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The Child Health and Mortality Prevention Surveillance (CHAMPS) program is a 7-country network (as of December 2018) established by the Bill & Melinda Gates Foundation to identify the causes of death in children in communities with high rates of under-5 mortality. The program carries out both mortality and pregnancy surveillance, and mortality surveillance employs minimally invasive tissue sampling (MITS) to gather small samples of body fluids and tissue from the bodies of children who have died. While this method will lead to greater knowledge of the specific causes of childhood mortality, the procedure is in tension with cultural and religious norms in many of the countries where CHAMPS works – Bangladesh, Ethiopia, Kenya, Mali, Mozambique, Sierra Leone, and South Africa. Participatory Inquiry Into Community Knowledge of Child Health and Mortality Prevention (PICK-CHAMP) is a community entry activity designed to introduce CHAMPS to communities and gather initial perspectives on alignments and tensions between CHAMPS activities and community perceptions and priorities. Participants’ responses revealed medium levels of overall alignment in all sites (with the exception of South Africa, where alignment was high) and medium levels of tension (with the exception of Ethiopia, where tension was high). Alignment was high and tension was low for pregnancy surveillance across all sites, whereas Ethiopia reflected low alignment and high tension for MITS. Participants across all sites indicated that support for MITS was possible only if the procedure did not interfere with burial practices and rituals.
Design and Rationale PICK-CHAMP consists of 2 separate daylong workshops: one for community leaders contains 7 exercises, and one for community members-at-large contains 6 exercises. An annotated version of the PICK-CHAMP curriculum and various explanatory tables for measuring alignment and tension are included as Supplementary Data. The annotated curriculum in the Supplementary Data includes objectives and brief descriptions of all exercises for both workshops. The rationale for designing the workshop content focused on answering the following 4 questions: (1) How do CHAMPS mortality activities align with or stand in tension with the community’s own priorities, norms, and perceptions? (2) What are the most powerful factors for community members that affect pregnancy and childhood health? (3) What are the most important activities that happen in the community when a woman discovers she is pregnant or when a child dies? (4) Who are the most influential individuals or organizations in the community with whom CHAMPS should work to build partnerships? Participants’ responses in relation to the first question were used to frame community discussions and craft messages about CHAMPS that reflect the community’s point of view. Those responses also served as a reminder to CHAMPS staff that even when community members support CHAMPS, they will articulate the program’s benefits to the community from their own viewpoint and that viewpoint may not always reflect the benefits articulated by epidemiologists, research scientists, or clinical providers. Responses to the second question were used to assess the extent to which community perceptions of maternal and child health align with effective models of antenatal and pediatric care. Responses in relation to the third question allowed CHAMPS to examine not only beliefs but also practices related to pregnancy and child death. This allowed the CHAMPS team to develop procedures for carrying out pregnancy and mortality surveillance in ways that minimize disruption to the parents, family, and community at these important and sensitive times. Responses in relation to the fourth question informed potential partnerships between CHAMPS and trusted community leaders or organizations. Participants in the community leaders’ workshops were asked about their own roles and responsibilities in support of maternal and child health and the ways that CHAMPS could support the leaders in fulfilling those roles. PICK-CHAMP workshops were the first activities carried out in the sites, with each site completing all workshops in a timeframe of 2–3 months. Participants for community leader workshops were drawn from among religious leaders, local political leaders (including representatives of minority parties), traditional leaders such as village chiefs (where applicable), traditional medical practitioners, maternal and child health providers, trusted elders, and leaders of local nongovernmental organizations. Participants for community member workshops were selected to ensure representation across ethnic groups, genders, religion, age, marital status, educational level, and socioeconomic status. Some sites are implementing CHAMPS in communities where they have carried out other programs; in such instances, the sites relied on existing social networks to advertise the workshops and recruit participants, supplementing those reached through those networks with invitations to others in order to achieve the representation among participants described above. For sites implementing CHAMPS in new communities where no earlier work had been carried out, staff first met with local leaders to introduce the program and solicit their support. Through such meetings, those leaders then introduced staff to individuals and organizations in the local community; participants for both workshops were identified through these processes using snowball sampling methods. The workshop curriculum was written in English and local CHAMPS staff in each country trained in SBS translated the content into the predominant language(s) of the local communities. Subsequent to the workshops, CHAMPS staff entered participants’ responses into databases and analyzed the findings to inform formative research and the start of community engagement activities. In 6 of 7 CHAMPS sites, these activities preceded the initiation of mortality surveillance. The South Africa site was an exception, as it had previously piloted MITS and continued