International Journal of Gynecology and Obstetrics 127 (2014) 265–268
Contents lists available at ScienceDirect
International Journal of Gynecology and Obstetrics journal homepage: www.elsevier.com/locate/ijgo
CLINICAL ARTICLE
Survivors’ understanding of vulnerability and resilience to maternal near-miss obstetric events in Uganda Dan K. Kaye a,⁎, Othman Kakaire a, Annettee Nakimuli a, Scovia N. Mbalinda b, Michael O. Osinde c, Nelson Kakande d a
Department of Obstetrics and Gynecology, School of Medicine, College of Health Sciences, Makerere University, Kampala, Uganda Department of Nursing, School of Health Sciences, College of Health Sciences, Makerere University, Kampala, Uganda Department of Obstetrics and Gynecology, Jinja Regional Hospital, Jinja, Uganda d Clinical, Operations and Health Services Research Program, Joint Clinical Research Centre, Kampala, Uganda b c
a r t i c l e
i n f o
Article history: Received 12 January 2014 Received in revised form 28 May 2014 Accepted 10 July 2014 Keywords: Body capital Household finances Maternal near miss Quality of life Resilience Severe obstetric complications Social capital Uganda Vulnerability
a b s t r a c t Objective: To gain an understanding of how obstetric complications affect the lives and livelihoods of survivors. Methods: A phenomenological study was conducted between April and August 2013 at Mulago Hospital, Kampala, Uganda. Data were collected through in-depth interviews among 36 women admitted with obstetric near miss. The interviews investigated perceptions, lived experiences, and meanings attached to such experiences by survivors. More specifically, the questions explored: self-rated health; anticipated social, sexual, and reproductive health challenges; and mitigating factors. Results: The identified themes were prior expectations, vulnerability, body and social capital, and resilience. Women were found to approach childbirth with predetermined expectations that influenced their pregnancy and childbirth experience. Fatalism, expectations, and social insecurity markedly contributed to vulnerability. Resilience factors included ability to institute adaptations and to harness body and social capital. Conclusion: Vulnerabilities and their determinants were found to be inter-related. Individuals’ social capital fluctuates over the acute crisis, necessitating multiple adaptations and coping strategies to reduce vulnerability or increase resilience. Although social and body capital may be mobilized to mitigate the effects of the obstetric crisis, they can either worsen vulnerability or increase resilience. © 2014 International Federation of Gynecology and Obstetrics. Published by Elsevier Ireland Ltd. All rights reserved.
1. Introduction Obstetric near miss refers to women who narrowly survive death as a result of severe obstetric complications (such as eclampsia, obstetric hemorrhage, obstructed labor, or sepsis), particularly associated with organ-system dysfunction [1–3]. Conceptually, obstetric near miss represents a point on a continuum between two extremes, one where pregnancy or childbirth is uncomplicated and another where it is complicated, life-threatening, or fatal [1–3]. Such health crises have challenging physical, financial, and social consequences [4–7]. Where patients rely on out-of-pocket payment for health care, obstetric complications initiate a vicious cycle whereby healthcare costs, morbidity, loss of productivity, and poverty exacerbate each other [4–7]. Delays in seeking health care result in morbidities and disabilities that further reduce economic productivity [4–10], thereby acting as predisposing factors, causes, or catalysts of ill health, poverty, and destitution [1–6]. ⁎ Corresponding author at: Department of Obstetrics and Gynecology, School of Medicine, College of Health Sciences, Makerere University, P.O. Box 7072, Kampala, Uganda. Tel.: +256 414 534361, +256 772 587952. E-mail address: [email protected] (D.K. Kaye).
Social capital refers to resources linked with having strong social networks, social structures, and norms that facilitate cooperation and collective action for individuals [7–16]. It includes neighborhood and work connections, friends, family connections, and associated power relationships. Body capital refers to resources linked with physical health, beauty, and physical productivity [11,13,15,16]. Resilience refers to quick recovery from illness or hardship, and relates to cultural values, primary survival values, and recovery of assets or livelihoods [16–18]. Body and social capital contribute to an individual’s resilience [11–18]. Vulnerability is operationally defined as exposure to increased health risk and health demands in the context of limited social and economic resources needed for protection against risks or mitigation of resultant social and economic consequences [16–18]. The context, conditions, and processes through which vulnerability and resilience emerge and/or are sustained are poorly documented or understood, particularly from the perspective of survivors. The aim of the present study was to gain an understanding of survivors’ perspectives of how obstetric near-miss complications affect their lives and livelihoods. The information gathered might be useful in designing appropriate interventions for both preventing obstetric nearmiss morbidity and for providing treatment and support for survivors.
http://dx.doi.org/10.1016/j.ijgo.2014.05.019 0020-7292/© 2014 International Federation of Gynecology and Obstetrics. Published by Elsevier Ireland Ltd. All rights reserved.
