Exploring the path to pathos “Lived experiences of parents of children with autism spectrum disorder”: An interpretative phenomenological analysis

Abstract

Background: 

Children with autism spectrum disorder (ASD) require lifetime support by the family, thus posing a great amount of stress among parents. Understanding lived experiences of parents who provide lifelong support will guide in planning effective treatment for children with ASD. In view of this, the study was aimed to depict and understand the lived experiences of parents of children with ASD and making sense of it.

Methods: 

This interpretative phenomenological analysis research design was carried out on 15 parents of children with ASD coming to the tertiary care referral hospital of eastern zone of India. In-depth interviews were conducted to understand the lived experiences of parents.

Results: 

The current study identified six themes: major symptom recognition; myths, beliefs, and stigma related to children with ASD; help seeking behavior; coping with challenging experiences; support system; uncertainties, insecurities, and gleam of hope.

Conclusion: 

Lived experiences were found to be predominantly difficult for most of the parents of children with ASD, and inadequate services pose a major challenge to them. The findings highlight the need for involving the parents in the treatment programs as early as possible or extending appropriate support to the family.

INTRODUCTION

Autism spectrum disorder (ASD) is a neurodevelopmental illness of children associated with impairment in social and communicative skills with restricted repetitive pattern of activities. An estimated prevalence of ASD is at least 1% in high-income countries,^[1] 1.4% in South Asia,^[2] and 1 in 500 in India.^[3]

“Lived experiences” are the first-hand experiences of the primary caregivers of the cases which influence their perception, knowledge, and response to these experiences. Exploration of these lived experiences helps us to understand how people live through and respond to these experiences.

The family is the primary caregiver for a child with ASD. A child with ASD requires lifetime support by the family, thus posing a great amount of stress among parents. Parenting a child with ASD is challenging. Studies have shown that parenting a child with ASD is more stressful than parenting a child with a developmental delay and other neurodevelopmental disorders.^[4] The severity of symptoms of autism, parents’ inability to regulate self and societal stigma, and lack of social support are some of the factors that contribute to the increase in stress among parents.^[5–7] Parents face stigma, social isolation, and rejection because of which they become withdrawn.^[8] They don’t interact much with other family members or friends because of the stigma attached with autism. Also, the care needed by an autistic child leads to significant changes in the lifestyle of parents. They prioritize the needs of their autistic child because of which they engage less in social activities or avoid going to the family functions.^[9] Safe et al.,^[10] 2012 in their study found that the mothers experienced stress and challenges in dealing with the child and accepting the child for who he is. Parents relied more on the extended family for support^[11] and religious practices.^[12] Parents are also concerned about the future of child in their absence.^[13,14]

Caring a child with autism is difficult, and so it is important to study these experiences that the carers have, so as to better understand their stress. Cultural differences exist in how parents understand and accept the problems of the child. In India, children with ASD are diagnosed 6–10 months later in comparison to that in the West.^[15] This is because of the cultural beliefs present in the community. Understanding local perspectives helps in strengthening community-based care and improving outcomes.^[16] It is also important because it has been seen from studies of different countries that in case of autism, people do turn to alternative forms of treatment for ASD.^[9,17,18] There is also a huge treatment gap in terms of very few mental health professionals and specialized centers to provide help to such children.

In India, very few studies have been done to understand the indigenous perspectives. Till date as per review of literature, very few studies on lived experience with qualitative study design have been attempted with specific objectives from India. Most of the other studies from India have tried to assess one aspect like challenges, coping strategies unmet needs of children with ASD,^[19] parental belief and care practices for children with ASD,^[20] initial symptom recognition.^[15] A study by Desai et al.,^[13] 2012 was on parental experiences in school-going children and adolescents diagnosed with ASD. Another study was a narrative review of historical journey of autism in India.^[21] The studies from India have been mostly done on parents from metropolitan cities like Delhi, Chennai, Bangalore, Kolkata (Daley, 2004),^[15] or from Goa (Desai et al., 2012, Divan et al., 2012).^[13,19] The data have not been taken from rural India which accounts major part of our country. Furthermore, state like Bihar, located in the eastern part of India, which has lowest human development index in terms of healthy life and decent standard of living, it is utmost important to understand the lived experiences of parents of these children. Therefore, the present study aimed to depict and understand the lived experiences of parents of children with ASD and making sense of it.

