| Literature DB >> 23569604 |
Kathleen E Turner1, Sherrilynne Fuller.
Abstract
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.Entities:
Keywords: Child Health Services; Developing Countries; Information Seeking Behavior; Maternal Health Services; Medical Records
Year: 2011 PMID: 23569604 PMCID: PMC3615781 DOI: 10.5210/ojphi.v3i2.3631
Source DB: PubMed Journal: Online J Public Health Inform ISSN: 1947-2579
Health information needs studies (concerning mothers, women/families and/or reproductive health) in developing countries
| [ | Qualitative survey and interview (#80) | What are the daily information needs of urban black South African women, are they generally able to fulfill those needs, how and where do they search and would development of Community Information Centers help? | Generally these women use |
| [ | Qualitative survey and interview (#312) | What is the media accessibility and use of rural women in Kenya? Additionally what are their main information needs and information sources? | The women in this study tend to use |
| [ | Qualitative survey interview (#110) | What are the concerns of first time mothers in Dar Es Salaam, Tanzania immediately and six weeks post-partum? | In this population, some maternal worries change over six weeks, some stay the same. Worries were mainly around the baby’s general condition (with lesser concern about care and behavior) and the mothers’ feelings (with lesser concerns regarding appearance, family reactions, and sexuality), switching to more interests and confidences in these areas after 6 weeks. Questions are raised about how to provide timely information. Overall between 1–6 weeks post partum, worries decrease from 29%-15% (about baby from 31%-14% & self from 30%-20%) and interests (overall 38%–42%, baby 41%–50%, self 38%–41%), and confidences (overall 32%–43%, baby 29%–36%, self 32%–39%) increase. This study will help |
| [ | Qualitative interview and focus groups (#60) | What are the information needs and information seeking behaviors of rural Botswanan women? | The most common information need of women in the study related to health information for the women and their families, and the most common and helpful information source was a |
| [ | Random survey and interviews (#1200) | What do mothers in a developing country (Turkey) know about young child development? | In general, mothers felt that developmental milestones occur later than actual for normal children-the majority of women did not know that sight (52%), vocalization (79%), social smiling (59%), and overall brain development (68%) begin in the early months of life. Women with more education and fewer children had a better idea of actual childhood development. This study suggests that |
| [ | National household survey | What is the knowledge level of young teens in four sub-Saharan countries (Burkina Faso, Malawi, Uganda, and Ghana), and how do they fill their information needs regarding sexual behavior, STIs and pregnancy? | These kids use multiple information sources, most commonly |
See notes regarding research question(s) and results
Health information needs studies of mothers (particularly disadvantaged mothers) in developed countries
| [ | Prospective survey (#825) | How do expectations of childbirth coincide with satisfaction, especially in the realm of feelings of control and adequate information reception on the part of the mother (southeastern England)? | In this study, high expectations did not seem to lead to poor outcomes, and lower expectations seemed to lead to less satisfaction. Women wanted to retain control as much as possible and many reported that greater information given to them by their |
| [ | Qualitative interviews (#30) | What are the health literacy levels, and information seeking behaviors toward the vaccines given to their children of this group of mothers? | In this very small sample, most of the women were unaware of the purpose of the vaccines their children were receiving (26 of 30). Health literacy levels of this group of Detroit mothers were relatively low, and they tended to receive their information regarding their children’s vaccines from the |
| [ | Qualitative interviews (#73) | How do education levels and health literacy affect people’s information needs and expectations for health decision-making? | In this population from Sydney, Australia, more highly educated/health literate patients seem to take a higher responsibility for making their own decisions regarding health care, whereas less educated patients relied more on health care providers to make decisions to which they would either agree or disagree. |
| [ | Standardized test of health literacy and interview (#143) | How do health literacy levels relate to the use of health information sources and barriers to information seeking in low-income pregnant women in urban Midwestern U.S.? | Higher levels of health literacy were related to a greater ability to use multiple information sources with lower barriers to information seeking. Results suggest that information seeking skills should be taught to patients with lower health literacy. Both the high (85.3%) and low health literacy (14.7%) group used |