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D.K. Kaye et al. / International Journal of Gynecology and Obstetrics 127 (2014) 265–268
2. Materials and methods A phenomenological study was conducted between April 1 and August 30, 2013, at Mulago Hospital, the national referral center and the teaching hospital for Makerere University, Kampala, Uganda. Women admitted to the high dependency unit with obstetric near miss were recruited. Ethical approval was obtained from the Ethics and Research Committees of Mulago Hospital, the Makerere University College of Health Sciences School of Medicine, and Uganda National Council for Science and Technology. Participants gave written consent to be interviewed and for proceedings to be recorded. Participants were selected by maximum variation sampling to represent different age groups, education level, socioeconomic status, parity, and marital status. To gain a deeper understanding of meanings that survivors attach to obstetric near miss, the perceptions, lived experiences, and meanings attached to such experiences were explored in in-depth structured interviews using an interview guide. The first interview was conducted while the women were in hospital. A second interview was conducted 3–6 months after discharge from hospital at each woman’s nearest health unit. The questions explored: self-rated health; anticipated social, sexual, and reproductive health challenges; and mitigating factors. The interviews lasted 30–50 minutes and were conducted in English and Luganda (a local language); the proceedings were tape-recorded. Handwritten notes were taken during the interviews and later included in the transcripts. At the end of each interview, key points were summarized to participants to verify the data. For data analysis, transcripts were read and phrases of text in which there were words with similar meanings were grouped into categories that were aggregated into themes and subthemes independently by D.K.K. and N.K., after which consensus was reached. A theme was identified as a consistent pattern that described or interpreted aspects of a phenomenon. 3. Results During the study period, 36 women with obstetric near miss completed in-depth interviews (Table 1). Many women had predetermined illogical or unrealistic expectations that influenced their experiences. These expectations were derived from events in current or past pregnancies, information sought during pregnancy, observation of peers, health education during prenatal care, or books on childbirth and parenting. Women with a history of pregnancy complications (such as miscarriage, cesarean delivery, or stillbirth) reported more concerns. Most mothers anticipated or wished for a natural birth, viewing this as a symbol of a “normal” woman. The common expectation was that every woman should have a natural birth (vaginal delivery) with minimal medical intervention. Women’s expectations were informed by advice from older sisters, in-laws, friends with children, colleagues at work, or neighbors, whose input towards expectations was in the form of guidance, cautions, warnings, and blame. Such advice either was gratefully appreciated or was found to be distressing and unhelpful, particularly if it differed from the woman’s own beliefs or expectations. Some expectations were unreasonable or illogical, particularly for women with prior childbirth complications such as obstructed labor, stillbirth, early neonatal death, or hypertensive disorders. Many women were aware that most of these complications tend to recur in subsequent pregnancies. Despite this knowledge, some women did not take the necessary steps to prevent recurrence of the complications. Therefore, women’s anticipation and expectations despite previous complications meant that they took unnecessary risks, leading to further obstetric complications. This led to eventual regret and distress in the case of complications that might have been avoidable or might have been identified earlier if the women had not been complacent. Many women initially attempted to deliver at home or at nearby health units, often on the advice of friends or family members. They
went to hospital only when complications developed or worsened. Such decisions were mainly made by the women’s family members. The fact that the women were not the primary decision makers with regard to seeking health care, together with the complacency, contributed to the delay in making decisions about when and where to seek health care. Many women preferred active participation of their relatives in their birth experience, and wished that family members (spouses or other relatives) were involved in the decision making. However, such involvement led to delays in seeking healthcare, thus contributing to a phaseone delay (related to whether, where, and when to seek health care in case of obstetric complications). Nevertheless, family members were often sent away and not consulted on decisions about the women’s health care. Failure to obtain patient-centered care was a major source of dissatisfaction for many women, because they felt disempowered by the healthcare system. Regarding vulnerability, women’s need to balance responsibilities for economic production and reproduction was a key predisposing factor or a factor that triggered or led to aggravation of vulnerability. Women highlighted a need to participate actively in economic productivity to increase household incomes. To minimize financial difficulties, it was not always possible to stop household work, hire domestic helpers, negotiate adequate rest from work, or obtain money for healthcare expenses. Much as they were aware of likely complications, many women often continued to do heavy household work. Women