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Understanding women's, caregivers', and providers' experiences with home-based records: A systematic review of qualitative studies.

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.

SUBMITTER: Magwood O

PROVIDER: S-EPMC6171900 | biostudies-literature | 2018

REPOSITORIES: biostudies-literature

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Understanding women's, caregivers', and providers' experiences with home-based records: A systematic review of qualitative studies.

Magwood Olivia O Kpadé Victoire V Afza Ruh R Oraka Chinedu C McWhirter Jennifer J Oliver Sandy S Pottie Kevin K

PloS one 20181004 10

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 ...[more]

PMID: 30286161

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Project description:OBJECTIVES:To provide a comprehensive synthesis of informal caregivers' experiences of caring for a significant other following discharge from cardiac surgery. DESIGN:Systematic integrated review without meta-analysis. DATA SOURCES:A bibliographic search for publications indexed in six databases (Cochrane Library, CINAHL, MEDLINE, EMBASE, AMED and PsycINFO), including a scan of grey literature sources (GreyNet International, Google Scholar, Web of Science, WorldCat and the Clinical Trials Registry) was conducted in October 2018. ELIGIBILITY CRITERIA FOR SELECTING STUDIES:Studies were included if they described views and perspectives of informal caregivers of cardiac surgery patients (non-intervention studies (qualitative and quantitative)), and the effectiveness of interventions to evaluate support programme for informal caregivers of cardiac surgery patients (intervention studies). RESULTS:Of the 4912 articles identified in searches, 42 primary research studies were included in a narrative synthesis with 5292 participants, including 3231 (62%) caregivers of whom 2557 (79%) were women. The median sample size across studies was 96 (range 6-734). Three major themes emerged from the qualitative study data: (1) caregiver information needs; (2) caregiver work challenges and (3) caregivers adaption to recovery. Across the observational studies (n=22), similar themes were found. The trend across seven intervention studies focused on caregiver information needs related to patient disease management and symptom monitoring, and support for caregivers to reduce symptoms of emotional distress. CONCLUSION:Informal caregivers want to assist in the care of their significant others after hospital discharge postcardiac surgery. However, caregivers feel insecure and overwhelmed and they lack clear/concise discharge information and follow-up support during the early at-home recovery period. The burden of caregiving has been recognised and reported since the early 1990s, but there remains a limited number of studies that assesses the effectiveness of caregiver interventions. PROSPERO REGISTRATION NUMBER:CRD42018096590.

Project description:BackgroundThe World Health Organization 2018 intrapartum guideline for a positive birth experience emphasized the importance of maternal emotional and psychological well-being during pregnancy and the need for safe childbirth. Today, in many countries birth is safe, yet many women report negative and traumatic birth experiences, with adverse effects on their and their families' well-being. Many reviews have attempted to understand the complexity of women's and their partners' birth experience; however, it remains unclear what the key dimensions of the birth experience are.ObjectiveTo synthesize the information from reviews of qualitative studies on the experience of childbirth in order to identify key dimensions of women's and their partners' childbirth experience.MethodsSystematic database searches yielded 40 reviews, focusing either on general samples or on specific modes of birth or populations, altogether covering primary studies from over 35,000 women (and >1000 partners) in 81 countries. We appraised the reviews' quality, extracted data and analysed it using thematic analysis.FindingsFour key dimensions of women's and partners' birth experience (covering ten subthemes), were identified: 1) Perceptions, including attitudes and beliefs; 2) Physical aspects, including birth environment and pain; 3) Emotional challenges; and 4) Relationships, with birth companions and interactions with healthcare professionals. In contrast with the comprehensive picture that arises from our synthesis, most reviews attended to only one or two of these dimensions.ConclusionsThe identified key dimensions bring to light the complexity and multidimensionality of the birth experience. Within each dimension, pathways leading towards negative and traumatic birth experiences as well as pathways leading to positive experiences become tangible. Identifying key dimensions of the birth experience may help inform education and research in the field of birth experiences and gives guidance to practitioners and policy makers on how to promote positive birth experiences for women and their partners.

