A systematic review of home-based records in maternal and child health for improving informational continuity, health outcomes, and perceived usefulness in low and middle-income countries.

BACKGROUND: Evidence shows that a gap in the documentation of patients' past medical history leads to errors in, or duplication of, treatment and is a threat to patient safety. Home-based or patient-held records (HBR) are widely used in low and middle-income countries (LMIC) in maternal and childcare. The aim is to systematically review the evidence on HBRs in LMICs for (1) improving informational continuity for providers and women/families across health care visits and facilities, (2) to describe the perceived usefulness by women/families and healthcare providers, and (3) maternal and child health outcomes of using HBRs for maternal and child health care. METHODS: The protocol was registered in PROSPERO (CRD42019139365). We searched MEDLINE, EMBASE, CINAHL, and Global Index Medicus databases for studies with home-based records from LMICs. Search terms pertained to women or parent-held records and LMICs. Two reviewers assessed studies for inclusion using a priori study selection criteria- studies explaining the use of HBRs in LMIC for maternal and child health care. The included study quality was appraised using the Mixed Methods Appraisal Tool (MMAT). Results from all study designs were summarised narratively. RESULTS: In total, 41 papers were included in the review from 4514 potential studies. Included studies represented various study designs and 16 countries. The least evaluated function of HBR was information continuity across health care facilities (n = 6). Overall, there were limited data on the usefulness of HBRs to providers and mothers/families. Home-based records were mostly available for providers during health care visits. However, the documentation in HBRs varied. The use of HBRs is likely to lead to improved antenatal visits and immunisation uptake, and skilled birth delivery in some settings. Mothers' knowledge of breastfeeding practices and danger signs in pregnancy improved with the use of HBRs. One randomised trial found the use of HBRs reduced the risk of cognitive development delay in children and another reported on trial lessened the risk of underweight and stunted growth in children. CONCLUSION: There is limited literature from LMICs on the usefulness of HBRs and for improving information transfer across healthcare facilities, or their use by women at home. Current HBRs from LMICs are sub-optimally documented leading to poor informational availability that defeats the point of them as a source of information for future providers.

Self-ignored onsite adverse donor reaction among whole blood donors: A single center experience from India.

OBJECTIVES: Adverse donor reactions (ADR) may often go unreported due to donor related or blood center related factors. Possible donor related factors are self-ignorance of the adverse reaction, inertia to notify blood centre and non-compliance to follow-up. A better understanding of the self-ignored adverse donor reaction (SIADR) helps in early detection, avoidance of complications, adoption of mitigation strategies, and retention of donors. In the current study, we aim to identify the incidence and reasons for onsite SIADR among whole blood donors. MATERIALS AND METHODS: Prospective single-center observational study where 501 participants who completed whole blood donation were recruited. They were interviewed twice by an experienced investigator to identify any onsite SIADR occurred. First interview was conducted just before leaving the premise and second two days after donation using a peer reviewed and validated questionnaire. Cross-tabulation and Chi-square test were used for bivariate analysis. RESULTS: Twelve participants out of 501 (2.39%) were found to have onsite SIADR which was twice the frequency of reported onsite ADR (1.20%) during the study period in our center. A majority (75%) of them experienced grade I vaso-vagal reactions (VVR). Around 58.3% of the SIADR donors ignored the reaction as they perceived it as mild, while 25% perceived the symptoms but failed to interpret them as a reaction. CONCLUSION: In our center, incidence of onsite SIADR was double the incidence of ADR and majority were VVR grade I. Commonest reason for SIADR was interpretation of reaction as mild. Blood center team shall be proactive and vigilant to identify and report SIADR.

Systematic review on the use of patient-held health records in low-income and middle-income countries.

OBJECTIVE: To review the available evidence on the benefit of patient-held health records (PHRs), other than maternal and child health records, for improving the availability of medical information for handover communication between healthcare providers (HCPs) and/or between HCPs and patients in low-income and middle-income countries (LMICs). METHODS: The literature searches were conducted in PubMed, EMBASE, CINAHL databases for manuscripts without any restrictions on dates/language. Additionally, articles were located through citation checking using previous systematic reviews and a grey literature search by contacting experts, searching of the WHO website and Google Scholar. RESULTS: Six observational studies in four LMICs met the inclusion criteria. However, no studies reported on health outcomes after using PHRs. Studies in the review reported patients' experience of carrying the records to HCPs (n=3), quality of information available to HCPs (n=1) and the utility of these records to patients (n=6) and HCPs (n=4). Most patients carry PHRs to healthcare visits. One study assessed the completeness of clinical handover information and found that only 41% (161/395) of PHRs were complete with respect to key information on diagnosis, treatment and follow-up. No protocols or guidelines for HCPs were reported for use of PHRs. The HCPs perceived the use of PHRs improved medical information availability from other HCPs. From the patient perspective, PHRs functioned as documented source of information about their own condition. CONCLUSION: Limited data on existing PHRs make their benefits for improving health outcomes in LMICs uncertain. This knowledge gap calls for research on understanding the dynamics and outcomes of PHR use by patients and HCPs and in health systems interventions. PROSPERO REGISTRATION NUMBER: CRD42019139365.