| [ | Qualitative interviews (#84) | What are the information seeking behaviors (information needs and barriers) in this population of low-income pregnant women? | In this urban Midwestern U.S. population it was shown that information seeking was highest in those women with the highest needs (asthma and first pregnancy) and the lowest barriers to obtaining information. Also showed that |
| [ | Survey and standardized testing (#143) | Do health literacy, positive measures of mother’s fetal locus of control and maternal self-efficacy correlate positively with health information seeking in this Midwestern U.S. population of low-income pregnant women? | Feelings of maternal control toward fetal wellbeing (r=0.27, p=0.003) and self-efficacy (r=0.33, p=0.0004) were positively correlated with maternal information seeking. Health literacy was not (r=−0.05, p =0.63). In this study, low health literacy was correlated with a feeling of lowering self-fetus control, in other words, these pregnant women tended to rely on information from |
See notes regarding research question(s) and results
Maternal and/or child healthcare record information needs of providers
| [ | Descriptive | Is there a better method of record keeping for mothers in developing countries? | This is an early proposal for use of card to improve record keeping. Positive outcomes for PHMR suggested. |
| [ | Descriptive | What are features of record to facilitate detection of high-risk pregnancy in rural Kenya? | Earlier Kenyan maternal card, positive benefits suggested. |
| [ | Descriptive | What are features of record to facilitate detection of high-risk pregnancy? | Provider information, dense information, not for illiterates, PH card prototype. Positive value felt by author, especially since patient generally has information available-important especially in case of emergency |
| [ | Descriptive | What are features of Indian record to facilitate detection of high-risk pregnancy? | Description of card, apparently useful to help detect risk factors. |
| [ | Descriptive | What are features of record to facilitate detection of high-risk pregnancy? | Prototype for pictorial card, describing the need for testing and use in Guinea Bissau where most pre-natal care done by Illiterate TBAs. Results unknown. Felt to be necessary and helpful for helping TBAs, but difficult to get right. Suggestions for single card usable for both lit and ill to allow mother to carry only one card. Area determines different procedures done by each. |
| [ | Descriptive | What are features of record to facilitate detection of high-risk pregnancy/improve quality of care in India? | Description of card, apparently useful to help detect risk factors. Benefits of using for illiterate traditional birth attendant (TBA) in order to aid in earlier detection of risks and improved maternal self-care. |
| [ | Instructional booklet | What are guidelines for implementing home-based child health records? | In depth instructions for implementing PHCR card or booklet. Specifications for how to implement and how to alter to fit the particular circumstances for each area of implementation. |
| [ | Instructional book | What are guidelines for implementing home-based maternal records? | In depth instructions for implementing PHMR card or booklet. Specifications for how to implement and how to alter to fit the particular circumstances for each area of implementation. |
| [ | Descriptive | Reasons for record keeping for maternal child health care in developing countries. | Basic outline of the purpose of records. |
| [ | Descriptive | What are features of record to facilitate detection of high-risk pregnancy? | Early card for providers’ use, not for illiterates, card prototype reminder of need to test against existing. The new card demonstrated a high rate of agreement between providers, and was felt to be useful in Tanzania |
| [ | Observation (#20) | How can we improve traditional birth attendants’ (TBA) reporting of high-risk births in Indonesia? | This study showed that TBAs able to report, assess, and respond accurately if trained and risk indicators defined in a way they understood. |
| [ | Descriptive | What are the reasons for restructuring record in Botswana? | Ability to follow pregnancy by use of an obvious graph to compare between visits seems helpful to catch problems. Not necessarily designed for developing countries |
| [ | Expert consensus | What is the essential data set of an electronic maternal health record? | Examines feasibility of creating and using the data set, data set listed. Importance is that data set might be different for each location. Data sets being tested in Sweden and India. |
| [ | Descriptive | What are the comparisons between the current well-organized and useful paper record to an electronic record (U.S.)? | The authors clearly don’t want to lose the positive aspects of the pre-natal record that has been working well for a number of years, but recognize the portability and potential for back-up and legibility of the electronic record, while recognizing the inherent difficulties of setting up a new system. |
Who studied: what studied – where Patient: Patient held maternal and/or child records - developing countries
