Using narrative therapy with children experiencing developmental disabilities and their families in India: A qualitative study

Abstract

Narrative therapy is a respectful and culturally relevant form of psychotherapy. Internationally, there is an increasing use of narrative therapy with diverse populations; however, there is limited documentation within the Indian context. The intention of the study was to understand experiences of children and their families during their participation in narrative therapy at Ummeed Child Development Center in Mumbai, India. Twelve participants were recruited for individual interviews: four children, who received counseling at Ummeed Child Development Center for a minimum of 6 months, and eight family members. Thematic analysis of data revealed three themes: Working In Partnership reflected the value of therapy being a collaborative process; Practices That Open Up Possibilities highlighted skills of children and their families that became visible through counseling; and Taking Control And Advocacy revealed how families experienced a sense of control over their own lives and an interest in advocating for others with similar lived experiences. The study has brought to light how narrative therapy can make possible change in lives of children and their families and wider society. In an international context, these findings serve to document narrative therapy as a beneficial modality for mental health practitioners to use with children experiencing developmental disabilities and their families.

Keywords

Child developmental disabilities family narrative therapy

Narrative therapy, a form of psychotherapy, was developed from writings and practices of David Epston and Michael White in the 1980s (Madigan, 2011). A respectful, nonjudgmental, culturally relevant approach to counseling (White, 2007) narrative therapy centers people as the expert of their own lives. It views the person separate from the problem and assumes people have skills, beliefs, values, and abilities that support them to reduce the impact of problems in their lives (Carey and Russell, 2004). Further, narrative therapy holds the key idea that all people are born into stories, and these stories shape their social realities (Combs and Freedman, 2004) and that a person’s culture both influences and acts as a healing mechanism (Morris, 2006).

The Indian culture is influenced by ideas of collectivism and interdependence; wherein family is an integral part in this social structure (Chadda and Deb, 2013). The collaborative nature of narrative therapy acknowledges these collective ways of engaging in the therapeutic process by including all those whom the client deems important. Narrative ideas also take into account multiple realities, belief systems, and perspectives of the client’s background; while making visible for clients how ideas of their culture and external forces play a role in creating the situations to which they are responding. Thus, the therapeutic process incorporates “cultural themes, social injustices, history, gender issues, politics, acculturation issues, immigration, and the politics of therapy” (Morris, 2006).

However, within the Indian context, there is a paucity of literature documenting first-hand experiences of those who have received narrative therapy. Currently, only two articles directly capture experiences of people receiving narrative therapy (Sen, 2019; Vishwanatha and Hirasave, 2009). Although both articles offer insights into experiences of young people receiving narrative therapy, neither specifically include children with developmental disabilities as participants. Hence, the need to better understand how narrative therapy can be used with this specific population, within a broader Indian context. This study sought to answer the question, “What has been the experience of children with developmental disabilities and their parents receiving narrative therapy services at Ummeed Child Development Center (UCDC), Mumbai, India?” The following section reviews the literature that addresses the use of narrative practices and developmental disabilities.

Narrative practices and developmental disabilities

Internationally, researchers have explored the successful use of narrative therapy with children and adults experiencing different developmental disabilities; for instance, intellectual disabilities (McFarlane and Lynggaard, 2009), learning disabilities (Lambie and Milsom, 2010), autism (Olinger, 2010), and attention-deficit/hyperactivity disorder (Robinson et al., 2015). For the purposes of the current study, this section considers the literature specific to child and youth populations.

A study on young people experiencing intellectual disabilities revealed that narrative therapy was effective to support them in discovering skills and knowledge in response to their challenges (Matthews and Matthews, 2005). Betchley and Falconer (2002) considered use of narrative therapy with a young boy experiencing intellectual disability and communication difficulties and highlighted how narrative practices supported discovery of alternative responses to the problem. However, one of the challenges encountered pertained to making the narrative approach more relevant to the young person by reducing reliance on language. The article also emphasized importance of co-ownership of the narrative with other significant individuals in the person’s life. Both these studies shed light on the effectiveness of narrative therapy with young people experiencing intellectual disabilities while emphasizing the necessity of tweaking the practice to meet individual needs.

