We examined relevance of the key constructs of the stress and resilience framework in the urban Indian context. Analyses of interviews with urban Indian mothers (N = 47) of a 3–6 year old child with intellectual disability generated themes on maternal appraisals of the child's disability, perceived stressors, and resources. Mothers seemed to utilize a combination of fact-based and religious explanation to make sense of their child's disability. Parental stressors ranged from child-related factors (diagnosis, behavioral problems) to financial and family-level challenges. However, participants also reported a number of personal, family-level, and societal resources that helped them cope with the stressors. Study findings are discussed in the context of implications for practice, policy, and research.
The stress and resilience framework has been effectively utilized to inform research and practice with families caring for a child with intellectual disability (ID) in developed countries (e.g., Pakenham, Samios, & Sofronoff, 2005; Saloviita, Itälinna, & Leinonen, 2003). In this article, we extend application of this framework to experiences of families of a child with ID in urban India. By doing so, we not only aim to provide insight into parental experiences in an underresearched context, but also to challenge our current understanding of stress and resilience among families caring for a child with ID.
Stress and Resilience Framework
Family scholars have posited that families as well as individuals experience stress, crises, adaptation, and resilience; consequently, several models have been developed over the years to account for these processes. McCubbin and Patterson (1983) developed the Double ABCX model and then adapted the Double ABCX Model into a process model called the Family Adjustment and Adaptation Response Model, (FAAR; Patterson, 1988). An important concept under the FAAR Model is pileup of demands, which is comprised of stressors and strains. Stressors are discrete life events that produce or have the potential to generate changes in the family system, whereas strains are ongoing tensions within individuals or the family system that may not have a particular onset but that demand some change. On the opposite end, and to balance out the stress and strain, are the family resources, also termed family resistance resources, which include capabilities and strengths such as family structure and function, interpersonal relations, spirituality, and community relations.
Central to models of family stress and resilience are appraisal and sense making of the stressor, impact of the stressor on the family, and the resources available to meet its demands, (Antonovsky & Sourani, 1988; Patterson, 1988; Patterson & Garwick, 1994). At a broader level, there are the family's schemas, which are frameworks that aid families in the interpretation of crises, their choice of problem-solving approaches, and coping strategies by placing crises and stressors in the larger context of temporal order, interpersonal and community structures, and locality. Sense making and appraisal facilitate the achievement of family coherence or a family's “dynamic feeling of confidence that the world is comprehensible…manageable…and meaningful” (McCubbin, McCubbin, Thompson, & Thompson, 1998, p. 23). In sum, the stress and resilience framework emphasizes the role of families' appraisal of the situation that led to the crisis and the meaning attributed to the crisis itself, stressors and the pileup of demands, and resources, as central to their recovery from the crises.
Stress and Resilience Among Families of Children With ID
Initial studies with parents of a child with ID in developed countries focused predominantly on stress and negative family outcomes. Consistently, these studies found that a child's disability diagnosis crushed parents' dream of a perfect or ideal child, and triggered feelings of grief and trauma (Blacher, Baker, & Braddock, 2002). However, diagnosis was just the start; exemplifying the construct of pileup of demands, families not only reported stress on account of child's diagnosis, but a range of other demands that led to cumulative stress and prolonged crises (Blacher, Neece, & Paczkowski, 2005). For example, these families were found to be at a greater risk for financial strain (Parish, Rose, & Swaine, 2010), marital conflict or breakup (see Risdal & Singer 2004, for a meta-analyses), and poor mental health (Blacher, Shapiro, Lopez, Diaz, & Fusco, 1997), as compared to families of typically developing children.