METHODOLOGY

Participants and setting

It was an interpretative phenomenological analysis (IPA) research design. Sampling done was purposive. Study was conducted between September 2019 and March 2020. Institute ethics committee approval was taken before inclusion of the subjects in the study. The sample for the present study consisted of 28 parents of 15 children in which one mother and one father were interviewed alone, and for other children, both parents were interviewed together. The standards for phenomenological research were taken in consideration for the study.^[22,23] Participants who biological parents were having a child already diagnosed with autism spectrum disorder coming to the tertiary care referral hospital in the state of Bihar which is located in the eastern part of India were included. Diagnosis was given by the treating psychiatrist using standard DSM-5 criteria.^[24] Hindi, English, Maithili, and Bhojpuri were the most common spoken languages by the parents. No strict inclusion or exclusion criteria were kept, but the children with serious intellectual or physical disability at the time of presentation were excluded. The parents willing to give informed consent were recruited in the study. The patient’s socio-demographic details along with clinical variables were recorded with semi-structured pro forma.

Instrument

An in-depth interview guide was based on the previous study by Desai et al.,^[13] 2012 for the interview. The interview was kept open-ended if some new theme appeared during the interview for more in-depth exploration. The main points which were explored during the interview were: birth and early experiences, when did the parents first notice behavioral differences, help seeking behavior, treatment provided, challenges, and coping strategies used by the parents.

Procedure

All the in-depth interviews were conducted by two researchers in which one acted as a lead interviewer (psychiatrist) and the other as a note taker (clinical psychologist). The interview was video recorded after taking due permission from the parents. Only one mother of a female child refused to give permission for audio or video recording so her interview was handwritten by the interviewer and note taker. Each interview was conducted in the language in which the parents were comfortable. The interviews took around 1–2 hrs in which one or both the parents were interviewed. Data were collected until saturation was achieved.

Data analysis

interpretative phenomenological analysis (IPA) was used to analyze the data. The video-recorded interview was transcribed by the authors after listening again and again. Participants were given a code so as to avoid any bias related to the person giving a particular opinion. The transcription was then translated into English language.

Two researchers independently carried out the first two stages which include transcription and coding. The transcribed data for each interview were read and reread to gain familiarity with the raw data. During this process of familiarization, the emerging codes were highlighted. These emerging codes were compared with each other to identify themes. The categories were written on the left side and common themes that came out were written on the right side. This was done many times so that no theme was left out. It was cross-checked again by the other author. Then, similarities between categories were looked for, and emerging themes were noted (focused coding). Finally, after observing the various themes and refining them, an overall theoretical sense was made (theoretical coding). Memos were written at the end of each interview wherein the researcher summarized the information along with the key insights gained. A coding index was developed to organize the emerging codes into superordinate themes, subordinate themes, and subthemes. The themes were analyzed along with the supporting data (quotes) to fit together in a meaningful way.

The analysis of the data was done by the methods of phenomenological psychology, which were used to elucidate the essential meanings of the parents’ lived experiences of their child. The presentation in this report includes both phenomenological findings (i.e., the essential structure and constituent meanings of parents’ experiences) and the empirical findings (accounts of related factual trends evident in the data). Analytic rigor was ensured via internal reviews by expert members (consisted of other two independent psychiatrist) of the research team.

RESULTS

Fifteen ASD children participated in the study, and their parents were interviewed. Most of the children were males, aged around the age of 2.8–6.1 years, and the mean age was 4.5 years.

Most of the participants were from urban background, middle socioeconomic status, with well-educated parents. They were mostly Hindu except for one child who belonged to a Muslim family. One of the children had comorbid cerebral palsy (CP) but was a skillfully trained child while seven reported to have comorbid hyperactivity and three had seizure disorder. The socio-demographic and clinical variables are represented in Table 1.

Table 1: Socio-demographic and clinical characteristics of sample population (n=15)

Tables 2 and 3 describe interpretative phenomenological analysis which had superordinate, subordinate, and subthemes. Table 3 also mentions the quotes of the parents.

