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South African Journal of Occupational Therapy

versão On-line ISSN 2310-3833
versão impressa ISSN 0038-2337

S. Afr. j. occup. ther. vol.49 no.1 Pretoria Abr. 2019

http://dx.doi.org/10.17159/2310-3833/2019/vol49n1a7 

SCIENTIFIC ARTICLES

 

Parents' voices: experiences and coping as a parent of a child with autism spectrum disorder

 

 

Gwen ReddyI; Deborah L FewsterII; Thavanesi GurayahIII

IBOT (UDW), MOT (UKZN) https://orcid.org/0000-0002-1966-2042 Clinician at Peter Pan School and private practice
IIBOT (UDW), MPhil in Group therapy https://orcid.org/0000-0002-9424-8976 Lecturer, Occupational Therapy Department, University of KwaZulu-Natal, Westville Campus
IIIBOT (UDW), MOT (UKZN) https://orcid.org/0000-0001-9005-6355 Lecturer, Occupational Therapy Department, University of KwaZulu-Natal, Westville Campus

Correspondence

 

 


ABSTRACT

INTRODUCTION: Autism Spectrum Disorder (ASD) requires a lifetime commitment of care and imposes significant stressors on families. This study aimed to understand the lived experiences and coping strategies of parents with children diagnosed with ASD. The study addressed one of the objectives of a larger project
METHODS: An exploratory, qualitative study using purposive sampling to recruit parents of Children with ASD was used. Six individual interviews and one dyad interview provided the data for this study. Data were interpreted using thematic analysis
FINDINGS: The study identified two major themes namely experiences of ASD and coping with ASD. Dealing with ASD was characterised by significant challenges associated with resource limitations, poor guidance from health professionals, protracted diagnostic processes, reduced awareness of ASD and stigma for families. Parents were resilient and empowered themselves to cope with the tough journey, with support systems providing a buffer to families. Parents identified support, resources and awareness as pivotal needs. Positive ramifications from parenting a child with ASD were the development of positive personality traits, increased spiritual faith and a greater appreciation of life. The study emphasised the need for increased resources and support for families to cushion their experiences of ASD

Key words: Autism, lived experiences, coping strategies, parents, challenges


 

 

INTRODUCTION

Autism spectrum disorder (ASD), a global phenomenon affecting 1 in 160 children, is classified as a developmental disability with distinct features1. Although the prevalence of ASD in Africa is unknown, it is predicted that 2% of the South African (SA) population is affected by ASDM. Springer et a15, in their retrospective review of 1010 medical records in 2013, projected that there are over 270,000 people with ASD living in SA, with 5000 new cases per year5. Although research is limited, they found that ASD was progressively increasing, and SA is recognised as a leader in ASD research in Sub-Saharan Africa6,7,8. The increased incidence of a child with ASD (CASD) warrants further research to reduce the burden of care and discover more efficacious interventions to promote positive outcomes for people living with children with ASD.

ASD presents with persistent deficits in social communication and interaction, and restricted or repetitive patterns of behaviour in early childhood9. A diagnosis of ASD is confirmed once impairment is noted in everyday functioning. ASD requires an enduring commitment from families given the pervasive nature of the con-dition10. Children present with behavioural and sensory difficulties and impaired communication and self-care11, which have significant repercussions on daily life as the family strives to manage the child. Families alter routines and deal with the stigma from the public12, while parents sacrifice careers13. Occupational therapy intervention is aimed at moderating daily life in order to reduce the impact of the stressors on the family and the CASD.

This study informed a broader study which explored the lived experiences and coping strategies of families living with a child with autism spectrum disorder. One aspect of the study concentrated on siblings whilst this paper explored the realities of parents, with both groups originating from the same family, making it the first study in South Africa to engage parents and siblings from one family to provide unique, in-depth insights from families. This study aimed to understand the lived experiences and coping strategies of parents of a child with ASD in order to inform intervention programmes for ASD. It will supplement the local body of research and knowledge on the effects of ASD on families and facilitate more specific and relevant interventions.