The narrow focus on stress that was predominant in the initial research with families of a child with ID gradually broadened to a resilience-based perspective; according to this framework, a family's construction of the meaning, causes, and impact of their child's diagnosis could play a role in how well they adapt to their child's ID. Studies carried out in developed countries validate these links between parental cognitions and their overall adjustment (see Hassall & Rose, 2005, for a review). In fact, among the 20 variables that Saloviita and colleagues (2003) utilized to account for parental stress, they found a family's negative framing of the situation (i.e., having a child with ID) to be the strongest predictor. Similarly, a sense of coherence (i.e., viewing crisis as manageable) is negatively related to parents' self-perceived stress (Hedov, Annerén, & Wikblad, 2002) and positively associated with parents' self-regulation of emotions and coping by seeking social support (Pisula & Kossakowska, 2010). In contrast, lower levels of sense of coherence are associated with higher levels of depression, poor self-reported health, and low overall well-being among parents of children with a disability (Oelofsen & Richardson, 2006; Olsson & Hwang, 2002). Likewise, research based on resilience framework has found that problem-focused coping characterized by seeking resources and support was linked to parental well-being. In contrast, emotion-focused coping characterized by reframing the child's disability, and denial or minimization of child's disability is linked to lower well-being and even depression (Dabrowska & Pisula, 2010; Glidden, Billings, & Jobe, 2006). Research on family resources suggest that families' perception of strong formal (e.g., doctors, early intervention services, special education) and informal (e.g., family cohesion, friends) support systems moderate the relationship between a child's diagnosis and parental well-being (Hassall, Rose, & McDonald, 2005; White & Hastings, 2004).
Collectively, the evidence from developed countries indicates that families caring for an individual with ID are undoubtedly vulnerable to several stressors, but at the same time, factors such as adaptive coping strategies, perceived social support, and positive appraisal of the child's disability contribute to individual and family resilience. Although these insights are significant, we believe they point to new areas of research. For example, the stress and resilience framework acknowledges that a family's appraisal and sense making are embedded in their broader sociocultural context. However, few studies have examined how families in diverse contexts, especially developing countries, make sense of their child's disability, the type of stressors they encounter, or the resources they draw upon to adapt to the crisis. Some scholars have even argued that the focus and emphasis of stress and resilience research on appraisal and coping perhaps thrusts too much responsibility on the individual and family, while downplaying the role of broader context or system that regulates resources critical for family adaptation (McConnell, Savage, & Breitkreuz, 2014; Muir & Strnadova, 2014). Consequently, our understanding of stress and resilience is shaped entirely by how families in developed countries adapt to their child's ID, but we know little about family resilience in sociocultural contexts with scarce resources.
We aim to address this gap through our analyses of interviews with mothers of young children with ID in urban India, a sociocultural context that is severely lacking in structural resources such as supportive disability policies, formal support services, or even accessible infrastructure (Grinker, 2007). Furthermore, giving birth to a child with a disability is often viewed as a personal failure on part of the mother (Edwardraj, Mumtaj, Prasad, Kuruvilla, & Jacob, 2010). Even though some understanding exists in the society regarding disabilities and causes, parents, especially mothers, remain targets of suspicion for their children's behavior and their dis/abilities (Divan, Vajaratkar, Desai, Strik-Lievers, & Patel, 2012; Edwardraj et al., 2010). The societal belief in the Hindu notion of Karma, which suggests that human beings have to suffer the consequences of their deeds, further contributes to the social censure of mothers of a child with a disability, and in many cases a sense of guilt and self-blame among mothers themselves (John, 2012; Richard, 2014). Notably, although the majority of Indian households are comprised of joint families (i.e., multigenerational families living under one roof) that share childcare responsibilities, mothers of child with a disability are often the sole caregiver of their child with a disability, and receive little or no assistance from the extended family (Grinker, 2007).
Indeed, Indian mothers parent a child in a context that is starkly different from the Western developed nations. Applying the stress and resilience lens to their experiences would not only expand and diversify our understanding of these constructs, but also help to incorporate the voice of marginalized populations in stress and resilience literature that predominantly focuses on experiences of families living in Western developed countries. Toward this, we ask two interrelated questions: (1) How do Indian mother make sense or appraise their situation in a context, where there is little awareness and numerous stigmatizing notions about ID?, and (2) What are the various stressors and resources Indian mothers view as significant in caring for and adapting to their child with ID in a context that offers negligible structural and informal support? Ultimately, the aim of our analyses is to broaden our current conceptualizations of stress and resilience constructs by testing them in an underresearched cultural context, and for this new understanding to inform culturally relevant policies and practices.
The interviews are from a larger study with children ages 3 to 6 years with ID in urban India, their mothers, and their teachers (John, Morris, & Halliburton, 2012). This article includes analysis of the interviews carried out with the mothers. The interviewees (N = 47) were from families belonging to middle socioeconomic class with an average annual family income of 187,000 Indian Rupees (equivalent to $4,100). According to the India Human Development Survey (Desai et al., 2005), this income puts them in the 90th percentile of the overall Indian population. Over half the participants (n = 29; 62%) had not completed high school, 13 (28%) had a bachelor's degree, and five (10%) had a master's degree. Recent estimates indicate that 48.7 % of the women in India attend secondary education (UNICEF, 2013). As seems to be the norm among Indian women (Das, Jain-Chandra, Kochhar, & Kumar, 2015), a majority of our study participants (n = 40) were not employed outside the home. Fourteen participants (30%) lived in nuclear family households and the remaining (n = 33; 70%) lived in a joint family setting with extended family in the same household. Forty-four mothers were married to their child's biological father, one was widowed, and two mothers reported abandonment by their spouse after birth of their child with a disability.
