http://orcid.org/0000-0002-7423-8244
Figures
Abstract
Mothers, caregivers, and healthcare providers in 163 countries have used paper and electronic home-based records (HBRs) to facilitate primary care visit. These standardized records have the potential to empower women, improve the quality of care for mothers and children and reduce health inequities. This review examines experiences of women, caregivers and providers with home-based records for maternal and child health and seeks to explore the feasibility, acceptability, affordability and equity of these interventions. We systematically searched MEDLINE, MEDLINE In-Process, MEDLINE Ahead of Print, Embase, CINAHL, ERIC, and PsycINFO for articles that were published between January 1992 and December 2017. We used the CASP checklist to assess study quality, a framework analysis to support synthesis, and GRADE-CERQual to assess the confidence in the key findings. Of 7,904 citations, 19 studies met our inclusion criteria. In these studies, mothers, caregivers and children shared HBR experiences in relation to maternal and child health which facilitated the monitoring of immunisations and child growth and development. Participants’ reports of HBRs acting as a point of commonality between patient and provider offer an explanation for their perceptions of improved communication and patient-centered care, and enhanced engagement and empowerment during pregnancy and childcare. Healthcare providers and nurses reported that the home-based record increased their feeling of connection with their patients. Although there were concerns around electronic records and confidentiality, there were no specific concerns reported for paper records. Mothers and other caregivers see home based records as having a pivotal role in facilitating primary care visits and enhancing healthcare for their families. The records’ potential could be limited by users concerns over confidentiality of electronic home-based records, or shortcomings in their design. Health systems should seize the opportunity HBRs provide in empowering women, especially in the contexts of lower literacy levels and weak health care delivery systems.
Citation: Magwood O, Kpadé V, Afza R, Oraka C, McWhirter J, Oliver S, et al. (2018) Understanding women’s, caregivers’, and providers’ experiences with home-based records: A systematic review of qualitative studies. PLoS ONE 13(10): e0204966. https://doi.org/10.1371/journal.pone.0204966
Editor: Sharon Mary Brownie, Aga Khan University, KENYA
Received: July 28, 2018; Accepted: September 15, 2018; Published: October 4, 2018
Copyright: © 2018 Magwood et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Data Availability: All relevant data are within the paper and its Supporting Information files.
Funding: This work was supported by World Health Organization and Japan International Cooperation Agency. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
Competing interests: The authors have declared that no competing interests exist.
Introduction
The home-based record (HBR) offers an approach that women and countries can use to improve both the processes, such as communication and empowerment, and outcomes of health care, including pregnancy complications, child development and vaccination [1]. The HBR is a document that may include components of preventive or curative antenatal, postnatal, newborn, and child health. This type of record has been used in various paper or electronic formats since the introduction of the Japanese Maternal and Child Health Handbook in 1948 [2]. Today, over 163 countries have used HBRs [3]. New card designs and delivery approaches that span the spectrum of care, from pregnancy through to childhood, offer opportunities for countries that wish to enhance the continuity of care and reduce child and maternal mortality.
United Nation (UN) Sustainable Development Goals 3 and 5 aim to reduce the mortality rates of children under age 5 and improve maternal health by the year 2030 [4]. A pivotal component of Goal 5 is the realization of gender equality and the empowerment of women. Disempowerment is associated with poorer health and social outcomes for women and children [5]. Inequities in gender, age, socioeconomic status and ethnicity contribute to disempowerment [6, 7]. Empowerment is both a process and an outcome that allows individuals to take control over their lives, set their own agendas, gain skills, increase self-confidence, solve problems, and develop self-reliance [8].
To date, there is no global synthesis of evidence that incorporates the perceptions of caregivers and mothers in relation to these HBRs. Hence, the objective of this study is to examine and synthesize existing published research about mothers, caregivers, children and health care providers in terms of their use and acceptability of HBRs, and the value of using these records. This systematic review is one of a series of systematic reviews commissioned by the WHO to underpin forthcoming global guidance on home-based records for maternal, newborn and child health. Other reviews in the WHO series examine the effectiveness of HBRs on health outcomes [1].
HBRs are designed for use in primary and secondary-care encounters [9]. HBRs aim to bridge patients and providers; however, this is dependent on local feasibility, acceptability, applicability, and their value, such as vaccine-series completion and child-growth monitoring. Women who engage with these interventions are more likely to participate in primary care and to ensure the continuity of care [10]. The WHO and the United Nations Children's Fund’s (UNICEF) Expanded Program on Immunisation (EPI) have supported cultural and language adaptations to HBRs, but evaluations are needed to assess the benefits and harms of HBRs [3]. To improve the implementation of HBRs, it is important to assess the perspectives of mothers, caregivers, and providers, and also to determine how these may vary across rural and urban areas, and private and public clinics in low-, middle- and high-income countries.
