Positive Care Experiences Research Articles

Prenatal And Postpartum Care Experiences Among Black Birthing People In The United States: An Integrative Review.

Among Black birthing people, high-quality, respectful care throughout pregnancy and postpartum is hindered by distrust, racial discrimination, and unsatisfactory care. The purpose of this integrative review was to examine prenatal and postpartum care experiences among Black birthing people in the United States. A literature search, spanning from inception through October 6, 2022, across 4 research databases, used a combination of keywords to capture reports on care experiences among Black birthing people. We included quantitative and qualitative studies in the United States with people who self-identified as Black or African American and reported prenatal or postpartum health care experiences. Intrapartum experiences were excluded. All studies were evaluated with the Mixed-Methods Appraisal Tool, National Institutes of Health Study Quality Assessment tool, or Joanna Briggs Institute critical appraisal checklist. Data were analyzed and synthesized using the Joanna Briggs Institute convergent integrated approach to incorporate quantitative and qualitative research. A total of 16 studies published over 27 years met the inclusion criteria. All studies examined the health care experiences of Black birthing people during prenatal or postpartum care. None of the studies focused solely on postpartum care experiences. The 2 most prominent themes were models of care and patient-provider interactions, encompassing both positive and negative experiences. Positive care experiences included collaborative patient-provider interactions, continuity of care, and culturally centered care. Adverse experiences were more frequently noted and involved discriminatory treatment during patient-provider interactions, fragmented care models, and a lack of cultural awareness. Black birthing people in the United States report some positive but more negative health care experiences during pregnancy and postpartum care, which may play an important role in health inequities. Promoting prenatal and postpartum care models that provide continuity and are high-quality, collaborative, and culturally centered were identified as high-priority targets to foster patient safety and improve clinical outcomes.

Quality of care in South Sudan and its associated factors, a facility-based cross-sectional study in public health facilities in Yambio County, Western Equatoria State.

The patient's experience of care is critical in determining how satisfied the client is with the quality of health services offered by the health facility. Understanding health needs aids in identifying gaps in service provision as well as potential avenues for planning and improving health care services. The primary goal of this study was to explore the attributes of quality healthcare in South Sudan from the perspective of healthcare recipients. Nonetheless, South Sudan's health system has remained inadequate since the country's independence in 2011, with 85% of deliveries performed by unskilled health personnel, high maternal and child death rates, and a lack of vital lifesaving drugs in health facilities. Political unrest, natural disasters, poor infrastructure, and budgetary limits are among the additional factors impeding the provision of high-quality care services to the population in need. However, the South Sudan government, with the support of international health partners, continues to work towards ensuring that basic health needs are met in accordance with SDG-3 recommendations. This was a facility-based cross-sectional descriptive study conducted in four selected health facilities in Yambio County, Western Equatoria State, from July 1st to September 30th, 2023. A sample size of 422 was included, and a randomized sampling procedure was used, with 60% of public health facilities supported by non-governmental organizations utilizing the lottery method. Data were collected and entered into SPSS version 25 for descriptive and regression analysis. A total of 422 participants were solicited for the study, with a response rate of 99.81 percent. Of the 421 responders, 72% (303/421) were female and 28% (118/421) were male. The overall satisfaction with the experience of quality of health care delivered was 84.8%. A preliminary analysis found that the assumption of multicollinearity was met (Age, sex, feeling of having chance to fully explain a problem to care provider, physical examination, provider's technical capacity in diagnosis and treatment, provider attitude, client respect) among others, were all associated with the client's experience of care and satisfaction with the quality of health care. The clients who sought health care at the public health facilities in Western Equatorial State were quite satisfied with the quality of health services (84.8%). Provider's behaviors, attitudes, and technical skills, among other major factors, were found to be associated with the client's positive experience of care. To uphold health ethics, the study recommends including medical ethics training and client center care into continuing medical educations at health facilities.