Twenty-nine participants (62%) were mothers of boys and 21 participants had a child with ID with unknown etiology. The remaining participants had a child with ID and an associated diagnosis of Down syndrome (n = 2), autism (n = 9), cerebral palsy (n = 10), epilepsy (n = 2), and syndrome disorders (n = 3). All children were enrolled in privately run special education centers that offered early intervention services ranging from education to various forms of therapy (e.g., speech and occupational).
The interviews were conducted in accordance with a protocol approved by the Institutional Review Board of the university to which both authors were affiliated at the time of study (see John, 2012 for recruitment and data collection procedure). The participants were recruited through the child's special education center and were interviewed at a quiet spot there. Interviews were conducted in Gujarati or Hindi by the first author and audiotaped.
As the first author and the interviewer identifies as a Gujarati and is fluent in Gujarati, she had a somewhat “emic” cultural perspective, and had to struggle to “make the familiar strange” (Erickson, 1986, p. 121). The participants too would start several of their answers with “tamne to khabar chhe” (you know this); in these instances, the interviewer had to make sure she asked the questions to which she and her participants thought she already knew the answers.. However, her familiarity with culture and language arguably made it easier for participants to share their experiences, and for the researcher to capture the cultural nuances and colloquialisms in participants' responses.
Interview questions were based on Reaction to Diagnosis Interview (RDI; Marvin & Pianta, 1996) and focused on how participants learned about their child's disability, their initial reaction when they learned about their child's disability and changes over time, as well as the explanation the participants had constructed regarding their child's disability. Specifically, the interview questions were: (a) When did you find out that your child had a disability?; (b) How did you feel when you realized your child had a disability?; (c) How have these feelings changed over time? Why?; and, (d) Parents sometimes wonder why they have a child with special needs. Do you have anything like that that you wonder about? Although the interviews were geared toward assessing parental adaptation to the child's diagnosis rather than their cognition of the child's disability diagnosis, during the course of the interviews, participants spontaneously shared information pertaining to family processes such as stressors, pileup of demands, and resources.
As the aim of this analyses was to apply an existing framework to new qualitative data, directed content analysis approach was utilized to code the participants' interview responses (Hsiu-Fang & Shannon, 2005). Directed content analysis is a structured approach in which the researcher begins the coding process with predetermined categories and utilizes these categories to group data. Consistent with the approach, we first identified and developed clear operational definitions for the constructs of the stress and resilience framework—appraisal, stressors, and resources—that would serve as categories for coding the interview responses. Next, the first author coded relevant responses from all 47 interviews into the predetermined categories. To ensure trustworthiness of the coded data, interview excerpts in each category were reviewed vis-à-vis the operational definition for the specific category. Interview responses that reflected participants' perception of the situation were categorized under “appraisal and making sense of the situation”; responses that described the negative and disruptive events in the context of child's disability were categorized under “stressors”; and responses that highlighted positive factors that helped with maternal adaptation were categorized under “resources.” As responses to the first interview question, “When did you find out about your child's intellectual disability?” were mostly factual and not relevant to the present analyses, they were not coded. The rest of the interview content, however, fit into one of the three categories.
Once all the interview data were grouped into three categories, the first author utilized open and axial coding procedures to identify unique themes within each category (Patton, 2002). In the open coding phase, all responses were assigned a tentative code. For example, responses in the “appraisal of the situation” category were assigned codes such as self-pity, resentment, and acceptance of the situation. These initial codes were condensed into fewer codes in the axial coding phase such as negative appraisals, and pragmatic and benefit finding appraisals. Table 1 illustrates the categories, their definitions, sample responses, and themes. The categories and themes are further described in the Results section.