 

LITERATURE REVIEW

In a study conducted by Divan et al14 parents often reacted with shock and distress upon receiving an ASD diagnosis. Although receiving a diagnosis allowed initial relief, greater awareness of the child's needs and access to specialised services15, the parents were faced with the challenges unique to ASD. The permanence of ASD demands a lifelong commitment of care; dealing with stressors and lifestyle changes to manage the child16. Current international and local research highlight resource limitations for healthcare and schooling, and inevitable changes within the family unit7,10,16-19. Changes included, but were not limited to, catering to the ritualistic needs of the child20,21, vocational changes of parents to accommodate the child18,21 and social isolation of the family14.

The burden of care placed on families dealing with ASD resulted in a strain on spousal relationships and those with typically developing siblings. Given that families focused on the CASD22 and restructured daily life to meet the demands of the child16,l7,23, there is a reduction in time available to spend on other family relationships. Family challenges extended to financial burdens given the additional costs encountered for a CASD10,14. Mothers more specifically endure a greater burden in the form of fatigue, depression and anxiety often neglecting their own needs for intervention24,25,26. Similarly, fathers are not immune from the impact of ASD.

A study in the United States measured the psychological well-being, pessimism and coping of 135 fathers of adolescents and young adults with ASD. The fathers of CASD had higher levels of depressive symptoms than other fathers and the overall study recommended that services be designed for fathers of CASD27. Although there is a dearth of literature in the experiences of fathers with CASD it is known that they experienced reduced quality of life, distress in that they cannot protect their CASD and experienced strain in setting up social networks25,27.

Coping is a dynamic process using cognitive and behavioural appraisal to deal with challenges which require more than an individual's available resources and necessitate an adjustment of behaviours, thoughts or emotions to facilitate coping28. Coping has two typologies and functions namely, problem-solving coping which aims to modify the person or environment to effect change, whilst emotion-focused coping aims to alter the individual's approach to the stressful environment, or reduce the adverse emotional toll on an individual28. Parents used various coping strategies to manage the child with ASD14 including distraction, problem-focused coping22, avoidance or emotion-focused coping29. Sarria and Pozzo's29 study of 127 mothers and 90 fathers reported that mothers used more positive and problem solving strategies whilst fathers tended to use avoidant strategies. Adaptive coping strategies allowed for a higher family quality of life30 since it generated effective, productive responses to stressors31 whilst avoidant coping strategies were maladaptive29. In a study of 180 families in a South African context16, it was reported that family quality of life increases with regular routines. Access to social support and respite services, which is the time away from the child, were important coping strategies that facilitated family adaptation by allowing parents time together, thereby reducing stress and social isolation23. In the South African context, limited resources for education, healthcare and support services will challenge parental coping strategies32 and must be facilitated at the family level with support for all family members. Individual personality traits influenced the strategies employed for coping33. Self-compassion had a buffering effect on depression and parental stress becoming a predictor for parental well-being33. Vassallo found that a positive factor in improving emotional distress involved equipping parents with a means to relate to their child whilst managing a parent's level of distress and can facilitate positive outcomes and coping with a CASD10,26. Falk, Norris and Quinn26 stress the importance of intervention that understands and acknowledges the psychological well-being of parents in a more holistic system of focusing on the parents and the child.

Positive reappraisal, in terms of creating positive meaning from one's experience, another strategy used by parents, was found both locally and internationally16,30. Local research found that positive meaning is derived from parenting the CASD7,19. Spirituality, tolerance and appreciation of life intensified and parents became more confident in their skills29. Personality traits like empathy, acceptance and patience were augmented through the experiences of adversity related to ASD34. Acceptance of the diagnosis was a positive influence on parental adjustment35. Mothers appeared to experience a higher amount of positive gain than fathers29. This is theorised to be the effect of the mother generally taking on the role of the primary caregiver thus affording mothers an opportunity for personal growth and strength29. Despite the challenges and the need to find ways to cope some parents found positive meaning in raising a CASD7,19.

