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Table of Contents
ORIGINAL ARTICLE
Year : 2020  |  Volume : 52  |  Issue : 4  |  Page : 132-138

Effect of mindfulness-based stress reduction occupational therapy program in parents of children with autism spectrum disorder: An interventional study


1 Occupational Therapy Training School and Centre, LTMMC and GH, Sion, Mumbai, Maharashtra, India
2 Autism Intervention Centre, LTMMC and GH, Sion, Mumbai, Maharashtra, India

Date of Submission19-Jul-2020
Date of Acceptance19-Jan-2021
Date of Web Publication22-Apr-2021

Correspondence Address:
Sushant D Sarang
505, Soham, Plot 66, Sector New 50, Nerul, Navi Mumbai - 400 706, Maharashtra
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/ijoth.ijoth_25_20

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  Abstract 

Background: Raising a child with autism spectrum disorder (ASD) is highly demanding. Parents of children with ASD show increased parenting stress. This may lead to parental mental health problems, such as symptoms of stress, anxiety, and depression. Stress can affect the parents functioning and also hinder the ASD child's progress. Jon Kabbat Zinn defines mindfulness as a mental state achieved by focusing one's awareness on the present moment, while calmly acknowledging and accepting one's feelings, thoughts, and bodily sensations, used and helps to increased coping and decreased reactivity to physical and emotional difficulties. Objectives: The current study aimed at finding the effect of a mindfulness-based stress reduction-occupational therapy (MBSR-OT) program on psychological functioning (stress, anxiety, depression, mindfulness, and psychological wellbeing) in parents of children with ASD. Study Design: A one-arm interventional study with subgroup analysis was conducted. Methods: Sixty parents of children diagnosed with ASD were included in the study. Parents diagnosed with schizophrenia, intellectual disability, dementia, or receiving treatment for any mental illness were excluded. All the parents were scored on the following outcome measures: Perceived Stress Scale, Mindful Attention Awareness Scale, Ryff's Psychological Scale, and Hamilton Anxiety and Depression Scale. Data were analyzed using Windows-based R-Programming software. A paired t-test was used to analyze the data. Results: When results were analyzed, it was found that there was a significant improvement in the levels of stress (at baseline: mean ± standard deviation [SD] = 20.54 ± 4.89, 95% confidence interval [CI]:18.8–22.3; postintervention mean ± SD 10.96 ± 2.32, 95% CI: 10.1–11.8, P = 0.00), mindfulness (at baseline: Mean ± SD = 4.37 ± 0.90, 95% CI: 4.05–4.69; postintervention: Mean ± SD = 5.27 ± 0.70, 95% CI: 5.02–5.52, P = 0.00) psychological wellbeing (at baseline: Mean ± SD = 170.46 ± 25.54, 95% CI: 161–180; postintervention: Mean ± SD = 190.77 ± 24.53, P = 0.05, 95% CI: 182–200), anxiety (at baseline: Mean ± SD = 14.15 ± 5.72, 95% CI: 12.1–16.2; postintervention: Mean ± SD = 190.77 ± 24.53,95% CI: 182–200, P = 0.00) and depression (at baseline: Mean ± SD = 7.77 ± 3.90, 95% CI: 6.37–9.17; postintervention: Mean ± SD = 3.35 ± 2.94, 95% CI: 2.3–4.4, P = 0.00). Conclusion: MBSR-OT program can help reduce stress, anxiety, and improve the psychological wellbeing of parents having children with ASD.

Keywords: Autism Spectrum Disorder, Mindfulness, Parents


How to cite this article:
Sarang SD, Karnam AG, Vanmali BA, Phulpagar PR. Effect of mindfulness-based stress reduction occupational therapy program in parents of children with autism spectrum disorder: An interventional study. Indian J Occup Ther 2020;52:132-8

How to cite this URL:
Sarang SD, Karnam AG, Vanmali BA, Phulpagar PR. Effect of mindfulness-based stress reduction occupational therapy program in parents of children with autism spectrum disorder: An interventional study. Indian J Occup Ther [serial online] 2020 [cited 2021 Oct 18];52:132-8. Available from: http://www.ijotonweb.org/text.asp?2020/52/4/132/314217


