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|Year : 2019
: 61 | Issue : 1 | Page
|Parental care-seeking pathway and challenges for autistic spectrum disorders children: A mixed method study from Bhubaneswar, Odisha
Pranab Mahapatra1, Sanghamitra Pati2, Rajeshwari Sinha3, Abhimanyu Singn Chauhan4, Rakesh Ranjan Nanda5, Srinivas Nallala5
1 Department of Psychiatry, Kalinga Institute of Medical Sciences, Bhubaneswar, Odisha, India
2 Department of Health Research, Regional Medical Research Centre, Indian Council of Medical Research, Bhubaneswar, Odisha, India
3 Independent Researcher, New Delhi, India
4 Public Health Foundation of India, Gurgaon, Haryana, India
5 Indian Institute of Public Health, Public Health Foundation of India, Bhubaneswar, Odisha, India
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|Date of Web Publication||9-Jan-2019|
| Abstract|| |
Background: Autism spectrum disorder (ASD) is globally a major cause of childhood disability. It is estimated that in India approximately 1.7–2 million children are affected with this disorder. Early diagnosis is an important criterion to start early interventions for ASD treatment. However, for every childhood problem that receives a medical diagnosis, there is a period between a parents' first recognition of unusual symptoms and the eventual diagnosis. Several factors influence this initial symptoms recognition and final diagnosis.
Aims: The present study attempts to decipher parents' perception regarding ASD and to understand the early signs of ASD recognition among parents, treatment-seeking pathways adopted their experiences and challenges in the overall process.
Setting and Design: A facility-based cross-sectional study was undertaken at Bhubaneswar, Odisha.
Methodology: Parents of children with ASD were recruited for this study. Seventy-six interviews were conducted, and the data were analyzed.
Results: The major symptom identified by the majority of the parents was social difficulty among their children. Maximum parents had not heard about ASD before their child was diagnosed with the disorder. Parents consulted multiple professionals or traveled long distances to confirm the diagnosis. Child psychiatrists often confirmed the diagnosis and referred patients to rehabilitation centers.
Conclusion: Lack of awareness, unavailability of services, and stress contributed to the delay in ASD diagnosis. There is a need for designing proper awareness and genuine center for the treatment. Similarly, referral and counter-referral mechanism is also required to be established to save delay in diagnosis and initiate prompt treatment in the field of ASD.
Keywords: Autism, autism spectrum disorder, barriers, care-seeking pathway, mixed-methods
|How to cite this article:|
Mahapatra P, Pati S, Sinha R, Chauhan AS, Nanda RR, Nallala S. Parental care-seeking pathway and challenges for autistic spectrum disorders children: A mixed method study from Bhubaneswar, Odisha. Indian J Psychiatry 2019;61:37-44
|How to cite this URL:|
Mahapatra P, Pati S, Sinha R, Chauhan AS, Nanda RR, Nallala S. Parental care-seeking pathway and challenges for autistic spectrum disorders children: A mixed method study from Bhubaneswar, Odisha. Indian J Psychiatry [serial online] 2019 [cited 2019 Apr 20];61:37-44. Available from: http://www.indianjpsychiatry.org/text.asp?2019/61/1/37/249658
| Introduction|| |
Autism spectrum disorder (ASD) refers to a group of childhood neurodevelopmental disorders whose onset in children is usually before they are 3 years old. The umbrella term ASD includes autism, childhood disintegrative disorders, and Asperger syndrome. Autism appears to have its roots in very early brain development. Impairments in ASD virtually affect all aspects of the child's functioning. The defining features of autistic disorders include impaired reciprocal social interaction, impaired communication skill, repetitive and stereotyped patterns behaviors, interests, and activities. ASD can also be associated with intellectual disability, difficulties in motor coordination and attention, and physical health issues such as sleep and gastrointestinal disturbances. Some person with ASD may also excel in visual skills, music, math, and art.