Project description:ObjectiveTo explore the experiences of cancer caregivers who live in rural Australia and travel to a metropolitan cancer health service to access cancer treatment.DesignA qualitative study using semistructured, audio-recorded interviews conducted between December 2017 and July 2018 with caregivers and social workers. Thematic analysis using interpretative descriptive techniques performed on textual interview data within a critical realist paradigm to develop understanding of rural caregivers' lived experiences.SettingParticipants were from rural areas attending a metropolitan cancer centre in Australia and social workers.Participants21 caregivers (16 female) of people with cancer living in rural Australia within a minimum distance of 100 km from the metropolitan cancer centre where they access treatment, and five social workers employed at a metropolitan cancer service with experience of working with rural patients and caregivers.ResultsThematic analysis developed two overarching themes: theme 1: caregiving in the rural setting describes the unique circumstance in which caregiving for a person with cancer takes place in the rural setting at considerable distance from the cancer service where the person receives treatment. This is explored in three categories: 'Rural community and culture', 'Life adjustments' and 'Available supports'. Theme 2: accessing metropolitan cancer services captures the multiplicity of tasks and challenges involved in organising and coordinating the journey to access cancer treatment in a metropolitan hospital, which is presented in the following categories: 'Travel', 'Accommodation' and 'Health system navigation'.ConclusionsCaregivers who live in rural areas face significant challenges when confronting geographic isolation between their rural home environment and the metropolitan setting, where the patient accessed cancer treatment. There is a need for healthcare services to identify this group to develop feasible and sustainable ways to provide interventions that have the best chance of assisting rural caregivers in supporting the patient while maintaining their own health and well-being.

Project description:BACKGROUND:Hospital admission during pregnancy complications is considered to be an event of significant impact. Besides conventional in-clinic maternal and fetal monitoring, recent technologies enable home-based telemonitoring with self-measurements in high risk pregnancy. This study is part of a feasibility pilot to explore the usability and acceptability of telemonitoring and aims to gain insight in the experiences and preferences of high risk pregnant women concerning the novel strategy of telemonitoring, opposed to women who were hospitalized in pregnancy. METHODS:Using secured Facebook Groups, we conducted four online focus groups: two focus groups with women who were admitted during pregnancy (n?=?11) and two with women who received home telemonitoring in the pilot phase (n?=?11). The qualitative data were analyzed thematically. RESULTS:Four major themes emerged from both participant groups: [1] care experience, [2] emotions regarding pregnancy, [3] privacy and [4] impact on daily life. Different views were reported on all four themes, resulting in a direct comparison of experiences during hospitalization and telemonitoring. Most admitted patients reported a growing sense of boredom and anxiety during their clinical admission. Lack of privacy on ward was a great concern, as it affected their contact with hospital staff and family. This issue was not reported amongst telemonitored women. These participants still felt like a patient at times but responded that the comfort of their own home and bed was pleasant. Only a minority of telemonitored participants reported being anxious at times at home, while not having a physician or nurse nearby. Being at home resulted in less travel time for partners or family for hospital visits, which had its positive effects on family life. CONCLUSIONS:Telemonitoring of a high-risk pregnancy provides an innovative manner to monitor fetal and maternal condition from home. Compared to the experiences of hospital admission in high risk pregnancy, it allows women to be in a comforting and private environment during an anxious time in their lives. As future studies should further investigate the safety and cost effectiveness of this novel strategy, women's views on the preference of telemonitoring need to be taken into consideration.