Electronic HBRs have begun to be used in middle- and high-income settings [11]. The use of this type of record prevents data loss and promotes information sharing between providers to improve integration in care [12]. Part of our review aims to compare paper-based HBRs to the newly emerging electronic records and looks at how women and caregivers perceive these electronic HBRs in terms of their value, security and ease of use. For health equity concerns, we aim to consider low-literacy populations and populations that do not speak their home country’s official language, as well as mobile populations, such as nomads, internally displaced persons, and refugees.
To achieve our study objective, this systematic review addresses the following key research question: Are HBRs for maternal, newborn and child health feasible, acceptable, affordable and equitable from the perspectives of women, family members, and health provider stakeholders? This review also aims to understand the values that women and caregivers hold in relation to the use of these HBRs.
Methods
We searched for qualitative studies exploring the experiences of mothers, caregivers and healthcare providers with home-based records for maternal, newborn and child health. We utilized the best fit framework analysis method for the synthesis of this systematic review [13]. We selected a framework a priori and searched for constructs of acceptability, feasibility, affordability and equity as defined by the Grading of Recommendations Assessment, Development and Evaluation (GRADE) [14]. We identified qualitative key findings and assessed the confidence of the key findings using GRADE-CERQual [15, 16].
Search strategy and selection criteria
This systematic review adheres to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines [17]. A team of experts developed a protocol that considered the use, implementation and values that are relevant to mothers, caregivers, and healthcare provider stakeholders in low-, middle- and high-income countries, in relation to the use of paper and electronic HBRs, which was published on the Cochrane Equity Methods website [18]. Using relevant search terms, searches of MEDLINE, MEDLINE In-Process, MEDLINE Ahead of Print, Embase, CINAHL, ERIC, and PsycINFO accessed articles that were published between January 1992 and August 2017. The search strategy is listed in Supplemental 1 (S1). We also searched the grey literature to identify relevant studies and published reports on prevention programmes of the World Health Organization (WHO), the Centre for Disease Control and Prevention (CDC), the European Centre for Disease Prevention and Control, the United States Agency for International Development, John Snow Inc. (JSI), and the Japan International Cooperation Agency (JICA).
We included qualitative and mixed-methods studies that reported on the values of and perceptions around HBRs and their access, use, feasibility, affordability, equity and acceptability. We focused on studies on mothers, caregivers, children and healthcare stakeholders and considered low-, middle- and high-income settings. Papers were eligible for inclusion if they addressed the research question, utilized qualitative methods, and included qualitative evidence (See Supplemental 2 (S2) for the full inclusion and exclusion criteria). These reports could be in any language or geographic setting.
Study selection and data extraction
An independent team screened titles and abstracts in duplicate, followed by full-text assessments for eligibility. Conflicts were resolved through discussion or the involvement of another reviewer. Citation information was downloaded into EndNote reference software. We assessed the methodological quality of papers using the U.K Critical Appraisal Skills Programme (CASP) checklist for qualitative studies [19]. While we used CASP to assess the quality of all included studies, we did not exclude any papers on the basis of quality assessment, rather, the methodological rigor of each contributing study contributed to the confidence assessments of each review finding.
We designed our data-extraction form according to a framework selected a priori: the social-ecological model (See Table 1) for behaviour change [20, 21]; which has been used in previous research that explores maternal and child health [22, 23]. This approach facilitated the exploration of maternal, caregiver and health care provider experiences with HBRs. The social-ecological model is a theory-based framework that considers the complex interconnections of the multiple levels of a social system and the interactions between individuals and their environment [22]. Understanding how HBRs influence social ecology, defined as the study of the relation between the developing human being and the settings and contexts in which the person is actively involved [24], allows for the investigation of acceptability and usability of HBRs at multiple levels of a social system. Our data-extraction form reflects the model’s system levels, which include the individual, interpersonal and family, community and social, and organizational and policy levels. Within each of these levels, we examined the determinants of HBR use, acceptability, feasibility, affordability and equity. We pilot tested the data-extraction form to ensure the framework aligned with the data. Our team of reviewers extracted data, in duplicate, from the included studies. Discrepancies were resolved through discussion.