According to the Centers for Disease Control and Prevention (CDC), it is estimated that globally 1 in 68 school-aged children has an ASD. A systematic review of epidemiological surveys of autistic disorders worldwide shows a wide variation in the prevalence ranging from 4.1 to 94 per 10,000 children with a global median ASD prevalence of 62 cases per 10,000. The average prevalence of ASD in Asia from 1980 onward was reported to be 14.8 per 10,000. In South Asia, the reported prevalence of ASD ranged from 0.09% in India to 1.07% in Sri Lanka. Although not uncommon, there are only a few documented research that describes the prevalence of ASD in India.,,, It is estimated that there are approximately 1.7–2 million children with ASD in India.
Autistic disorders are diagnosed by the presence of observable behaviors and symptoms rather than by etiology. Early diagnosis is an important criterion to start early interventions for the treatment of ASD and reductions in future complications. Early diagnosis of autism not only allows the design of early and effective intervention programs for better long-term outcome of the individual but also reduces the financial burden and improves the quality of life. The initial symptoms of autism recognized in infants or children include social difficulties and withdrawal, speech delays, developmental difficulties, and limitations in reciprocating social interaction involving communication, play, or behavior., However, for every childhood problem that receives a medical diagnosis, there is a period between a parent's first recognition of an initial symptom and the eventual diagnosis. In case of ASD, the mean age for initial symptom recognition by parents was around 24 months,, while parents had to wait for almost more than 2 years (49.75–55.6 months) before the proper diagnosis of ASD was made., Lack of awareness and understanding of ASD among parents are a major reason that contributes to such delay in recognition, consultation, and final diagnosis, all of which eventually lead to poor prognosis and associated comorbidities in the patient.
In view of the above, the present study uses a facility-based cross-sectional study setting in Odisha to understand parental care-seeking pathways and challenges for children with ASD. The study explores approaches of parental identification of ASD among their children, mapping of the treatment pathways followed by parents, and also documents the experiences of parents from identification to definite care. The research will add to the growing body of evidence pertaining to the process of parental recognition and the initial diagnosis of ASD and their help-seeking behavior particularly in the Indian context.
| Methodology|| |
Study design and study settings
A cross-sectional facility-based study was conducted during January–June 2016 (using a parallel mixed-method approach) to explore the initial symptoms of concern of ASD, treatment pathways, and overall experience among parents of children with ASD. The study was conducted in rehabilitation centers, private clinics, and special schools managing ASD children in Khurda, a district in Odisha, where parents of children diagnosed with ASD were recruited for the study. The study centers were selected purposively on the basis of caseload and feasibility of the study.
Data collection and management
Out of five centers that provided service within the study setting, four centers allowed for data collection. Necessary permission was obtained from the concerned authority before proceeding with the study. Parents of children with ASD were identified from the four centers. The parents so identified were informed about the study by their respective institution. A semi-structured questionnaire was prepared for data collection for the study [Supplementary File] [Additional file 1]. The instrument captured information related to the demography of the participants, treatment pathways with time intervals (from consultation to the definite care). The second section of the questionnaire consisted of open-ended, in-depth interview guide prepared through literature review and consultation with experts to capture overall experiences of parents during the treatment process which included facilitators and barriers to the treatment-seeking pathway. The prior appointment was fixed with the participants at a time and place convenient to them. The interview was conducted by PM and RRN, former is a trained psychiatrist and qualitative researcher while later has over decades of experience in public health research. All the interviews were conducted in local language, transcribed and translated by professional agency. The parents were interviewed at the facility itself, and the duration of the interview was about 0.5–1 h. Apart from the interview, some children were also observed at their homes. Data collection was stopped on reaching saturation point across the various key themes of inquiry.
Data analysis and quality assurance
The data collected from the interview was entered into SPSS version 20 (IBM, New York, USA). The data frequencies were analyzed using SPSS, and descriptive statistics were obtained. Continuous data were summarized as mean, standard deviation (SD) depending on normality of distribution, whereas categorical data were presented as frequency (%). Individual components were analyzed using tables and graphs. The qualitative responses were analyzed using thematic analyses approach. Data management and initial coding were done using qualitative data analysis software Atlas More Details. Ti version 7. Disagreements were sorted in consultation with the senior author of the study. Interviews were monitored for completeness, correctness, and comprehensive transcription and translation of responses with appropriate labeling of recordings. Thirty percent of the interviews from every site were randomly rechecked for transcription and translation. Due to the inherent limitations of interpretation of qualitative data from different parts of the country, we undertook regular consultations with the senior author about the data and its interpretations. It was ensured that interviews were conducted in place where only interviewee and interviewer were present. The study followed the consolidated criteria for reporting qualitative research for reporting the findings of this qualitative research study.