  Introduction Top


Autism spectrum disorder (ASD) is characterized by difficulties in social communication and interaction, and repetitive and restrictive behavior patterns, interests or activities with a global prevalence of 1 in 64 people.[1],[2],[3] Raising a child with ASD is highly demanding. Parents of children with ASD show increased parenting stress as compared to parents of typically developing children and to parents of children with other disabilities, which leads to parental mental health problems.[4] Furthermore, parenting stress and behavior problems of children with ASD are dependent on each other.[4] A wide network of interrelated factors contributes to parental stress: Level of child's functional ability and behavior, limited social supports, lack of socio-economic resources, poor family functioning, as well as psychological and physical health.[5] It is very crucial to address the stress of parents having a child with ASD. Mindfulness has been simply defined as “moment-to-moment awareness.”[6] This approach focuses on non-judgmental interpretation of events, and acceptance of the present situation using mindful meditation practices and gentle stretching.[7] The 8-week mindfulness-based stress reduction-occupational therapy (MBSR-OT) program was tailored to meet the needs of parents of children with ASD and was developed based on the MBSR-OT program. The current study was thus aimed to improve psychological functioning in parents of children with ASD.


  Methods Top


The current study aimed at investigating the effect of a MBSR-OT program on psychological functioning of parents of children with ASD. It was a one group interventional study. Parents whose children were diagnosed with ASD were included in the study. Parents diagnosed with schizophrenia, intellectual disability, dementia, or receiving treatment for any mental illness was excluded. Ethics approval was obtained from the Institutional Ethics Committee. Data were collected between July 2019 and August 2019. All the parents were explained about the study and were asked to sign an informed consent form. Parents who could read and write the English language completed the questionnaires by themselves. The therapist administered the questionnaires for the parents unable to read and write English.

At baseline and after completion of the MBSR-OT program all the parents were assessed on the following outcome measures:







  1. i.The Mindful Attention Awareness Scale[8] is a unidimensional, 15-item instrument, rated on a 6-point Likert scale (almost always to almost never). Higher scores indicate increased mindfulness, related to the level of awareness and attention to present events
  2. Perceived Stress Scale (PSS)[9] is a 14-item instrument rated on a 4-point Likert scale (almost never to always), which evaluates the perception of stressful events. An example item is, “In the last month, how often have you felt nervous and stressed?” We added the scores of all questions to calculate total scores, inversely calculating items with positive connotation against the stress (0 = 4, 1 = 3, 2 = 2, 3 = 1, 4 = 0). The PSS showed adequate internal consistency (α = 0.82)
  3. The Ryff's Psychological Well-Being Scale (PSW)[10] is a psychometric inventory consisting of 42 items in which respondents rate statements on a scale of 1-6, where score 1 indicates strong disagreement and 6 indicates strong agreement. The Ryff's Scale is based on six factors, specifically, autonomy, environmental mastery, personal growth, positive relations with others, purpose in life, and self-acceptance. Higher total scores indicate higher PSW
  4. Hamilton Anxiety Rating Scale[11] measures the severity of anxiety symptoms. It consists of 14 items, each defined by a series of symptoms, and measures both psychic anxiety (mental agitation and psychological distress) and somatic anxiety (physical complaints related to anxiety). Each item is scored on a scale of 0 (not present) to 4 (severe), with a total score range of 0–56, where <17 indicates mild severity, 18–24 mild to moderate severity, and 25–30 moderate to severe
  5. Hamilton Depression Rating Scale[12],[13] consists of 17 items scored on a scale of 0–4. Scoring is based on the 17-item scale and scores of 0–7 are considered as being normal, 8–16 suggest mild depression, 17–23 moderate depression and scores over 24 are indicative of severe depression. All the parents who met the inclusion criteria attended the program once a week for eight weeks. The therapy program was designed as per the needs of parents of children with ASD [Refer Appendix].


Data Analysis

Data were entered into Microsoft Office Excel (version 2007) in a spreadsheet which was prepared and validated for the study data to avoid errors. Data were entered and checked for errors and discrepancies. Data analysis was done using “R Studio at Vienna, Austria in the year 2011 and Excel. The level of significance set at the outset of the study was P < 0.05, and 95% confidence interval (CI) values were computed.