felt that obstetric complications put them at a greater disadvantage, and expressed fears that men might take this as an excuse to limit or stop them from participation in income-generating activities from which they got independent income. However, women acknowledged that working might mean that they miss opportunities to be monitored during pregnancy. If complications develop, they may take longer to be identified or corrected. For some businesswomen, pregnancy coincided with a busy time of the year, such as the Christmas season, when sales are highest and the workload heaviest. Some could not leave their workplace even when they developed early signs of pregnancy complications, such as headache, swelling of the body, and vomiting. This led to delay in the recognition of complications. In addition, fatalism markedly contributed to vulnerability, whereby survivors attributed negative pregnancy outcomes to providence, fate, or God. Social capital was an asset that was perceived to worsen survivors’ vulnerability in situations where the women’s family, friends, peers, or work colleagues gave wrong advice or advice that eventually put the mothers at risk. As a result of severe obstetric complications, some newborns died and some women had to have a hysterectomy, or developed acute renal failure and underwent dialysis (Table 1). Losses included ill health, hope, support, disability, identity, esteem, and body image. The trauma left these women terrified of childbirth, having received no explanations about what was wrong with them, and they were often abandoned by spouses or other family members. Many of the women experienced altered consciousness or remained under sedation for long periods, and not knowing what happened was the most difficult part of their delivery experience. Regarding ability to recover from the acute obstetric crisis, social networks were mainly perceived as useful for mitigation of social insecurity, because friends and relatives provided critical financial, material, and emotional support, including assistance with household work. Social capital was generally perceived as an essential component of women’s resilience. Other factors that were perceived to aid recovery included a positive attitude, optimism, and ability to regulate emotions (not to worry so much about the event). Some women might resume income-generating work or seek a job with a reduced volume of work. Some women had already resumed work by the time of the second interview, 3–6 months after childbirth, despite having had severe obstetric complications. Therefore, social and body capital might oscillate from being an asset to being a liability. Although many survivors wished to delay any further pregnancies to ensure full recovery, they
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Table 1 Sociodemographic profiles, pregnancy complications, and reasons for definition as obstetric near miss. Age, y
Parity
Education level
Marital status
Complications constituting near-miss morbidity
Neonatal outcome
Organ system dysfunction
Management
18 21a 21 22 24 24a 26a 27 28 28 31a 32 34 36 35a 38 18 21 21 22 24 24 26 27 28 28 31 21 21 22 35 38 27 29 30 31
1 2 2 3 2 2 5 3 7 3 4 3 4 4 5 7 1 1 2 2 2 3 2 2 2 2 2 1 1 1 1 1 2 2 6 4
Primary Primary University Primary Secondary Primary Primary Secondary Secondary University Secondary Secondary Secondary Secondary Secondary Primary Primary University Primary Secondary Primary Primary Secondary Secondary University Secondary Secondary Secondary Secondary Primary Primary University Primary Secondary Primary Primary
Single Single Single Married Married Married Married Married Married Married Married Married Married Married Married Married Single Single Single Single Single Married Married Married Married Married Married Single Single Single Married Single Single Married Married Married
Ruptured uterus Ruptured uterus Ruptured uterus Ruptured uterus Ruptured uterus Ruptured uterus Ruptured uterus Ruptured uterus Ruptured uterus Ruptured uterus Ruptured uterus Ruptured uterus Ruptured uterus Ruptured uterus Ruptured uterus Ruptured uterus Eclampsia Eclampsia Eclampsia Eclampsia Eclampsia Eclampsia Hemorrhagef Hemorrhagef Hemorrhagef HELLP syndrome HELLP syndrome Postabortiong Postabortiong Postabortiong Obstructed labor Obstructed labor Obstructed labor Obstructed labor Puerperal sepsis Puerperal sepsis
Died Died Diedb Died Died Died Diedb Diedb Lived Died Died Diedb Died Diedb Died Lived Died Diedb Died Diedb Alive Died Diedb Lived Lived Lived Diedb – – – Died Diedb Lived Lived Lived Diedb
Septic shock Septic shock Shockc Shockc Renal failure Shockc DIC Septic shock Pulmonary embolism Septic shock DIC Shockc DIC Shockc DIC Shockc Renal failure Liver rupture DIC Renal failure Renal failure Renal failure Renal failure DIC and shockc DIC and shockc DIC and shock Renal failure Renal failure Shock and renal failure Septic shock Septic shock Shockc Shockc Shockc Septic shock DIC and shock
Repaired Hysterectomy Repaired Repairedd Hysterectomy Repairedd Hysterectomy Hysterectomy Repaired Hysterectomy Hysterectomy Repaired Hysterectomy Repaired Hysterectomy Repairedd ICU ICU Dialysis Intubatione Dialysis Intubatione ICU and dialysis – – ICU and dialysis Dialysis Hysterectomy Hysterectomy Hysterectomy – – – – Hysterectomy
Abbreviations: DIC, disseminated intravascular coagulopathy; ICU, intensive care unit; HELLP, hemolysis, elevated liver enzymes, low platelet count. a Developed a urinary fistula. b Early neonatal death. c Severe hypovolemic shock with transfusion of more than 4 units of blood. d Repair of the uterus with tubal ligation. e Intubation unrelated to anesthesia procedure. f Severe postpartum hemorrhage. g Postabortion hemorrhage or severe sepsis.