| [ | Repeated cross-sectional survey (#611, #621, #630) | What are the effects of the MCH in Western Sumatra on using maternal health services? | The mothers using (not simply owning) the MCH had 2.5 times better knowledge of the benefits of some pre-natal care measures, and were 3 times more likely to seek out needed care. | ||
| [ | Descriptive | What is the history of the MCH Handbook in Japan? | This study included here, as the MCH Handbook was first distributed in Japan in 1947. The positive benefits of the MCH Handbook include ease of understanding, access to child and maternal health information, and having records available when needed. | The main concerns are the costs (though less than multiple separate cards), the fear of loss (not found to be a significant problem), and the uneven use of the cards depending on the quality/amount of care available. | |
| [ | Descriptive / interview (#185) | What are the opinions of mothers/caregivers (#150) and health care providers (#35) regarding accuracy and completeness of the Road to Health card in Cape Town, South Africa? | Health care providers like the concept, but would like information to be in a more useful format. Points out need to determine what information is important to family and healthcare providers in order for them to actually fill out all information. | ||
| [ | Descriptive /interview (#51) | How feasible is having a PHMR in rural Zimbabwe, and do mothers understand the reasons for the record? | The introduction of the record seems feasible, but much more education of mothers is needed for them to understand value as only 49.1% returned at end of study. | ||
| [ | Survey (#300) | Is the South African Road-to-Health card brought to consultations and used by health care providers? | The RTH card is not brought to 48% of consultations. Adults mostly (72%) thought they were only to bring the card to well-baby clinics. Care providers are missing an opportunity to educate and provide health monitoring. |
See notes regarding research question(s) and results
Who studied: what studied - where Patient: Patient held maternal and/or child records - developed countries
| [ | Case controlled survey (#171) | What are Cambridge (UK) women’s views on carrying MHR? | Generally positive view (71/88 liked carrying record; 83/88 thought there were advantages), women appreciate | ||
| [ | Randomized controlled trial (#290) | What are women’s preferences for carrying own MHR (Oxford)? | Positive effects of carrying more complete record as opposed to notes are: possibly decreased clerical time, a greater sense of feeling of | ||
| [ | Randomized controlled trial (#246) | What are women’s preferences for carrying own MHR (London, UK), and does carrying own increase satisfaction with care? | Positive effects of carrying more complete record as opposed to notes are: possibly decreased clerical time, increased feeling of | ||
| [ | Case controlled survey (#452) | How well are children’s records kept by parents, and do parents who have PHR (#284) and those who don’t (#168) prefer to keep their children’s records (Oxfordshire)? | Parents who kept their children’s records had more positive view of practice (75% PHR vs. 26% non-PHR. Appreciated | ||
| [ | Survey and case control comparison of physical records (#155) | Is the parent held record an effective means of communication, does it derive any benefit if yes, and is the North Staffordshire PHR a good quality source of patient information for parents (#100) and professionals (#55)? | The vast majority of parents (87–99%), nurses (67–100%) and health visitors (70–100%) agreed with a smaller majority of doctors (53–78%) that the child’s individual record plus the information on child healthcare helped improve | ||
| [ | Random sample interview (#622) | Are PHR retained and used to appropriately to record immunizations, and are parents and providers satisfied with their use (New South Wales)? | The majority (93%) of parents retained their records, with the majority having at least one (91%), and a smaller majority (68%) having all immunizations recorded in the record by. The majority of providers are (80–90%) satisfied with the use of the record. | ||
| [ | Descriptive /survey (#200) | What are women’s preferences for carrying own MHR in Brisbane, Australia, and does carrying own increase satisfaction with care? | Greater | ||
| [ | Randomized controlled trial (#150) | What are women’s preferences for carrying own MHR (as opposed to a care card,) and does carrying full record increase satisfaction with care (New South Wales)? | Women tended to feel more | ||
| [ | Qualitative - interview (#21) | What is impact of carrying own record during pregnancy (Sydney, Australia)? | Great majority of women favored carrying their own record in this and subsequent pregnancy, felt themselves and family to be | ||
| [ | Prospective survey (#72) | What are women’s preferences for carrying own MHR and is it an increased burden (South Wales, UK)? | The majority (90.2%) of mothers preferred to carry own notes; feeling it improves | ||
| [ | Randomized controlled trial (#193) | Does secure access to pre-natal records lead to higher access to online information and greater satisfaction with care (Hamilton, Ontario)? | Study group | ||