Table 2: Interpretative phenomenological analysis showing various themes of the lived experiences of the parents (n=15)

Table 3: Excerpts from interviews representing subordinate themes and subthemes

Superordinate theme 1: Major symptom recognition

The majority of the parents were aware that their children with ASD were different from others; however, later they knew specifically that it was due to ASD. They noticed the presence of speech and communication difficulties, which are the hallmark of ASD, along with the presence of behavioral issues like repetitive behavior and tantrums. Two children also had savant ability of singing.

Superordinate theme 2: Myths, beliefs, and stigma

Stigma as well as myths and beliefs related to children with ASD have to be dealt with by parents on an everyday basis as the critical statements are not just directed toward the child with ASD, but also toward the parents. Many parents reported experiencing social alienation especially due to lack of awareness in society and the tendency to internalize stigma. Four families reported that they had the belief that their child will become normal with time and would start interacting late just like one of the distant relative’s child in the family. Two parents reported their family blaming them for working, while the other two tried to normalize by saying that child is shy.

Superordinate theme 3: Help seeking behavior

In the current study, diagnoses were elicited from multiple professionals, including neurologist, psychologists, psychiatrists, and pediatricians. Good number of parents also opted for alternative ways of treatment in the form of going to faith healers, tantriks, ojhas, etc. This indicates a fairly high level of help-seeking behavior from both health professionals and faith healers.

Superordinate theme 4: Challenges and coping

The family members reported challenges at temporal sequence of life situations. Challenges at the level of treatment seeking and dealing with lack of awareness among the medical fraternity despite clear red flag signs of ASD lead to late diagnosis and exhaustion among the parents. Financial constraints were reported by two of the families, while most of them found difficulty in finding services in this region of the country. The untrained professionals in the current scenario were also acknowledged by three of the family members. One of the major challenges is that no medicine is available for ASD per se. This was addressed as a concern by the family members. Most of the parents had negative coping, viz. beating the child, feeling irritated, self-blame, feeling guilt, etc., in our study, while some had positive coping, viz. teaching the child, praying, thinking about positive things, etc.

Superordinate theme 5: Support system

This study spoke about the parents facing inadequate support especially from the paternal side of the family.

Superordinate theme 6: Uncertainties and gleam of hope

One of the parents discussed elaborately about the uncertainties regarding his child future. However, gleam of hope was also revealed in which family members reported that if their child will be able to speak spontaneously that would be their happiest moment.

DISCUSSION

The purpose of the study was to understand the lived experiences of parents of children with ASD, which helped in understanding the challenges and unmet needs of carers. Present study also provided us a paradigm for feasibility of developing and implementing a parent or family mediated intervention for these children in our state. Previous literature has called for more in-depth, cultural research on parents’ subjective processes.^[25] Therefore, we have tried to conduct in-depth interviews to better understand the experiences of parents of children with ASD. We decided to conduct our study in the eastern part of India to obtain the local descriptions for understanding the cultural contexts instead of presupposing the experiences from a culturally distant perspective. It was also important for getting insights into Indian parents’ perspectives on ASD.

The current study identified six major themes such as “major symptom recognition,” “myths, beliefs and stigma,” “help seeking behavior,” “challenges and coping with challenging experiences,” “support system,” and “uncertainties and gleam of hope.” Some cultural differences from already published studies using the lived experience paradigm have been highlighted across all the major themes.

Cornering the differently abled

Misbelief and stigma was one of the major themes identified in our study. As we have noted the perceived stigma was high as in one of our parents who did not allow for the videography consent of her daughter with ASD. This itself signifies the gravity of the stigma of ASD that too in female children in our culture. Some families reported use of local words by the relatives like “albataha,” “gong,” “loth,” “baheer,” and “lahera” along with comparison from other family members as well as inadequate support from paternal family. This was also observed in other studies where the author reported the use of intolerant and derogatory terms such as pagal (mad) or jhalla (idiot) for such children. Also, a generalized belief in our culture described by healthcare professionals was that “there may be a tendency by our rural mass to accept and tolerate some degree of abnormality as normal.” Of course, the current sample of our study was centered not only on parents in the rural areas, but those in the urban and suburban areas as well. Due to the different standards for problematic behavior, even after being from suburban and urban areas, the parents in our study noticed changes in the behavior later. This finding was phenomenologically consistent with the adult distress threshold model described by.^[26]