As such, our analytic approach and standards were grounded in the interpretivist paradigm (Crotty, 2003) and in line with the paradigm; our focus was not to discover a singular, objective truth, but rather to provide a clear and coherent account of our participants' responses (Cho & Trent 2006). We have not included direct quotes, because the interviews were in Hindi and Gujarati, but the responses that appear in the Results section closely resemble what the participants shared in their interview. Moreover, as our analyses was exploratory, we did not have any apriori assumptions regarding the themes, and we included all divergent perspectives relevant to the three coding categories.
Appraisal and Making Sense of the Situation
A number of appraisals of the crisis (i.e., having a child with ID) were evident in our interviews. One participant shared that when she learned about her child's disability, she resigned herself to a lifetime of caregiving, because she thought her son was going to be “completely useless.” She found it unfair that she had been tasked with the challenge of caring for a child with ID. Another mother of a girl with a developmental delay expressed her disappointment and grief over the fact that her daughter will never be able to do the things that other children do.
Pragmatic and benefit finding perspective
Although a minority, some participants seemed to hold a pragmatic view and saw having and taking care of their child as a call of duty. One mother expressed, in a matter of fact tone, “It is my duty to work for the child's improvement. If we have to spend money, we will spend money. It is what it is.” Another mother shared a similarly stoic response:
What can you do? If you have a problem, you have to face it. If you keep asking why God gave me a child like this, then you won't be able to do anything. Instead, you have to do your best for the child.
Finally, one mother shared a perspective often evident in resilience literature; she described her child's struggles during the first year and commended him on his strength and courage for all that he had been through, which made him “better and stronger” (although physically weaker) than other children.
The initial negative and pessimistic appraisals seemed to change; participants frequently referred to “earlier” and “now” which reflected the evolving nature of their appraisal of the crisis. One mother said that when the doctor told her about her child's ID she was devastated, because she thought her child would not be able to do anything, but she took it upon herself to get the child to walk. And now that her child could walk, she expected her child might become independent. Many participants admitted that although they lacked “confidence and courage” when their child was born, they had become more optimistic and hardier over the months and years. Consistent with the notion of coherence (Antonovsky, 1979) many participants seemed to have begun viewing their child's disability as meaningful and manageable. However, some participants still struggled to find meaning, and a few had adapted to some aspects of their child's disability, but grappled with other aspects, such as behavioral problems and lifetime dependence.
Appraisals of cause of disability
Intertwined with the definition of crisis (i.e., having a child with ID) were parental appraisals of causes of their child's ID. The majority of the participants attributed child's disability to complications during pregnancy or immediately following birth, either due to premature birth, delayed birth cry or seizures within few days of birth. Some participants presented detailed accounts of medical negligence as a possible explanation for their child's disability. Despite these rational and fact-based notions regarding the cause, at a more philosophical level, many parents framed their child's disability and their caregiving responsibilities in the context of the child's disability as God's wish and themselves as God's chosen one to shoulder the challenge of caring for a child with a disability. Some parents espoused the Hindu theory of Karma, and one mother attributed it to the child being born during eclipse. In a particularly poignant response, one mother talked about how she had caused unhappiness to her parents by “having a love marriage” (as opposed to arranged marriage) and eloping. While at a rational level, she understood this could not have “caused” her son's disability, she firmly asserted that you cannot expect to be happy when you have made someone else unhappy.
Stressors and Pileup of Demands
Related to the child's diagnosis, several mothers shared that they were devastated when they found out their child was “not normal” and that they would not lead the life or be able to do things (e.g., go to “normal” school, get married) similar to “normal” children. The future of the child that loomed in front of them appeared gloomy and hopeless. One mother said that she was crushed because all her hopes of getting her daughter married and educating her were now dashed. Many of them had no prior experience with disability. Mothers that received a formal diagnosis (e.g., autism) had never heard of the term before. The sheer lack of information added to the stress of the diagnosis and the uncertainty about the child and their future as caregivers. For some participants, the process of getting a diagnosis itself was stressful. One mother shared her frustration over the lack of a definitive diagnosis for her son. Her son was 4 years old, but they were still unsure about the exact nature of his disability. For a while, doctors said he had Stickler syndrome, but all his features did not fit with the diagnosis, so they were not sure.