| [ | Qualitative – interview (#35) | What is the impact of the PHCR in New Zealand | This is a good tool for improving | ||
| [ | Systematic review (3 trials) | What are the effects of having women carry their own case notes during pregnancy? | Positive patient view of more | Inconclusive | |
| [ | Randomized controlled trial (#309) | Do PHR have positive effect on parents’ knowledge, collaboration with or utilization of healthcare in Norway? | No |
See notes regarding research question(s) and results
Who studied: what studied - where Patient: Patient held records in general - developed countries
| [ | Descriptive /survey (#30) | Are people interested in carrying their own PHR (Amherst, MA)? | Study shows that patients are | ||
| [ | Randomized controlled trial (#72) | What is the impact of a PHR on responsibility, information sharing and preventative health care of patients holding a PHR in Adelaide, Australia? | Statistically | ||
| [ | Descriptive /survey (#418) | To what extent do patients report a lifestyle change when they have a PHR? | Swedish study indicates | ||
| [ | Literature review (#7 trials) | Have studies shown any benefit to PHR for preventative care? | Some | ||
| [ | Randomized controlled trial (#189) | Does holding own record increase cancer patient satisfaction and positive feelings about communication with care provider (Newcastle-upon-Tyne, UK)? | Healthcare staff had | 53% with PHR found it helpful. | Patients with PHR less |
| [ | Randomized controlled trial (#501) | Do patients feel PHR improves quality of life (Wales, UK)? | |||
| [ | Randomized controlled trial (#650) | Does holding own record increase patient satisfaction (Oxford)? | |||
| [ | Randomized controlled trial (#244) | Does holding own record increase cancer patient satisfaction in urban Scotland? | Patients like it, but | ||
| [ | Randomized controlled trial (#201) | Do patients in Birmingham, UK feel that PHR improves outcomes? | |||
| [ | Systematic review (#12 studies) | Do PHR improve patient satisfaction with communication and information exchange? | Extensive literature review into efficacy of PHR to improve patient satisfaction for specific cancer patients. Random controlled trials show different outcomes ( | ||
| [ | Systematic review (#14 trials) | Is there any improvement in outcomes or patient satisfaction with PHR in chronic disease management? |
See notes regarding research question(s) and results
Who studied: what studied - where Care Provider: Patient held maternal and/or child records - developing countries
| [ | Descriptive (TBAs from 15 villages) | What are features of record to facilitate detection of high-risk pregnancy in India? | Description of card, apparently useful to help | ||
| [ | Descriptive survey (#53 notes in 1980–81 and #60 in 1982–83) | What are features of record to facilitate detection of high-risk pregnancy? | Early record for in-clinic use by Australian Aboriginal health workers. Equivalent results to normal records, results are | ||
| [ | House-to house survey (#400) | What features of record are needed to improve quality of care and improve record keeping (Vellore, India)? | MCHCC evaluation reveals positive effects on | ||
| [ | Non-randomized control (#2446) | Does provision of PHMR card improve outcomes in pregnancies in rural India? | Some positive outcomes for | ||
| [ | Large, multi-center collaborative comparative pre/post intervention study (#13 in #8 countries) | Evaluate the function of the PHMR following set of WHO guidelines. | Substantial improvement in maternal and neonatal | ||
| [ | Interview survey (for #177 children and #220 women) | Do opportunities for vaccination get missed in Swaziland? | In this study, children and adults with health card present | ||
| [ | Survey (#300) | Is the South African Road-to-Health card brought to consultations and used by health care providers? | The RTH card is not brought to 48% of consultations. Adults mostly (72%) thought they were only to bring the card to well-baby clinics. Care providers are missing an | ||
| [ | Household survey (#3705) | What is level of routine immunization coverage in the Western Cape? | In this study, possession of Road to Health card is highest predictor for | ||
| [ | 1997 and 2002/3 Indonesian Demographic and Health Survey | What is level of routine immunization coverage? | Ownership of MCH booklet positively associated with young children’s full | ||
| [ | Random household interview survey (#260) | What factors contribute to family having and retaining PHCR in Uganda? | There is a positive relation to | Mothers don’t receive card as frequently if they don’t use a health care center. Children delivered at a healthcare facility were 4 times as likely to have card; children who had been to a facility in the past 3 months were 2 times as likely to have card. | |
| [ | Literature review and descriptive survey | Would including pictorial and written risk indicators make a single PHMR more useable for ALL prenatal caregivers? | Includes literature review of current MHR in use and suggestions for single card usable for both literate and illiterate health care providers to allow mother to carry only one card. Area determines different procedures done by each. Example from Mali. | ||
