Delayed illness recognition and multiple referrals: A qualitative study exploring care-seeking trajectories contributing to maternal and newborn illnesses and death in southern Tanzania

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Study Justification:
– Maternal and neonatal mortality rates remain high in southern Tanzania despite an increase in facility births.
– The study aims to explore the reasons behind the persistently high mortality rates by examining illness recognition, decision-making, and care-seeking for maternal and neonatal illnesses and deaths.
Study Highlights:
– Timely illness recognition and decision-making were observed for maternal complications.
– Difficulties in interpreting newborn illnesses were reported, leading to delays in care-seeking.
– Care-seeking decisions involved both the mother and her partner or other family members.
– Delays in reaching appropriate care facilities were influenced by multiple referrals.
– Primary-level facilities were often the first point of consultation, but definitive treatment was only available in hospitals.
Study Recommendations:
– Referral and care-seeking advice should include direct care-seeking at hospitals for severe complications.
– Primary facilities should facilitate prompt referral to appropriate care facilities.
Key Role Players:
– Community health workers
– Snowball sampling participants
– Community leaders
– Field supervisor
– Study coordinator
– Senior project staff
– Data collection team
Cost Items for Planning Recommendations:
– Training and compensation for community health workers
– Recruitment and compensation for participants
– Fieldwork logistics (transportation, accommodation, etc.)
– Data collection and analysis software (NVivo)
– Ethics approvals and permissions
– Storage and security of audio files and transcripts
Please note that the actual cost of these items is not provided, only the budget items to consider when planning the recommendations.

The strength of evidence for this abstract is 7 out of 10.
The evidence in the abstract is relatively strong, but there are some areas for improvement. The study conducted 48 in-depth interviews and five focus group discussions, which provides a good amount of qualitative data. The thematic analysis used for interpretation of findings is a robust method. However, the abstract does not provide information on the representativeness of the sample or the specific criteria used for participant selection. Additionally, there is no mention of any limitations or potential biases in the study. To improve the evidence, the abstract could include details on the sampling strategy, such as how participants were recruited and the criteria for inclusion. It would also be helpful to acknowledge any limitations or potential biases in the study, which would enhance the transparency and credibility of the findings.

Background: Maternal and neonatal mortality remain high in southern Tanzania despite an increasing number of births occurring in health facilities. In search for reasons for the persistently high mortality rates, we explored illness recognition, decision-making and care-seeking for cases of maternal and neonatal illness and death. Methods: We conducted 48 in-depth interviews (16 participants who experienced maternal illnesses, 16 mothers whose newborns experienced illness, eight mothers whose newborns died, and eight family members of a household with a maternal death), and five focus group discussions with community leaders in two districts of Mtwara region. Thematic analysis was used for interpretation of findings. Results: Our data indicated relatively timely illness recognition and decision-making for maternal complications. In contrast, families reported difficulties interpreting newborn illnesses. Decisions on care-seeking involved both the mother and her partner or other family members. Delays in care-seeking were therefore also reported in absence of the husband, or at night. Primary-level facilities were first consulted. Most respondents had to consult more than one facility and described difficulties accessing and receiving appropriate care. Definitive treatment for maternal and newborn complications was largely only available in hospitals. Conclusions: Delays in reaching a facility that can provide appropriate care is influenced by multiple referrals from one facility to another. Referral and care-seeking advice should include direct care-seeking at hospitals in case of severe complications and primary facilities should facilitate prompt referral.