Ambivalent ageism and the pains and gains of informal caregiving for older adults: Findings from Germany

Background and ObjectivesWe analyzed the associations between ambivalent ageism, burden and positive experiences of care among informal caregivers of older adults (aged ≥60 years), to advance understanding of its role as psychosocial risk or resilience factor for informal caregivers. Design and MethodsData of 433 informal caregivers (≥18 years) of adults with care needs (≥60 years) from the Attitudes towards Informal Caregivers (ATTIC) project was used. The Ambivalent Ageism Scale, Positive Aspects of Care Scale and the Burden Scale for Family Caregivers were used. Linear regression analyses adjusted for context and personal factors were conducted, with age and gender included as moderators in additional tests. ResultsHigh ageism (total score) was significantly associated with a high level of positive aspects of care and burden. Further analyses showed a significant positive association between benevolent ageism and positive aspects of care, while stronger hostile ageism was associated with less positive aspects of care. Hostile ageism was also significantly associated with more burden, while benevolent ageism and burden were not associated. Additional analyses indicated no moderation by gender, but by age. The association between hostile ageism and burden was weaker with caregivers’ higher age. Discussion and ImplicationsWhile hostile ageism and worse caregiver burden were associated, positive care experiences seemed to benefit from benevolent ageism. This highlights the complex associations between ageism and caregivers’ well-being, which need to be taken into account in theory and practice focused on improving the care situation for both caregivers and care recipients.

Wait, What? What's Going On?- Pregnancy Experiences of Deaf and Hard of Hearing Mothers Who Do Not Sign.

Deaf and hard of hearing (DHH) women experience higher rates of reproductive healthcare barriers and adverse birth outcomes compared to their hearing peers. This study explores the pregnancy experiences of DHH women who do not sign to better understand their barriers and facilitators to optimal perinatal health care. Qualitative study using thematic analysis. Semi-structured, individual remote, or in-person interviews in the United States. Twenty-two DHH English speakers (non-signers) who gave birth in the United States within the past 5 years. Semi-structured interviews explored how DHH women experienced pregnancy and birth, including access to perinatal information and resources, relationships with healthcare providers, communication access, and their involvement with the healthcare system throughout pregnancy. A thematic analysis was conducted. The barriers and facilitators related to a positive perinatal care experience among DHH women. Five key themes emerged. For barriers, healthcare communication breakdowns and loss of patient autonomy highlighted DHH women's struggle with perinatal health care. In contrast, DHH participants outlined the importance of accessible health communication practices and accommodations, use of patient advocacy or self-advocacy, and assistive technologies for DHH parents for more positive perinatal care experiences. Perinatal healthcare providers and staff should routinely inquire about ways to ensure an inclusive and accessible healthcare experience for their DHH patients and provide communication accommodations for optimal care. Additionally, healthcare providers should be more aware of the unique parenting needs and resources of their DHH patients.

Hospital Experiences of Carers in Relation to the Comprehensive Care Standard: A Mixed Method Study.

To explore the care experiences of informal carers of people with chronic conditions in hospitals and identify areas for improvement in the context of comprehensive care delivery. A explanatory sequential mixed-method study. This study was conducted, involving a survey with 182 carers and interviews with 31 carers of individuals who attended an Australian hospital. Descriptive analysis of quantitative data was performed using RStudio, while thematic analysis of qualitative data was conducted using NVivo. The findings revealed seven overarching components of care that influenced carers' hospitalexperiences and their perceptions of care quality. Areas requiring improvement were identified within these categories. This review identifies common perspectives of informal carers of people with chronic conditions in hospital settings and highlights important areas that require attention to improve carers' hospital care experiences. Carers should be welcomed, involved, informed and supported during hospital attendance to foster the most positive care experiences. Healthcare professionals should involve carers in assessment, shared decision-making and the care process and recognise and address carers' needs. The findings revealed the carer's hospital experiences in the context of comprehensive care delivery and identified areas requiring improvement. The CROSS and the COREQ guidelines were followed. The study protocol was presented to stakeholders from two hospitals in Australia, a Patient and Carer Advisory Board (attached to the parent project: evaluating Quality of Care (eQC))and the Australian Commission on Safety and Quality in Health Care, and discussions were held to assess the relevance and significance of this study to clinical practice and health policy.