The participants selected for the interview were explained in detail about the procedure and the objectives of the study. The interview was conducted with the parents who gave the informed consent. Confidentiality and anonymity were maintained during the research. Participation was purely voluntary, and participants could withdraw from the interview at any moment. Medical and psychological counseling was provided, when it seemed necessary for the parents. Ethical approval to conduct the study was obtained from the Indian Institute of Public Health Bhubaneswar (IIPHB) Research Ethics Committee.
| Results|| |
A total of 76 parents of children diagnosed with ASD were interviewed before data saturation.
Characteristics of parents and children with autism spectrum disorder
The characteristics of parents and children with ASD who participated in this study are summarized in [Table 1].
|Table 1: Characteristics of parents and children with autism spectrum disorder|
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Majority of the children (88.2%) diagnosed with ASD were male, and only 11.8% were female. The type of family from where these children belonged to was mostly nuclear followed by extended family. Very few of them were from joint family settings. All the parents interviewed had a maximum of two children. Fifty-eight percent of the children were the only child of their parents; the rest was the second child. More than 90% of the respondents in the study were Hindu, and about 6.6% were Muslims. In the present study, the sample education level of both parents was largely graduates and postgraduates. Fathers (52.6%) had pursued postgraduation and above in different domains, while mothers (56.6%) were graduates. Based on the response, the occupations of fathers could be categorized into three subtypes as follows: government service, private services, and business. While only 25% of the fathers were enrolled on government jobs, 75% of them were running their own business or engaged in any private service. On the contrary, 76% of the mothers interviewed were homemakers or housewives while remaining were into service (government or private).
Symptom recognition and initial diagnosis
Initial symptom recognition
The first step in the process of seeking diagnosis is the recognition that some aspect of development is not proceeding. Parents in the current study reported that they had first noticed something unusual in their child when the age of the child was in the range of 1.2–3 years (mean age 2.05 years with SD 0.48). To analyze the behaviors of concern, responses from the semi-structured interview were coded into four categories as follows: social difficulties, delayed language, poor eye contact, and abnormal restricted and stereotyped movement [Table 2]. The social difficulty was reported as the major initial symptom of concern by maximum number of parents (46.1%) with a mean age of noticing the symptom to be 1.95 years (SD 0.45). The second most common symptom noticed initially among the children is the delayed language which was reported by 31.6% of the parents, followed by poor eye contact (15.8%) and abnormal restricted and stereotyped movement (6.6%). There were no differences in symptoms first noticed based on the sex of the child.
Initial contact professional
Initial symptom recognition by family members is often followed by reaching out to professionals such as pediatrician, child psychiatrist, general practitioner, speech therapist, etc. Interview with parents showed that after recognizing the first symptoms, maximum parents (89.5%) consulted pediatrician [Table 3]. However, after consultation, the pediatrician often referred the child to a psychiatrist, following which most of them went to the National Institute of Mental Health and Neurosciences (NIMHANS), Bangalore, for further consultation. Maximum parents consulted more than one doctor, ranging from 1 to 6 (mean 3.84). This doctor shopping could be contributing to the delay in diagnosis with a mean 4.08 months and SD 1.92 (minimum-1, maximum-9).
