Journey to facility birth in Zanzibar: A questionnaire-based cohort study of patients’ perspectives on preparedness, access and quality of care

Introduction Tackling substandard maternity care in health facilities requires engaging women’s perspectives in strategies to improve outcomes. This study aims to provide insights in the perspectives of women with severe maternal morbidity on preparedness, access and quality of care in Zanzibar’s referral hospital. Methods In a prospective cohort from April 2017 to December 2018, we performed semistructured interviews with women who experienced maternal near-miss complications and matched controls. These focused on sociodemographic and obstetric characteristics, perceived accessibility to and quality of facility care with 15 domains, scored on a one-to-five scale. Participants’ comments and answers to open questions were employed to illustrate quantitative outcomes. Zanzibar’s Medical Research and Ethics Committee approved the study (ZAMREC/0002/JUN/17). Results We included 174 cases and 151 controls. Compared with controls, patients with a near-miss had less formal education (p=0.049), perceived their wealth as poor (p=0.002) and had a stillbirth more often (p<0.001). Many experienced a delay in deciding to seek care. More than controls, near-miss patients experienced barriers in reaching care (p=0.049), often of financial nature (13.8% vs 4.0%). Quality of care was perceived as high, with means above 3 out of 5, in 14 out of 15 domains. One-fifth had an overall suboptimal experience, mostly regarding informed choice and supplies availability. Additional comments were expressed by a minority of participants. Conclusion Most patients promptly sought, accessed and received maternity care in Zanzibar's referral hospital. A minority experienced barriers, mostly financial, in reaching care and more so among patients with near-miss complications. Quality of facility care was generally highly rated. However, some reported insightful critical perceptions. This study highlights the impact of sociodemographic differences on health, the value of involving patients in decisions regarding maternity care and the need to ensure availability of medical supplies, all which will contribute to improved maternal well-being. From April 2017 to December 2018, we conducted a prospective cohort study at the department of Obstetrics and Gynaecology of MMH. We performed semistructured interviews with women who experienced an MNM and control participants. MNM were identified during the department’s twice daily meetings by a locally adapted and validated version of the WHO near-miss approach (for criteria see online supplemental table 1).7 Controls, matched on a 1:1 ratio, did not have a severely complicated pregnancy and had a similar date of admission (up to 3 days before or after the MNM’s admission date), similar mode of delivery (vaginal, by caesarean section or instrumentally assisted) and similar gestational age (first or second trimester or third trimester preterm or term) as MNM.11 bmjopen-2020-040381supp001.pdf In addition to providing informed consent, inclusion criteria were age of 18 years or above, no severe prediagnosed psychiatric disorders, residence on Unguja (Zanzibar’s main island on which MMH is located) and to be reachable by mobile phone. Informed consent of all participants was obtained in writing or verbally, in case of illiteracy. An interview was performed before discharge or, in case of logistic restrictions, within 1 week of discharge at the participant’s home. The interviews were performed by a researcher and a mediator/translator, both not involved in the clinical care of the woman. The interview comprised the following: sociodemographic characteristics (age, self-reported level of formal education, type of occupation, marital status, perceived wealth), obstetric characteristics (parity—with a grand multiparity defined as a parity above 4, singleton or multiple pregnancy, gestational age, planned location for delivery and pregnancy outcome being abortion, live birth or stillbirth), utilisation and opinion of antenatal care services (not included in this publication), perception on the accessibility of facility care and perception on the quality of facility care (see online supplemental table 2, for the interview outline). We decided to combine quantitative and qualitative outcomes. Employing quantitative measurements of experiences around child birth and satisfaction with healthcare are in line with recent efforts to design validated standard outcome measurements sets, including patient-reported outcomes, such as the Pregnancy and Childbirth set of the International Consortium for Health Outcomes Measurement.12 A quantitative approach allows for easier comparison between categories, across settings and over time. While discussing those experiences on accessibility to and quality of care, the interviewer requested interviewees’ comments in addition to the quantitative scores, which yielded a wealth of quotes. SPSS Statistics (V.25) and OpenEpi (V.3.01) were used for statistical analysis. Numeric outcomes were categorised similarly as in previous studies in this setting: age younger than 20 years, 20–35 years and older than 35 years; and parity zero, one to four or higher than four.7 13 Baseline characteristics were compared using Pearson’s χ2 tests and, in case of small sample sizes, Fisher’s exact test. Regarding quality of care, the interview outcomes were on a 5-point scale, from which means per question were calculated and compared between MNM and controls using Mann-Whitney U tests. Suboptimal care was defined as a score of 3 or lower. Proportions of participants grading the assessed element as suboptimal were reflected in percentages. ORs with 95% CIs were calculated to compare between MNM and controls, to assess if having had a pregnancy with a life-threatening complication affects quality of care perception. We observed a discrepancy between the fact that the majority of patients perceived quality of care as good or very good and the fact that give comments most often had a negative connotation. To investigate this discrepancy further, we compared the frequency of negative comments in participants having scored as positive or as suboptimal on the domain to which the comments pertain. We deemed the number of participants giving comments to be sufficiently high to perform this analysis on four domains: information, informed choice, respect and privacy. A p<0.05 was considered statistically significant. Quotations taken from participants’ comments and answers to open questions were employed to illustrate the quantitative outcomes. The lack of patient’s perspectives in maternal health research in our setting motivated our research questions and methodology. Patients and public were not directly involved in the design of the study, nor in the plans for dissemination. The flexible construct of the interviews did allow the patient to decide on which topics she wanted to elaborate. Dissemination of the study outcomes will, next to publication in an open access scientific journal, take place in the study setting, to the index hospital and to Zanzibar’s Ministry of Health. We hope this study can inspire the local research agenda, motivating patient involvement.