Patients presenting with musculoskeletal disorders in the emergency department: A qualitative study of their experiences when cared by advanced practice physiotherapists in the province of Québec.

Advanced practice physiotherapy (APP) models of care are promising to alleviate pressure in emergency departments (EDs) where physiotherapists' new roles include being a first-contact practitioner and leading the overall care and management of patients with minor musculoskeletal disorders (MSKDs) to alleviate ED physicians' caseload. To explore patients' acceptability, experience, satisfaction, and perception of a new APP-led model of care in the ED. Patients presenting to the ED with a minor MSKD and who agreed to participate in a multicenter, pan-Canadian randomized controlled trial assessing the efficacy and costs of an APP model of care were invited to participate in this qualitative study. Semi-structured interviews were performed to identify themes related to their experiences with this model. Verbatim transcripts were coded and analysed using an inductive thematic analysis. 11 patients participated and three themes were identified: 1- They were satisfied with the care received within the model; 2- They found APPs to have the appropriate skill set to manage MSKDs and to assume medical-delegated tasks; 3- Timely access to care was a key factor in the acceptability of this model and participants believed physiotherapists were appropriate first-contact practitioners. One participant proposed that the APP model of care should also offer follow-up care. Participants had a positive experience of care in this new model. These results support the implementation of APP models of care in EDs as the participants appear receptive to new roles for APPs.

Look on the bright side: the relation between family values, positive aspects of care and caregiver burden

Family-centered values are important for caregiving. However, findings on their association with burden are inconsistent. We aim to analyze whether positive aspects of caregiving are mediating the effect of familism on burden among informal caregivers of older adults in Germany. Participants (n = 277) were drawn from the Attitudes Toward Informal Caregivers (ATTIC) project and include informal long-term caregivers of older relatives (aged ≥ 60) quota-sampled from Germany (December 2023). Mediation analyses (linear OLS regression) with robust standard errors were conducted with the classic and the counterfactual causal mediation framework. The classic approach indicated a significant positive direct effect of familism on burden, a significant negative direct effect of PAC on burden and a significant negative indirect effect of familism via PAC on burden; the total effect was not significant. The causal mediation approach supports this; the interaction between familism and PAC was not significant. Thus, sociocultural family-centered values seemed to worsen burden but also to reduce it through positive experiences of caregiving, which did not depend on the strength of familism values. The findings advance our understanding of the mechanisms underlying the stress appraisal of the informal care situation and emphasize the role of positive experiences of care.

Organizational and patient factors associated with positive primary care experiences for veterans with current or recent homelessness.

To identify organizational service features associated with positive patient ratings of primary care within primary care clinics tailored to accommodate persons with ongoing and recent experiences of homelessness (PEH). PEH receiving primary care in 29 United States Veterans Health Administration homeless-tailored clinics were surveyed about their primary care experience using the validated Primary Care Quality-Homeless (PCQ-H) survey. Characteristics of the clinics were assessed through surveys of clinic staff using a new organizational survey developed through literature review, site visits, statistical analysis, and consensus deliberation. Cross-sectional examination of patients' ratings of care based on surveys of patients, and of clinic characteristics, analyzed with Classification and Regression Tree (CART) analysis, a form of machine learning. Patient surveys (n = 3394) were obtained from a random sample of enrolled patients by both mail and telephone by an external survey contractor. Staff (n = 52 from 29 clinics) were interviewed by telephone. This analysis identified service features that impact patient experience favorably, including aspects of patient-centeredness, team identity, strong external leadership support, and service that reach beyond traditional primary care clinic confines. Results varied according to the patient experience scale analyzed. Individual characteristics of PEH, such as degree of social support, general health, and unsheltered status, were also correlated with how they rate care. Organizational characteristics correlate with ratings of primary care from patients with recent and ongoing homelessness. Primary care programs serving homeless individuals can assure better care based on who they hire, how they foster team identity, what services they provide, and the strength of leadership support to protect a homeless-focused mission.

