Understanding Women's, Caregivers', and Providers' Experiences with Home-Based Records: A Systematic Review of Qualitative Studies

"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."

Used in 163 countries, paper and electronic home-based records (HBRs) offer 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. Recognising that these standardised records have the potential to empower women, improve the quality of care for mothers and children, and reduce health inequities, the World Health Organization (WHO) and the United Nations Children's Fund (UNICEF)'s Expanded Program on Immunisation (EPI) have supported cultural and language adaptations to HBRs. However, evaluations are needed to assess the benefits and harms of HBRs. Thus, this review examines experiences of women, caregivers, and providers with HBRs and seeks to explore the feasibility, acceptability, affordability, and equity of these interventions.

The researchers systematically searched MEDLINE, MEDLINE In-Process, MEDLINE Ahead of Print, Embase, CINAHL, ERIC, and PsycINFO for qualitative studies that were published between January 1992 and December 2017. They used the Critical Appraisal Skills Programme (CASP) checklist to assess study quality, a framework analysis to support synthesis, and Grading of Recommendations Assessment, Development and Evaluation (GRADE)-Confidence in the Evidence from Reviews of Qualitative research (CERQual) to assess the confidence in the key findings. The data-extraction form was designed according to the social-ecological model (SEM), which is a theory-based framework that was used here to investigate acceptability and usability of HBRs at individual, interpersonal and family, community and social, and organisational and policy levels.

Of 7,904 citations, 19 studies met the inclusion criteria. These studies are heterogeneous in terms of sample size, HBR design, setting, and findings. Of the 19 included studies, 4 were set in low- or middle-income countries (Brazil, Palestine, South Africa, and Cambodia). 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 2,700 pregnant women, mothers, caregivers, and healthcare providers.

Although the majority of the key findings were of low confidence, the review confirms that women, caregivers, and providers from a wide range of cultural and social contexts engage positively with HBRs. "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 the researchers' ability to make conclusions about equity.

More specifically, healthcare providers and nurses reported that the HBR increased their feeling of connection with their patients. Healthcare providers valued the educational and logistical aspect of HBRs, as well as their design. In one low-income setting where card-type home-based records were available, healthcare providers preferred integrated handbooks in terms of their appearance, information, convenience, and long-term value. As the researchers stress, since health providers have been found to value the educational and logistical aspect of HBRs, for the records to be able to meet their needs, it is important that HBRs be designed and implemented with their input. It is also vital that health providers be trained on the use of HBRs. There may be challenges in aligning HBRs with their feasibility at the country level, and HBRs alone do not lead to behavioural changes without being linked to robust support programmes.

Mothers and other caregivers see HBRs as having a pivotal role in facilitating primary care visits and enhancing continuity of care. HBRs facilitated communication and improved person-centred care. Pregnant women and parents noted decreased fear and improved sense of empowerment 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. HBRs also acted as a point of commonality between caregivers/mothers and nurses and allowed nurses to provide more comprehensive and tailored health education. "Knowledge can bring power and vision to disadvantaged communities..."

In addition, HBRs provided a mechanism for increasing husbands' involvement with pregnancy and address other family members' misconceptions about pregnancy. For example, HBRs provided opportunities for women to share information with husbands, partners, and grandparents. Among some families, the HBRs represented an intergenerational tool that could be passed down from mother to daughter as she transitioned to motherhood.

Overall, 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. With this increase in knowledge, they also reported wanting to gain more knowledge on the specific immunisations their children were receiving. 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. 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.

The researchers conclude that 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. Ensuring that HBRs are written at an appropriate literacy level, made available in the parents' home language, and free of medical jargon might help foster this potential.