were not always able to do so, and soon resumed work or conceived again before full recovery. 4. Discussion The present findings indicate that prior expectations about childbirth inter-relate with individuals’ body and social capital to influence women’s judgment, decision making, and health-seeking behaviors during pregnancy and childbirth, thereby influencing vulnerability and resilience. The findings agree with studies showing that obstetric near-miss morbidity causes physical, emotional, and psychological consequences; leads to economic losses and reduced economic productivity; and causes loss of body image, esteem, and identity [1–3,5–10]. Many women may have high expectations prior to childbirth, on the basis of socially constructed beliefs [19–22]. This might lead to feelings of personal failure in situations where expectations are unmet. Setting new expectations, loss of body capital (as in severe birth injuries), and multiple losses (physical, emotional, financial, and social losses) increase vulnerability [4–10]. Vulnerability may arise from unrealistic or unmet expectations, financial difficulties, and adjustments to cope with ensuing adversities. Social and body capital oscillate from being assets to becoming liabilities, and vice versa [4–10], thereby contributing to, or mitigating vulnerability or resilience. Survivors negotiate health concerns among other concerns such as love, relationships,
security, and survival, reflecting the structuring of risk and vulnerability [18]. Social, economic, interpersonal, and health-related vulnerabilities are inter-related [18]. Acute obstetric complications may arise from vulnerabilities. However, by causing physical, financial, economic, or psychological loss, obstetric near-miss morbidity increases vulnerability or diminishes resilience, body capital, and social capital. This occurs through disruption of interpersonal relationships, physical and psychological consequences, and emotional or financial loss. The findings reveal that individuals and groups of women who are marginalized and carry the burden of deprivation and poverty get exposed to risks when they already have limited capacity to manage or cope with these risks (as evidenced by limited access to assets, lack of insurance, limited social networks, and ineffective coping strategies). As limitations, the present study involved few obstetric near-miss cases, was hospital-based, had a short follow-up period, used only in-depth interviews, and did not compare the perceptions of women with uncomplicated childbirth with those of women who had obstetric near miss. Nevertheless, the study design was appropriate: interviews were conducted on more than one occasion, assessed the participants’ prior expectations during and before childbirth, and provided an in-depth description of women’s perceptions and interpretations of their situation. The findings show that women whose expectations have been achieved are more likely to be satisfied with their childbirth experience,
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as found in previous studies [22–25]. Vulnerability is both a condition and a process [18]. Resilience and vulnerability reflect static and dynamic dimensions of the context, focusing on ways in which women respond to and are affected by recurrent shocks [18]. Unrealistic or unmet expectations and vulnerability are related to difficult postnatal adjustment, decreased self-esteem, and feelings of inadequacy [22–25]. Vulnerability increases among women who are dissatisfied with the childbirth experience or outcome [19,24,25]. Vulnerability reflects initial or underlying conditions, effects of exposure to risks or shocks that affect an individual’s wellbeing, and capacity to cope with risks or their consequences [18]. Managing initial shocks reduces an affected individual’s resources and capacity to cope with subsequent shocks [18]. In conclusion, women’s expectations before delivery influence their childbirth experience and, consequently, their vulnerability and resilience. Context is critical to understand vulnerability and resilience. Risks and their health impacts are interconnected and reinforce each other. Some attributes of women make them more likely to suffer harm from exposure to health risks as compared with others. Women with severe obstetric complications should be screened for psychological distress, which is a proxy marker of vulnerability. Acknowledgments The study was part of a post-doctoral research project funded by the Swedish International Development Cooperation Agency through the Makerere University–Karolinska Institutet postdoctoral-research grants. Conflict of interest The authors have no conflicts of interest. References [1] Say L, Souza JP, Pattinson RC. WHO working group on Maternal Mortality and Morbidity classifications. Maternal near miss—towards a standard tool for monitoring quality of maternal health care. Best Pract Res Clin Obstet Gynaecol 2009;23(3):287–96. [2] Geller SE, Rosenberg D, Cox SM, Brown ML, Simonson L, Driscoll CA, et al. The continuum of maternal morbidity and mortality: factors associated with severity. Am J Obstet Gynecol 2004;191(3):939–44. [3] Mantel GD, Buchmann E, Rees H, Pattinson RC. Severe acute maternal morbidity: a pilot study of a definition for a near-miss. Br J Obstet Gynaecol 1998;105(9):985–90. [4] Storeng KT, Baggaley RF, Ganaba R, Ouattara F, Akoum MS, Filippi V. Paying the price: the cost and consequences of emergency obstetric care in Burkina Faso. Soc Sci Med 2008;66(3):545–57.
