|Home | About | Journals | Submit | Contact Us | Français|
Though improvements in infant and maternal mortality rates have occurred over time, women and children still die every hour from preventable causes. Various regional, social and economic factors are involved in the ability of women and children to receive adequate care and prevention services. Patient-held maternal and/or child health records have been used for a number of years in many countries to help track health risks, vaccinations and other preventative health measures performed. Though these records are primarily designed to record patient histories and healthcare information and guide healthcare workers providing care, because the records are patient-held, they also allow families a greater ability to track their own health and prevention strategies.
A literature search was performed to answer these questions: (1) What are maternal information needs regarding pregnancy, post-natal and infant healthcare, especially in developing countries? (2) What is known about maternal information seeking behavior in developing countries? (3) What is the history and current state of maternal and/or child patient-held healthcare records, do they provide for the information needs of the healthcare provider and what are the effects and outcomes of patient-held records in general and for maternal and/or child health in particular?
Specific information needs of pregnant women and mothers are rarely studied. The small numbers of maternal information behavior results available indicate that mothers, in general, prefer to receive health information directly from their healthcare provider as opposed to from other sources (written, etc.) Overall, in developing countries, patient-held maternal and/or child healthcare records have a mostly positive effect for both patient and care provider. Mothers and children with records tend to have better outcomes in healthcare and preventative measures. Further research into the information behaviors of pregnant women and mothers to determine the extent of reliance on interpersonal information seeking is recommended before expending significant resources on enhanced patient-held maternal and/or child healthcare records including storage on mobile devices. In particular, research is needed to explore the utility of providing targeted health messages to mothers regarding their own health and that of their children; this might best be accomplished through mobile technologies.
Around the world in developing nations, maternal and child healthcare has been on the forefront of consciousness for improving the lives of global citizens [1–3]. Though improvements in infant and maternal mortality rates have occurred over time, women and children still die every hour from preventable causes [4–6]. In addition, each country has its own policies and challenges with delivering healthcare to its citizens [7–9]. Various regional, social and economic factors are involved in the ability of women and children to receive adequate care and prevention services [10, 11]. Most importantly, though, is making sure the improvements in maternal and child healthcare and preventative measures in developing countries lead to decreased morbidity and mortality in these vulnerable populations [12–14]. The United Nations (UN) Millennium Development Goals for 2015 include several goals defined by the World Health Organization (WHO) as pertaining to health, particularly in developing countries. These health related goals include: worldwide reduction in maternal mortality by three-fourths and in mortality of children under the age of five by two-thirds from year 2000 levels ; forty percent of these childhood deaths are in newborns . Only 19 of the 68 priority countries are on track to reach the health-related goals for child mortality and maternal health . Though many of these struggling countries have been severely impacted by the HIV/AIDS epidemic , the major causes of neonatal death continue to be sepsis and pneumonia, birth asphyxia, complications of pre-term birth, tetanus and diarrhea [18, 19]. The majority of these conditions could be prevented or treated with proper pre-natal, childbirth and neonatal healthcare, maternal and child nutrition and maternal education .
Given the lack of access to healthcare in developing countries, there have been various measures proposed and enacted to enable patients to become greater participants in their own healthcare . In developing countries, self-care measures are important for empowering people and communities who have limited access to a formal healthcare system to make a difference in their own well-being [19–22]. Medical personnel have worked to improve systems for accurately determining higher risk patients, in particular pregnant women who are most likely to need referral for delivery of their babies [4, 19, 21]. Other healthcare interventions include timely vaccination, treatment for infectious and parasitic diseases and malaria, prevention of nutritional deficiencies, smoking cessation education and prophylactic therapy for HIV/AIDS [16, 18, 21]. Patient-held maternal and/or child health records (PHMR or PHCR) have been used for a number of years in many countries to help track health risks, vaccinations and other preventative health measures performed [23–27]. Though these records are designed to record patient histories and healthcare information and to guide healthcare workers providing care, because the records are patient-held, they also allow families a greater ability to track their own health and prevention strategies [7, 27].