Data synthesis
We contextualized the preliminary findings on HBRs and maternal, newborn and child populations, using the social-ecological framework [21]. We used the framework method as a systematic and flexible approach to analysing qualitative data [25] and grouped ideas of acceptability, feasibility, affordability and equity across key populations. Framework analysis is a five stage process of familiarisation with the data, identifying a thematic framework, indexing (applying the framework), charting and mapping, and interpretation [26]. Any relevant data that did not correspond to the components of our framework were incorporated as emerging themes. This coding was done in a matrix spreadsheet to facilitate analysis. Mapping involved examining concordant findings, disconfirmatory data, and associations between themes. Interpretations were guided by our review objectives as well as emerging themes.
We applied a qualitative methods lens that considered the saturation level (no new themes revealed in examining new papers) and the triangulation of the data between the mothers, caregivers, stakeholders and organizations within the health systems in the study. In judging the relevance to our research question, we considered the design of the HBR (for example, an integrated maternal and child record), the setting and the outcome. We used the data contained in the framework analysis to identify the key findings on the themes of feasibility, acceptability, affordability and equity. A key finding is defined as a synthesis of qualitative evidence that describes a recurring phenomenon found in primary studies [15, 16].
We used the Confidence in the Evidence from Reviews of Qualitative research (CERQual) tool [15] to assess the confidence of the key findings of this review. This tool is a new method used for assessing the strength of qualitative review evidence; it works similar to the way the Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach assesses the strength of quantitative evidence [14]. CERQual bases the evaluation on four criteria: the methodological limitations of the included studies that support a review finding; the relevance of the included studies to the review question; the coherence of the review findings; and the adequacy of the data that contributes to a review finding The GRADE-CERQual assessment results in a final classification of confidence in the theme in four categories: ‘high’, ‘moderate’, ‘low’ or ‘very low’ (See Tables 2 and 3).
Results
Our search strategy identified 10,486 citations. After removing the duplicates, we screened 7,904 articles by title and abstract. We went on to screen 159 articles, using a full-text assessment for eligibility. Fig 1 shows the 19 studies that met our inclusion criteria.
Table 1 shows the characteristics of the included studies. These studies are heterogeneous in terms of sample size, home-based record design, setting and findings. Of the 19 included studies, four were set in low- or middle-income countries (Brazil, Palestine, South Africa, and Cambodia). The remaining 15 studies took place in the UK (5), the US (5), Australia (3), Canada (1), and New Zealand (1). Interventions included child health books (9), online child health portals (4), the Maternal and Child Health Handbook (2), women-held antenatal records (2), online antenatal records (1), and electronic child immunisation records (1). The majority of the included studies used qualitative techniques, and most data were collected by individual interviews and/or surveys. They represented the views of more than 2700 pregnant women, mothers, caregivers, and healthcare providers. The CASP summary of methodological assessment is also included in Table 4.
Findings were grouped according to the constructs of feasibility, acceptability, affordability and equity. The study findings were categorised into individual, interpersonal and family, community and social, organizational and health system levels of the SEM framework. From synthesising descriptions from included studies, we identified three broad types of HBRs used by mothers or caregivers: maternal health records, child health records, and immunisation records. The differences among these interventions played a role in the perceptions of mothers, caregivers and healthcare providers of the value of HBRs for maternal, newborn and child health. We categorised the emerging findings according to the intervention used (See Table 5).
Positive experiences with HBRs emerged as a composite outcome of our results. We identified ten key findings and assessed the confidence in these findings, using GRADE-CERQual (See Table 6). Confidence in findings ranged from very low to low. Confidence levels were downgraded due to the methodological limitations, the relevance to the setting, and the coherence and adequacy of the data.
In relation to our research question, these key findings generated the following: Given the widespread use of HBRs across contexts and its impact on knowledge and education, empowerment, and patient-provider interactions, HBRs are acceptable and useful for women, caregivers and healthcare providers. The feasibility of these interventions may vary greatly depending on geographic location, primary care setting in which they are implemented, and design of the record. No studies provided sufficient data on affordability, or focused on low-literacy or nomadic/refugee populations, limiting our ability to make conclusions about equity.
Acceptability
Evidence from various geographic contexts and different forms of HBRs indicate that women, caregivers and healthcare providers appreciate and value home-based records. Women from high-income countries valued the ease, speed and convenience of online HBRs [12, 27–29]. However, privacy in relation to online medical records was a consistent concern, except for one study that successfully used records as part of a rare disease network [30]. Health care providers in low-income settings value the design of home-based records and preferred them due to their appearance, practical information, convenience and long-term value [31, 32].
Feasibility, affordability, equity
The qualitative evidence synthesis did not identify findings on feasibility, affordability or equity from the perspectives of mothers, caregivers and healthcare providers.