  Results Top


A total of 60 parents were enrolled for the study, out of which 58 parents agreed to participate. Out of the 58 participants, only 30 parents completed the study. A subgroup data analysis for the parents who did not complete the MBSR-OT program was done [Figure 1].
Figure 1: Parents Enrollment Flow Chart

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Out of the parents who completed the MBSR-OT program 18 were female and 12 were male. The mean age of females was found to be 38.57 years with a standard deviation (SD) of 10.14 and mean age of males was 38.43 years with a SD of 10.33 [Table 1]. Parents who completed the program were evaluated for stress (mean ± SD = 20.54 ± 4.89, 95% CI: 18.8–22.3), mindfulness (mean ± SD = 4.37 ± 0.90, 95% CI: 4.05–4.69), psychological wellbeing (mean ± SD = 170.46 ± 25.54, 95% CI: 161–180), anxiety (mean ± SD = 14.15 ± 5.72, 95% CI: 12.1–16.2), and depression (mean ± SD = 7.77 ± 3.90, 95% CI: 6.37–9.17). In these parents, postintervention significant reduction was found in levels of stress (mean ± SD = 10.96 ± 2.32, P = 0.00, 95% CI: 10.1–11.8), anxiety (mean ± SD = 6.35 ± 4.66, P = 0.05, 95% CI: 12.1–16.2), and depression (mean ± SD = 3.35 ± 2.94, P = 0.00, 95% CI: 2.3–4.4) while there was improvement in mindfulness (mean ± SD = 5.27 ± 0.70, P = 0.00, 95% CI: 5.02–5.52) and PSW (mean ± SD = 190.77 ± 24.53, P = 0.05, 95% CI: 182–200) [Table 1].
Table 1: Association between Psychological Functioning Factors Pre and Post-Intervention of Parent Who Completed Eight Sessions

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Out the 28 parents who attended <4 sessions 12 were female with a mean age of 37.02 years and SD 11.81 and 16 were male with a mean age of 36.87 years and SD of 12.15 [Table 2]. At baseline data of parents who completed < 4 sessions were analyzed for stress (mean ± SD = 19.42 ± 4.54, 95% CI: 17.7–21.1), mindfulness (mean ± SD = 4.42 ± 0.96, 95% CI: 4.06–4.78), psychological wellbeing (mean ± SD = 177.80 ± 21.47, 95% CI: 170–186), anxiety (mean ± SD = 13.07 ± 3.81, 95% CI: 11.7-14.5), and depression (mean ± SD = 7.57 ± 2.54, 95% CI: 6.63-8.51). When results were analyzed for these parents there was found to be a decrease in the levels of stress (mean ± SD = 16.42 ± 4.41, P = 0.03, 95% CI: 14.79–18.05), anxiety (mean ± SD = 10.38 ± 3.99, P = 0.03, 95% CI: 8.9–11.9), depression (mean ± SD = 5.61 ± 2.53, P = 0.00, 95% CI: 4.67–6.55), while they showed improvement in mindfulness (mean ± SD = 4.97 ± 0.85, P = 0.00, 95% CI: 4.65–5.29) and PSW (mean ± SD = 190.97 ± 21.48, P = 0.00, 95% CI: 183–199) [Table 2].
Table 2: Association between Psychological Functioning Factors Pre and Post-Intervention of Parent Who Completed Less Than Four Sessions

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  Discussion Top


Parents of children with ASDs are at an increased risk for acute and chronic stress compared to parents of children with other developmental disabilities and parents of children without disabilities.[14]

Several studies reported increased psychological distress, including depression, anxiety, and components of stress, such as decreased family cohesion and increased somatic complaints and burnout, among parents of children with autism and related ASDs in comparison to parents of typically developing children. Family members are often the primary caregivers for autistic adults and this responsibility may impact on the parents wellbeing and quality of life.[15] A peer-review which included 25 independent studies, conducted by BurgdorfV, Szabó M and Abbott MJ stated that the PSW of parents and children is compromised in families characterized by greater parenting stress.[16]

The current study aimed at finding the effect of mindfulness-based occupational therapy intervention in parents of children with ASD. After the completion of study, data were analyzed for parents who completed the therapy program and also a subgroup analysis was done for parents who attended <4 sessions.