Correlates of prolonged grief, posttraumatic stress and depression symptoms in Brazilian COVID-19 bereaved adults

The Coronavirus pandemic has hit Brazil exceptionally hard, with more than 700.000 confirmed deaths due to COVID-19, corresponding to an estimated 6.3 million bereaved people. Yet, the mental health consequences among COVID-19 bereaved Brazilians, and the associated loss-related variables have been largely unexplored. Therefore, we aimed to clarify the associations of loss-related characteristics and circumstances with prolonged grief, posttraumatic stress, and depression symptoms experienced by COVID-19-bereaved Brazilian adults. A sample of 371 Brazilian COVID-19 bereaved adults (90% women) completed an online survey. The loss of a partner or first-degree relative, a positive assessment of the healthcare received by the deceased, and the perceived helpfulness of hospital visits in the grief process significantly correlated with prolonged grief and posttraumatic stress symptoms. The findings suggest that farewell ceremonies and positive hospital care experiences may mitigate distress among COVID-19-bereaved Brazilian adults.

Socioeconomic inequities in care experienced by women with breast cancer in England: An intersectional cross-sectional study

PurposeGuided by the Intersectionality Framework, we examined the differential in breast cancer care experience across population subgroups in England. MethodsSecondary data analysis using the 2017/2018 National Cancer Patient Experience Surveys. We used disaggregated descriptive statistics (mean, standard errors, 95% confidence interval) to analyse 26,030 responses from female breast cancer patients to a question relating to overall care experience categorised by age, ethnicity, and sexual orientation in their intersection with social position. We then used logistic regression to investigate the odds (Odds Ratio (OR), 95% confidence intervals) of reporting positive care experience adjusting for patient, clinical, and Trust level factors. ResultsPoorer care experience was predominantly reported by the most deprived younger and minoritised ethnic groups. Statistically significant findings were observed in adjusted multivariable analyses. Compared to patients aged 65–74 years, younger respondents were less likely to rate their care favourably (16–34 years old ORadj. = 0.55 (0.36–0.84). Compared to White British, Asian (ORadj. = 0.51 (0.39–0.66)) and Black African women (ORadj. = 0.53 (0.33–0.88)) were less likely to rate their care favourably. The least affluent respondents were less likely to rate their care favourably (ORadj. = 0.79 (0.64–0.97)). ConclusionThere is evidence of inequity in overall cancer care experience among female breast cancer patients in England, particularly among women living at the specific intersection of age, ethnicity, and socioeconomic position. Future research is necessary to understand the mechanisms underlying breast cancer inequities. Policymakers, commissioners, and providers should consider the existence of multiple forms of marginalisation to inform improvement initiatives targeting patients at higher risk of vulnerability.

"I have to listen to them or they might harm me" and other narratives of why women endure obstetric violence in Bihar, India.