The applicability of narrative practices with a case presentation of a young boy experiencing learning disabilities was demonstrated in a study by Lambie and Milsom (2010). Similarly, Wolter et al. (2006) conducted a study which revealed integration of narrative practices into language–literacy remediation as effective to address concerns like low self-esteem in young people experiencing language literacy deficits. The two studies are indicative of the usefulness of narrative ideas to address potential concerns that children may experience as a result of a learning disability.

Olinger (2010) considered how narrative practices hold space for skills of parents of children with autism and promote a sense of agency. The findings of the study led to a compilation of a collective document of parents’ skills and know-hows which created more awareness about how to support children experiencing autism. An Indian study explored the use of narrative practices in the context of occupational therapy with groups of children with handwriting difficulties (Shetty et al., 2015). Externalizing the handwriting problem, a narrative therapy technique, allowed children greater insight and responsibility while dealing with their problem.

The literature reviewed offers positive accounts of narrative therapy as a modality to assist children and young people who are experiencing developmental disabilities. However, it also revealed a paucity of research specific to the Indian context.

Aim

To document voices of children experiencing developmental disabilities and their families as consumers of narrative therapy in the Indian context.

Method

Ethical approval from the institutional review board of Kasturba Hospital Research Society, Mumbai, India, was granted in July 2016 (Reference number: IRB/01/2016). The research interviewer was not part of the mental health team at UCDC, which ensured that participants were not coerced to respond in a positive regard and that no “insider-researcher status” influenced interactions with participants (Chammas, 2020). The issue of consent was addressed by taking informed consent from families of the children and assent from the children, after sharing the study intent and answering all participant questions. Participants also consented to giving permission for their interviews to be audio-recorded and transcribed before the start of their interview. Participant anonymity was ensured using pseudonyms and storing consent forms separately from the data.

Setting

The study was based at UCDC, a not-for-profit organization in Mumbai, India, that provides transdisciplinary care to children and families experiencing developmental disabilities using a family-centered approach. The mental health team at UCDC uses narrative therapy to guide conversations with clients.

Population

This study used purposeful sampling (Glaser and Strauss, 2009) to recruit participants for semi-structured interviews. The study population was children and caregivers with children experiencing developmental disabilities. Inclusion criteria ensured that participants had received counseling services for a minimum period of 6 months at UCDC and may have then continued or terminated counseling services. The study required participants who were fluent in Hindi or English for the interview. People who knew the interviewer personally were not recruited to avoid any bias. Flyers inviting families (children and/or their caregivers) were put out at UCDC. Additionally, families were contacted by staff members to inquire about their interest in participation and to share information about the study.

Data collection

Six and four interviews were conducted in English and Hindi, respectively. The conversation followed a predetermined list of open-ended questions (see Table 1). Additional questions were asked to ascertain deeper understandings of participant’s experience; for example, “Can you tell me more about your experience?” or “Can you share a story which would highlight your experience?” The questions were simplified and scaffolded when asked to the child participants.

Table 1.

Interview Questions for Children and their Families.

1. Rapport building/introduction

(a) What made you interested in participating in this study?

(b) Are there any questions that you think I should ask you? I have a lot of questions, but is there a question that would be helpful to learn about your experiences?

2. Counseling experience at UCDC

(a) What has your experience of receiving counseling been?

(b) Are there any moments or conversations that stand out to you? Continued to impact you?

(d) What were the effects of the counseling conversations? Did it make any difference?

(e) Did anyone notice the differences you are talking about? What did they say?

(f) Is this process (the current interview) okay?

3. Summary

(a) Are there any questions I should ask to better understand your experience?

(b) Would you be willing to review a report I write after finishing all the interviews so that I can get your feedback?

