|Year : 2021 | Volume
| Issue : 3 | Page : 189-194
“Narratives of Mothering”: Lived Experiences of Child-Rearing in Mothers with Severe Mental Illness
Debanjan Banerjee, Rashmi Arasappa, Prabha S Chandra, Geetha Desai
Department of Psychiatry, National Institute of Mental Health and Neurosciences, Bengaluru, Karnataka, India
|Date of Submission||29-Sep-2021|
|Date of Decision||14-Oct-2021|
|Date of Acceptance||10-Nov-2021|
|Date of Web Publication||23-Dec-2021|
Dr. Debanjan Banerjee
Department of Psychiatry, National Institute of Mental Health and Neurosciences, Bengaluru, Karnataka
Source of Support: None, Conflict of Interest: None
Background: Motherhood is a unique phenomenon and not uncommon in women with severe mental illness (SMI). However, little attention has been paid to the voices of these mothers with SMI as to how they navigate it. A qualitative exploration with a social constructivist paradigm was used to understand lived experiences of mothers with SMI during the child-rearing period. Methods: The study used a qualitative design with social constructivist paradigm to obtain data from 30 mothers with SMI who had children <5 years of age. One-to-one in-depth semi-structured interviews were conducted with transcription, and inductive thematic analysis was used to explore transcripts using Charmaz's grounded theory. Triangulation and respondent validation were used to ensure rigor. Results: Emergent categories (themes) were thoughts/feelings about childbearing (considering children as prized and long-awaited possession, motherhood as “therapeutic,” concerns about child's mental health), the impact of mental illness (problems in emotional bonding, separation from children, improved healthcare to serve the maternal role), unmet needs (support groups, empathy, responsibility-sharing, home-based treatment), and caregivers' reactions (blame, discrimination, institutionalization for mental healthcare, custody-related threats). Motherhood as a central part of their identity and burden of balancing “childcare and mental illness” was the overarching categories. Conclusion: The complex emotional journey of a mother with SMI from child-bearing to child-rearing is fraught with many challenges. Developing sensitive and tailored mental health care interventions and policies for them needs to include their own voices, which will improve maternal-child bonding as well as service utilization.
Keywords: Lived experiences, motherhood, mothers, postnatal, qualitative, severe mental illness
|How to cite this article:|
Banerjee D, Arasappa R, Chandra PS, Desai G. “Narratives of Mothering”: Lived Experiences of Child-Rearing in Mothers with Severe Mental Illness. World Soc Psychiatry 2021;3:189-94
|How to cite this URL:|
Banerjee D, Arasappa R, Chandra PS, Desai G. “Narratives of Mothering”: Lived Experiences of Child-Rearing in Mothers with Severe Mental Illness. World Soc Psychiatry [serial online] 2021 [cited 2022 Jan 23];3:189-94. Available from: https://www.worldsocpsychiatry.org/text.asp?2021/3/3/189/333417
| Introduction: Setting the Premise|| |
Contrary to the social myth that women with severe mental illness (SMI) cannot bear or rear children, a growing body of research shows that they have fertility and fecundity rate compared to those without psychiatric disorders., Also, within the population of individuals with SMI, women are substantially more likely to have children than their male counterparts., With mental healthcare services undergoing a paradigm shift to rights-based and gender-sensitive approach, there is a need for the development of research on lived experiences of mothers with SMI. Social stigma, misinformation, discrimination, limited access to treatment, and fear of custody loss of their children often prevent mothers with SMI to disclose their concerns and challenges throughout their journey from conception to child-rearing. A limited number of qualitative studies done in this area reveal themes ranging from distress associated with parenting, dealing with mental illness, separation from children, barriers to disclosure about their need for motherhood, and fear of being labeled.,
The journey is often fraught with numerous challenges that cannot be quantified but only explored through lived experiences. A meta-synthesis by Dolman et al. titled “Pre-conception to parenting” specifically highlighted the need to include voices of the service user mothers to develop adequately tailored psychosocial interventions both for the mother and children. Effects of maternal health on the long-term cognitive and emotional wellbeing of their children is significant and psychiatric illness associated with poor social support has shown to be associated with adverse emotional bonding, disturbed maternal-child relationships, maladaptive parenting style, and emotional disturbances in the early ages of children. The reflections of parenting and the value of mothering a child often mediate the effect of maternal illness on subsequent bonding.,, In this context, literature is mostly focused on prevalence rates, pharmacological treatment of maternal mental illness, child's mental health problems, and patterns of bonding, though it stays largely limited in the areas of their own experiences, perceptions, challenges, and unmet needs of mothers with SMI as they navigate the path from conceiving to rearing a child. Howard et al. mentions that service provisions for mothers with SMI have paid little attention that the majority of mentally ill women do enter motherhood and that understanding the experiences/needs for childbirth in them can provide a strong ground for optimization of perinatal services.
