|Year : 2023 | Volume
| Issue : 3 | Page : 105-111
Psychological experiences and perceived social support: A study on Indian mothers of children with type 1 diabetes
Smruti Pusalkar, Ilika Guha Majumdar
Department of Psychology, CHRIST (Deemed to be University) Delhi-NCR, Block B, Nandgram Road, Marium Nagar, Sewa Nagar, Ghaziabad - 201003, Uttar Pradesh, India
|Date of Submission||16-Feb-2023|
|Date of Decision||13-Jun-2023|
|Date of Acceptance||25-Jul-2023|
|Date of Web Publication||18-Sep-2023|
Ilika Guha Majumdar
Department of Psychology, CHRIST University, Block B, Nandgram Rd., Marium Nagar, Sewa Nagar, Ghaziabad - 201 003, Uttar Pradesh
Source of Support: None, Conflict of Interest: None
Introduction: Mothers are often the primary caregivers of children in Indian homes. Mothers of children with Type 1 diabetes experience an emotional toll of this challenging responsibility that the lack of social support can exacerbate. Health care for children with Type 1 diabetes in India commonly addresses the medical condition and its associated symptoms, whereas mothers, who bear the primary responsibility of the children's care, are most often neglected. This study aimed to understand the psychological experiences and perceived social support of Indian mothers whose children are diagnosed with Type 1 diabetes. Methods: This phenomenological research was conducted using semi-structured interviews with mothers using purposive sampling between the ages of 24 and 45 years (n = 13) and analyzed using thematic analysis. The data analysis and collection were done between January 2022 and December 2022. Results: Thematic analysis revealed six main themes of psychological distress, multifold strain, poor Type 1 diabetes mellitus education and stigma, need for social and familial support, caregiver burden, and coping. The findings from this research suggest that such experiences can make it difficult for them to cope with their child's diabetes and have a negative impact on their mental health. Conclusion: This study highlights the need for culture-appropriate interventions to address the social and emotional needs of such mothers. It is essential to educate families and the community as a whole about the needs of both mothers and children with Type 1 diabetes.
Keywords: India, maternal well-being, phenomenology, thematic analysis, Type 1 diabetes
|How to cite this article:|
Pusalkar S, Majumdar IG. Psychological experiences and perceived social support: A study on Indian mothers of children with type 1 diabetes. Asian J Soc Health Behav 2023;6:105-11
|How to cite this URL:|
Pusalkar S, Majumdar IG. Psychological experiences and perceived social support: A study on Indian mothers of children with type 1 diabetes. Asian J Soc Health Behav [serial online] 2023 [cited 2023 Sep 23];6:105-11. Available from: http://www.healthandbehavior.com/text.asp?2023/6/3/105/385955
| Introduction|| |
Type 1 diabetes mellitus (T1DM) is an autoimmune condition with an inability of the pancreas to produce insulin. T1DM has a severe psychological impact on the person diagnosed, their family, and caregivers, requiring rigorous management which is financially burdensome for families. In 2021, the global incidence rate of T1DM was 8.4 million with 1.5 million of these under the age of 20 years and India has the second-highest population of T1DM cases in the world among children, with 95.6 thousand cases and close to 16 thousand new cases every year. Mothers of children with T1DM bear the primary caregiving responsibility, including administering insulin, monitoring blood sugar levels, and managing treatment plans. Research has found higher maternal stress, significant anxiety and depression rates, and poor quality of life, than paternal, due to their primary caregiving role.,,, This demanding role affects their daily routines and lifestyle, requiring careful planning and adherence to structured routines that impact social activities, family outings, and overall flexibility in daily life.
Mothers often experience a range of emotions that emerge from the worry about their child's health, the daily management of diabetes, and the long-term implications of the condition. These emotional stresses can take a toll on the mother's mental well-being. The demands of caring for a child with Type 1 diabetes can affect a mother's ability to engage in personal interests and activities, as well as impact her professional life. For Indian working mothers, frequent doctor visits, sick days, the need for flexibility, and balancing work commitments with the care needs of the diabetic child can create challenges. Such mothers often need support from informal agencies like other families like theirs, immediate families, and medical staff, but these resources are limited for them.