In preparation for a pilot project to transfer a patient-held mother and child health record from paper to a web-enabled cell phone platform, a literature review was needed to help answer these general questions:
The revised (2010) Kenyan Maternal & Child Health Booklet provides a good example of a paper record used currently in a developing country [28–31]. This 17-page booklet is larger than many of the other maternal-child records , and has room for recording information regarding one pregnancy and child. Most of the seven pages of “Maternal Profile” seem designed for use by the healthcare provider; it includes the medical, surgical and obstetrical history. There are spaces for recording examination findings from first encounter to delivery. A graph for tracking the mother’s weight gain, preventive therapy schedule, family planning chart, and notes section seem to be the main areas for providing for maternal information needs regarding the pregnancy. The “Child Health Card” section of the booklet seems more designed to provide information to the child’s family. On almost every page, there are notes for parents such as immunization and vitamin reminders, developmental milestones, appropriate weight to height chart, retroviral prophylaxis chart and follow-up, notes, and infant feeding recommendations.
This study included two related literature searches performed concurrently. Databases searched include: CINAHL Plus, Dissertation Abstracts, EMBASE, Global Health Library, Global Health Archive, PubMed, Science Direct, Social Science Research Network, Web of Science, WHO Library Database (WHOLIS) and WHO Statistical Information System (WHOSIS). For the first query topic the Library, Information Science & Technology Abstracts (LISTA) database was also included. Searches took place in January and February 2011; articles retrieved were limited to the English language literature. The searches were conceptual in nature. Approaching the two questions regarding maternal information seeking and information needs, the first search included the concepts of <maternal or pregnant women’s healthcare/care-giving information behavior (information needs, information seeking)> and <developing countries>. The second search centered on answering the third question regarding patient-held records and their usefulness. This search utilized the idea of <patient-held maternal and/or child healthcare record>, then added in the notion of <outcomes>. The search was expanded by the use of pearl-growing techniques ; applying database-specific subject headings or descriptors from a known article to search for related articles . Investigating database-identified related articles, article citations and article reference lists further expanded the search.
Some general search terms were used either combined or separately for each topic. The search terms listed are in a single format, but the format was altered depending on the search criteria and preferential use by each individual database. Search strings were also expanded and contracted depending on the number of results obtained in each individual database, and search terms might include: (“mother” OR “maternal”), (“child”), (“health” OR “medical”), (“information” OR “data”), and (“developing” OR “undeveloped” OR “third world”). To further define the searches, the following terms were added: (“information need*” OR “information seek*” OR “information behavior”), (“record” OR “card” OR “booklet”), (“health information system”), (“patient held” OR “hand held”) and (“outcomes”). Articles focusing on behavior of information seeking in specific places, such as the Internet or libraries, were not included. Pearl-growing techniques were especially important for the maternal and child record search. In particular, use of the subject headings and reference list for the 1993, multi-site study, Evaluation of the home-based maternal record: a WHO collaborative , proved particularly helpful for locating literature on this topic.
The literature covering maternal information behavior specifically for medical or health related information needs in developing countries seems rather limited. Only eight published papers from six separate studies of information behavior, including health information needs, of women and mothers in developing countries were retrieved using the literature search criteria (Table 1). Health information needs for family, prenatal and infant care are ranked high in the studies of overall women’s information needs in developing countries [34, 35, 38, 39], and a few studies look specifically at health information seeking behavior in these populations [36, 37, 40, 41]. A few common themes emerge from the available research literature; mothers in the developing countries studied tend to seek medical information and advice for their children and families more commonly than searching for other information needs, and the first source or most common source for information comes from other people. Basic infant and child developmental and care information are mentioned as important to mothers in the studies from Tanzania and Turkey [36, 37, 40].
In order to get a broader view of maternal information behavior, some studies of disadvantaged mothers from developed countries were also included (Table 2). While these studies come from different countries and regions of the world, they show some interesting similarities as well as trends in the direction of information behavior. Unfortunately, due to the small number of studies and the small number of participants, true generalities cannot be drawn, though comparisons may be possible. The earlier studies from the 1990s in developing countries [34, 35] show women using personal information sources first when seeking information for many reasons including health related. The later studies, and studies from developed countries [36–40, 42–47], indicate that women, both in developed and developing countries, seek a majority of health-related information from their healthcare providers. The one study of adolescents, girls and boys, shows a majority of these young people from sub-Saharan Africa use mass media sources in addition to school and personal sources to meet their reproductive and sexual health needs . The theme that comes through all of these studies is the idea that pregnant women and mothers from all different societies, both developing and developed, show a preference for receiving health information from a person, whether a healthcare provider or not. Mothers in the population of adolescents in sub-Saharan Africa  appear to be the main exception to that finding.