Buffering Effect of Spousal Support on Stress Levels in Mothers of Children with a Diagnosis of Autism Spectrum Disorder in Kerala, India.

Objectives Bringing up a child with the diagnosis of autism spectrum disorder (ASD) can be highly stressful. This study aimed to assess perceived stress, level of spousal support, emotion-focused coping styles, and other potentially associated factors among mothers accompanying children diagnosed with ASD for care from selected institutions in Kerala, India. Materials and Methods Consenting parents accompanying children to therapeutic programs in selected institutions were administered a semi structured interview schedule incorporating questions of the vernacular version of the Perceived Stress Scale (PSS-10), emotion-based coping strategies, spousal support in care of the child diagnosed with ASD, and possible-associated factors. Since internal consistency of stress and coping questionnaires were low, principal component analysis was used to extract composite variables with reasonable psychometric characteristics for stress and coping. Statistical Analysis Ordinal logistic regression was performed with a three-level stress category as the outcome variable. Results High stress was significantly associated with low spousal support (adjusted odds ratio or AOR: 2.80; 95% confidence intervals or CI 1.28-6.11), having a completely dependent child (AOR 4.24 [95% CI 1.92-9.38]), and low acceptance levels (AOR 2.60 [95% CI 1.14-5.89]). Unlike mothers with high spousal support, mothers with low spousal support were likely to have difficulty in interacting with others ( p = 0.02) and a low level of acceptance ( p = 0.05). Conclusion Spousal support is important to preserve psychological health in mothers of children diagnosed with ASD. Mothers with low spousal support may need interventions that help increase acceptance levels or decrease avoidant behavior.

Patient, caregiver, and health care provider perspectives on barriers and facilitators to heart failure care in Kerala, India: A qualitative study.

Background: Deficits in quality of care for patients with heart failure (HF) contribute to high mortality in this population. This qualitative study aims to understand the barriers and facilitators to high-quality HF care in Kerala, India. Methods: Semi-structured, in-depth interviews were conducted with a purposive sample of health care providers (n=13), patients and caregivers (n=14). Additionally, focus group discussions (n=3) were conducted with patients and their caregivers. All interviews and focus group discussions were transcribed verbatim. Textual data were analysed using thematic analysis. Results: Patients' motivation to change their lifestyle behaviours after HF diagnosis and active follow-up calls from health care providers to check on patients' health status were important enablers of high-quality care. Health care providers' advice on substance use often motivated patients to stop smoking and consuming alcohol. Although patients expected support from their family members, the level of caregiver support for patients varied, with some patients receiving strong support from caregivers and others receiving minimal support. Emotional stress and lack of structured care plans for patients hindered patients' self-management of their condition. Further, high patient loads often limited the time health care providers had to provide advice on self-management options. Nevertheless, the availability of experienced nursing staff to support patients improved care within health care facilities. Finally, initiation of guideline-directed medical therapy was perceived as complex by health care providers due to multiple coexisting chronic conditions in HF patients. Conclusions: Structured plans for self-management of HF and more time for patients and health care providers to interact during clinical visits may enable better clinical handover with patients and family members, and thereby improve adherence to self-care options. Quality improvement interventions should also address the stress and emotional concerns of HF patients.

Perceived facilitators and barriers of enrolment, participation and adherence to a family based structured lifestyle modification interventions in Kerala, India: A qualitative study.

Background: The objective of the study was to describe participants' and providers' perspectives of barriers and facilitators of enrolment, participation and adherence to a structured lifestyle modification (SLM) interventions as part of the PROLIFIC trial in Kerala, India. Methods: Family members who had been enrolled for 12-months or more in a family-based cardiovascular risk reduction intervention study (PROLIFIC Trial) were purposively sampled and interviewed using a semi-structured guide. The non-physician health workers (NPHWs) delivering the intervention were also interviewed or included in focus groups (FGDs). Thematic analysis was used for data analysis. Results: In total, 56 in-depth interviews and three FGDs were conducted. The descriptive themes emerged were categorised as (a) motivation for enrolment and engagement in the SLM interventions, (b) facilitators of adherence, and (c) reasons for non-adherence. A prior knowledge of familial cardiovascular risk, preventive nature of the programme, and a reputed organisation conducting the intervention study were appealing to the participants. Simple suggestions of healthier alternatives based on existing dietary practices, involvement of the whole family, and the free annual blood tests amplified the adherence. Participants highlighted regular monitoring of risk factors and provision of home-based care by NPHWs as facilitators for adherence. Furthermore, external motivation by NPHWs in setting and tracking short-term health goals were perceived as enablers of adherence. Nonetheless, home makers expressed difficulty in dealing with varied food choices of family members. Young adults in the programme noted that dietary changes were affected by eating out as they wanted to fit in with peers. Conclusions: The findings suggest that a family-based, trained healthcare worker led SLM interventions are acceptable in Kerala. Increasing the number of visits by NPHWs, regular monitoring and tracking of lifestyle goals, and targeting young adults and children for dietary changes may further improve adherence to SLM interventions.