Models of maternal–child coping suggest that both members improve when both perceive positive coping from each other. This research is based on the multidimensional model of caregiving which suggests that a contextual interpretation of caregiving and hence social and economic characteristics of the family need to be considered. Factors such as child characteristics, caregiver strain, caregiver intrapsychic factors, coping and supportive factors, and caregiver health and well-being are emphasized in the caregiving process.
Caregiving experiences and maternal roles in Indian households differ from the West concerning socioeconomic differences, gender roles of women, family dynamics, stigmatization, community support, and public policy, all of which influence maternal mental health. Hence, this research aims to understand the nature of psychological experiences and perceived social support of mothers of children with T1DM in India, as a qualitative paradigm to understand subjective reality and explore their experiences. Qualitative research allows researchers to explore the experiences, perspectives, and emotions of mothers in a comprehensive and nuanced manner. It helps to capture a deeper understanding of their unique challenges, coping mechanisms, and support needs, along with exploring their fears, worries, and the impact of their child's diagnosis of T1DM on their daily lives, relationships, and overall quality of life. By gaining insights into the experiences of mothers, qualitative research can inform health-care professionals about the specific issues faced by this population, and thus contribute to improving health-care practices by identifying areas to enhance support for maternal mental health. It can also guide how to involve mothers effectively in their child's diabetes management. Such research can lead to the development of more effective culturally sensitive interventions and policies that address the challenges faced by these mothers and ultimately improve the well-being of both mothers and their children.
| Methods|| |
This study was phenomenological with an interpretivist paradigm on Indian mothers of children with TIDM. Qualitative methodology enables us to investigate real-world events in greater detail, understand subjective experiences, and provide a more thorough overview of the behavior of the research subjects. The data were collected between May and June, and analyzed between July and September 2022.
Mothers between the ages of 20 and 45 years with children between the ages of 3 and 12 years with at least 1 year postdiagnosis were chosen. All mothers with a chronic physical or mental condition or other family members who had the same were excluded. Single mothers and those who could not speak Hindi, Marathi, or English were also excluded. In the broader context of the study, mothers who belonged to the Indian collectivistic, patriarchal society and acted as primary caregivers were included. Before their child's diagnosis, they were unaware of T1DM and were now the primary caregivers in their child's management routine.
Sociodemographic pro forma was created along with a semi-structured interview schedule, validated by four experts who were specialized and experienced in the field of qualitative health studies, using content analysis. This schedule was translated into Marathi or Hindi and validated by two experts in the language.
The researchers, both females, were psychology professionals with master's and M.Phil. degrees who ensured that they had sufficient knowledge about T1DM.They understood that T1DM is a chronic autoimmune condition that brings about an immense caregiver burden due to the strict regime. They were also introspective at every step to ensure an unbiased research process and reviewed their work from experts in qualitative research. They established rapport with the participants before data collection and explained the main aims of the study. Each participant was approached with empathy, and the researchers were sensitive to the emotional well-being of the participants by providing counseling referrals for those in need. The primary author belonged to the same cultural background and respected the diverse norms, values, and practices of the participants. Besides this, the researcher also consistently reflected upon their own emotions, values, and assumptions by reflexive journaling and supervision of colleagues to help in this reflexive practice.
A nonprobabilistic convenience sampling method was used. Respondents were approached by phone call through the support of a health-care unit in Pune, Maharashtra, where patients from various parts of the state are provided T1DM care for free. The individual interviews took approximately 30–60 min and were conducted in the same health-care unit mentioned above, face to face with only the researcher and participant present in the room. The room was ensured to be quiet and convenient for the participant. They were given the informed consent forms which they read, asked questions about, and signed after understanding the research process. Maximum variation was ensured by considering factors such as age, education level, socioeconomic status, time since diagnosis, employment, and location of residence. Accuracy was assured by creating an exploratory questionnaire. Probes were asked to explore the participant's experiences and clarifications were sought whenever needed.
