum et al. (2019).

Understanding how practitioners acquire knowledge about DOA is critical because it means that these channels can be improved and strengthened. Nonetheless, it is notable that all the participants indicated that they felt that their knowledge and skills related to DOAs were insufficient to enable them to play a major role in recognizing and screening for the condition. This finding is similar to that of Maddox et al. (2020), who identified an inadequate level of knowledge and leading them to call for more extensive training in how to screen for DOA and interact with patients and their families.

In addition to deficiencies in identifying and caring for DOA affected children, participants identified a deficiency of available resources for caring for the patient once identified. This was a key concern for this population. Similar concerns were voiced by Vohra et al. (2014) and Rosen et al. (2019) related to practice in other locales. They cited few resources to which they might refer patients, long wait times between referral and acceptance for care, and dependence on private-pay medical facilities where care was more accessible. These data agree with Smith-Young et al. (2020) and Yi et al. (2020) who note that long periods of waiting for care can be detrimental because of the brain’s plasticity during childhood.

Additional concern was expressed about the lack of feedback and communication between the interprofessional team of practitioners. Participants felt that once the children had been referred to a specialized clinic of the tertiary hospital with which they were associated, there was no structured communication or feedback between themselves and parents or healthcare providers.

Limitations

This study represented views of a group of practicing Saudi Arabian mental health nurses pursuing a graduate degree in mental health nursing. Application of suitability to different locales, educational, and healthcare systems must be undertaken with careful consideration of characteristics of DOA care in those areas and the target population for appropriateness of transferability.

Conclusion and Recommendations

To conclude, psychiatric- mental health nursing professionals in this study felt a need for more information about DOA for themselves and others. They felt that their knowledge about how these conditions manifest was often inaccurate or incomplete, making their knowledge of screening, early identification, and intervention inadequate citing the imperative need for training at all levels of education and continuing education to enhance their knowledge base, appropriate role in assessment and provision of care.

Participants felt that curricula of institutions working to prepare licensed psychiatric-mental health nurses require modification to include comprehensive opportunities to gain knowledge and skill in assessment, planning, implementation, and evaluation of the needs of DOA patients including specialized experiences in clinical care. Nurses who already employed were seen to require continuing education opportunities and access to timely evidence-based information in this rapidly developing area of care.

Further, participants felt that they learned more about DOA from non-professional sources. This indicates a serious need for development and dissemination of evidence-based materials aimed at meeting DOA information needs of professional healthcare providers.

Communication with members of the interprofessional teams of establishments which serve as referral units for children was seen as poorly structured. Nurses called for initiation of institutional protocols for providing shared feedback to the primary care providers who referred patients who have been considered suffering from DOA and in need of further evaluation is a critical need to provide continuity in care and, as they noted, a learning instrument.

Education of all types of consumers to create awareness of DOA and its impact on families and society is an urgent need. Overcoming stigma and provision of information and assistance to those whose life is affected by DOA in an important goal for health education and literacy efforts.

Footnotes

Acknowledgements

The author thanks the Deanship of Scientific Research, College of Nursing Research Center at King Saud University for funding this research.

Author Contributions

SAH conceived the study and collected the data. SMY determined the methodology and wrote the background section, SAH AND SMY wrote the discussion. Both authors reviewed and amended the manuscript before submitting for publication.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Ethical Considerations

The research and interview process commenced after the ethics committee of the University approved (Institutional Review Board—King Saud University—Kingdom of Saudi Arabia) with log No.KSU-HE-21-88.

ORCID iDs

Seham Mansour Alyousef

Sami Abdulrahman Alhamidi

Data Availability Statement

Data sharing not applicable to this article as no datasets were generated or analyzed during the current study.

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Psychiatric-Mental Health Nurse Perspectives of Caring for Patients with Disorders of Autism

Abstract

Plain language summary

Keywords

Background

Theoretical Framework

Method

Research Design

Participants and Setting

Recruitment, Sample, and Setting

Ethical Concerns

Data Collection and Procedure

Data Analysis

Rigor

Findings

Theme One: Knowledge of DOA

Theme Two: Previous Experience in Caring for Those With DOA

Theme Three: Practical Applications Used

Theme Four: Challenges Felt by Mental Health Nurses

Subtheme One: Deficiency of Services

Subtheme Two: Inadequate Training and Support

Discussion

Limitations

Conclusion and Recommendations

Footnotes

Acknowledgements

Author Contributions

Declaration of Conflicting Interests

Funding

Ethical Considerations

ORCID iDs

Data Availability Statement

References