The articles listed in Table 3 are, for the most part, descriptions of various forms of the maternal and/or child healthcare record, and describe the specific information needs of maternal and/or child healthcare providers as they offer suggestions for the data set and format important to collect to provide appropriate prenatal and early childhood care. It seems clear that development proceeded over a number of years to arrive at the most current versions of the maternal and child record in developing countries [27, 31]. Currently these records are individualized for each country or region, but include information such as: the names of the mother, father and child; the child’s date of birth; antenatal examination findings; recommended vaccination and prophylactic therapy schedule for the mother and child; growth charts for both the child and pregnant woman; varying levels of advice for care during pregnancy and young childhood; as well as location specific physical parameters and findings such as maternal blood pressure, maternal hemoglobin and child’s developmental and nutritional status.
For a number of years, a variety of developed and developing countries have used patient-held maternal health records and/or parent-held child health records [25, 26, 48–52, 59]. More recently, as described above for Kenya , countries have started adopting patient-held combined maternal and child health records. These records are frequently designed with guidance from the WHO, though each jurisdiction is encouraged to develop the record best suited to its culture and populace [25, 26].
The literature review results fall into a few categories based on whether utility of the record to the patient/parent (Tables 4, ,55 and 66) or the healthcare provider (Tables 7, ,88 and 99) was the main focus of the study; also whether the record was specific for maternal and/or child healthcare or for other types of healthcare. Additionally, findings tended to vary for studies carried out in developed versus developing countries.
The majority of results are neutral for the effects of the patient-held maternal and/or child record in the studies conducted in developing countries (Table 4). Increasing patient education was felt to be one way to improve the card’s utility in all four of the studies with neutral results [59, 61–63], and use and understanding of the card is felt to be key in the two positive outcomes [59, 60]. Where noted, loss of the record was not felt to be a significant issue [59, 63].
In the 13 studies showing a positive outcome for the patient-held maternal and/or child record studies in developed countries [64–76], words like confidence, control, access (better informed), satisfaction, and communication (interaction) were repeated (Table 5). In addition, in eight of the nine studies where recorded, there were few or no missing or lost records, and some families retained the records for many years [65–70, 72, 75, 77]. The two studies showing inconclusive or neutral results were focused on the health outcomes of the record [76, 77].
All eleven studies of the patient-held (not maternal and/or child) records were carried out in developed countries (Table 6). Results in these studies were variable. The six positive outcomes were qualitative assessments of patient benefit [78–83]. One of the two studies with negative results reports less satisfied patients, and the other reports a potential imbalance of power relationship [81, 82]. The seven studies including neutral results, were just that, the results were inconclusive [82–88]. Where noted, patients are generally willing and able to carry the card .
The care provider is most likely to be influenced by the results in the 15 studies of the patient-held maternal and/or child records in developing countries (Table 7). The ten positive results demonstrated here are, for the most part, improved outcomes in healthcare results or preventative measures such as detection of risk, quality of care, higher rates of care, as well as increased educational opportunities [24, 63, 89–96]. The six studies with neutral results can show no conclusive positive results, but provide a positive overall feeling toward the record [61, 96–100]. In studies where noted, the majority of women were able to keep track of the record even if they weren’t always brought to healthcare provider visits [63, 92, 94, 96].
The seven studies of patient-held maternal and/or child records from developed countries (Table 8) show results that most likely to influence care providers. These outcomes offer a more mixed view of the effects of the records. Definite positive benefits were shown with children’s immunizations [69, 101], return of record following education about its importance , and impressions of improvement in communication, access and care [68, 102]. Neutral results center on management of the record [69, 103] and inconclusive health results . Negative results arise from confidentiality concerns, increase in burden of work, size of the record, and increased surgical intervention [68, 76, 104]. This final concern noting increased surgical interventions with possession of the patient-held record might be considered positive in developing countries where detection of risk factors and elucidating the need for referral are crucial to the records’ function [89–92]. The majority of patients were able to produce records when requested in studies reporting this factor [68, 69, 103].
The three final studies (Table 9) of the influence on care providers of the patient-held (not maternal and/or child) records show some positive benefits in compliance in patients with possession of the record , though the other two studies demonstrate the patients just not using or carrying the record [105, 106].