Demands on money and time
This stressor turned into a prolonged period of crisis as challenges accumulated. Financial struggles came up consistently in interviews. Due to the caregiving demands placed by the child's disability, several participants had to give up their full-time job. The loss of income combined with expensive therapies, medications, school tuition, and transport put the participants and their family under significant and ongoing financial strain. One mother reported that therapy benefited her child, but they could not do it consistently because it cost 50 rupees for each session. The same mother said she stayed at school for the 3 hours that her child was there because she could not afford to pay the fare to go home and come back to pick up the child. Also, participants described various family responsibilities such as taking care of elderly parents, education of their other children, and a daughter's wedding that further stretched their limited financial resources. A related strain was the demands that the child's disability placed on participants' time. Participants stated they had to spend vast amounts of time not only to manage daily routines (e.g., eating, bathing, etc.), but also on therapy and rehabilitation. Among families with two or more children, participants felt challenged to divide time satisfactorily between the child and his or her siblings.
Marital and family conflicts
Several participants reported family conflicts and troubled marriages. In India, where divorce is extremely uncommon, two out of 47 participants reported their child's biological father had deserted the family because of the child's disability and caregiving demands it placed on the parents (e.g., staying up nights, doctors' visits). One of them shared that she had come to terms with the child's disability but had a hard time combating the sense of loneliness that came from shouldering the caregiving responsibilities on her own. Other forms of marital problems included differences in opinion regarding severity of child's symptoms and diagnosis. In one instance, the participant shared that she and her husband often fought because he was in denial and dismissed her concerns regarding child's symptoms. Participants that lived in joint families reported the lack of empathy and understanding on the part of extended family members toward the child's disability.
Child's behavior, health, and functioning
Another strain that came up consistently in interviews was the child's behavior. Some mothers brought up socially embarrassing behaviors, whereas others discussed more serious and disruptive behavioral issues (e.g., hitting, breaking things). One mother sounded exhausted as she reported that her child never sat at one place and touched everything. Another mother complained about her child's chronic crying and erratic sleeping habits. Several participants had a child who not only had ID, but numerous other health problems as well. In fact, some children had health problems that required frequent hospitalization, which exacerbated the family stress.
A related stressor was the child's level of adaptive functioning. The child's inability to walk seemed especially stressful to mothers; one mother talked about how difficult and physically strenuous it was for her to carry her child around. The reality of their child's low level of functioning and slow pace of improvement gradually dawned on some parents. They grew increasingly distressed as they came to realize that they would have to do more to address their child's problems than merely allowing him or her to repeat a grade in school. Participants worried about the child's long-term dependence on parents.
Subsequent reproductive choices seemed to be an important stressor among the families in which the child with a disability was the first born. One mother emphatically stated that she was not going to have a second child so that she can devote her full attention and other resources to her daughter. She was afraid that if she had a second child who was normal, she might end up neglecting her child with a disability. Another participant suspected at the time of interview that she was in early stages of pregnancy and was very anxious about her second child having autism. She asked the interviewer repeatedly if that were a possibility.
Our interviews did not include a question inquiring into the resources that helped the participants adjust and adapt to their child's disability. However, most interviewees volunteered substantial information in the course of answering the question on the change in their reaction and cognitions over time.
An individual-level resource evident from interview responses was the participants' self-reliance and personal determination in dealing with their child's ID and related challenges. Some mothers shared that they cried and wallowed in self-pity at first, but quickly realized that their child's well-being was solely in their hands. If they did not come to grips with the situation and begin seeking help and resources, no one else was going to do it for them. They considered themselves a sole champion for their child. This self-perception seemed to serve as an ongoing coping strategy that fueled their help-seeking efforts. Another personal resource that seemed to facilitate adaptation was finding out and learning about other children with more severe impairment. Participants seemed to draw consolation and strength from knowing that their child had a better level of functioning relative to other children with ID.
Moreover, the child's affection and accomplishments injected strength and diffused the stress of caring for the child. Mothers expressed pride as they talked about their child's achievements such as when the child said a few words or made eye contact, or took few steps. Similarly, participants spoke warmly about how life did not seem as stressful, and all the stress seemed worthwhile when their child hugged them. Just as the child's behavioral problems were a stressor, the child's pleasant disposition seemed to serve as a resource. One mother stated that things were much better for her now, because the child had developed a happy disposition. “He plays with me. He smiles now. He plays with his brothers and sisters when they come home from school. He remains happy.”