With this background, the current study attempted to understand the first-person accounts of the mothers as they move from preconception to pregnancy. A qualitative approach was used to understand the lived experiences of mothers with SMI related to three different timelines (decision to conceive and preconception; pregnancy; postpregnancy and child-rearing) and also with relation to healthcare access and service providers. The latter is already published elsewhere. In this paper, we will be highlighting the perceptions and challenges of these mothers postpregnancy, i.e., after they delivered and started rearing their children.
| Methods: Exploring Their Voices|| |
We chose a qualitative design with social constructivist paradigm for this study. A constructivist paradigm allows for the exploration of multiple possible truths in the socio-cultural context. Our research question was how did the mothers with SMI perceive conception and child-rearing, as well as what “meaning” did motherhood have for them. Details of the methodology are already published earlier. We recruited the participant mothers from women diagnosed with psychotic depression/schizophrenia/bipolar affective disorder (BPAD) who attended the outpatient and perinatal psychiatric services of the National Institute of Mental Health and Neurosciences, were aged 18 years or more, and had at least one child of preschool age (5 years). We excluded women in whom the SMI had originated after pregnancy or delivery as that could have confounded our findings. Furthermore, women with acute psychiatric concerns, hearing impairment, neurological disorders, and intellectual disability were not included for this study. Written informed consent was obtained from all the participants after they were explained the purpose of the study. The study was approved by the Institutional Ethics Committee.
Data collection and analysis
One-to-one in-depth interviews were conducted based on a semi-structured interview schedule which was formalized after a pilot study on five participants, existing literature, and clinical experience of the researchers. The interviews were supplemented with probes and memo-writing all throughout. The interviews lasted for an average of 92 min, which occasionally went up to 2–3 sessions. All discussions were audio-recorded with consent, transcribed verbatim, and then translated to English (with back-translation by a native speaker). Confidentiality and anonymity were ensured throughout the interview. The researchers had no participation in the treatment decisions of these mothers; however, any relevant clinical information revealed during the interviews was informed to the respective treating teams.
Charmaz's constructivist grounded theory approach was used to analyze the data by two independent researchers (which ensured triangulation). Line-by-line open frame initial coding was followed by specific focused coding (coalesced and condensed codes), which eventually after rigorous discussion with all the authors formed a hierarchical skeleton of categories and themes with meaningful inter-relationships (axial coding). The analysis was aided by memos drafted during the time of interview and constant comparison between the generated themes and the verbatim excerpts to ensure that our results were truly reflective of the participant experiences. Bracketing, peer-debriefing (discussion and debate during the axial coding to arrive at a consensus) and respondent validation (presenting the results to 50% of the sample and re-analyzing it after their inputs) ensured rigor and trustworthiness of the data. The study was reported according to the Consolidated Criteria for Reporting qualitative research guidelines. Based on the timeline of participant mothers, we segregated the results. As mentioned before, here, we discuss the postpregnancy timeline and hence their perceptions and challenges of child-rearing.
| Results|| |
The mean age of the mothers was 24.5 years and mean duration of illness was 19 months. 26 of them were married, 3 separated from their husbands and one divorced. Most of the mothers belonged to middle socio-economic status, were unemployed and educated till high-school. The mean age of their children was 2.9 years. Most of them were suffering from BPAD, while equal numbers had psychotic depression and schizophrenia. More than half of them were in remission for >6 months' duration. Only three of them were living separately from their children. None of the participants had active psychopathology.