 

METHOD

Design: A qualitative phenomenological perspective with an interpretive design steered the descriptions of the parents' experiences of having a CASD. The interpretive paradigm was conducive to conveying meaning to participants' experiences36. The study set out to explore the lived experiences and coping strategies of parents of children with ASD.

Research Context: The study was conducted in KwaZulu-Natal (KZN), South Africa. Research participants were recruited via three schools for Learners with Special Educational Needs (LSEN) .

Participant Selection: The research population comprised of parents with a CASD. All parents of children with ASD who attended the participating schools were invited to participate in order to acquire a diverse sample. Eligibility criteria included a confirmed diagnosis of ASD by a medical professional, and the CASD residing with the parent/s. Purposive and snowball sampling strategies were used to recruit participants. The sample size was eight parents (n=8).

Data Collection: A semi-structured interview schedule was developed by extracting themes from literature on the effects of ASD on families and the coping strategies employed. Themes included coping and challenges, relationships within the family, issues around the diagnosis, and personal challenges for family members informed the questions. The relevance of the information gleaned from the interview schedule was tested in a pilot interview and found to be sufficient for data collection, as it elicited the information to answer the research questions.

Six individual semi-structured interviews including the pilot interview, and one dyad interview with both parents were conducted by the researcher.

The researcher conducted the interviews, and ensured that all participants' views were elicited, and passive participants were encouraged to actively engage. The interview was guided by an interview schedule and questions such as "what is your understanding of ASD and what problems is your child experiencing" were asked. Information from the exploratory study was included in the main data set, which is an acceptable practise if methodology remained consistent28. Interviews were conducted at venues that were convenient for the participants, such as their homes, nearby offices or the researcher's practice. External distraction was controlled by selecting quiet, private venues, and a "Do Not Disturb" sign was pasted on the door. Moreover, conducting interviews on a Saturday limited external distractions as it was not a working day, and parents came without their children. Interviews were recorded with the parents' consent.

Data Analysis and Interpretation: Audio recordings were transcribed verbatim. Thematic analysis as stipulated by Braun & Clarke37 was used to analyse data, which allowed identification, analysis and description of the themes contained in the data set to inform the report. Bronfenbrenner's Ecological Systems Model38 guided analysis and interpretation of data using a deductive approach. Factors that were specific to the child or microsystem38, such as the severity and type of symptoms were analysed in relation to the stressors presented to families. The individual characteristics of parents such as personality traits, coping styles and resilience were considered with regards to parental coping styles. Family characteristics such as the number of children and support systems from extended family and community (mesosystem38) were analysed in relation to family coping. Exosystemic factors30 that were enabling or barriers to coping such as the education system, parental employment and governmental policies and macrosystemic38 effects of beliefs, ideologies and customs were considered in relation to family coping. Lastly, the chronosystemic effects that encompass changes over time and the influence on the families' coping were evaluated.

Ethics: Approval for this study was obtained from the Biomedical and Research Ethics Committee, BREC: 065/16, at the University of KwaZulu-Natal. Written permission was received from the Kwazulu-Natal Department of Basic Education to access schools for Learners with Special Educational Needs (LSEN) and from principals to access their learners. Only three principals consented.

All parents of children with ASD received an invitation to participate via the school. Parents who indicated interest to participate were contacted for an interview. At the interview, consent was discussed with parents and issues of confidentiality, ethical responsibilities of the researcher, the use of pseudonyms to protect identities and their right to withdraw were highlighted. Trustworthiness with respect to credibility, transferability, dependability and confirmability as identified by Guba39, were maintained with thick descriptions of the context and participants, bracketing, a reflective diary, and peer discussions with researchers.