Healthcare provider values
Healthcare providers valued the educational and logistical aspect of HBRs, as well as their design [27, 31–36]. In one low-income setting where card-type home-based records were available, healthcare providers preferred integrated handbooks in terms of its appearance, information, convenience and long-term value [32]. Clinical staff noted the importance of stakeholder engagement in card design to ensure its acceptability and use in primary care settings [31].
Mother, caregiver and provider interactions
HBRs facilitated communication between mothers/caregivers and health care professionals and improved person-centered care [12, 29, 30, 33–42]. Pregnant women and parents noted decreased fear and improved sense of empowerment during patient–provider interactions [12, 29, 35, 37–39, 41, 42]. HBRs also acted as a point of commonality between caregivers/mothers and nurses and allowed nurses to provide more comprehensive and tailored health education [32, 33, 35, 37, 39]. HBRs have the potential to foster closer relationships between mothers and their healthcare providers [37, 38].
Improved knowledge and decision making
Increased knowledge emerged as a key finding among pregnant women and caregivers. Parents agreed that they were better able to understand their child's health status, and pregnant women felt that their increased knowledge helped them share in decision-making [27, 30, 32, 34, 35, 42, 43]. However, in one study [42], these views were expressed specifically towards the inclusion of a birth plan within a HBR, and not to the HBR as a whole.
Communication within the household
HBRs provided a mechanism for increasing husbands’ involvement with pregnancy and address other family members’ misconceptions about pregnancy [32–34]. HBRs similarly provided a mechanism for engaging family with childcare [36–38]. For example, HBRs provided opportunities for women to share information with husbands, partners, and grandparents [34]. In low-literacy settings, some husbands explained the contents of the handbook to their wives and advised them to obtain ANC, avoid salty food, or refrain from working too hard [32]. Among some families, the HBRs represented an intergenerational tool that could be passed down from mother to daughter as she transitioned to motherhood [37].
Discussion
The UN Sustainable Development Goals called for the adoption and strengthening of sound policies that promote gender equality, the empowerment of all women and improvements in maternal and child health [4]. The WHO is responsible for providing guidance on interventions that have the potential to improve outcomes in both health and empowerment at the primary-care level. The findings of this review confirm that women, caregivers and providers from a wide range of cultural and social contexts engage positively with HBRs.
Within our review we identified ten key findings, across individual, interpersonal, social and organizational levels, which showed connections operating at these levels with the core competencies of community primary care. The majority of our key findings were of low confidence, indicating that the findings may be a reasonable representation of our phenomena of interest. HBRs were valued for improving health knowledge and facilitating women’s communication with health care providers. Knowledge can bring power and vision to disadvantaged communities [44]. The lack of basic health literacy often limits interpersonal communication during health care visits. Improved communication can facilitate intervention outcomes in person-centred care and improve the satisfaction and continuity of care [45]. Continuity between patients and their providers or clinics is a core principle for primary care and an important determinant of the effectiveness of intervention [46].
Home-based records may give mothers and other caregivers a feeling of control and empowerment during clinic visits. Empowerment can improve health and social outcomes, when interventions are embedded in local contexts and are based on strong and direct relationships between people and their health providers [46]. In our review, we found that as mothers feel more in control, they also report feeling less fear during patient–provider interactions. This decrease in fear may lead to fewer barriers to health care access, more opportunities to ask questions, ensure follow-up visits, and help patients develop relationships with their health care providers. A well-maintained home-based record may provide a good first impression, reflect positively on the mother, and be well-perceived by a nurse [47]. While primary care does mean the provision of acute care, the relationships established, the preventive interventions and the improvements in health literacy that come from regular visits provide communities with the most effective care [46, 48].
Clinic staff support the concept of the HBR, but they do not always support its composition [31]. A clinic may face a range of record formats and training may be limited. Also, there is a lack of coordination between the different units of health systems and this leads to reduced use of the HBR [40]. Since health providers value the educational and logistical aspect of home-based records, for the records to be able to meet their needs, it is important that HBRs be designed and implemented with their input [31, 33–36, 38]. It is also vital for health providers, at different levels, to be trained on the use of HBRs. Nurses in low- and middle-income countries and caregivers from low-income populations in the US noted that children’s home-based records should be in the parents' home language and be free of medical jargon [27, 31]. There may be challenges in aligning HBRs with their feasibility at the country level [49]. HBRs, alone, do not lead to behavioural changes in, for example, smoking cessation, drinking alcohol or breastfeeding, without being linked to robust support programs. To ensure results, these elements may require programs in behaviour change [50]. Different levels of the social-ecological framework influence the feasibility, acceptability and use of the home-based record in different contexts. Individuals have their own characteristics and beliefs, but they may also be influenced by family practices and traditions. The engagement of men in pregnancies increases family-level involvement, and HBRs foster a sense of community and relationships between nurses and parents. At the health-system level, public clinics may be more likely to use these records than private clinics.