Categories and themes
The experiences after delivery were categorized into “thoughts and feelings, the impact of illness, unmet needs and caregivers' reaction.” The resultant categories and themes as obtained and the supporting verbal excerpts from the participants are summarized in [Table 1].
|Table 1: Categories and themes in the postpregnancy timeline based on the participant mothers' experiences|
Click here to view
| Discussion: Contextualizing their “Voices”|| |
The current study explored the lived experiences of child-rearing among women with SMI. A major theme which has been recurrent in the interviews of mothers after delivery has been the importance of their children and how dearly they are regarded in their lives. Mothers acknowledged that having a child in the face of mental illness has been a laborious task and thus they consider their babies as “most special.” Nearly all of them had experienced the first sight of their child as something they have been waiting for a long time. In our study, women had undergone delay in pregnancy, sometimes abortion, been discriminated and labeled by society, including family, as well as self-stigmatized. Prior research has documented that mothers with mental illness, compared to their healthy counterparts, are less emotionally available, less involved, less encouraging, less affectionate and responsive, less able to differentiate their needs from those of their child, and more inconsistent in parenting., This study being different in design does not seek to contradict these findings but, in our sample, we found that not only were the mothers over-vigilant and more involved, but they could consistently discuss the difference between their unmet needs and those of their children as well as how both complemented or interfered with each other. The common unmet needs and reasons for delayed help-seeking during motherhood were the difficulty of women with mental illness to communicate their needs, stigma, perceived expectations of family members not matching with the capacities of mothers, limited by illness and difficulties in bonding, which mothers in our study have themselves pointed out.
More than two-thirds of the mothers wanted to be better with respect to their psychiatric illness to serve their role of “mothering.” This made their compliance to medications and hospital visits more regular. However, concerns about the genetic risk of their illness and mental health of their children were also common which generated various doubts and beliefs. Such concerns have been reflected even in earlier qualitative studies.,, In our study, mothers were more vigilant since delivery and even minor ailments of their children were viewed with “caution.”
Mother-infant bonding concerns are a well-established association with maternal mental illness which may lead to rejection and pathological anger toward the infant. Besides, the risk of relapse in postpartum period is higher which can further impair child care. Every time the mothers were admitted for in-patient care, the reason was not clear to them till insight returned. A common complaint was that the psychiatric facilities were unequipped for keeping their baby with them. This difficulty in psychiatric care provision for the babies of mentally ill women has been pointed out both in past and recent studies,,, but what was interesting in this study was the reluctance of the mothers to let the children come to the hospital in the need of concealing their illness and also the stigma of entering a “psychiatric facility.”
As mentioned by Brockington, bonding difficulties are not always clearly manifested; similarly, women felt the essence of something “not right” but could not do much about it. Besides feeling “failure as a mother” and “setting a bad example,”, there was difficulty in sharing it with family members or health-care providers due to the fear of added blame. This blame, discrimination, and stigma have been there in our participants throughout the timeline, which are discussed elsewhere. Nevertheless, finally “being a mother” was associated with a sense of purpose and something to look forward to, though on the flip side the “apprehension of not being able to be a good mother” and “fear of illness” interfering with child-care persisted.