Project description:BackgroundAs COVID-19 continued to impact society and health, maternity care, as with many other healthcare sectors across the globe, experienced tumultuous changes. These changes have the potential to considerably impact on the experience of maternity care. To gain insight and understanding of the experience of maternity care during COVID-19, from the perspectives of women and maternity care providers, we undertook a qualitative evidence synthesis (QES).MethodsThe population of interest for the QES were pregnant and postpartum women, and maternity care providers, who provided qualitative data on their experiences of maternity care during COVID-19. The electronic databases of MEDLINE, CINAHL, EMBASE, PsycINFO and the Cochrane COVID study register were systematically searched from 01 Jan 2020 to 13 June 2021. The methodological quality of the included studies was appraised using a modified version of the quality assessment tool, based on 12-criteria, designed by the Evidence for Policy and Practice Information coordinating Centre (EPPI-Centre). Data were extracted by two reviewers independently and synthesised using the Thomas and Harden framework. Confidence in the findings was assessed using the Grading of Recommendations Assessment, Development and Evaluation-Confidence in the Evidence from Reviews of Qualitative research (GRADE-CERQual).ResultsFifty records relating to 48 studies, involving 9,348 women and 2,538 maternity care providers, were included in the QES. The methodological quality of the studies varied from four studies meeting all 12 quality criteria to two studies meeting one quality criterion only. The synthesis revealed eight prominent themes. Five of these reflected women's experiences: 1) Altered maternity care (women), 2) COVID-related restrictions, 3) Infection prevention and risk, 4) 'the lived reality' - navigating support systems, and 5) Interactions with maternity services. Three themes reflected maternity care providers' experiences: 6) Altered maternity care (providers), 7) Professional and personal impact, and 8) Broader structural impact. Confidence in the findings was high or moderate.ConclusionAlthough some positive experiences were identified, overall, this QES reveals that maternity care during COVID-19 was negatively experienced by both women and maternity care providers. The pandemic and associated changes evoked an array of emotive states for both populations, many of which have the potential to impact on future health and wellbeing. Resource and care planning to mitigate medium- and longer-term adverse sequelae are required.Prospero registrationCRD42021232684.

Project description:BackgroundThe use of physical restraints by family caregivers with home-dwelling elders has not been extensively studied but it might be widespread. Furthermore, it is also not clear how home care providers who support family caregivers perceive the use of physical restraint in elders' homes. This study assessed family caregivers' and home care providers' knowledge and perceptions of physical restraint used with elders living at home in Japan, a country with the highest proportion of elders in the world and where family caregiving is common.MethodsWe undertook a cross-sectional study of 494 family caregivers, 201 home helpers, 78 visiting nurses, 131 visiting physicians, and 158 care managers of home-dwelling frail elders needing some care and medical support in Japan, using questionnaires on knowledge of 11 physical restraint procedures prohibited in institutions and 10 harmful effects of physical restraints, perceptions of 17 reasons for requiring physical restraints, and experiences involving physical restraint use.ResultsFamily caregivers were aware of significantly fewer recognized prohibited physical restraint procedures and recognized harmful effects of physical restraint than home care providers, and differences among home care providers were significant. The average importance rating from 1 (least) to 5 (most) of the 17 reasons for requiring physical restraints was significantly higher among family caregivers than home care providers, and significantly different among the home care providers. Moreover, these differences depended in part on participation in physical restraint education classes. While 20.1% of family caregivers had wavered over using physical restraints, 40.5% of home care providers had seen physical restraints used in elders' homes and 16.7% had advised physical restraint use or used physical restraints themselves.ConclusionsKnowledge and perceptions of physical restraints differed between family caregivers and home care providers and were also diverse among home care providers. Because both groups might be involved in physical restraint use with home-dwelling elders, home care providers should acquire standardized and appropriate knowledge and perceptions of physical restraints to help family caregivers minimize abusive physical restraint use.

Dataset Information

Understanding women's, caregivers', and providers' experiences with home-based records: A systematic review of qualitative studies.

Publications

Understanding women's, caregivers', and providers' experiences with home-based records: A systematic review of qualitative studies.

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