[5] Storeng KT, Murray SF, Akoum MS, Ouattara F, Filippi V. Beyond body counts: a qualitative study of lives and loss in Burkina Faso after ‘near-miss’ obstetric complications. Soc Sci Med 2010;71(10):1749–56. [6] Storeng KT, Akoum MS, Murray SF. ‘This year I will not put her to work’: the production/reproduction nexus in Burkina Faso. Anthropol Med 2013;20(1):85–97. [7] Murray SF, Akoum MS, Storeng KT. Capitals diminished, denied, mustered and deployed. A qualitative longitudinal study of women's four year trajectories after acute health crisis, Burkina Faso. Soc Sci Med 2012;75(12):2455–62. [8] Su TT, Kouyaté B, Flessa S. Catastrophic household expenditure for health care in a low-income society: a study from Nouna District, Burkina Faso. Bull World Health Organ 2006;84(1):21–7. [9] Borghi J, Hanson K, Acquah CA, Ekanmian G, Filippi V, Ronsmans C, et al. Costs of near-miss obstetric complications for women and their families in Benin and Ghana. Health Policy Plan 2003;18(4):383–90. [10] Storeng KT, Drabo S, Filippi V. Too poor to live? A case study of vulnerability and maternal mortality in Burkina Faso. Glob Health Promot 2013;20(1 Suppl.):33–8. [11] Bourdieu P. The Forms of Capital. In: Richardson JG, editor. Handbook of Theory and Research for the Sociology of Education. Westport, CT: Greenwood Press; 1986. p. 241–58. [12] Kawachi I, Kennedy BP, Glass R. Social capital and self-rated health: a contextual analysis. Am J Public Health 1999;89(8):1187–93. [13] Pearce N, Davey Smith G. Is social capital the key to inequalities in health? Am J Public Health 2003;93(1):122–9. [14] Abel T, Frohlich KL. Capitals and capabilities: linking structure and agency to reduce health inequalities. Soc Sci Med 2012;74(2):236–44. [15] Lomas J. Social capital and health: implications for public health and epidemiology. Soc Sci Med 1998;47(9):1181–8. [16] Islam MK, Merlo J, Kawachi I, Lindström M, Gerdtham UG. Social capital and health: does egalitarianism matter? A literature review. Int J Equity Health 2006;5:3. [17] Manyena SB. The concept of resilience revisited. Disasters 2006;30(4):433–50. [18] Zarowsky C, Haddad S, Nguyen VK. Beyond ‘vulnerable groups’: contexts and dynamics of vulnerability. Glob Health Promot 2013;20(1 Suppl.):3–9 80–7, 92–9. [19] Hodnett ED. Pain and women's satisfaction with the experience of childbirth: a systematic review. Am J Obstet Gynecol 2002;186(5 Suppl. Nature):S160–72. [20] Hauck Y, Fenwick J, Downie J, Butt J. The influence of childbirth expectations on Western Australian women’s perceptions of their birth experience. Midwifery 2007;23(3):235–47. [21] Fenwick S, Holloway I, Alexander J. Achieving normality: the key to status passage to motherhood after a caesarean section. Midwifery 2009;25(5):554–63. [22] Darvill R, Skirton H, Farrand P. Psychological factors that impact on women's experiences of first-time motherhood: a qualitative study of the transition. Midwifery 2010;26(3):357–66. [23] Christiaens W, Bracke P. Assessment of social psychological determinants of satisfaction with childbirth in a cross-national perspective. BMC Pregnancy Childbirth 2007;7:26. [24] Kendell RE. Emotional and physical factors in the genesis of puerperal mental disorders. J Psychosom Res 1985;29(1):3–11. [25] Goodman P, Mackey MC, Tavakoli AS. Factors related to childbirth satisfaction. J Adv Nurs 2004;46(2):212–9.
Contents lists available at ScienceDirect
International Journal of Gynecology and Obstetrics journal homepage: www.elsevier.com/locate/ijgo
CLINICAL ARTICLE
Survivors’ understanding of vulnerability and resilience to maternal near-miss obstetric events in Uganda Dan K. Kaye a,⁎, Othman Kakaire a, Annettee Nakimuli a, Scovia N. Mbalinda b, Michael O. Osinde c, Nelson Kakande d a
Department of Obstetrics and Gynecology, School of Medicine, College of Health Sciences, Makerere University, Kampala, Uganda Department of Nursing, School of Health Sciences, College of Health Sciences, Makerere University, Kampala, Uganda Department of Obstetrics and Gynecology, Jinja Regional Hospital, Jinja, Uganda d Clinical, Operations and Health Services Research Program, Joint Clinical Research Centre, Kampala, Uganda b c
a r t i c l e
i n f o
Article history: Received 12 January 2014 Received in revised form 28 May 2014 Accepted 10 July 2014 Keywords: Body capital Household finances Maternal near miss Quality of life Resilience Severe obstetric complications Social capital Uganda Vulnerability
a b s t r a c t Objective: To gain an understanding of how obstetric complications affect the lives and livelihoods of survivors. Methods: A phenomenological study was conducted between April and August 2013 at Mulago Hospital, Kampala, Uganda. Data were collected through in-depth interviews among 36 women admitted with obstetric near miss. The interviews investigated perceptions, lived experiences, and meanings attached to such experiences by survivors. More specifically, the questions explored: self-rated health; anticipated social, sexual, and reproductive health challenges; and mitigating factors. Results: The identified themes were prior expectations, vulnerability, body and social capital, and resilience. Women were found to approach childbirth with predetermined expectations that influenced their pregnancy and childbirth experience. Fatalism, expectations, and social insecurity markedly contributed to vulnerability. Resilience factors included ability to institute adaptations and to harness body and social capital. Conclusion: Vulnerabilities and their determinants were found to be inter-related. Individuals’ social capital fluctuates over the acute crisis, necessitating multiple adaptations and coping strategies to reduce vulnerability or increase resilience. Although social and body capital may be mobilized to mitigate the effects of the obstetric crisis, they can either worsen vulnerability or increase resilience. © 2014 International Federation of Gynecology and Obstetrics. Published by Elsevier Ireland Ltd. All rights reserved.
1. Introduction Obstetric near miss refers to women who narrowly survive death as a result of severe obstetric complications (such as eclampsia, obstetric hemorrhage, obstructed labor, or sepsis), particularly associated with organ-system dysfunction [1–3]. Conceptually, obstetric near miss represents a point on a continuum between two extremes, one where pregnancy or childbirth is uncomplicated and another where it is complicated, life-threatening, or fatal [1–3]. Such health crises have challenging physical, financial, and social consequences [4–7]. Where patients rely on out-of-pocket payment for health care, obstetric complications initiate a vicious cycle whereby healthcare costs, morbidity, loss of productivity, and poverty exacerbate each other [4–7]. Delays in seeking health care result in morbidities and disabilities that further reduce economic productivity [4–10], thereby acting as predisposing factors, causes, or catalysts of ill health, poverty, and destitution [1–6]. ⁎ Corresponding author at: Department of Obstetrics and Gynecology, School of Medicine, College of Health Sciences, Makerere University, P.O. Box 7072, Kampala, Uganda. Tel.: +256 414 534361, +256 772 587952. E-mail address: [email protected] (D.K. Kaye).