| [ | Descriptive/interview (#14) | Does the simplified MHR improve workload and improve statistical reporting in rural India? | The simplification decreased the workload for healthcare workers, but no or minimal improvement in reporting of vital statistics. | ||
| [ | Data from the 1987 Encuesta Nacional de Salud Materno Infantil (National Survey) | How does the official government record of immunization in Guatemala compare with PHR and maternal recall for obtaining a more accurate view of immunization levels? | Compares (with great limitation) data obtained from the card as opposed to maternal recall-is likely to be at least as/or more accurate than the government (potentially overestimated record). | ||
| [ | Descriptive / interview (#185) | What are the opinions of mothers/caregivers (#150) and health care providers (#35) regarding accuracy and completeness of the Road to Health card in Cape Town, South Africa? | Most health care providers (80%) support the concept, but most (80%) would like information to be in a more useful format. Points out need to determine what information is important to family and healthcare providers in order for them to actually fill out all information. | ||
| [ | Retrospective comparison of national survey | Did immunization levels improve after introduction of vaccination cards and Vitamin A supplementation in Uganda? | Immunization cards may have been seen as proof of vaccination and caring parent. People with cards seemingly get better care. Vaccine levels increased after introduction of cards and vitamin A supplementation, though causality could not be determined. |
See notes regarding research question(s) and results
Who studied: what studied - where Care Provider: Patient held maternal and/or child records - developed countries
| [ | Government-provided data analysis | Are PHR for childhood immunizations positively correlated with being up-to-date on vaccines? | In US, especially with more disadvantaged families, holding vaccination record associated with | ||
| [ | Retrospective study (#239) | What are the reactions of general practitioners and health visitors of PHCR? | In Oxfordshire, the majority of providers (over 90%) with experience with PHR have positive response to PHCR due to ability to | ||
| [ | Audit /survey (#1256) | Are PHMR returned with mother at time of delivery, and does education improve return rate (Australia)? | The majority of mothers returned their records. Compliance numbers increased over time with education on importance of recordkeeping (82 to 88.5% increase in | There were some issues for healthcare providers for | |
| [ | Random sample interview (#622) | Are PHR retained and used to appropriately to record immunizations, and are parents and providers satisfied with their use (New South Wales)? | The majority (93%) of parents retained their records, with the majority having at least one (91%), and a smaller majority (68%) having all | A smaller than hoped for number of providers (29–79%) had the | |
| [ | Survey and case control comparison of physical records (#155) | Is the parent held record an effective means of communication, does it derive any benefit if yes, and is the North Staffordshire PHR a good quality source of patient information for parents (#100) and professionals (#55)? | The vast majority of parents (87–99%), nurses (67–100%) and health visitors (70–100%) agreed with a smaller majority of doctors (53–78%) that the child’s individual record plus the information on child healthcare helped | Doctors expressed concerns about maintaining | |
| [ | Systematic review (3 studies) | What are the effects of having women carry their own case notes during pregnancy? | Providers report an increase in the number of surgical interventions with women carrying their PHR. | ||
| [ | Descriptive - survey (#7) /review discussion (#25+) | What are the effects of having women carry a | Care providers felt that the |
See notes regarding research question(s) and results
Who studied: what studied - where Care Provider: Patient held records in general - developed countries
| i. [ | Quasi experimental comparison (#25) | Is patient compliance with preventive care guidelines improved with PHR (San Francisco, CA)? | Some positive benefits noted by 54–82% of care-providers for 7 separate parameters, with increased compliance providing preventative care in study groups (9.3–11.6% higher compliance than control). | ||
| [ | Prospective survey (#187) | Are medication PHR cards used (Sydney, Australia)? | For older population in Sydney, Australia, medication cards don’t seem to be used (presentation of card dropped from 61% to 23% over 12 months) or improve compliance in research population (21% of users said card helpful). | ||
| [ | Randomized controlled trial (#769) | Does PHR improve quality of care for diabetes patients in the Netherlands? | Modest improvements in patient health parameters. Disappointing results on maintaining card, 36% using card at end of study. |
See notes regarding research question(s) and results