Sample size justification
The data saturation was reached at n = 13 and two more samples were collected to ensure the accuracy of saturation. According to Strauss and Corbin (2006), theoretical saturation is reached when no new theme emerges, with themes having adequate variation and good internal relations. Keeping these criteria, data saturation was justified at 13.
The interview audios were transcribed, translated, and prepared for thematic analysis based on Braun and Clarke's model, after data collection. The quantitative and qualitative data were manually coded and analyzed by the primary author. This included:
- Phase 1: Familiarization with data by transcription and translation, rereading the data, and initial ideation of themes
- Phase 2: Generating initial codes: Coding and creating meaningful chunks of data for theme creation
- Phase 3: Identifying subthemes and themes: Systematic coding and grouping of themes that were recurrent to create subthemes and global themes
- Phase 4: Reviewing subthemes and themes: After an agreement was established by the authors and two reviewers, the themes were reviewed to understand if they fit the codes and their descriptions. A thematic map was made
- Phase 5: Defining the themes based on the most commonly found themes and the coders provided detailing to each theme, gave the nomenclature that best suited the theme, and organized subthemes. Subthemes were also defined
- Phase 6: Writing the final report, using excerpts from the transcripts and further literature evidence.
Data analysis was not a linear process, but rather required back and forth between the 6 phases, as required. Primarily inductive codes were derived and not assumed from prior research.
Validity and reliability of the data
The investigator triangulation method was used to assure the trustworthiness of the data. In this study, we used the COREQ checklist for conducting and reporting qualitative research. Feedback, prolonged engagement, sufficient time, and good communication were considered to ensure the richness of data for the transferability of data. Three experts in the field of research and T1DM also reviewed the results to ensure confirmability. All transcripts were also translated into English and reviewed by an expert in Marathi, Hindi, and English languages.
Ethical approval was taken from the Research Conduct and Ethics Committee, Centre for Research (IRB No: Jun223102), prior to data collection. Written informed consent was taken from the mothers and audio-recorded only after consent from the participants. All the data were kept confidential and securely held for the required period. No financial incentives of any kind were provided for participation in the study.
| Results|| |
[Table 1] is an excerpt of the questions asked that were eventually translated to Hindi and Marathi. [Table 2] highlights the demographic characteristics of the mothers (M = 31.8 years; standard deviation [SD] = 3.48) chosen for the study. The majority of the mothers had two children, belonged to nuclear families, were at least 10th standard pass, were unemployed, were Hindus, and had a family income of $ 1215.71 to $ 2431.42 per annum, i.e., they belonged to the lower middle class.
|Table 2: Sociodemographic characteristics of the mothers of children diagnosed with Type 1 diabetes mellitus|
Click here to view
[Table 3] describes the demographics of the diagnosed children (M = 8.03 years; SD = 1.96), with the average age being 3.4 years (SD = 1.33) suggesting complete dependence on caregivers. The average duration of diagnosis was almost 5 years (M = 4.8; SD = 2.44). The majority of the children were females, were in primary school, and had no family history of DM.
|Table 3: Sociodemographic and clinical characteristics of the children diagnosed with Type 1 diabetes mellitus|
Click here to view
Thematic analysis generated six global themes, including psychological distress, multifold strain, poor T1DM education, lack of social support, caregiving burden, and coping. From 900 initial codes, theme-wise categorization was done to create organizing themes. Global themes and subthemes were created based on similar concepts that were organized together.
Psychological distress describes the mothers' subjective reports of physical health problems because of their child's diagnosis, which justifies the subtheme of initial distress.
A 28-year-old mother of a 7-year-old child with T1DM said, “We were in a state of absolute shock! How can such a thing happen to a small kid? We had only heard of adults getting it[.] I can't even tell you what both of us went through.”
The subtheme of emotional distress highlights that mothers had no time to address their emotions with family and caregiving responsibilities. Frequent sugar fluctuations also led to emotional disturbance in the mothers.
A mother of a 6-year-old child with T1DM stated that “Whenever I tell my son eats something that I have told him not to, his sugar levels go high and that really makes me angry. Then I start scolding him [.] I get disturbed emotionally and then my irritation increases.”