Data analysis

Thematic analysis (Braun and Clark, 2006) was used to analyze the data. Thematic analysis can be an essentialist/realist method, which reports experiences, meanings, and the reality of participants; or it can be a constructionist method, which examines the ways in which events, realities, meanings, experiences, and so on are the effects of a range of discourses operating within society (Braun and Clark, 2006). In the current study, thematic analysis, as an essentialist method, was used to document participant experiences of narrative therapy.

Analysis was conducted in English. Interviews were transcribed, coded, and analyzed for emerging themes. To begin, the transcribed interviews were read by the authors to become familiar with the data. The quotes in Hindi were translated into English and back translated by authors. Line-by-line reading of the transcripts helped generate initial codes by the second author (e.g., “locating the context of the problem”). The codes were then reviewed by the first author, who sought clarification where needed. Next, codes were grouped into themes. Initially, seven themes emerged, which included: A Safe Space To Speak About The Problem, The Opening Up Of Possibilities, The Influence Of People, Co-creation Of Safe Spaces, Connection With The Therapist, Child And Parent Empowerment. A secondary analysis by the authors revealed that some themes could be merged (e.g., Co-creation Of Safe Spaces and Connection With The Therapist was merged into the theme Working In Partnership). Through this process, three final themes were generated.

Findings

Participants

Twelve participants (4 children and eight family members) were recruited for the study. In eight interviews, the child or the parent was a participant; however, in two interviews, both child and parent participated. Thus, 10 interviews were conducted among 12 participants. Six mothers and two fathers were recruited for the study. Three children were female and seven male; all had experienced a developmental disability and either represented themselves or were represented by their family members for the purpose of this study. Children’s ages at the time of the interview ranged from 8 to 17 years. The children had one of the following developmental disability diagnoses—autism, intellectual disability, learning disability, or attention-deficit/hyperactivity disorder. All interviews, barring one, were conducted at UCDC. The remaining interview was conducted at the participant’s residence. Interviews lasted for a duration of 60–90 min. The sample size was informed by the data analysis process which suggested no new themes were emerging in the last few interviews.

Three themes that reflect children and their families’ experiences of narrative therapy emerged: (1) Working In Partnership; (2) Practices That Open Up Possibilities; and (3) Taking Control and Advocacy. Working In Partnership made possible change within the therapy room and in the lives of children and their families by exploring Practices That Open Up Possibilities. Taking Control And Advocacy made possible change beyond the therapy room. To support each theme, participant quotes have been used with corresponding pseudonym followed by (C) indicating child or (P) indicating parent.

Working In partnership

Working In Partnership captures the concepts of accessibility, collaboration, connection, and family-centered care. Working In Partnership provided the spring board for sharing of stories and exploring possibilities.

Accessibility of the therapist was key to the partnership families and children experienced. Accessibility was understood as being available in crisis situations, beyond scheduled time of therapy, via phone calls and emails which created a safe space to work collaboratively.

There was another recent incident… we didn’t actually meet up with her but the fact that I can readily SMS her and say I need you, I think there’s a problem in school; that kind of accessibility. Anamika (P)

So that’s my big takeaway from a counseling session I can let the session stop, I can come back at any point of time and there’s no whining about it. There’s no why didn’t you come for so long? There’s nothing. There’s no bureaucracy, there’s no red-tapism. Zeenat (P)

Participants emphasized the value of collaboration and collective effort of the therapist and the child/caregiver as central to the counseling process.

She just hears me out. Whether it was the bullying incident, or I was extremely upset when my father in law passed away because he was a huge support system to me and I had to stop working after that. No, I didn’t have to stop working we took that decision together and I think it’s a marvelous decision for me. Radhika (P)

Participants valued the connection they shared with their therapist, which afforded them comfort and security in sharing their stories. The non-judgment, respect, reassurance, flexibility, and acceptance on the part of the therapist created a safer space to communicate freely about pressing concerns and navigate through their journey. The co-created safe space and respectful communication was experienced as meaningful for children and their families to understand the diagnosis of varying developmental disabilities, as well as to understand what counseling may involve and to make decisions about ways forward in their lives.