A family-level resource mentioned in several interviews was the support from siblings in daily care of the child. Several mothers also shared with hope and confidence that the siblings will be there to take care of the child after the parents were gone. Without prompting, participants described various forms of spousal support as well. A few mothers admitted that they did not know as much as the child's father about the diagnosis, and that the child's father was typically the one that interacted with the doctors and took the child for therapy and doctor's visits. This could be because on average, fathers in our study had a higher education level as compared to the mothers. A few responses also included emotional support from fathers, and its significance to the participants' well-being. One mother shared that her husband had not held their oldest child very much, but carried around this child (with a disability) all the time and was extremely attached to him. Another mother reported that when she found out about the private school tuition, she did not think they could afford it, but her husband (child's father) insisted that they do whatever is best for the child, and if needed, he would take up two or more jobs. The role of participants' own parents as well as spouses' parents in providing instrumental (especially money) as well as emotional support was also articulated in several interviews.
At a broader level, the participants frequently mentioned the child's school as a key resource. The school was not just a place that helped their child achieve developmental outcomes, but also a safe haven of acceptance and shared hope. For many participants, the day their child started attending the special school represented a turning point toward a more optimistic life. Other important rehabilitative supports parents mentioned in the context of their adaptation were physiotherapy and alternative medicines (e.g., Ayurved, Acupressure). One mother of a child with cerebral palsy described an ayurvedic approach that had provided them some relief; it involved making a paste of red rice and herbs and rubbing over the entire body. Interestingly, some mothers explained how the Internet had helped them at various junctures. One mother recounted that she had seen numerous doctors in hopes of getting a diagnosis, but could not get a definitive diagnosis. So, she scoured Internet web sites for answers and found that her child's symptom closely resembled signs of autism. Eventually, a local doctor diagnosed her child with autism. Although, in general, participants did not portray doctors in positive terms, a few participants acknowledged that their doctor had provided them a speedy diagnosis and referred them for appropriate services. One mother said that her doctor had not only provided referrals for services but had helped her understand her child's disability. He had told her that she should interact with her child often, giving him her undivided attention. She and her husband had taken this advice to heart and considered it a key factor in her child's positive developmental trajectory.
Viewing the interview responses of mothers caring for a child with ID in urban India through the stress and resilience lens indeed provides useful insights into our participants' cognitive appraisal of the child's disability, stressors, and resources, as well as the broader social context in which these processes are embedded. In attempting to answer the question on how families caring for a child with ID in the urban Indian context remain resilient, our findings both complement past research with families caring for a child with ID in developed countries, as well as expand our understanding of stress and resilience constructs.
Some patterns we noted in participants' sense making process such as gradual acceptance of their child's ID and viewing their child's disability as part of God's plan for their life, resemble findings from past research in Western contexts (Michie & Skinner, 2010). However, attributing their child's disability to Karma, a notion grounded in Hindu beliefs, seems to be unique to the Indian context. Similarly, one participant's belief that her child's autism could be because she married without her parents' approval perhaps reflects a sense of filial piety, an important family value in Asian cultures (Canda, 2013). These misinformed notions regarding causes of their child's ID arguably exacerbate maternal stress and impede adaptation. Indeed, better awareness and education through various media (e.g., printed material, websites, videos) regarding different aspects of ID such as causes and opportunities available to individuals with ID (e.g., Special Olympics, therapies), as well as severity of their child's symptoms relative to other children with a disability could serve as a useful strategy promote adaptation.
An additional and a more rational notion articulated by several participants pertained to medical negligence; it frequently came up in response to the question on why they thought their child had a disability. This finding is indeed concerning and should be investigated further through public health research. If supported through more empirical evidence, it would signal the need for better access to quality care for newborns and infants in order to reduce the incidence of ID from preventable causes.
Themes identified for maternal stress and pileup of demands were not vastly different from those evident in family research in Western countries, but given the Indian context, there is probably a difference in nature and degree of stress. For example, mothers tend to be primary caregivers of a child with a disability even in developed countries (Chen, Ryan-Henry, Heller, & Chen, 2001; Cuskelly, Hauser-Cram, & Van Riper, 2009), but this lone caregiving may be particularly stressful for Indian mothers as it occurs in the context of shared parenting that is typical in Indian culture (Grinker, 2007). Similarly, child's level of functioning has been reported as a source of stress in developed countries as well (Weiss, Sullivan, & Diamond, 2003), but the absence of wheelchair accessible services in India may further compound this stress for Indian mothers. Finally, demands that a child's disability places on family resources, especially money and time, is also frequently reported by families in developed countries (Parish et al. 2010). However, this strain may be more prominent in an impoverished and resource poor country such as India, where families travel longer distances to access treatment and therapies are more expensive due to the high demand/low supply ratio. Moreover, parents often end up spending money on expensive but nonevidence-based treatment approaches in hopes of improving their child's condition. Although parent education could be one approach to address this issue, it is equally important to regulate and oversee services in order to protect vulnerable parents from predatory practices. Unlike other stressors, the theme pertaining to future reproductive decisions was novel and perhaps implies that genetic counseling to provide accurate information could be particularly useful to facilitate parental adjustment and adaptation among Indian mothers.