Evidence suggests that obstetric violence has been prevalent globally and is finally getting some attention through research. This human rights violation takes several forms and is best understood through the narratives of embodied experiences of disrespect and abuse from women and other people who give birth, which is of utmost importance to make efforts in implementing respectful maternity care for a positive birthing experience. This study focused on the drivers of obstetric violence during labor and birth in Bihar, India. Participatory qualitative visual arts-based method of data collection-body mapping-assisted interviews (adapted as birth mapping)-was conducted to understand women's perception of why they are denied respectful maternity care and what makes them vulnerable to obstetric violence during labor and childbirth. This study is embedded in feminist and critical theories that ensure women's narratives are at the center, which was further ensured by the feminist relational discourse analysis. Eight women participated from urban slums and rural villages in Bihar, for 2-4 interactions each, within a week. The data included transcripts, audio files, body maps, birthing stories, and body key, which were analyzed with the help of NVivo 12. Women's narratives suggested drivers that determine how they will be treated during labor and birth, or any form of sexual, reproductive, and maternal healthcare seeking presented through the four themes: (1) "I am admitted under your care, so, I will have to do what you say"-Influence of power on care during childbirth; (2) "I was blindfolded … because there were men"-Influence of gender on care during childbirth; (3) "The more money we give the more convenience we get"-Influence of structure on care during childbirth; and (4) "How could I ask him, how it will come out?"-Influence of culture on care during childbirth. How women will be treated in the society and in the obstetric environment is determined by their identity at the intersections of age, class, caste, marital status, religion, education, and many other sociodemographic factors. The issues related to each of these are intertwined and cross-cutting, which made it difficult to draw clear categorizations because the four themes influenced and overlapped with each other. Son preference, for example, is a gender-based issue that is part of certain cultures in a patriarchal structure as a result of power-based imbalance, which makes the women vulnerable to disrespect and abuse when their baby is assigned female at birth. Sensitive unique feminist methods are important to explore and understand women's embodied experiences of trauma and are essential to understand their perspectives of what drives obstetric violence during childbirth. Sensitive methods of research are crucial for the health systems to learn from and embed women's wants, to address this structural challenge with urgency, and to ensure a positive experience of care.

Gendered bodies: A graphic medicine commentary

This final commentary, in comic format, frames this special issue using Graphic Medicine methodologies to explore broader themes and meanings related to the scientific study of gender and health. Comics can be seen as a way to introduce complex human narratives and as an exploratory tool to ask broader social-contextual and ethical questions about health and medicine. This piece is also constructed through the lens of queer scholarship, which, together with the comics format, provides opportunities to build more embodied, complicated narratives about gender, sexuality and health. Most importantly, comics are used as a modality to tell compelling narratives about how individuals, rather than populations, may be impacted by biomedical conceptualizations of gender and health. The commentary includes a series of graphic narratives containing hypothetical stories and cases: stories of how individuals may be harmed within healthcare systems by rigid framings of gender, sex and sexuality, and stories about how gender socialization may impact health in subtle ways. These narratives furthermore examine the inextricable link between gender and power, illustrating how overt and covert manifestations of power may shape a person's health over the life course. Finally, the piece explores how expansive views of gender may contribute to positive health care experiences. The intention of this piece is to nudge scientific researchers and clinicians alike to approach the topic of gender, sexuality and health with nuance and curiosity.

Lessons learned from patients’ weight-related medical encounters: Results from 34 interviews

ObjectivesHow to best care for larger-bodied patients is a complicated issue in modern medicine. The present study seeks to inform current medical practices to ensure the delivery of high-quality and evidence-based care through the examination of higher-weight patients’ experiences with weight-related care. MethodsHigher-weight patients (N = 34) completed semi-structured interviews about their experiences and recommendations for weight-related care. Interviews were coded by two independent coders and harmonized. Findings were organized into broad domains of 1) negative care experiences and 2) positive care experiences and recommendations. ResultsPatients described a range of negative care experiences, including stigmatization from providers (e.g., rude, attacking, or insulting communication about weight), while concurrently expressing insufficient weight management support from providers. Positive care experiences and recommendations included patient-centered care (e.g., physician humility and empathy) and attending to the patient’s weight, which conveyed concern for the patient. ConclusionsOur findings reflect patients’ ambivalent attitudes toward weight-related care: while weight-focused provider communication can be highly stigmatizing, patients simultaneously desire more weight-management support from providers. Practice ImplicationsProviders who wish to move their practices from a weight-loss focus to one targeting healthy living should provide a rationale for these shifts to inform patients’ perceptions of high-quality care.