Hustling through the adversities

In the current study as well, diagnoses were elicited from multiple professionals, indicating a fairly high level of help-seeking behavior which is corroborated in a study by Daley et al. 2004 where the parents reported seeing an average number of 3.5 doctors before receiving a diagnosis.^[21,25–27] The pathway of treatment indicated the financial pressures on families due to the long journey to a diagnosis and the need for expensive and oversubscribed intervention sessions. In addition to previous findings, it was observed in our study that the age of first treatment seeking was two years. This was earlier as compared to the previous Indian studies but still later from Western studies. Also, the parents were well aware of their child’s behavior, had good observation, and therefore treatment seeking was better than we had expected. This shows that parents are more cautious about the development of their child and are adopting the principles of westernization. Therefore, earlier the detection, earlier the intervention is possible which can be converted into a full-term treatment plan.

Running through the brick wall

It is imperative to understand the barriers in ASD diagnosis that exist at multiple levels of analysis for the refining of the diagnostic process in order to change the landscape of disability within India particularly in our state which already have poor socio-economic indicators. In this regard, the financial implications for the family of a child with autism are significant. Another challenge reported by parents was availability of minimal therapeutic service for ASD.

Another challenge reported by parents was lack of awareness among the medical fraternity despite clear red flag signs of autism which led to late diagnosis of their child and also some false hopes and killed the time and energy of most of the parents. Similar finding was reported in previous study which revealed that many professionals were not able to diagnose ASD in children.^[27]

Plethora of emotions

Many parents did report negative experiences like having to deal with children’s behaviors, lack of family recreational time, lack of social life, and ultimately avoidance of embarrassment in social life. Lack of any respite and constant exposure to high levels of stress due to the consistent attention required by the child was particularly reported by the mothers in our study.

Emotional experiences reported were similar to grief reactions. Parents experience feelings of anxiety, helplessness, and remain perturbed as part of their lived experiences. A few parents go through shock and anger as they become aware of the diagnosis of their child. Some parents reported that their own needs take a backseat over the child’s needs. The current study also found that the parents will minimize their own emotions, normalize the experiences, and focus on the positive experiences as coping mechanisms. This appears to be somewhat similar to the processes of grief resolution in which the parents move from the perception of specific losses (e.g., routines, socio-emotional needs, and the fear of uncertainty) to accepting the life situation and coping with it. Awareness of the condition and a supportive attitude of the family can help the family overcome stigma and negative emotions. The parents in the current study implicitly described mixed feelings of pride in supporting their child, and some regret over not having an adequate social life.

Pillars of strength

In the absence of appropriate formal support available to them, parents appeared ambivalent of skill fully raising their child with ASD. This study explained the parents facing inadequate support especially from the paternal side of the family. This was corroborated in other studies as well as they revealed that mothers, as the prime caregivers, often sacrificed their professional life to take care of their child’s needs, while fathers worked long hours to take over the financial responsibilities of the family.^[25]

Silver lining

Also, despite their own uncertainties, insecurities, they do have a gleam of hope. In this context, there is a need to strengthen formal support services in the community and to provide positive behavioral support and specialized services to the parents and children with ASD.

An important limitation of our study is small sample. Our study was not a community-based study as it was done in a government run tertiary care referral hospital. Our study exclusively relied on interviews with parents, whereas systematic direct observations of family life were not conducted. Consequently, the current study could not completely reflect the complex everyday experiences of families. Further research needs to focus on objective methods of analysis with larger samples, including parents from all backgrounds.

In conclusion, the lived experiences of parents seemed to be variable. While the lived experiences are predominantly difficult for many parents, some of them also report transformational experience coinciding with greater understanding of ASD. However, these findings are generalized to parents from middle socio-economic status, who usually have access to mental health resources. More research would be required to understand the experiences of families of children with autism and those from different strata of our society.

Ultimately, the exploration of the journey and experiences of the parents of children with ASD may aid in the early recognition and may serve as a key to future opportunities and solutions to the pathos of both the parents of and the child living with ASD.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.