 

FINDINGS

The demographics of the participants are tabulated above. All families resided in urban areas. All children, except one child, was enrolled at an LSEN school. One CASD was from a single parent family and only one child with ASD was female. The children had varying degrees of severity of autism spectrum disorder.

The data revealed two themes. The first theme described the lived experiences of parents with a child with ASD and the second related to the efforts to cope when managing a child with ASD. (See Table 1 above).

 

THEME 1: LIVED EXPERIENCES OF PARENTS OF A CHILD WITH ASD

Illustrated in Figure 1 below are the categories which captured the daily experiences of parents navigating ASD.

 

 

The Process of Diagnosis

The diagnostic journey was protracted, emotional and filled with contradictions. Parents, already questioning their own capabilities, faced professionals who presented differing opinions. Even when I came with a letter that said he is autistic from Dr Mary, Dr. Grey said no he is a slow learner (Princess). All participants except one heard the term ASD for the first time. I was watching Oprah... they were talking about autism... all the signs were there on my son (Briella).

In Dakota's case, diagnosis took two years following numerous consultations with health professionals. Jonathan was angry with professionals for the late diagnosis which took three years. I felt that these doctors didn't pick up anything (Jonathan). Interestingly, the diagnostic process was less than a year in the private sector, in contrast with the public sector which took years. In this six months for me it's better because I have the medical aid...can you think like more as a person who doesn't have money? (Princess)

Parents reported that interactions with health professionals defined their experiences with ASD, and professional attitudes had a profound impact on parents. Viola's paediatrician asked her: why can't you discipline your child, which compounded an already stressful situation. Empathetic and knowledgeable professionals were a protective factor for parents and provided support during the journey. Emotionally connected, empathetic, reassuring, supportive.they understood the impact, the enormity of what that [ASD] actually meant (Viola). Guidance and support after diagnosis was minimal, leaving parents to fend for themselves. It appeared that professionals themselves lacked adequate knowledge on the way forward. One parent consulted a psychologist for two years, receiving no direction about schooling, and independently approached a LSEN school for placement for her child. Viola's comment: once the parent is given the support.. .resources, everything moves much faster.once that becomes a stumbling block.it takes much longer to get going illustrated the importance of timeous professional support.

The ASD diagnosis evoked negative emotions of shock, blame, denial, and depression, leaving parents overwhelmed by the magnitude of the situation. I went into...severe depression...I used to get panic attacks (Viola). I was thinking to hang myself (Princess). Parents felt relieved as they understood their child's behaviour and could move forward. Dakota explained: I did feel relief. I understand.I know he's not a naughty child. The realisation that parents were not to blame was liberating.

Cultural explanations for ASD included ineffective parenting and poor discipline, which frustrated and angered parents. Since there was no visible disability, the notion of poor discipline was strengthened, and parents were exasperated by this. I got three children, the other two are perfectly well disciplined. Can you really think it's an issue of discipline? (Viola). Certain cultures favoured community discipline, thus exposing child to abuse. If a child misbehaves, it's like you don't teach the child correctly how to behave...I know he can be abused (Thandi). Frustration with cultural practices was noted, and two parents did not allow traditional ceremonies. I did not approve.my son ended up not going there. but then I'm also a nurse... it's hard for me to actually believe that he is a sangoma (Thandi).

Religious explanations rationalised that ASD was a result of witchcraft and demon possession. I went to a Sai Baba place...she said she's taking out a demon... the pastor came and said he's taking out another demon (Raquel). She had problems when she was two months old with witchcraft (Nicole). Other families believed that the child was a gift from God, as Princess declared God gave me another special child.'

The Impact of ASD

All parents reported that ASD was pervasive and life revolved around the CASD with a 'help him' attitude prevailing as parents reorganised their lives. My mind set was just helping him (Raquel). If you have a child with autism...your life just stops (Princess), depicted the immense sacrifice for the child. Acceptance is one thi