The thought of counseling also made me feel that I have a disability. That just made me scared. Then once I started talking I just, you know it made me feel, that it nothing, it’s just a conversation. And, then the conversation made me feel better. Didn’t make me feel like I had a disability. It made me feel I was normal like everyone else. Just, small part of my life, I was going to have to put in some extra effort. Rahul (C).

Another factor that families spoke about was the value of having access to a multidisciplinary team. This feedback lends support to UCDC’s vision of incorporating family-focused care in their provision of counseling all services. A participant shared:

Then we got in touch after the developmental pediatrician, we got in touch with both Suresh and Raju (occupational therapists and mental health workers). They did the first fine motor group skill activity with him. And from then on I think it’s just been a connection. …Raju and Suresh are still connected with our son and I think all of us working as a team to face all his challenges. Radhika (P)

Practices that open up possibilities

Children and families shared how participating in narrative counseling sessions was beneficial in that it opened up multiple possibilities. Specifically, they highlighted three Practices That Open Up Possibilities: questions that support them to shift their understanding of the problem; inquiry to make visible skills, hopes and what is important to them; and bringing in the voices of supportive people.

Participants identified that therapists would ask questions which helped them create a distance between themselves and the problem. Such questions allowed them to experience less blame and remove shame that they often felt when problems were described as being inside of them. A participant shared:

He had said that the anger that comes is bad. So the therapist started asking questions like, ‘Where does the Angry man come from?’ And then they explored that it comes from outside. So let’s control it before it comes. They had made tricks…. The therapist had told me about the conversations she had with my son about the Angry Man. So she mentioned when he speaks about it, ask him questions…. It has reduced significantly. Sheetal (P)

These explorations for children and their caregivers made possible the act of locating the problem in context and allowed them to further examine the effects of the problem on their life.

When we met the counselor she helped us locate the context of the problem which was school. She then helped us explore how the problem she is experiencing at school is having effects in different contexts of our child’s life. Raju (P)

Families and children reported that the practice of focusing inquiry on alternative stories of hopes and dreams, as separate from the problem stories, was supportive and made visible potential skills participants could use to tackle the problem. A participant shared how he found it meaningful to have conversations with his therapist about his hopes which they would document and revisit with the intention of reviewing helpful skills and progress in therapy.

She writes everything, she notes everything. Then about my dream then we just think some of my experiences like what I don’t like and all. She writes and shows me. I like it because you know like sometimes she gets all the papers and we go through them to see and understand what becomes possible. Jayesh (C)

All families reflected on the immense importance of people’s support in their journeys, and they valued change when it was noticeable by others. Participants spoke of how bringing in others’ voices into therapeutic conversations helped make possible richer and more visible preferred stories.

My family is just very happy. And in case of my grandmother she would say that it’s not much of a surprise to her. Because she kind of knew that I would be able to do it. So when she says that I feel very good. Because then I get to know that I have it in me. Rahul (C)

Children and their families valued when the change was noticeable in different contexts, and therapists inquired about the change:

Has the counselor in school noticed the difference? Yes. Has school noticed the difference? Yes. Has the difference come out in his psycho-ed analysis? Yes. So the difference has constantly been measurable from an outside perspective. Radhika (P)

This theme reveals how asking questions can support children and families to shift their understanding of the problem, inquiring to make visible skills, and bringing in the voices of people opened up possibilities for participants in therapeutic conversations.