Factors that influence young people’s experiences of emergency suicide care in Australia: a qualitative study

Young people in Australia are increasingly presenting to the emergency department in suicide crisis, where their experiences influence present and future treatment outcomes. Previous research on emergency suicide care has predominantly focused on adults’ experiences. This qualitative study aims to identify the factors that influence perceived positive and negative experiences of emergency suicide care for young people. Semi-structured interviews were conducted with 17 young people aged 16-24 years old (mean age = 18.4 years) who presented to an Australian hospital in the past 12 months for a suicide crisis. Young people reflected on the care they received in the emergency department, and the factors that influenced the quality of care. Data underwent reflexive thematic analysis. Most young people reported a negative hospital experience, attributed to resource constraints and invalidating staff responses, reflecting underlying stigma around suicide. Conversely, when young people reported positive experiences, this was largely attributed to empathetic connections with staff. Our findings highlight the importance of compassionate care from hospital staff for young people’s experience of emergency suicide care. Future research with young people is needed to co-design and trial interventions that promote compassionate care and address the barriers with resource constraints in hospitals.

Experiences of dental behaviour support techniques: A qualitative systematic review.

Little is known about patients' or carers' reported experiences of dental care provided using dental behaviour support (DBS) techniques. Qualitative literature can provide unique insight into these experiences. To explore and synthesize qualitative literature related to patient experience of dental behaviour support. A PROSPERO-registered systematic review of qualitative articles was undertaken. Studies were identified through MEDLINE, Embase and PsycINFO. Abstracts were screened by two reviewers and data were extracted to summarize the qualitative findings included within them. A thematic summary approach was used to synthesize the qualitative data identified. Twenty-three studies were included. Studies primarily explored experiences of dental care of children by speaking to their parents (n = 16), particularly regarding paediatric dental general anaesthesia (DGA) (n = 8). Studies of adults' experiences of DBS (n = 7) covered a range of techniques. Nine studies explored broader dental care experiences and did not study specific DBS approaches. A thematic synthesis identified five themes applicable across the studies identified: Trust and the therapeutic alliance supporting effective care delivery; considered information sharing often alleviated anticipatory anxiety; control and autonomy-reduced anxieties; variations in the perceived treatment successes and failures of DBS techniques; and DBS techniques produced longer positive and negative impacts on patients beyond direct care provision. Qualitative research has been under-utilized in research on DBS techniques. Care experiences of most DBS techniques outside of paediatric DGA are poorly understood. Building trust with patients and enabling autonomy appear to support positive patient-reported experiences of care.

"It's Like A Partnership": Exploring the Primary Care Experiences and Patient-Defined Goals of People Who Use Drugs.

Primary care is an important yet underutilized resource in addressing the overdose crisis. Previous studies have identified important aspects of primary care for people who use drugs (PWUD) and have found patient involvement in healthcare decisions and goal-setting to be especially critical. However, there has been limited research describing the primary care goals of PWUD. In harm reduction settings, where it is imperative that PWUD set their own goals, this research gap becomes especially relevant. To explore how PWUD navigate primary care with a focus on understanding their primary care goals. A qualitative study using semi-structured interviews. PWUD currently engaged in primary care at the Respectful and Equitable Access to Comprehensive Healthcare (REACH) Program, a harm reduction-based primary care program in New York City. Between June 2022 and August 2022, we conducted 17 semi-structured interviews. Informed by phenomenology, transcripts were coded using both inductive and deductive codes and themes were developed using thematic analysis approaches. Phenomenological analysis identified four core components that, together, created an experience that participants described as "a partnership" between patient and provider: (1) patient-provider collaboration around patient-defined healthcare goals; (2) support provided by harm reduction-based approaches to primary care anchored in incrementalism and flexibility; (3) care teams' ability to address healthcare system fragmentation; and (4) the creation of social connections through primary care. This holistic partnership fostered positive primary care experiences and supported participants' self-defined care goals, thereby facilitating meaningful care outcomes. To best meet the primary care goals of PWUD, these findings underscore the importance of primary care providers and programs facilitating such partnerships through organizational-level support anchored in harm reduction. Future research should explore how these experiences in primary care affect patient health outcomes, ultimately shaping best practices in the provision of high-quality primary care for PWUD.