Social capital refers to resources linked with having strong social networks, social structures, and norms that facilitate cooperation and collective action for individuals [7–16]. It includes neighborhood and work connections, friends, family connections, and associated power relationships. Body capital refers to resources linked with physical health, beauty, and physical productivity [11,13,15,16]. Resilience refers to quick recovery from illness or hardship, and relates to cultural values, primary survival values, and recovery of assets or livelihoods [16–18]. Body and social capital contribute to an individual’s resilience [11–18]. Vulnerability is operationally defined as exposure to increased health risk and health demands in the context of limited social and economic resources needed for protection against risks or mitigation of resultant social and economic consequences [16–18]. The context, conditions, and processes through which vulnerability and resilience emerge and/or are sustained are poorly documented or understood, particularly from the perspective of survivors. The aim of the present study was to gain an understanding of survivors’ perspectives of how obstetric near-miss complications affect their lives and livelihoods. The information gathered might be useful in designing appropriate interventions for both preventing obstetric nearmiss morbidity and for providing treatment and support for survivors.
http://dx.doi.org/10.1016/j.ijgo.2014.05.019 0020-7292/© 2014 International Federation of Gynecology and Obstetrics. Published by Elsevier Ireland Ltd. All rights reserved.
266
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2. Materials and methods A phenomenological study was conducted between April 1 and August 30, 2013, at Mulago Hospital, the national referral center and the teaching hospital for Makerere University, Kampala, Uganda. Women admitted to the high dependency unit with obstetric near miss were recruited. Ethical approval was obtained from the Ethics and Research Committees of Mulago Hospital, the Makerere University College of Health Sciences School of Medicine, and Uganda National Council for Science and Technology. Participants gave written consent to be interviewed and for proceedings to be recorded. Participants were selected by maximum variation sampling to represent different age groups, education level, socioeconomic status, parity, and marital status. To gain a deeper understanding of meanings that survivors attach to obstetric near miss, the perceptions, lived experiences, and meanings attached to such experiences were explored in in-depth structured interviews using an interview guide. The first interview was conducted while the women were in hospital. A second interview was conducted 3–6 months after discharge from hospital at each woman’s nearest health unit. The questions explored: self-rated health; anticipated social, sexual, and reproductive health challenges; and mitigating factors. The interviews lasted 30–50 minutes and were conducted in English and Luganda (a local language); the proceedings were tape-recorded. Handwritten notes were taken during the interviews and later included in the transcripts. At the end of each interview, key points were summarized to participants to verify the data. For data analysis, transcripts were read and phrases of text in which there were words with similar meanings were grouped into categories that were aggregated into themes and subthemes independently by D.K.K. and N.K., after which consensus was reached. A theme was identified as a consistent pattern that described or interpreted aspects of a phenomenon. 3. Results During the study period, 36 women with obstetric near miss completed in-depth interviews (Table 1). Many women had predetermined illogical or unrealistic expectations that influenced their experiences. These expectations were derived from events in current or past pregnancies, information sought during pregnancy, observation of peers, health education during prenatal care, or books on childbirth and parenting. Women with a history of pregnancy complications (such as miscarriage, cesarean delivery, or stillbirth) reported more concerns. Most mothers anticipated or wished for a natural birth, viewing this as a symbol of a “normal” woman. The common expectation was that every woman should have a natural birth (vaginal delivery) with minimal medical intervention. Women’s expectations were informed by advice from older sisters, in-laws, friends with children, colleagues at work, or neighbors, whose input towards expectations was in the form of guidance, cautions, warnings, and blame. Such advice either was gratefully appreciated or was found to be distressing and unhelpful, particularly if it differed from the woman’s own beliefs or expectations. Some expectations were unreasonable or illogical, particularly for women with prior childbirth complications such as obstructed labor, stillbirth, early neonatal death, or hypertensive disorders. Many women were aware that most of these complications tend to recur in subsequent pregnancies. Despite this knowledge, some women did not take the necessary steps to prevent recurrence of the complications. Therefore, women’s anticipation and expectations despite previous complications meant that they took unnecessary risks, leading to further obstetric complications. This led to eventual regret and distress in the case of complications that might have been avoidable or might have been identified earlier if the women had not been complacent. Many women initially attempted to deliver at home or at nearby health units, often on the advice of friends or family members. They