Taking control and advocacy

This theme describes how children and their families experience control over their own lives and have developed an interest in supporting others with similar lived experiences. Participants shared that through their journey of narrative therapy they experienced greater control and a sense of expertise over their own lives. Participants reflected:

Sometimes when you’re outside and you get these thoughts you start getting scared. Then you don’t want to discuss it with anyone outside. You want to keep it confined, so then, these things help, you know, push it away, like saying stop, you know I don’t want to think of you now. I’ve much better things to think about than this. Rahul (C)

It was like I controlled my anger to a great extent. First two three years I used to get angry but then I changed. Made me control, then my concentration also little bit it has increased. I can’t you know do my studies for a longer time so you know she got that out also like how can I concentrate like when I hear the music continuous and then I can concentrate and study in the one place so make such many things. Jayesh (C)

Participants highlighted how exploring skills, values, and personal commitments with the therapist allowed them to experience a greater sense of control and choice when responding to problems and in living their life

But in a more generic sense you almost figure that there is always going to be storms I guess it is just the level of what the storms are. It could be a really, really, really small storm and maybe you would not even call it a storm but the idea is that there is level of difficulty it maybe you have to deal with and when that goes over there is going to be something else... the idea is that knowing that going forward there is going to be a level of challenge or something or the other you are going to have to work through… for instance it is more impactful if they (therapist) gets you to figure out the solution... it is like your own capacity to fix things. Rohit (C)

Participants also shared that they had an interest in advocating for people with similar lived experiences and developmental disabilities.

I want to help other people. I have been to many hospitals and all I speak and I really want to help the disabled because I’ve been to many hospitals and seen many people. Jayesh (C)

The families mentioned that advocacy and awareness of their counseling experience would hopefully make mental health services more accessible for people. Some of the families expressed hope to advocate for mental health in broader contexts like hospitals, schools, and community meetings in order to make mental health service provision more accessible for other families. Thus, Taking Control And Advocacy captures a sense of empowerment and control participants experienced through counseling.

Discussion

The current study sought to document voices of children experiencing developmental disabilities and their families as consumers of narrative therapy in the Indian context to offer insights to mental health practitioners about the applicability of this approach. The findings revealed three themes: Working In Partnership, Practices That Open Up Possibilities, and Taking Control And Advocacy. These themes could be understood through the lens of narrative ideas such as alternative stories, collaboration, and the importance of agency of clients in the therapy process (White, 2007).

Children and their families appreciated Working In Partnership which facilitated growth of the therapeutic relationship and made possible connection and collaboration in the therapy room. This theme resonates with the international literature on family-centered care which emphasizes collaborative practices such as shared decision-making, collective discussions, and the provision of information to make choices (Sax, 2007).Similarly, more recent literature on family-centered care speaks of how care is not centered only toward the child but the entire family (Uniacke et al., 2018). The collaborative process of narrative therapy made possible the partnership in decision-making by the multidisciplinary team, the child, and their families at UCDC. Creating the space for knowledge of children experiencing developmental disabilities and their families to be elevated supported the development of a partnership between the therapist and participant. The posture of partnership and the therapist maintaining a position of curiosity, staying decentered—yet influential—is key to narrative practices and ideas. White (2000) described the stance of a therapist as ‘decentered’ because it holds space for the experiences of people, and ‘influential’ because the therapist’s questions influence what becomes visible in the therapeutic conversations. This connectedness and collaboration was emphasized as being preferred and, therefore, is a valuable approach to take when working with children experiencing developmental disabilities and their families.

Practices That Open Up Possibilities encompassed an inquiry of children and families’ skills and know-hows leading to discovery of responses to struggles that allowed them to live according to their hopes and develop a preferred understanding of themselves. The development of these “preferred” or “alternative” stories is one of the main intentions of narrative therapy. Alternative stories offer different ways of responding or may reduce the significance of the problematic story. These alternative stories are made visible by collaboratively developing “rich, meaningful multistranded stories of people’s lives” (Combs and Freedman, 2012: p. 1037). International literature on developmental disabilities and narrative practices indicates the importance of deconstructing the problem narrative to re-author stories that are empowering for young people experiencing language–literacy deficits (Wolter et al., 2006). Children and their families reflected that “alternative stories” allowed them to explore skills while dealing with problems in diverse contexts, thus making richer descriptions of stories.