Exploring the lived experience of receiving mental health crisis care at emergency departments, crisis phone lines and crisis care alternatives.

Mental health crisis care includes emergency departments (EDs), crisis phone lines and crisis alternatives. Currently, there is an overreliance on EDs to provide mental health crisis care, with evidence that responses are often inadequate to meet the needs of people experiencing mental health crises. However, the complexities of how individuals experience crisis care across the varying contexts of EDs, crisis phone lines and crisis alternatives remain underresearched. This study used a hermeneutical phenomenological approach to understand the lived experience of accessing care during a mental health crisis. Thirty-one Australian adults who had accessed crisis services at ED, phone lines and/or crisis alternatives participated in in-depth interviews. The findings are organised across the temporal narratives of participants' experiences from (1) point of contact, (2) positive and negative care experiences and (3) enduring impacts. Several themes were generated during these phases. The findings demonstrate the interrelated nature of care experiences and enduring impacts. With some exceptions, care received within EDs was harmful, resulting in lasting adverse effects. Responses from crisis phone lines were mixed, with participants appreciating the accessibility of after-hour phone support but finding standardised risk assessments unhelpful. Responses from crisis alternatives to ED were promising, aligning with the need for validation and human connection, but were not always accessible or easy to mobilise during a crisis. Notably, across all settings, positive effects were firmly attributed to the quality of the relationship with specific crisis providers. The findings bring into sharp focus the lived experience of people accessing crisis care and contribute to the shortage of literature on subjective experiences. Providers may better meet the needs of those experiencing mental health crises by understanding the enduring impact of these interactions and the role of human connection beyond a focus on risk assessment, thereby providing opportunities for a joint understanding of risk and meaning-making. Furthermore, understanding the subjective experience of crisis care can guide reforms to ED and develop crisis alternatives to better meet the needs of people in crisis. The first author and the third author are in designated lived experience (Consumer) roles. The first author conducted the interviews and was explicit regarding their lived experience when engaging with participants. Service users were involved as advisors to the study and provided input into the design.

Supporting re-engagement with HIV services after treatment interruption in South Africa: a mixed method program evaluation of MSF’s Welcome Service

Psychosocial challenges impact patients’ ability to remain on antiretroviral therapy lifelong, magnified by disorganized health-systems and healthcare worker (HCW) attitudes. To address this, Médecins Sans Frontières and the Department of Health developed the Welcome Service intervention, to provide person-centered care at re-engagement after HIV treatment interruption. Implemented in Khayelitsha, South Africa, between August 2020 and February 2021, the intervention aimed to reorganize triage, optimize clinical and counselling services and address HCW attitudes. The study used a mixed-methods design, incorporating in-depth interviews, and analyses of programmatic and routine health data. Interviews demonstrated positive patient care experiences. HCWs understood the potential impact of attitudes on patient engagement, however, some continued to demonstrate judgmental attitude. Clinical objectives were variably met at re-engagement: 98% were re-initiated the same day, 50% had a CD4 done, and 45% received tuberculosis prevention. Nevertheless, 4-month retention was 66%, and 88% had a VL < 1000 c/mL. Despite HCWs’ understanding of person-centered care not translating into supportive behaviors, patients had positive care experiences and the intervention ended with a high rate of VL suppression. More efforts are needed to design interventions building on Welcome Service principles to provide person-centered care and sustain retention after re-engagement.

Association Between Intensity and Timing of Specialty Palliative Care and Hospice Exposure With Quality of End-of-Life Care.