The study was conducted in two districts in southern Tanzania (Tandahimba and Newala districts) of Mtwara region in 2015, where the EQUIP study was previously implemented [19, 20]. Most inhabitants of these rural areas belong to the Makonde ethnic group, who primarily engage in subsistence farming. Although most people speak the language of their ethnic group, Kiswahili is widely spoken [21].The uptake of facility births here is high at over 80%, although the neonatal mortality rate is still above 30 per 1000 live births, which is higher than the national average; the national maternal mortality ratio is 556 deaths per 100,000 live births [4, 5]. As we were interested in recruiting participants who had experienced maternal or newborn morbidity and mortality, or family members of a woman who died after giving birth, different methods were employed to recruit respondents. These included using community health workers to help identify cases that were reported to them, snowball sampling methods once participants had been recruited [22], and referrals by community leaders. From these suggestions, we sampled 48 participants purposively [23, 24] from across eight different wards—a sub-district administrative structure—within the two study districts, with differing levels of uptake of facility care. The sample size was chosen to give a sufficient number of interviews to explore different contextual factors that may influence illness recognition and care-seeking in relation to both maternal and newborn illnesses and deaths [18]. Participants in FGDs were village leaders who were purposively selected by the field supervisor based on the inclusion of their wards in the study area. We conducted 48 group in-depth interviews (IDIs) with family members (16 families who had experienced maternal illness, eight families whose family member had died after giving birth, 16 families whose newborn had experienced illness, and eight families whose newborn had died) and five focus group discussions (FGDs) with community leaders [20]. Semi-structured interview guides were designed and pre-tested. All interviews were conducted in Swahili. A debriefing template was provided to the team by the field supervisor and filled in the same day. At the end of each day of fieldwork, the team held a debriefing session and sent a report to the study coordinator, who provided feedback to the team in the field within 12 h during the first week of data collection and within 48 h for the rest of the study period to improve probing and adaptation of interview guides as required. Please see Additional files 1, 2, 3, 4 and 5 for interview and FGD guides. All interviews were audio recorded and transcribed verbatim. After completion of data collection, all debriefing notes and IDI and FGD transcripts were imported into NVivo 9 [25] and analyzed by senior project staff with the data collection team. Analysis began with multiple readings of all data. A codebook was developed and used as a point of comparison and discussion between the team carrying out analysis until a high level of inter-rater agreement about codes could be reached. Thematic analysis was used to group codes together into higher-order sub-themes and overall themes, which we related to the three delays. These themes were reached through group consensus. Representative quotations were selected for each theme and are presented in the results section that follows. Given the sensitive nature of this data collection, a thorough informed consent process was undertaken with each participant, reiterating to them their right to conclude the interview at any point without consequence. Interviewers paid close attention to any distress that participants were under and were instructed to pause or end the interviews as necessary. Written informed consent was obtained from all participants prior to the start of the IDIs and FGD. All transcripts had identifying information removed, and the confidentiality of all participants was protected from the outset and throughout. Audio files and transcripts were stored in password-protected files on secured computers in locked offices, to which only team members had access. The study received ethics approvals from the internal review board of Ifakara Health Institute and the National Institute for Medical Research. Permission was also secured from the local authorities in the study area prior to making ethics applications and beginning any data collection.

Based on the provided description, here are some potential innovations that could improve access to maternal health:

1. Strengthening community health worker programs: Community health workers can play a crucial role in identifying and referring cases of maternal and neonatal illness. Investing in training, supervision, and support for community health workers can improve their ability to recognize and refer cases in a timely manner.

2. Improving communication and education: Many families reported difficulties interpreting newborn illnesses. Providing targeted education and information to families about common signs and symptoms of maternal and neonatal illness can help improve illness recognition and prompt care-seeking.

3. Enhancing referral systems: Delays in reaching a facility that can provide appropriate care were influenced by multiple referrals from one facility to another. Streamlining and strengthening referral systems can help ensure that women and newborns receive timely and appropriate care without unnecessary delays.

4. Increasing availability of definitive treatment at primary-level facilities: Most respondents had to consult more than one facility and described difficulties accessing and receiving appropriate care. Expanding the availability of definitive treatment for maternal and newborn complications at primary-level facilities can reduce the need for multiple referrals and improve access to care.

5. Promoting direct care-seeking at hospitals for severe complications: Referral and care-seeking advice should include direct care-seeking at hospitals in case of severe complications. Raising awareness among families and communities about the importance of seeking care at hospitals for severe complications can help ensure timely access to life-saving interventions.