Since the time of preconception, our participants had several concerns and questions about motherhood, fraught with misinformation. Once they delivered, their child's health was of predominant concern to them and lack of resources, changing healthcare staff, proxy visits by families and lack of gender-sensitive mental health services were the perceived challenges. Our participants constantly felt the need for specific support groups or self-help groups either through organizations or social networking which can discuss their unanswered concerns and at regular periods direct them to the necessary facilities. The common need was for “what to do” rather than “how to do.” The need for social services, self-help groups, support groups, and child-care advisory facilities for mentally ill women have also previously stressed on.,,
Mothers perceived that their responsibility increased after childbirth and child-care was considered as their “sole duty.” More than half of them perceived family's reaction to be blaming and unsatisfactory. Some even compromised their own healthcare to look after the child, lest being labeled as a “bad mother.” However, the “inherent tension between societal ideals around the “good mother” and social norms associated with mental illness” became more evident once the mothers were blamed as there already existed self-blame and self-stigmatization. It can be interpreted as “you feel like bad mothers, if you are told to be bad mothers.” While most of the past research focuses on the difficulty of “dual identity”,, and self-stigma of “being inadequate mothers,” this study also shows the vicious path in the perpetuation of this self-blame with its primary source being the very family of the participants. This becomes extremely important in our socio-cultural context where families are looked upon as a primary source of support after delivery. At times of symptom relapse, they preferred to stay home (even separated from their children), though the perceived reaction from family was that of hospitalization. This made the fear of “custody loss” even prominent.
Another interesting factor was the threat of custody loss. There is an abundance of Western literature which associates SMI in mothers with long-term separation from the child. Mothers often conceal symptoms, are reluctant to seek help, and avoid healthcare facilities to prevent this.,, Custody loss has been associated with an “intense sense of loss, grief and helplessness.” However, in our study, actual custody loss had occurred only in three women. But more nearly one-third were separated from their children in their own homes as in “were not allowed to take care of their child” and allowed “limited time of contact” only in presence of other family members. This was often used in response to blame when mothers failed to perform certain 'expected duties at times of illness and shockingly as “punishment” at times when care for the child “interferes” with their expected daily chores. These “family expectations” were commonly the instrumental activities of daily living that included cooking, looking after family needs (other children if present) and need-based social interactions. We interpret the difference in findings in the way that families resort to “deciding for custody” behind doors to avoid legal systems, related hassles, and the time and energy for the same. Furthermore, many expected roles from the mothers with SMI that interfered with their childcare were based on existing gender-role stereotypes in the society.
The overarching categories “centrality of motherhood” (therapeutic effects of being a mother and childcare and a boost to their social identity) and consistent balancing of dual role as a “patient of SMI” and as a “mother” were present throughout all the timelines in the study and have been discussed in the earlier publications.
To put things in perspective, as one of our participant mothers said,
“You never know what you miss till you feel your own child in your arms. But then comes the evil whisper of the illness.”
Like any qualitative study, the findings cannot be generalized and we do not intend to do so. Memory-related bias and identity of the researchers as healthcare professionals can also be the other possible confounders. Furthermore, breastfeeding practices and decisions form a vital experience for mothers, they are related to bonding and heavily influenced by family beliefs and socio-cultural systems., Even though the participant mothers expressed their concerns about effects of medications on breastfeeding and not being asked about the same while interacting with mental healthcare providers (published earlier), it did not emerge as a prominent theme in their postpregnancy timelines. However, they did mention that their symptoms interfered with childcare responsibilities, which included breastfeeding. Our interview schedule had questions related to breastfeeding experiences, but possibly further probing was necessary to elicit such a sensitive issue. Notwithstanding these limitations, this study with a rigorous method and a heterogenous sample does justice to the “unheard voices” of the participant mothers.
| Conclusion|| |
The journey of a mother with SMI from wanting to delivering and finally rearing a child is complex and fraught with many challenges. As they navigate this roller-coaster ride, there is a constant struggle to move beyond the tag of a “mentally ill individual” to being a “good mother” and develop better bonding with their children. It is further compounded by discrimination, lack of care provisions, and social support. Developing sensitive and tailored mental health care interventions and policies for them needs to include their own voices, which have long been silenced in popular discourse.
To all the participant mothers without whom the study would not have been possible.