carrying out the procedure for deaths that occurred in a hospital facility as the site transitioned into the CHAMPS network. Demographic characteristics for each participant were gathered at registration. These characteristics included age, sex, marital status, religion, education, employment, and history of parenting (did the participant have any children; if so, what were their ages and had the participant experienced the death of any children). Participants were each assigned a unique identifying number and their responses were coded with that number so that responses could be analyzed by demographic variables without being tied to a participant’s name. In many instances, participants did not have the literacy level required to provide written responses to questions. This was the case in all community member workshops in every country; in these workshops participants offered verbal responses to questions raised in the exercises and CHAMPS staff members took notes of those responses, identifying the participant who offered a particular response through her or his unique identifier, which was printed on a nametag that participants wore. In some community leader workshops, participants wrote responses to questions on index cards that were labeled with their unique identifier. In other community leader workshops, verbal responses were recorded in the same way as in the community member workshops. Responses for each workshop were entered into a separate Access database file (Microsoft, Redmond, Washington) and each site provided the program office with those files. The responses were then exported into Excel files (Microsoft) for analysis. Participants’ responses in each workshop were analyzed in light of the topics described above (see discussion on “Design and Rationale” in this section). In addition, responses for selected exercises were analyzed for alignment or tension with mortality or pregnancy surveillance (the “Alignment Tension Assessment Instrument” in the Supplementary Data notes how each exercise was analyzed). For community member workshops, the general alignment and tension score ranged from 0 to 4. For community leader workshops, the scores ranged from 0 to 8. Each score was combined, yielding a composite alignment score range from 0 to 12 and composite tension score of 0 to 12. Alignment and tension scores were also generated specifically for mortality surveillance and pregnancy surveillance. The range for the alignment and tension score for pregnancy surveillance was 0–12 and the range for MITS was 0–24. The rationale behind the alignment/tension scoring is grounded in a number of assumptions informed by research in the field. Each of the exercises seeks to understand community perceptions related to pregnancy and childhood illness/death so that the acceptability of CHAMPS pregnancy and mortality surveillance activities as the first step of improving pregnancy and pediatric health outcomes could be assessed. Exercises 1–3 in both workshops assume that concepts of health and illness are generated in cultural contexts [12, 13]. While CHAMPS objectives are logical for practitioners and researchers coming from clinical and public health cultural frameworks informed by disciplines such as epidemiology and medicine, the cultural frameworks of local communities where CHAMPS is being implemented may not understand the purpose or logic of those same objectives or prioritize them in the same way. If participants could develop a number of different messages from their own framework that demonstrated the value or purpose of CHAMPS objectives, this would demonstrate an alignment with CHAMPS objectives. Similarly, if participants identified factors that impacted the course of pregnancy or child health that are readily addressed by clinical or public health programs, this would indicate an alignment between community perceptions and CHAMPS objectives. Finally, alignment/tension scores for mortality surveillance carried more weight than those for pregnancy surveillance, and scores from community leaders carried more weight than those from community members. Greater weight was given to assessments of alignment/tension of mortality surveillance (including MITS) over pregnancy surveillance based on the literature that showed lower acceptance of autopsy procedures. Participants’ responses in the PICK-CHAMP workshops reinforced this finding; the levels of acceptability for mortality surveillance were far lower than those for pregnancy surveillance based on a number of different factors that are discussed below. This held true in every country. Finally, alignment/tension scores derived from community leaders’ responses were given greater weight than those derived from community members because of the greater extent of social relations and the greater number of internal and external ties of these leaders, each of which translated into greater social capital to influence community norms and perceptions [14, 15]. The Supplementary Data include the instrument for scoring alignment/tension. This instrument provides detailed information on the calculation of alignment/tension in the various exercises, the calculation of the alignment and tension scores for mortality and pregnancy surveillance, and the composite alignment/tension score for each site. While the CHAMPS network currently consists of sites in 7 countries, findings from PICK-CHAMP workshops in 2 countries—Mali and Sierra Leone—are not included in this article because the activities were carried out there as stand-alone community engagement activities prior to ethical review and clearance of the broader SBS protocol. For the other 5 sites, PICK-CHAMP was included as part of SBS activities approved by institutional review boards in each country. In addition, the IRB at Emory University approved the SBS protocol that included PICK-CHAMP, and the US Centers for Disease Control and Prevention (CDC) Human Research Protection Office reviewed it and established reliance agreements with the IRBs at Emory and in each country where CDC staff is engaged [11].
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