The mothers faced multifold strains where they had major financial concerns, headaches, palpitations, and problems with acid reflux due to psychological distress, sleeplessness, and constant involvement in caregiving. With the mothers (n = 13) belonging to lower socioeconomic classes, their initial prior access to diabetes education is limited. They reported a strain in the interpersonal relationships with their children and the dietary requirements (often served by mothers) were only selective to the diagnosed children but not for their healthy siblings, which caused conflicts.
A 33-year-old mother of a child who has been diagnosed with T1DM for the past 6 years stated that “I myself remain quite unwell since we got our child diagnosed. I have complaints of acidity. [.] I could only help intermittently. I needed to be admitted frequently and my health has deteriorated since then.”
Despite the growing incidence of T1DM in India, all the participants, their families, and community members reported a poor T1DM education, leading to resistance to the acceptance of the diagnosis. They were unaware that diabetes could affect children which thus led to shock and confusion upon diagnosis. Thus, the mothers felt hesitation to reveal their child's diagnosis and were socially inhibited on most occasions as their entire schedule revolved with and around their children. A 32-year-old mother of a child with T1DM spoke about her family members, “Like us, they also did not know how such small children could have diabetes. It is the first time that they heard someone so young having diabetes (it was new for everyone).”
A crucial finding was that the mothers significantly benefited from spousal support and felt that sharing responsibility and personal burdens was a strong coping mechanism. Despite their minimal involvement, the mere presence of fathers was significantly important for them. Although they relied on advice from immediate family members, many mothers faced denial, hostility, or strained relations with their family members and an overall lack of social support. They relied on the feeling of “not being the only one” to feel better but overall sensed impermeable social boundaries from other informal social systems. A 37-year-old mother of a 12-year-old child with T1DM stated, “There is no one to support us, neither our parents nor our in-laws. It is only the both of us (husband). So, I was quite distressed because of these thoughts.”
All the participants reported satisfaction with the medical support valued by having medical education, supportive medical staff, and routines about diet and insulin management.
Due to their caregiving responsibilities, the mothers faced restricted recreational involvement, social restrictions, taking up sole responsibility, and role conflict. As the mothers had no leisure time, social interactions were very limited, and faced restrictions on “living a normal life” as their priority was caregiving. This also impacted their personal life, with clashes in roles and an inability to pursue their careers due to the caregiving burden. They reported facing trouble doing anything but being a caregiver.
Although they had turbulent times, the mothers have an action-oriented, proactive approach to decision-making as means of coping. This is reflected in the statement of a 28-year-old mother of a 7-year-old girl with T1DM who said, “Because I am totally focused on her, I don't allow myself to suffer. Her entire responsibility is on me.”
| Discussion|| |
This study was designed to understand the individual perspectives of mothers who are the primary caregivers of their children in a rigorous diabetes management routine. Data were collected from 13 mothers, mostly belonging to the lower middle class, Indian urban background who had children with T1DM for at least 1 year. The data were thematically analyzed, and seven emergent themes were found.
[Figure 1] presents a map of the emerged global themes. The first theme highlighted the psychological distress of caregiving. The initial distress led to denial for some and shock for others leading to confusion. The shock resulted from the nature and chronicity of the diagnosis. Considering the Indian family system, the mothers are under additional distress with low acceptance by their social circle and family members. Thorsteinsson et al. found such mothers to have a poorer quality of life as compared to mothers of healthy children in five of eight quality-of-life domains: general health, vitality, social functioning, role-emotional, and mental health. Abolhassani et al. (2013) saw similar results, with mothers reporting denial of the diagnosis. Most of the studies suggest that caregivers could cope with diabetes distress with external social systems.,
Another theme explained the multifaceted strain faced by the mothers impacting their economic and interpersonal relations. Moghadam et al. (2022) found that participants and their families lost their equilibrium and they saw long term consequences due to the constant attention dedicated to the child with T1DM.