Due informed consent was obtained from all the participants.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
McGrath JJ, Hearle J, Jenner L, Plant K, Drummond A, Barkla JM. The fertility and fecundity of patients with psychoses. Acta Psychiatr Scand 1999;99:441-6.
Oyserman D, Mowbray CT, Meares PA, Firminger KB. Parenting among mothers with a serious mental illness. Am J Orthopsychiatry 2000;70:296-315.
Test MA, Burke SS, Wallisch LS. Gender differences of young adults with schizophrenic disorders in community care. Schizophr Bull 1990;16:331-44.
Chandra PS, Saraf G, Bajaj A, Satyanarayana VA. The current status of gender-sensitive mental health services for women findings from a global survey of experts. Arch Womens Ment Health 2019;22:759-70.
Ramsay R, Welch S, Youard E. Needs of women patients with mental illness. Adv Psychiatric Treat 2001;7:85-92.
Perera DN, Short L, Fernbacher S. “It's not that straightforward”: When family support is challenging for mothers living with mental illness. Psychiatr Rehabil J 2014;37:170-5.
Edwards E, Timmons S. A qualitative study of stigma among women suffering postnatal illness. J Ment Health 2005;14:471-81.
Dolman C, Jones I, Howard LM. Pre-conception to parenting: A systematic review and meta-synthesis of the qualitative literature on motherhood for women with severe mental illness. Arch Womens Ment Health 2013;16:173-96.
O'Connor TG, Monk C, Burke AS. Maternal affective illness in the perinatal period and child development: Findings on developmental timing, mechanisms, and intervention. Curr Psychiatry Rep 2016;18:24.
Hearle J, Plant K, Jenner L, Barkla J, McGrath J. A survey of contact with offspring and assistance with child care among parents with psychotic disorders. Psychiatr Serv 1999;50:1354-6.
Howard LM, Kumar R, Thornicroft G. Psychosocial characteristics and needs of mothers with psychotic disorders. Br J Psychiatry 2001;178:427-32.
Banerjee D, Arasappa R, Chandra PS, Desai G. “Hear me out”: Experiences of women with severe mental illness with their healthcare providers in relation to motherhood. Asian J Psychiatry 2021;55:102505.
Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. Int J Qual Health Care 2007;19:349-57.
Gelkopf M, Jabotaro SE. Parenting style, competence, social network and attachment in mothers with mental illness. Child Family Soc Work 2013;18:496-503.
Engqvist I, Ferszt G, Åhlin A, Nilsson K. Women's experience of postpartum psychotic episodes analyses of narratives from the internet. Arch Psychiatr Nurs 2011;25:376-87.
Johnson K. Maternal-infant bonding: A review of literature. Int J Childbirth Educ 2013;28:125.
Robertson E, Lyons A. Living with puerperal psychosis: A qualitative analysis. Psychol Psychother 2003;76:411-31.
Brockington IF, Aucamp HM, Fraser C. Severe disorders of the mother-infant relationship: Definitions and frequency. Arch Womens Ment Health 2006;9:243-51.
Diaz-Caneja A, Johnson S. The views and experiences of severely mentally ill mothers. Soc Psychiatry Psychiatr Epidemiol 2004;39:472-82.
Wilson L, Crowe M. Parenting with a diagnosis bipolar disorder. J Adv Nurs 2009;65:877-84.
Heron J, Gilbert N, Dolman C, Shah S, Beare I, Dearden S, et al
. Information and support needs during recovery from postpartum psychosis. Arch Womens Ment Health 2012;15:155-65.
Davies B, Allen D. Integrating 'mental illness' and “motherhood”: The positive use of surveillance by health professionals. A qualitative study. Int J Nurs Stud 2007;44:365-76.
Ueno R, Kamibeppu K. Narratives by Japanese mothers with chronic mental illness in the Tokyo metropolitan area: Their feelings toward their children and perceptions of their children's feelings. J Nerv Ment Dis 2008;196:522-30.
Hollingsworth LD. Child custody loss among women with persistent severe mental illness. Soc Work Res 2004;28:199-209.