Health inequities, including barriers to healthcare, are a global challenge for many women and children, worldwide [51]. In different healthcare settings, many women struggle with low literacy and may feel disempowered in their relationships with health providers and in society [51]. When an intervention, such as a home-based record, is available for the entire population, this has implications for positive health equity and also presents opportunities [52]. When a home-based record provides new knowledge, and this new knowledge leads to improved communication, empowerment and continuity of care, we begin to see its importance to and potential for health equity. Ensuring HBRs are written at an appropriate literacy level will help foster this potential.
With the emergence of electronic records, some may argue that these technologies may be the future of health care [53]. This would depend on the scalability of this intervention in low- and middle-income countries, the availability of infrastructure, and individuals’ trust in online records. Mothers reported privacy concerns in relation to online records [12, 27–29]. However, in one study, parents had minimal concerns about confidentiality of online medical records [30]. Trust may vary in this study because the intervention is meant for a specialty based population—children with rare chronic disease in the US. Overall, in all populations, online records appear to offer opportunities for knowledge and engagement. For example, low-income Latina mothers indicated the usefulness of online immunisation records because they remove barriers to accessing and sharing health information [27]. With this increase in knowledge, they also reported wanting to gain more knowledge on the specific immunisations their children were receiving [27]. While the use of online records seems to be acceptable among low-income populations in high-income countries, there is a lack of evidence on their use in low- and middle-income countries. However, the adoption of the electronic health record would appear feasible, based on the widespread use of smartphones among low-income populations [12]. Nevertheless, there is concern about privacy and security; there is also a risk of harm to health equity when certain populations cannot take advantage of new technology.
Limitations
This review used secondary data, and as such is limited by the information provided in the published primary studies. Several studies included only basic qualitative data and did not provide clear evidence of saturation or data richness. Consequently, details around the core findings, the usability of the HBR and the depth of its community impact are less confident. Only four studies were conducted in low- or middle-income countries, limiting the generalizability of findings to resource-limited or fragile health system contexts. Finally, HBRs have emerged in many different cultural, linguistic and health-education formats, and this heterogeneity made it difficult to provide specific evaluations of HBR usability across regions.
Strengths
This review utilizes the social-ecological model as a framework for analysis and the GRADE CERQual approach to synthesize the qualitative findings and new understanding of the impact the home-based maternal and child health record has on knowledge, communication skills, and empowerment. The findings also inform the general principles behind the maternal, immunisation and child-health records, providing some basic insight into how and when these records may work and when they may not. The findings of this review also complement the concurrent review of effectiveness of HBRs on maternal newborn and child health outcomes [1], where HBRs were demonstrated to improve knowledge outcomes, communication, and agency. Unique to this review, HBRs increased husbands’ involvement with pregnancies and helped deal with misconceptions that other family members have about pregnancy. Combining this qualitative understanding with quantitative evidence collected to inform WHO recommendations offers a compelling body of knowledge on home-based records.
Conclusions
The experience of women, caregivers and providers clearly illustrates how HBRs can empower women and children. Women across countries spoke of improved maternal health, communication, and patient centeredness. Women living with low literacy and those in areas with less-developed health care systems reported positive interactions and care continuity. In general, women reported obtaining more learning from nurses and support during pregnancy, with decreased fear and increased empowerment, when HBRs were used. In general, frontline nurses confirmed the acceptability and value added of home-based records. Mothers who used online records had concerns about privacy; however, similar data on patients’ perceptions of online records is scarce and more research is needed. Policy makers need to take stakeholder’s perceptions on the value of home-based records into consideration when making decisions on the use of home-based records in their context.
Supporting information
S2 Table. PICO inclusion and exclusion criteria.
https://doi.org/10.1371/journal.pone.0204966.s002
(PDF)
Acknowledgments
The authors would like to acknowledge the funding received from the World Health Organization Department of Maternal, Newborn, Child and Adolescent Health through a grant received from the Japan International Cooperation Agency. They would like to acknowledge Sarah Crispo and Alain Mayhew of the Cochrane Equity Methods Group for their technical support of this review, as well as Joanna Vogel of WHO/MCA for coordinating the project and Helen Smith, of International Health Consulting Services Ltd, for review of key findings.
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