Background: Gaps remain in our understanding of the intensity and timing of specialty palliative care (SPC) exposure on end-of-life (EOL) outcomes. Objective: Examine the association between intensity and timing of SPC and hospice (HO) exposure on EOL care outcomes. Design, Settings, Participants: Data for this cohort study were drawn from 2021 adult decedents from Kaiser Permanente Southern California and Colorado (n = 26,251). Caregivers of a decedent subgroup completed a postdeath care experience survey from July to August 2022 (n = 424). Measurements: SPC intensity (inpatient, outpatient, and home-based) and HO exposure in the five years before death were categorized as: (1) No SPC or HO; (2) SPC-only; (3) HO-only; and (4) SPC-HO. Timing of SPC exposure (<90 or 90+ days) before death was stratified by HO enrollment. Death in the hospital and potentially burdensome treatments in the last 14 days of life were extracted from electronic medical records (EMRs) and claims. EOL care experience was obtained from the caregiver survey. Results: Among the EMR cohort, exposure to SPC and HO were: No SPC or HO (38%), SPC-only (14%; of whom, 55% received inpatient SPC only), HO-only (20%), and SPC-HO (28%). For decedents who did not enroll in HO, exposure to SPC 90+ days versus <90 days before death was associated with lower risk of receiving potentially burdensome treatments (adjusted relative risk, aRR: 0.69 [95% confidence interval, CI: 0.62-0.76], p < 0.001) and 23% lower risk of dying in the hospital (aRR: 0.77 [95% CI: 0.73-0.81], p < 0.001). Caregivers of patients in the HO-only (aRR: 1.27 [95% CI: 0.98-1.63], p = 0.07) and SPC-HO cohorts (aRR: 1.19 [95% CI: 0.93-1.52], p = 0.18) tended to report more positive care experience compared to the no SPC or HO cohort. Conclusion: Earlier exposure to SPC was important in reducing potentially burdensome treatments and death in the hospital for decedents who did not enroll in HO. Increasing availability and access to community-based SPC is needed.

Lived experiences of women during induction of labour at a tertiary hospital in Ghana: A qualitative study.

Induction of labour (IOL) has become a major and vital maternal health intervention to facilitate childbirth and minimize the rising caesarean section rates globally. However, there is limited information to facilitate appropriate client counselling, birth preparedness and informed decision making although the procedure has inherent tendency for adverse maternal/perinatal outcomes. Given the need for optimal client education and shared decision making in maternal health, this study explored women's knowledge and their lived experiences of IOL. This qualitative study used in-depth interviews, conducted at the largest teaching hospital in Ghana. Purposive sampling was used to recruit the study participants. Data analysis was performed based on thematic content using inductive framework synthesis. We included 17 women who had undergone IOL, delivered and discharged. Most participants(52.9%) were ≥30 years old, married(88.2%), and 41.1% had no previous childbirth experience. The main indications of IOL were postdate(47%), pre-eclampsia(29%) and gestational diabetes mellitus(11.8%). Data synthesis resulted in three broad themes: women's knowledge on IOL, women's experiences of care and women's difficult experiences including coping mechanisms. We determined mixed responses concerning the themes explored: adequate versus inadequate knowledge; positive versus negative experiences of care and satisfaction. Nearly all women mentioned vaginal examination as their most difficult experience due to severe pain, extreme discomfort, and being psychologically traumatic. The main coping strategy the women developed to navigate the traumatic vaginal examination was by "psyching" themselves. Our study indicates women encounter significant negative and positive experiences during IOL and childbirth in Ghana with vaginal examination cited as the most painful experience. Appropriate antenatal counselling, women empowerment and pre-labour education on childbirth processes and expectations are recommended to enhance birth preparedness and complication awareness. Health system improvement and regular refreshers courses for health workers are urgently required to promote positive women's experiences of care during labour induction and childbirth.