At baseline, the participant's level of perceived stress was moderate to severe, and they reported more anxiety than depression. Parenting a child diagnosed with autism is a major life challenge that requires ongoing coping skills. Attitudes toward the child's diagnosis can naturally be very negative at first, and require tremendous adaptation to adjust. It often creates elevated psychological distress that can last for years as the parent copes with the child's condition and often tries multiple treatments. Psychological adjustment to having one's child diagnosed with an ASD has important implications for a parent's mental health.[17],[18]

Practicing mindfulness results in a significant improvement in individual emotional well-being, in particular, mindfulness practice has been particularly effective in reducing anxiety and depressive symptoms, the very aspects of well-being with which parents of children with ASD often struggle.[19]

Further in the study, it was found that the psychosocial functioning of parents was found to be on the lower side at baseline. Unmet parent carer mental health needs pose a significant risk to the psychological, physical, and social well-being of the parents of the child affected by ASD and jeopardize the adaptive functioning of the family as well as the potential of the child affected by ASD.[15]

Post intervention, there was a decrease in the level of perceived stress, anxiety, and depression. while their PSW and mindfulness improved [Table 1]. A recent study with parents of children with ASD found that the stress level of parents who were randomized to a mindfulness intervention decreased to a greater extent than among those who were randomized to a parenting-skills intervention.[16]

In another recent experimental study that investigated the impact of a mindfulness intervention on emotional well-being outcomes of parents and educators of children with disabilities, mindfulness had a mediating effect on well-being outcomes, including stress, anxiety, depression, personal growth, emotion regulation, self-compassion, quality of parent–child interaction, forgiveness, and empathic concern.[19],[20],[21],[22],[23]

It was also found that mindfulness was lower preintervention and there was a significant improvement in the level of mindfulness postintervention. A study by Gawrysiak et al. concluded that MBSR programs improve mindfulness in parents with lower baseline mindfulness and emphasizes on assessing the multiple facets of mindfulness.[24]

Mindfulness-based occupation therapy intervention had a significant effect on improving Psychological functioning postintervention [Table 1]. This finding is supported by a study conducted by Janssen et al. which concludes that MBSR may help to improve psychological functioning.[25]

On the other hand, results in parents who attended <4 sessions demonstrated that there was a decrease in the level of perceived stress, anxiety, and depression refer to [Table 2]. While their PSW and mindfulness improved the findings can be supported by a study conducted on parents of children diagnosed with ASD, where a 2-day workshop was conducted where they were led through exercises based on MBSR. Results demonstrated a decrease in depressive symptoms and psychological distress from pre- to post-intervention. Parents also reported an increase in self-esteem and active coping and a decrease in stress. Thus, parents of children with ASD may benefit from practicing mindfulness as it contributes to an increase in multiple aspects of wellbeing.[26]

Thus, practitioners who address the state of the parent's mental health and PSW will enhance the health-related quality of life of the parent carers, their families, and their child with ASD.[27]

Future Suggestions

Studying the effect of MBSR-OT program for the long term will help generalize the findings.


  Conclusion Top


The study highlights the usefulness of MBSR-OT intervention on psychological functioning in parents of children with ASD. MBSR-OT program can help reduce perceived stress, anxiety, and feelings of depression, improve mindfulness, and maintain PSW in parents of children with ASD.

Acknowledgment

We sincerely thank Dr. Mohan Joshi Sir, Dean LTMMC and LTMGH for granting permission to conduct this study.

We express our sincere gratitude to Dr. Rashmi Yeradkar, Associate Professor and Incharge, Occupational Therapy Training School and Centre, LTMMC and GH, for her kind support and allowing us to conduct the study.

We thank Dr. Mona Gajre, Professor, Department of Paediatrics, LTMMC and GH and staff of AIC for their co-operation and constant support.

We thank all the parents who gave their valuable time to participate in the study.

Financial Support and Sponsorship

Nil.

Conflicts of Interest

There are no conflicts of interest.


  Appendix Top


The MBSR-OT program was developed from the original MBSR program. The MBSR-OT program was developed keeping in mind the needs of parents of children with ASD. The therapy sessions were structured such that they allowed the parents to express their limitations in dealing with situations which were related to parenting a child with ASD. Also, the examples and the concepts were explained that were pertaining to parenting a child with ASD. The following is an 8-week program that was incorporated on all the parents

The parents were required to attend one session of MBSR-OT program per week for 8 weeks.


  Therapy Protocol Top


Week 1: Coming to Our Senses

The first week parents were introduced to mindfulness and some exercises that are intended to make them much more aware of what is going on in their bodies. They were introduced to some key-concepts like beginners mind, mind-wandering and mindfulness, automatic pilot and getting in touch with our bodies. The intention was to start to move away from automatic pilot, the inner thoughts and feelings are drive us, and to become more in touch with the world around. A guided body scan exercise was introduced and they were explained how to eat mindfully and perform activities mindfully.