Final diagnosis by the professional
The final diagnosis of ASD in the child was found to be given by different healthcare professionals [Figure 1]. Observations from the study show that in maximum cases, the final diagnosis was given by psychiatrist (57.9%) whereas sometimes, it was also made by occupational therapists (21.2%), speech therapists (11.8%), or pediatricians (9.2%).
|Figure 1: Professionals involved in the final diagnosis of autism spectrum disorder|
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Service pathway from symptom recognition to diagnosis
The care-seeking pathway from symptom recognition to initial diagnosis as deciphered from the respondents is presented in [Figure 2]a. After recognition of initial symptoms, some parents chose to stay at home, while some consulted doctors, discussion among friends and relatives, or searching the internet for more information. Consultation with the doctor was followed by reference to a mental hospital or healthcare facility where ASD in the patient was confirmed by the psychiatrist.
|Figure 2: (a) Schematic representation of the service pathway from symptom recognition to diagnosis. (b) Schematic representation of the diagnostic process pathway|
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The overall diagnostic process after the initial diagnosis of ASD is shown in [Figure 2]b. Once referred to a healthcare facility, the registered patient was allowed to consult a doctor and his/her general health condition assessed. ASD in patients was suspected or confirmed after the use of screening or diagnostic approaches such as (i) Modified Checklist for Autism in Toddlers (M-CHAT), a psychological questionnaire that evaluates ASD risk in pediatric population or (ii) Diagnostic and Statistical Manual of Mental Disorders 4th Edition, a classification and diagnostic criteria for ASD in children. Suspected diagnosis was followed by medication or training, while a confirmed diagnosis was referred for further treatment.
Diagnosis and treatment
Healthcare pathway for diagnosis to treatment
The flowchart of the overall process from diagnosis to treatment is shown in [Figure 3]. Following diagnosis, different kinds of therapy were given to the children, which can be home based or rehabilitation based. The therapies with respect to rehabilitation services are classified into behavioral therapy, sensory integration (SI) therapy, speech therapy, and special education.
|Figure 3: Schematic representation of the pathway from diagnosis to therapy|
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Currently received therapy
Interview with parents of children with ASD also gave an idea of the most commonly received therapy among children. The most common therapeutic approaches reported were speech therapy (28.9%) and SI therapy (22.3%). However, maximum number of parents (38.2%) responded to using a combination of both SI and speech therapy.
Treatment costs and perceived stress in parents
The maximum expense amount for therapy in the present sample was about 3000–5000 INR per month. In addition to expenses on therapy, there are also other indirect costs associated with therapy which is much more than that of actual cost, as reported by parents. This issue of being able to cope with the large expenses involved in the diagnosis and treatment of ASD in children is often a cause of stress among parents. The perceived stress observed in parents in the present study ranged from low to high. In maximum parents, the medium level stress was reported followed by high- and low-level stress.
| Discussion|| |
This paper describes the process of parental recognition, the treatment-seeking behavior, and the experience from symptom recognition to final diagnosis across a facility-based cross-sectional study in Bhubaneswar, Odisha. In this section, we try to analyze the observations from the study and associate them with impending challenges faced by parents of children with ASD.
The data collected from the interview of parents showed that they recognized something unusual in their children almost 4–6 months later than parents of the United States. Daley had reported that the first symptom recognition by parents took place when children aged between 3 months and 6 years 5 months, much later than studies reported in the West where recognition usually took place between 14.9 and 19.1 months. Lack of awareness about ASD has often been cited as a reason for delayed recognition of symptoms and initiation of diagnosis or treatment., The present study shows that parents of ASD children have considerably good education and higher qualification, yet awareness on ASD was still lacking. Most of the mothers were homemakers, implying some of the working mothers would have left their profession for managing their child with ASD. Shyu et al. have shown that parental conceptualization of illness could vary considerably from scientific explanations even for parents who were well educated. For example, the parents even sought supernatural explanations for the disorder.
The delay between the initial symptom suspicion and the final diagnosis was about 6 months. While some parents did not readily accept any unusual behavior among their children despite having noticed some abnormal symptoms, some parents resorted to taking medical help as soon as they noticed unusual responses in children. Parents also did not rely on one doctor but usually consulted multiple doctors or health professionals such as pediatricians, child psychologists, speech therapists, etc., to confirm their diagnosis. In this process, the care-seeking pathway was delayed until the child was diagnosed by a well-known medical professional.