The studies listed in Tables 4–9 delve into the usefulness of and outcomes for the patient-held record. In total, 48 studies were listed in the six categories of type of patient-held record: (maternal and/or child or not,) care provider or patient most influenced/effected, and research done in developed or developing country. Nine (one study in two categories) of the studies are felt to have mixed results [59, 68, 69, 76 (twice), 81–83, 96, 103], and six of the studies are felt to concern both patient and care provider [61, 63, 68, 69, 76, 81]. Of these results, 37 show positive effects or influences, 24 show neutral effects or influences, while only five studies show negative effects or influences produced with use of a patient-held health care record.
Though the number of information behavior studies located in this literature review is quite limited [34–47], the sense one gets from them is that families, in particular mothers in developing countries, are interested in information about healthcare issues for their family. While these studies come from different countries and regions of the world, they show some interesting similarities. Generalization of mothers’ information behavior is not possible due to the small number of studies and participants. In the studies that measure all types of information seeking behavior, health information needs rank high in the list of overall women’s information needs in developing countries [34, 35, 38, 39]. The few studies that look specifically at health information seeking behavior in these populations [36, 37, 40], show that mothers studied in the developing countries tend to seek medical information and advice for their children and families more commonly than searching for other information needs, and the first or most common source for information comes from other people. There is some indication that these mothers are interested in information regarding child development and care. Another common theme in the studies from both developed and developing countries is that mothers from diverse backgrounds prefer to receive health information directly from their healthcare provider. The one exception to this might be mothers in the population of adolescents in sub-Saharan Africa , though it is also possible that the nature of the information or the population involved lends itself to a different preferred mode of delivery.
These findings lead one to consider very carefully how mothers might use a home-based healthcare record as a source of information regarding their own and their children’s care. The literature retrieved in this review puts forward the idea that pregnant women and mothers from all different societies, both developing and developed, show a preference for receiving health information from a person, whether a healthcare provider or not. It seems likely, that unless there is a demographic shift in information behavior, mothers may not choose to use information provided in any format of healthcare record. Instead they may continue to seek out interpersonal sources.
The earliest studies retrieved regard maternal and child healthcare records in developing countries, and mainly consist of how-to diagrams with the care provider/designer demonstrating their ideas about creation of these records. Due to the descriptive nature of most of the articles listed in Table 3, the assumption was made that they reflected the information needs of their healthcare provider and agency creators. The information needs of healthcare providers and other healthcare agencies must be inferred from the proposals and guidelines developed for the production of maternal and/or child healthcare records. The progression shows some measure of the evolution of these records over time [24–26, 47–52].
The other studies retrieved from the search in all categories (Tables 4–9), delve into the usefulness and outcomes of the patient-held record. Very few negative results noted for either healthcare provider or patient in the patient-held record. In the patient-effected categories (Tables 4–6), the most patient-noted positive effect in developing countries was the increased knowledge of the benefits of healthcare, as well as having the records available when needed [59, 60]. A lack of understanding of the record’s use pointed to a need for greater education in studies where the patient effect was neutral [61–63]. The effect of the patient-held record seems most positive on patients holding maternal and/or child records in developed countries. These mothers, for the most part, tend to relate positive feelings of confidence, control, access (feeling better informed), satisfaction, and improved communication and interaction during the healthcare process (Table 5). As mothers in developing countries become better informed and want to play a greater role in their own care, perhaps carrying their own maternal/child records can engender these same feelings. In contrast to mother and child records, most other patient held records have not shown to be of significant benefit to either the patient or the healthcare provider (Tables 6 and 99).
The results for the influence of patient-held records on care providers was more mixed (Tables 7–9). Care providers in developing countries seemed to recognize the most positive outcomes in terms of improving health and prevention practices with patients carrying the maternal and/or child record (Table 7). Though follow-up study needs to continue, the improvements noted for patients are encouraging. In addition, the majority of studies, where this was measured [59, 63, 65–70, 72, 75, 77, 80, 91, 94, 96, 103], showed that patients tend not to lose patient-held maternal and/or child records, though some of the general patient-held records were more readily lost to follow-up [105, 106]. This finding seems significant and may be worth continued study in determining the importance of these records, especially to families in developing countries.