These innovations can contribute to improving access to maternal health by addressing delays in illness recognition, decision-making, and care-seeking, as well as by strengthening referral systems and expanding the availability of appropriate care at primary-level facilities.
AI Innovations Description
Based on the study conducted in southern Tanzania, the following recommendation can be developed into an innovation to improve access to maternal health:

1. Strengthening community-based education and awareness: Develop and implement community-based programs to educate and raise awareness among community members, especially pregnant women and their families, about the importance of recognizing maternal and newborn illnesses. This can include training community health workers to provide information on common symptoms and signs of complications, as well as the appropriate actions to take in case of illness.

2. Improving communication and referral systems: Enhance communication and referral systems between primary-level facilities and hospitals to ensure timely and appropriate care for maternal and newborn complications. This can involve establishing clear protocols and guidelines for referrals, as well as improving the availability and accessibility of transportation for emergency cases.

3. Strengthening primary-level facilities: Invest in improving the capacity and resources of primary-level facilities to provide basic emergency obstetric and newborn care. This can include training healthcare providers in the management of maternal and newborn complications, ensuring the availability of essential drugs and supplies, and improving the infrastructure and equipment of these facilities.

4. Engaging men and family members: Involve men and other family members in maternal health decision-making and care-seeking processes. This can be done through community education programs that emphasize the importance of male involvement and by providing support and resources for men to accompany their partners to healthcare facilities.

5. Addressing cultural and social barriers: Identify and address cultural and social barriers that may hinder access to maternal health services. This can involve working closely with community leaders and influencers to challenge harmful beliefs and practices, as well as promoting gender equality and women’s empowerment.

By implementing these recommendations, it is expected that access to maternal health services will be improved, leading to a reduction in maternal and neonatal morbidity and mortality rates in southern Tanzania.
AI Innovations Methodology
Based on the provided description, here are some potential recommendations to improve access to maternal health:

1. Strengthen community education and awareness: Develop targeted educational programs to improve knowledge and recognition of maternal and newborn illnesses within the community. This can include training community health workers to provide information on symptoms, when to seek care, and available healthcare facilities.

2. Improve communication and referral systems: Enhance communication and coordination between primary-level facilities and hospitals to ensure timely and appropriate referrals. This can involve implementing standardized referral protocols, establishing clear communication channels, and providing training to healthcare providers on referral processes.

3. Increase availability of comprehensive care: Expand the availability of comprehensive maternal and newborn care services at primary-level facilities to reduce the need for multiple referrals. This can include training healthcare providers in these facilities to manage common complications and providing necessary equipment and supplies.

4. Strengthen emergency obstetric and neonatal care: Ensure that hospitals have the capacity to provide definitive treatment for maternal and newborn complications. This can involve improving infrastructure, staffing, and availability of essential drugs and equipment.

To simulate the impact of these recommendations on improving access to maternal health, a methodology could be developed using the following steps:

1. Define the indicators: Identify specific indicators that reflect access to maternal health, such as the proportion of women receiving timely care for complications, the number of referrals made, or the time taken to reach appropriate care facilities.

2. Collect baseline data: Gather data on the current status of the indicators in the study area. This can be done through surveys, interviews, or existing data sources.

3. Develop a simulation model: Create a mathematical or computational model that simulates the healthcare system and incorporates the proposed recommendations. The model should consider factors such as population demographics, healthcare facility capacities, referral patterns, and the impact of the recommendations on these factors.

4. Input data and run simulations: Input the baseline data into the simulation model and run multiple simulations to assess the impact of the recommendations. This can involve varying parameters such as the coverage of community education programs, the effectiveness of referral systems, or the availability of comprehensive care at primary-level facilities.

5. Analyze results: Analyze the simulation results to determine the potential impact of the recommendations on improving access to maternal health. This can include assessing changes in the indicators of interest and identifying any potential bottlenecks or challenges that may arise.

6. Refine and validate the model: Refine the simulation model based on the analysis of the results and validate it using additional data or expert input. This can help ensure the accuracy and reliability of the model for future use.

By following this methodology, policymakers and healthcare providers can gain insights into the potential impact of different recommendations on improving access to maternal health and make informed decisions on implementing interventions.

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