“My first reaction is that I am not able to believe that my son is not normal. When I shared it with my husband, he also did not believe the same. We then consulted the doctor for treatment.”(R3).
“My son is having delayed milestone as he is a preterm baby. There is no muscle power within him, so we thought probably he is a cerebral palsy child. When he started walking, there is a completely erratic deviation in the milestone. We then consulted a doctor who told us about his ASD condition. We had never heard about ASD before this.” (R6).
Parental recognition of initial problematic symptoms spans a wide range. For example, a study on 95 families of autistic children in India reported a total of 137 symptoms, with a large percent of the families noticing social difficulty as an initial first symptom. This is similar to the observations made in the present study. Impairment in components of social interaction among ASD individuals was also reported as the most presenting symptom by Karthikeyan et al. Speech delay was not considered as a major problem in the present case because of the cultural belief that the language delay in the child is a sign of intelligence, and boys often talk later than girls. Early autistic signs were therefore overlooked. The present study also reveals that the 3rd year onward, the parents' focus shifted from the child's social communication to the child's behavior. Several children developed aggressive and violent behavior posing great problem for parents, sibling, teachers, friends, and also for the community. Some parents also reported eating disturbances. It was either difficult to motivate the child to eat or the child did not stop eating; sometimes the child ate only favorite dishes. Managing the child at home or outside was, therefore, difficult for the parents as the child demanded a lot of attention.
“As my child is hyperactive, he demands more in every place. For example, when we take him to a toy store, he will demand that he takes all the toys. It is very difficult for me to manage him outside the home. Sometimes, we are even scolded by the shopkeeper.” (R3).
“Managing my child at home is not a big problem. The only thing I have to do is to remain a little alert. He is a special child. Like others, he also has the right to go all public places, but before I take him out, I have to convince all the people about his condition. That is really a problem.” (R6).
Another important factor contributing to the delay in diagnosis and treatment is the nonavailability of services and lack of access to the appropriate healthcare facilities. It is likely that all healthcare professional recommended patient to a special intervention/rehabilitation center for the treatment of ASD, for example, NIMHANS in Bengaluru. Some parents in this study reported that they had to travel to NIMHANS, Bengaluru, due to lack of other treatment centers close by which could give satisfactory diagnosis and treatment. Moreover, Bengaluru is about 1500 kms from Bhubaneswar. Such long-distance travel by rail or air is both time-consuming and cost-consuming. Looking for economically feasible and short-term recovery approach, many parents have also changed doctors/centers they were consulting and delayed treatment. Several other social and cultural issues, such as stigmatization, folk beliefs, doctor's reputation in society, dependence on faith healing or alternative medicines, etc., have also been identified as barriers to the early diagnosis and treatment of ASD.,
“We were not aware about the condition before and have never heard about it. So we did not know whom to consult. It was very difficult to get the service in beginning phase.” (R2).
“Availability of service is good, but transportation is a major problem. Regular up and down to the service center is an issue.” (R4).
“My son was diagnosed with ASD in the year 2002, but at that time, there was no facility in Odisha which could help me. So I had to take him to NIMHANS, Bengaluru. The situation now has however changed. The diagnosis is yet not proper as there is very limited knowledge in this domain and very few centers who provide definitive care. Improvement of these two is a must.”
Economic factors also have a role to play. In the present case, parents of children with ASD were spending almost Rs. 1000–5000 per month, or sometimes even more on the treatment of the child. Most centers rendering consultation or treatment for autism were private business centers, wherein parents are required to pay a substantial amount of money to support the treatment of their child. Apart from the direct cost associated with treatment, the regular traveling cost and the other indirect cost lead to a significant financial burden particularly for middle-class families in Bhubaneswar.