went to hospital only when complications developed or worsened. Such decisions were mainly made by the women’s family members. The fact that the women were not the primary decision makers with regard to seeking health care, together with the complacency, contributed to the delay in making decisions about when and where to seek health care. Many women preferred active participation of their relatives in their birth experience, and wished that family members (spouses or other relatives) were involved in the decision making. However, such involvement led to delays in seeking healthcare, thus contributing to a phaseone delay (related to whether, where, and when to seek health care in case of obstetric complications). Nevertheless, family members were often sent away and not consulted on decisions about the women’s health care. Failure to obtain patient-centered care was a major source of dissatisfaction for many women, because they felt disempowered by the healthcare system. Regarding vulnerability, women’s need to balance responsibilities for economic production and reproduction was a key predisposing factor or a factor that triggered or led to aggravation of vulnerability. Women highlighted a need to participate actively in economic productivity to increase household incomes. To minimize financial difficulties, it was not always possible to stop household work, hire domestic helpers, negotiate adequate rest from work, or obtain money for healthcare expenses. Much as they were aware of likely complications, many women often continued to do heavy household work. Women felt that obstetric complications put them at a greater disadvantage, and expressed fears that men might take this as an excuse to limit or stop them from participation in income-generating activities from which they got independent income. However, women acknowledged that working might mean that they miss opportunities to be monitored during pregnancy. If complications develop, they may take longer to be identified or corrected. For some businesswomen, pregnancy coincided with a busy time of the year, such as the Christmas season, when sales are highest and the workload heaviest. Some could not leave their workplace even when they developed early signs of pregnancy complications, such as headache, swelling of the body, and vomiting. This led to delay in the recognition of complications. In addition, fatalism markedly contributed to vulnerability, whereby survivors attributed negative pregnancy outcomes to providence, fate, or God. Social capital was an asset that was perceived to worsen survivors’ vulnerability in situations where the women’s family, friends, peers, or work colleagues gave wrong advice or advice that eventually put the mothers at risk. As a result of severe obstetric complications, some newborns died and some women had to have a hysterectomy, or developed acute renal failure and underwent dialysis (Table 1). Losses included ill health, hope, support, disability, identity, esteem, and body image. The trauma left these women terrified of childbirth, having received no explanations about what was wrong with them, and they were often abandoned by spouses or other family members. Many of the women experienced altered consciousness or remained under sedation for long periods, and not knowing what happened was the most difficult part of their delivery experience. Regarding ability to recover from the acute obstetric crisis, social networks were mainly perceived as useful for mitigation of social insecurity, because friends and relatives provided critical financial, material, and emotional support, including assistance with household work. Social capital was generally perceived as an essential component of women’s resilience. Other factors that were perceived to aid recovery included a positive attitude, optimism, and ability to regulate emotions (not to worry so much about the event). Some women might resume income-generating work or seek a job with a reduced volume of work. Some women had already resumed work by the time of the second interview, 3–6 months after childbirth, despite having had severe obstetric complications. Therefore, social and body capital might oscillate from being an asset to being a liability. Although many survivors wished to delay any further pregnancies to ensure full recovery, they
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Table 1 Sociodemographic profiles, pregnancy complications, and reasons for definition as obstetric near miss. Age, y
Parity
Education level
Marital status
Complications constituting near-miss morbidity
Neonatal outcome
Organ system dysfunction
Management
18 21a 21 22 24 24a 26a 27 28 28 31a 32 34 36 35a 38 18 21 21 22 24 24 26 27 28 28 31 21 21 22 35 38 27 29 30 31
1 2 2 3 2 2 5 3 7 3 4 3 4 4 5 7 1 1 2 2 2 3 2 2 2 2 2 1 1 1 1 1 2 2 6 4
Primary Primary University Primary Secondary Primary Primary Secondary Secondary University Secondary Secondary Secondary Secondary Secondary Primary Primary University Primary Secondary Primary Primary Secondary Secondary University Secondary Secondary Secondary Secondary Primary Primary University Primary Secondary Primary Primary
Single Single Single Married Married Married Married Married Married Married Married Married Married Married Married Married Single Single Single Single Single Married Married Married Married Married Married Single Single Single Married Single Single Married Married Married
Ruptured uterus Ruptured uterus Ruptured uterus Ruptured uterus Ruptured uterus Ruptured uterus Ruptured uterus Ruptured uterus Ruptured uterus Ruptured uterus Ruptured uterus Ruptured uterus Ruptured uterus Ruptured uterus Ruptured uterus Ruptured uterus Eclampsia Eclampsia Eclampsia Eclampsia Eclampsia Eclampsia Hemorrhagef Hemorrhagef Hemorrhagef HELLP syndrome HELLP syndrome Postabortiong Postabortiong Postabortiong Obstructed labor Obstructed labor Obstructed labor Obstructed labor Puerperal sepsis Puerperal sepsis
Died Died Diedb Died Died Died Diedb Diedb Lived Died Died Diedb Died Diedb Died Lived Died Diedb Died Diedb Alive Died Diedb Lived Lived Lived Diedb – – – Died Diedb Lived Lived Lived Diedb
Septic shock Septic shock Shockc Shockc Renal failure Shockc DIC Septic shock Pulmonary embolism Septic shock DIC Shockc DIC Shockc DIC Shockc Renal failure Liver rupture DIC Renal failure Renal failure Renal failure Renal failure DIC and shockc DIC and shockc DIC and shock Renal failure Renal failure Shock and renal failure Septic shock Septic shock Shockc Shockc Shockc Septic shock DIC and shock
Repaired Hysterectomy Repaired Repairedd Hysterectomy Repairedd Hysterectomy Hysterectomy Repaired Hysterectomy Hysterectomy Repaired Hysterectomy Repaired Hysterectomy Repairedd ICU ICU Dialysis Intubatione Dialysis Intubatione ICU and dialysis – – ICU and dialysis Dialysis Hysterectomy Hysterectomy Hysterectomy – – – – Hysterectomy
Abbreviations: DIC, disseminated intravascular coagulopathy; ICU, intensive care unit; HELLP, hemolysis, elevated liver enzymes, low platelet count. a Developed a urinary fistula. b Early neonatal death. c Severe hypovolemic shock with transfusion of more than 4 units of blood. d Repair of the uterus with tubal ligation. e Intubation unrelated to anesthesia procedure. f Severe postpartum hemorrhage. g Postabortion hemorrhage or severe sepsis.