In general, these studies show some positive outcomes related to the use of the patient-held maternal and/or child record. The most positive effects relate to the patient’s (mother) emotional state and feelings of control and access to information, particularly in developed countries, and results of improved health outcomes with the patient-held maternal and/or child record in developing countries. The fact still remains that 49 of the 68 priority countries are not on track to reach the UN Millennium Development Goals for 2015 , and these positive results need to be further leveraged to help developing countries meet their goals for decreasing mortality and improving health.
The results obtained in the literature review may have suffered, both from the inability to find all applicable research in the field, as well from a limited time frame for study. In particular, it was impossible to pursue all potential sources for research in information behavior and patient-held records. The research questions addressed in the studies on patient-held records retrieved from the literature search were quite varied, and therefore difficult to compare aside from impressions of the effect or influence of the record on the patient and/or care provider. In addition, several of the studies produced mixed results, further confusing the comparison. Finally, reviewer bias, access to articles and limitations to the English language inevitably factored into which search avenues were pursued and which articles were included in the study.
The information behavior of women, particularly in developing countries, needs further investigation. It is unclear whether the childcare and healthcare information provided in existing patient held, maternal-child healthcare records, such as the Kenyan Maternal & Child Health Booklet  and others , meets the needs of mothers and families. The literature suggests that pregnant women and mothers (Tables 1 and 22) prefer to seek information from human sources. In particular, mothers appear to prefer to receive information from healthcare providers. Healthcare providers must also be included in any discussion of maternal-child healthcare records; providers’ input on needed data is crucial to the success of any healthcare record (Table 3).
Several studies have demonstrated the use of mobile technology, such as cell phones and personal digital assistants (PDA), in healthcare in both the developed [105–111] and developing [112–115] world. Protocols have been developed for creating healthcare forms and questionnaires for small mobile devices [114, 116–118]. The technology currently exists for enhancing patient-held records for storage on web-enabled mobile devices [113, 119]. Healthcare providers currently use short message services (SMS) to send targeted health-related messages to their patients [109, 115, 120]. In addition, electronic devices allow for communication beyond just text and the pictorial representation allowed by paper records; cell phones allow for photographic and graphic visual display, as well as voice and text messaging, electronic storage, and two-way capabilities [121, 122]. The next step in evaluating the appropriateness of web-enabled cell technology for a patient-held maternal-child healthcare record in developing countries is to determine whether a mobile platform can meet the information needs of women and families, as well as the healthcare providers in the region. Currently a pilot study is underway in Peru to “[d]evelop an interactive computer-based system and a common mobile phone-based platform to support maternal and child care among pregnant women” . This project, a public-private partnership, also hopes to improve health services to pregnant women by increasing access to timely information, allowing greater monitoring capability by the health system, and finding empirical evidence of the social and economic impacts of mobile technologies. Going forward, further research is needed to explore the utility of providing targeted health messages to mothers regarding their own health and that of their children. Additionally, an assessment of the infrastructure and current practices must be complete to determine if this might best be accomplished through mobile technologies [124, 125].
Information behavior of women, in particular disadvantaged pregnant women and mothers in developed and developing countries and other caregivers in developing countries, seems to rely most commonly on seeking information from interpersonal sources. For health-related information, most of these women look to healthcare providers. More study is necessary to determine if delivering health information in an alternative format would be acceptable or well received.
The development of maternal-child healthcare records in developing countries over time offers the best insight into the basic information needs of maternal-child healthcare providers. The presence of a maternal and/or child healthcare record appears to have a positive effect, for the most part, on both care providers and patients in developing countries. In addition, the presence of a maternal and/or child healthcare record appears to have a positive effect, for the most part, on patients’ sense of control and feelings of satisfaction in developed countries. Other types of patient-held records, in developed countries in particular, have not been as positively received.
I (“Author”) would like to thank “Co-author” and Grace John Stewart, MD, PhD, MPH and other members of the Center for Integrated Health of Women, Children, and Adolescents at the University of Washington for suggesting I pursue this literature review as the culminating project of my MLIS degree. In addition I’d like to thank my family for enduring the many weeks of my “absence” while completing this project.
Due to space limitations, it was necessary to restate and/or paraphrase research questions and study results listed in the tables above. The first author is responsible for interpreting research questions gleaned from the abstract, introduction and/or problem sections of the articles reviewed. The first author is also responsible for the interpretation and inclusion (or exclusion) of results obtained from the abstract and/or results sections of the articles reviewed.