During therapeutic conversations, questions asked by therapists with the intention of locating the problem in the context, rather than the person, were found meaningful for children and their families to remove blame and shame. The externalized nature of questions created a safe distance between the person and the problem, further allowing children and families to explore possibilities in the form of skills to respond to their problems. Externalized questions about the problem made it possible for individuals to view their identities as separate from problem-dominated stories about themselves (White, 2000).

Children and their families shared that they found it meaningful to bring in the voices of people who supported their alternative, more preferred ways of being in their therapeutic conversations as it supported them to value change when it was visible by other people. Narrative practitioners believe in the idea of a two-way identity, where people influence one another, thus adding meaning to people’s lives. White (2007) spoke about how people’s identities are shaped by significant members in their life. Bringing in the voices of other people provides an alternative lens to understand their identities (White, 2007) and aligns with the ideas of collectivism in the Indian culture, wherein family members are considered an important part in a person’s life (Chadda and Deb, 2013).

Despite the stigma around counseling in the Indian context, the hope of families to advocate for mental health and counseling is representative of people taking charge and control. Counseling made possible for participants to make change in their lives, and the desire to support and bring change in the lives of other people with similar lived experiences. Inquiry focused on privileging the voices of how children with developmental disabilities manage their lives allowed them to experience a sense of control and expertise. Within the narrative framework, this theme speaks to the notion of agency, which privileges the skills and know-hows of clients. People are always responding to the challenges they experience mentally, emotionally, or behaviorally, for themselves as well as for others (Beaudoin, 2005). Similarly, a study with parents of children experiencing autism highlighted the importance of expertise and agency, by creating a collective document of skills of parents to privilege parent voices (Olinger, 2010). The voices of children experiencing developmental disabilities and their families demonstrate how possibilities, alternate stories, skills, agency, and collaboration become possible with narrative therapy and support a process of change.

Strengths and limitations

Strength of the study came from hearing first-hand experiences of narrative therapy from children and their families in the Indian context. Accessing these first-hand experiences was made possible due to an already established connection between the participants and research team. Thus, participants were willing to share their experiences with greater confidence and openness. The relatively small sample of 12 participants could be considered a limitation. While this number is suitable for the current methodology, further studies that utilize other methodologies, to explore the lived experience of children with developmental disabilities engaging in narrative therapy is recommended. Another limitation is that participants were recruited from only one city in India, thus limiting generalizability of findings.

The way forward

The study emphasizes the need for mental health practitioners to take adequate time to create a partnership and relationship with children and their families. Doing so will allow the children to experience greater agency and opens up possibilities in their lives. The study has added to the existing body of narrative-based qualitative studies in revealing the effectiveness of narrative therapy among children with developmental disabilities and the potential it has in the Indian context. There is further scope to explore and document the voices of children experiencing developmental disabilities receiving counseling services in other parts of the India or in other Indian regional languages (e.g., Marathi or Gujarati) which would add to the existing body of literature about the participant’s experience of narrative therapy.

Conclusion

The study was conducted to understand the experiences of children with developmental disabilities and their families receiving narrative therapy. The participants’ experiences revealed positive accounts of narrative therapy. Working In Partnership made possible change within the therapy room and in the lives of children and their families by exploring Practices That Open Up Possibilities. Taking Control And Advocacy made possible change beyond the therapy room and in the wider society. These themes have highlighted ideas from narrative therapy that could support mental health practitioners in therapeutic conversations with children experiencing developmental disabilities.

Footnotes

Acknowledgments

The authors would like to thank the children and families who participated in this study; Shoba Nayar, reviewer of earlier versions of this article; and the mental health team at Ummeed Child Development Center.

Declaration of Conflicting Interests

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

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article. The authors received funding from an individual donor who wishes to remain anonymous for the support of this research study.

Ethical Approval

Ethical approval from the Institutional Review Board of Kasturba Hospital Research Society, Mumbai, was granted in July 2016. (Reference No:IRB/01/2016)

ORCID iD

Trishala Kanakia

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