In a study on parental explanatory model of autism, the authors have discussed that autism can impact not only the autistic child but also the parent, the siblings, the relationship between the parent and the child, and also the relationship with the family. Similarly, the parents interviewed in the present study agreed to be undergoing stress as a result of their children being diagnosed with ASD. While on the one hand, there is limited awareness or information on ASD, on the other hand, it is difficult for them to accept that their children were autistic patients. This is further associated with issues such as lack of family acceptance and also arranging for necessary diagnosis and treatment. Studies have suggested that parents of children with ASD are at an increased risk of acute and chronic stress, which can negatively impact family life as well as their interpersonal relationships. Raising a child with ASD is also reported to put tremendous social, financial, and emotional strain on families.,, It is, therefore, critical that important and unmet support needs of parents are understood to enable better acceptance of the child, better parent psychology, and family outcomes.
“At initial stages, he was not accepted well within our family. They thought he was mentally ill. However, with therapy, the behavioral symptoms have improved and now his acceptance by the family has also improved.” (R3)
Limitations of the study
As the study was part of the Postgraduate Diploma in Public Health Management, IIPHB the study was time bound. Furthermore, sine convenience sampling was used, there is a possibility that selection bias might have been introduced; the parents who did not participate might have made different decision from those who did. The sample was selected from children who were diagnosed with ASD and were already in special center for intervention. These children could be considered as the extreme end of ASD. The future study should be conducted at community level who did not receive any therapy. Since the findings are based on the memories of parents, there may also be a potential recall bias. The study cannot be generalized because the sample size selected was smaller one taking into consideration the time limit. Interviews were performed in the local languages and then translated into English. Despite the rigorous verification process, some subtle nuances might have been missed during the verbatim transcribing.
| Conclusion and Recommendations|| |
The study outlines the parents' healthcare-seeking pathway for their ASD child from initial symptoms recognition to the final diagnosis of ASD. The study also reflects that the healthcare and education system for ASD has not been fully developed in Bhubaneswar, Odisha. Most of the times, parents in this study initiated the service pathway without prior knowledge on ASD. Lack of perception and awareness among parents emerged as a critical factor contributing to the delay of ASD diagnosis and intervention. In addition, there are many cultural, social, and environmental issues relating to ASD that could be potential barriers to service pathway. It is important to have early diagnosis along with proper definite therapy for reducing the ASD burden. Building awareness regarding autism with easy accessibility of therapy at each level of healthcare is extremely important.
The authors are grateful to all those involved in this work for providing relevant information.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| Supplementary File|| |
Questionnaire and Interview Guide (For Parent of ASD Children)
- Respondent code: ____________
- Type of family ____________
- Total number of family members including you:
- Family details
- Did you know your spouse before marriage
a. Yes b. No
- If Yes, how? (Explore whether consanguineous marriage)
a. Consanguineous b. Nonconsanguineous
- Household income ___________________ (Monthly) or ___________________ (Annual)
a. Hindu b. Muslim
b. Christian d. Others (Specify) ______________
a. Tribal b. Non-tribal
- Family H/O: Yes/No, If Yes: Maternal/Paternal
- Information about children (In order of birth)
- When did you or someone for the first time notice a difference in your child's behavior or development? What was difference that you noticed? (Probe and Prompt on social difficulties, delayed speech, poor eye contact, abnormal restricted or repetitive movement, developmental delay)
- What was your first reaction? What else… Probe? Whom did you first share/discuss this with? What was their response? What did you do then?
- Could you narrate about where all you have taken your child for treatment and what was the advice at every facility? We will begin with first point of treatment (it may not necessarily be an allopathic facility) Use additional sheet if required
- Could you share with me your overall experience of going through these facilities/hospitals? (Probe: Problems that you face in providing treatment to your child, finding appropriate provider, managing the child at home)
- In your opinion, what could be done to improve the procedure of diagnosis and getting service? Probe…
- What do you think is the reason/cause behind this problem to your child?
- How well the child is accepted by your family members? (probe for initial stages and at present)
- Is there anything else that you would like to share with me regarding your child's treatment?
- Do you have any queries to ask me?
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Dr. Sanghamitra Pati
Department of Health Research, Regional Medical Research Centre, Indian Council of Medical Research, Chandrasekharpur, Bhubaneswar - 751 023, Odisha
Source of Support: None, Conflict of Interest: None
[Figure 1], [Figure 2], [Figure 3]
[Table 1], [Table 2], [Table 3]