were not always able to do so, and soon resumed work or conceived again before full recovery. 4. Discussion The present findings indicate that prior expectations about childbirth inter-relate with individuals’ body and social capital to influence women’s judgment, decision making, and health-seeking behaviors during pregnancy and childbirth, thereby influencing vulnerability and resilience. The findings agree with studies showing that obstetric near-miss morbidity causes physical, emotional, and psychological consequences; leads to economic losses and reduced economic productivity; and causes loss of body image, esteem, and identity [1–3,5–10]. Many women may have high expectations prior to childbirth, on the basis of socially constructed beliefs [19–22]. This might lead to feelings of personal failure in situations where expectations are unmet. Setting new expectations, loss of body capital (as in severe birth injuries), and multiple losses (physical, emotional, financial, and social losses) increase vulnerability [4–10]. Vulnerability may arise from unrealistic or unmet expectations, financial difficulties, and adjustments to cope with ensuing adversities. Social and body capital oscillate from being assets to becoming liabilities, and vice versa [4–10], thereby contributing to, or mitigating vulnerability or resilience. Survivors negotiate health concerns among other concerns such as love, relationships,
security, and survival, reflecting the structuring of risk and vulnerability [18]. Social, economic, interpersonal, and health-related vulnerabilities are inter-related [18]. Acute obstetric complications may arise from vulnerabilities. However, by causing physical, financial, economic, or psychological loss, obstetric near-miss morbidity increases vulnerability or diminishes resilience, body capital, and social capital. This occurs through disruption of interpersonal relationships, physical and psychological consequences, and emotional or financial loss. The findings reveal that individuals and groups of women who are marginalized and carry the burden of deprivation and poverty get exposed to risks when they already have limited capacity to manage or cope with these risks (as evidenced by limited access to assets, lack of insurance, limited social networks, and ineffective coping strategies). As limitations, the present study involved few obstetric near-miss cases, was hospital-based, had a short follow-up period, used only in-depth interviews, and did not compare the perceptions of women with uncomplicated childbirth with those of women who had obstetric near miss. Nevertheless, the study design was appropriate: interviews were conducted on more than one occasion, assessed the participants’ prior expectations during and before childbirth, and provided an in-depth description of women’s perceptions and interpretations of their situation. The findings show that women whose expectations have been achieved are more likely to be satisfied with their childbirth experience,
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as found in previous studies [22–25]. Vulnerability is both a condition and a process [18]. Resilience and vulnerability reflect static and dynamic dimensions of the context, focusing on ways in which women respond to and are affected by recurrent shocks [18]. Unrealistic or unmet expectations and vulnerability are related to difficult postnatal adjustment, decreased self-esteem, and feelings of inadequacy [22–25]. Vulnerability increases among women who are dissatisfied with the childbirth experience or outcome [19,24,25]. Vulnerability reflects initial or underlying conditions, effects of exposure to risks or shocks that affect an individual’s wellbeing, and capacity to cope with risks or their consequences [18]. Managing initial shocks reduces an affected individual’s resources and capacity to cope with subsequent shocks [18]. In conclusion, women’s expectations before delivery influence their childbirth experience and, consequently, their vulnerability and resilience. Context is critical to understand vulnerability and resilience. Risks and their health impacts are interconnected and reinforce each other. Some attributes of women make them more likely to suffer harm from exposure to health risks as compared with others. Women with severe obstetric complications should be screened for psychological distress, which is a proxy marker of vulnerability. Acknowledgments The study was part of a post-doctoral research project funded by the Swedish International Development Cooperation Agency through the Makerere University–Karolinska Institutet postdoctoral-research grants. Conflict of interest The authors have no conflicts of interest. References [1] Say L, Souza JP, Pattinson RC. WHO working group on Maternal Mortality and Morbidity classifications. Maternal near miss—towards a standard tool for monitoring quality of maternal health care. Best Pract Res Clin Obstet Gynaecol 2009;23(3):287–96. [2] Geller SE, Rosenberg D, Cox SM, Brown ML, Simonson L, Driscoll CA, et al. The continuum of maternal morbidity and mortality: factors associated with severity. Am J Obstet Gynecol 2004;191(3):939–44. [3] Mantel GD, Buchmann E, Rees H, Pattinson RC. Severe acute maternal morbidity: a pilot study of a definition for a near-miss. Br J Obstet Gynaecol 1998;105(9):985–90. [4] Storeng KT, Baggaley RF, Ganaba R, Ouattara F, Akoum MS, Filippi V. Paying the price: the cost and consequences of emergency obstetric care in Burkina Faso. Soc Sci Med 2008;66(3):545–57.
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