The need for social support is an important emergent theme. There was an overall lack of an informal support system, and they mention needing such a support system. Moghadam et al. (2022) found that the first source of social support for the mothers was their family. This finding is relevant in the Indian sociocultural background where the role of women is subservient to males or other family members. In the evolving Indian family system, intergenerational values and opinions are given importance and the stigmatization by the family members, neighbors, and educational setups was extremely stressful to them. Palmer et al. (2022) report that mothers would hear comments like their children with T1DM are bewitched or doomed due to their diagnosis which caused them intense distress.
Most participants find themselves socially isolated as the management routine inhibits them from participating in everyday functions. Chan Sun et al. also found that they had seen a sudden social upheaval where it was seen that the mothers chose to stay with their children rather than go out. The current research shows contrary findings where the mothers want to socialize, but are handicapped by the situation. With their responsibility as primary caregivers and familial roles, they often feel burdened.
Most of the mothers belong to a lower socioeconomic background with limited access to advanced health-care facilities and a lack of awareness. This lack of knowledge directly links to another major finding describing the poor T1DM education and stigma. The mothers failed to understand the longevity and the age of onset of the illness, leading to distress. A major reason for this poor awareness and distress may be a lack of a registry in India, and the data provided are an assumed number. Participants in the current study experienced situations where people had stopped their wards from playing with their child with T1DM and some thus resorted to hiding the diagnosis. Thus, there is a major need for spreading awareness of the disease as a part of the curriculum for schools and colleges, awareness camps, lectures, etc.
Despite their distress, they developed coping strategies that aided in their caregiving process. These include being actively involved in the education of diabetes management, prioritizing their worries, and focusing on caregiving rather than ruminating about their worries and concern. They manage their daily hassles by talking to their spouses to relieve them. Khallaf et al. saw that acceptance and engagement with a child's illness was a commonly used coping strategy among Egyptian mothers. Like Egypt, India too is a country that is inherently religious and spiritual, and amid such nations, it is likely that upon being diagnosed, spiritual submission and developing a positive attitude toward the future rather than wallowing in self-pity would be adopted as a coping mechanism.
With limited studies on the caregiving experiences of mothers of children with T1DM in India, the strength of this study is that it was able to gauge the needs of the mothers, which, if fulfilled, would make caregiving a better experience for them and their children. This study highlighted that mothers, being the only responsible caregiver, experience a lack of social support. One identified limitation is that this was a qualitative study; hence, a formal diagnosis of a psychological condition was not done. As this was a small sample study, a larger sample to replicate and generalize the findings would be beneficial.
| Conclusion|| |
Mothers are the pillars of families and child development. Maternal health policies in India are restricted to addressing maternal and neonatal conditions, and various infectious disease control programs under the National Health Mission (2017). This study points out the need to develop models for primary health-care workers, develop legal and policy frameworks, and estimate financial and human resource needs to provide intervention services for mothers at risk or with deteriorating mental health. Maternal mental health, especially in low-income families in developing India, is neglected, particularly in conditions like T1DM where the primary care and intervention is directed toward the child., An integrated multicomponent intervention approach is recommended for better treatment outcomes for the child diagnosed with T1DM, mothers, and family members.,, As India is a resource-limited country, large-scale efforts are needed to increase the availability of maternal mental health programs and to develop simple interventions to reduce maternal distress that primary and community health-care providers can use. Screening maternal mental health status and delivering such interventions through digital media and technology-based services to support mothers can potentially improve access to care.
This study also draws attention to the psychological experiences of mothers in an Indian context, which warrant the need to develop culturally sensitive interventions focusing on the improvement of spousal relationships, improved mother–father work sharing and parenting, and improved family support. The formation of support groups and forums for families of children with T1DM would also aid the management of the initial distress faced after diagnosis by families as well as enhance health, quality of life, and family functioning. Peer volunteer-delivered services and “task sharing” initiatives may also show promising results, thus reducing the impact of the disease on the child, mother, and family on the whole.
The researchers would like to express their gratitude to the participants, Hirabai Cowasjee Jehangir Medical Research Institute (HCJMRI), Dr. Anuradha Khadilkar and the entire staff of HCJMRI for their support through the research.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3]