The resources mothers reported at various levels—personal, family, and societal—were diverse and provided valuable insights into how Indian mothers remain resilient in a setting that has few structural resources. These insights open up numerous avenues for strengths-based practice with Indian families caring for a child with ID. The participants demonstrated clear and firm intent to seek out information and services that could improve their child's developmental trajectory. This personal resource presents an important opportunity for parent education to empower mothers to work with their children. A prominent resource at the family level seemed to be the instrumental and emotional support from child's father. This theme not only stood in contrast to marital conflicts and separation reported by a few mothers, but also was notable because of the patriarchal structure of the Indian society, in which child rearing is predominantly a mother's responsibility. Fathers' increased involvement in caregiving of their child with a disability could be due to limited help and support from other members of the extended family. Regardless of the underlying reasons, paternal involvement is an important strength, and one that practitioners could tap into while working with Indian families, or researchers could examine in future studies.
At a broader, societal level, mothers reported an interesting blend of modern and traditional resources. They drew on technology (e.g., Internet) as well as traditional forms of medicine (e.g., Ayurveda) to manage various aspects of their child's disability. An important societal resource and form of support for participants was the child's special school. Whereas special and segregated schools undermine inclusion and have largely negative connotations in more developed countries, the role of these organizations in promoting both individual and family well-being is evident in the current and some prior research in urban India (John, Bailey, & Jones, 2016). Considering its significance in family adaptation and adjustment, the Indian government and private sector should invest more in educational institutions to provide not just programming and rehabilitation for the child, but support services to families as well.
On a related note, doctors can serve as an important resource for parents. In our interviews, a few parents shared how advice, early diagnosis, and referral from their doctor had aided them in seeking out professional help, whereas others parents described the stress and frustration from dealing with doctors and the limited help and information they provided. Indeed, as a first point of contact, doctors play an important role in families' adaptation to their child's diagnosis, and if they are better trained in working with these families, they can play an important role in promoting family well-being.
Future Directions for Research
Although parental appraisals of caring for a child with a disability, related stressors, and resources described in this article were identified from a relatively small sample, they indicate the usefulness and relevance of stress and resilience framework to understand experiences of urban Indian parents. This preliminary information helps to pinpoint important pathways for future research topics and methods. First, given the rich information gathered through brief interviews, future research should delve deeper into (a) how Indian families view their child's diagnosis; (b) what their key stressors are; and what individual, familial, and social factors strengthen Indian families' ability to adapt and adjust to their child's diagnosis. One way this evidence can be utilized is to develop context sensitive surveys on stress and resources among Indian families of children with a disability. For example, traditional forms of medicine may be a resource that is unique to Indian parents. Similarly, acceptance by members of extended family may be more critical to Indian mothers living in joint family settings, as compared to families living in countries where nuclear family households are a norm. Moreover, future studies examining these topics can be carried out with diverse groups in India such as families living in poverty and families in rural settings. Because these groups are likely to have accss to fewer resources, including them in research could provide a more comprehensive picture of stress and resilience among Indian families caring for a child with ID.
Second, future research can address certain methodological limitations of the current study. For example, information gathered through interviews can be supplemented with observational and survey data to get a more rounded and complete view of family adaptation. In addition, studies should integrate fathers' voices into findings on family processes. Too often, maternal perceptions (as in our research) are used as a proxy for family perceptions, even though research demonstrates distinct and divergent experiences of fathers and mothers (Bruce, Schultz, & Smyrnios, 1996; Rowbotham, Carroll, & Cuskelly, 2011). Finally, the pile up of demands evident from the interview excerpts of mothers of children ages 3 to 6 years underscore the need to explore the developmental nature of stress. Research could look into the various stressors Indian families encounter through the course of their child's development and the corresponding changes in parental coping.
The data collection for this project was partially funded by Oklahoma State University Graduate College Dissertation Fellowship to the first author.