Homework-the parents were asked to practice body scan regularly. They were asked eat one food item mindfully and perform any activity of daily living (showering, dressing, grooming etc.) mindfully. Also they were asked to maintain a journal of their experiences in that week.

Week 2: Exploring Our Edges, and Coming Home to Our Bodies

The aim of this week was to explore the limitations understand a little more about how our reactions, and stay more present. By getting a greater sense of our direct experience, we start to build skills that will eventually help us to learn to move away from automatic pilot, take the controls and begin to steer more skillfully around the obstacles we all face. Some new concepts of non-striving, being mode and doing mode were established. A breath meditation exercise was introduced.

Homework-they were asked to continue to practice body scan and breathe meditation at least once a day. They were asked to choose a different activity to do mindfully and asked to maintain a pleasant events diary in which they were asked to write about any experience they found pleasant and what were their feelings and body sensations at that time.

Week 3: Being Present

Staying in the present moment and not getting lost in thoughts or daydreams is an important skill to practice. This session looks at meditation practices that can be long or short. There were also some mindful movement practices that help to gently wake up to our bodies. The barriers or edges that are created in daily life due to personal limitations that refrain one from living to the fullest were addressed. A three-step breathing exercise was taught.

Homework-they were asked to practice body scan exercise every alternate days and on other days practice mindful movement. Also they were asked to maintain an unpleasant events diary and told to write about any unpleasant experiences that week.

Week 4: What is Stress?

This session we looked at how we respond to stress. Stress is not just caused by the events in our lives, but also in the way we deal with them. Different people respond to the same events in different ways. This session focused on teaching the parents how to use the practices in daily life. The concept of responding rather than reacting was introduced. They were explained how body, thoughts, feelings and action are interrelated and how one can set a positive cycle of these factors. Identifying stress areas in the body and using body scan to overcome it was taught. Establishing a regular sitting practice was encouraged.

Homework-they were asked to practice mindful movement every alternate days. On other days they were asked to engage in sitting practice. They were taught how to apply three-step breathing exercise in stressful events and continue with unpleasant events diary.

Week 5: Responding More Effectively to Stress

This session looked at how the skills can be transferred that were develop in practices such as meditation into daily life and deal more effectively with difficult situations. By bringing greater awareness of thoughts, feelings and sensations to bear, less energy is wasted and approach problems more effectively. The concept of approach and avoidance in terms of stressful situations was explained. Some foundational attitudes (being non-judgmental, being kind, trust, non-striving, patience, letting-go and acceptance) and their importance was explained. An activity of exploring a space was conducted.

Homework-they were asked to continue sitting practice and mindful movement and exploring one space. They were asked to maintain a stressful communications diary and reflect on them.

Week 6: Dealing with Others

Often it is our relationships that cause the most stress, and mindful communication can help us deal more effectively with others. This session looked carefully at some aspects of communication in stressful situations, and through some simple practices learns how to deal more skillfully with themselves and others. Concepts of mindful communication, mindful speech, mindful listening and acts of kindness were introduced. An activity of metta learning or loving kindness meditation was conducted.

Homework-they were asked to continue formal practice daily, try one metta (loving kindness) meditation, try one act of kindness each day towards themselves, try one act of kindness each day towards someone else and try bringing mindfulness to at least one communication activity

Week 7: Taking More Care of Ourselves

We often pile pressure on ourselves, and forget to relieve that pressure. We can do that until we come to breaking point. This session looks at how one can mindfully rebalance their lives. Looking with a child's eye at the world helps one connect to the world and look at things from a non-judgmental perspective. Also, how one can become their own critic and analyze self was explained. Working on our attitudes was stressed on. The parents were asked to consider their daily habits and their impact on life. They were encouraged to change those habits that had a negative effect on them.

Homework-they were asked to continue a formal practice daily, either sitting or body scan. Each day, do one thing differently. Do something new one evening. Review what they have learnt from the course, and bring it to the final session.

Week 8: Keeping it Up

The last session focused on addressing the difficulties that arouse throughout the program. The parents were encouraged to continue the practice. All the queries were addressed. Before we finished, we looked at how each one can keep up the practices that have been learned, and grow in awareness.

 
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Abstract
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