Dataset Information

Caregivers' Experiences of Pathways to Care for Seriously Ill Children in Cape Town, South Africa: A Qualitative Investigation.

ABSTRACT: Understanding caregivers' experiences of care can identify barriers to timely and good quality care, and support the improvement of services. We aimed to explore caregivers' experiences and perceptions of pathways to care, from first access through various levels of health service, for seriously ill and injured children in Cape Town, South Africa, in order to identify areas for improvement.Semi-structured, qualitative interviews were conducted with primary caregivers of children who were admitted to paediatric intensive care or died in the health system prior to intensive care admission. Interviews explored caregivers' experiences from when their child first became ill, through each level of health care to paediatric intensive care or death. A maximum variation sample of transcripts was purposively sampled from a larger cohort study based on demographic characteristics, child diagnosis, and outcome at 30 days; and analysed using the method of constant comparison.Of the 282 caregivers who were interviewed in the larger cohort study, 45 interviews were included in this qualitative analysis. Some caregivers employed 'tactics' to gain quicker access to care, including bypassing lower levels of care, and negotiating or demanding to see a healthcare professional ahead of other patients. It was sometimes unclear how to access emergency care within facilities; and non-medical personnel informally judged illness severity and helped or hindered quicker access. Caregivers commonly misconceived ambulances to be slow to arrive, and were concerned when ambulance transfers were seemingly not prioritised by illness severity. Communication was often good, but some caregivers experienced language difficulties and/or criticism.Interventions to improve child health care could be based on: reorganising the reception of seriously ill children and making the emergency route within healthcare facilities clear; promoting caregivers' use of ambulances and prioritising transfers according to illness severity; addressing language barriers, and emphasising the importance of effective communication to healthcare providers.

SUBMITTER: Jones CH

PROVIDER: S-EPMC4814040 | biostudies-other | 2016

REPOSITORIES: biostudies-other

ACCESS DATA

Similar Datasets

Project description:BackgroundIn settings where abortion is legally restricted, or permitted but not widely accessible, women face significant barriers to abortion access, sometimes leading them to seek services outside legal facilities. The advent of medication abortion has further increased the prevalence of informal sector abortion. This study investigates the reasons for attempting self-induction, methods used, complications, and sources of information about informal sector abortion, and tests a specific recruitment method which could lead to improved estimates of informal sector abortion prevalence among an at-risk population.MethodsWe recruited women who have sought informal sector abortion services in Cape Town, South Africa using respondent driven sampling (RDS). An initial seed recruiter was responsible for initiating recruitment using a structured coupon system. Participants completed face-to-face questionnaires, which included information about demographics, informal sector abortion seeking, and safe abortion access needs.ResultsWe enrolled 42 women, nearly one-third of whom reported they were sex workers. Thirty-four women (81%) reported having had one informal sector abortion within the past 5 years, 14% reported having had two, and 5% reported having had three. These women consumed home remedies, herbal mixtures from traditional healers, or tablets from an unregistered provider. Twelve sought additional care for potential warning signs of complications. Privacy and fear of mistreatment at public sector facilities were among the main reported reasons for attempting informal sector abortion. Most women (67%) cited other community members as their source of information about informal sector abortion; posted signs and fliers in public spaces also served as an important source of information.ConclusionsWomen are attempting informal sector abortion because they seek privacy and fear mistreatment and stigma in health facilities. Some were unaware how or where to seek formal sector services, or believed the cost was too high. Many informal methods are ineffective and unsafe, leading to potential warning signs of complications and continued pregnancy. Sex workers may be at particular risk of unsafe abortion. Based on these results, it is essential that future studies sample women outside of the formal health sector. The use of innovative sampling methods would greatly improve our knowledge about informal sector abortion in South Africa.

Project description:BackgroundNo known studies have been undertaken in South Africa exploring the contraceptive and fertility needs and preferences of women of reproductive age (18-49) diagnosed with breast cancer. This study set out to understand the contraceptive needs and fertility intentions of women with breast cancer in Cape Town, South Africa.MethodsQualitative in-depth interviews were conducted with 24 women diagnosed with breast cancer and 4 health care providers at a tertiary hospital in Cape Town, South Africa. We explored contraceptive use prior to diagnosis; the impact of breast cancer on future fertility intentions and contraceptive use; understanding of suitable contraceptive methods during and after treatment and women's fertility related counseling needs during their continuum of care. Data were analysed using a thematic analysis approach.ResultsSince being diagnosed with breast cancer, of those women using a contraceptive method, the non-hormonal intrauterine device (IUD) was the most commonly used method. However, women reported receiving limited information from health care providers about contraceptive use and future fertility planning post treatment when fertility desires might change. Many women reported limited information received from healthcare providers about the impact of cancer treatment on their future fertility. Most women did not receive information around fertility preservation options, and few were familiar with the concept. Providers focus was more on preventing pregnancy during treatment and ensuring a patient was on a non-hormonal contraceptive method. Providers supported a more holistic, multidisciplinary approach to breast cancer patient's contraceptive and future fertility needs.ConclusionsLimited contraceptive and future fertility counseling were reported by women despite many women being provided with the IUD. There is a need for improved information and counseling regarding the impact of treatment on contraceptive and fertility options. It is important that cancer care providers provide timely information regarding fertility options and communicate with patients about their fertility concerns prior to treatment and throughout the course of survivorship. The development of evidence-based information tools to enhance patient-provider communication and counseling could address knowledge gaps.

Project description:BackgroundChronic respiratory diseases are common in Cape Town, South Africa. Yet the experiences of how adults with these conditions, such as asthma or COPD (chronic obstructive pulmonary disease), negotiate the health system are poorly understood. Qualitative methodology lends itself to investigate this question.Aim of studyTo explore the "emic" experiences of adults with CRDs in Cape Town when they were negotiating the health system using semi-structured interviews.MethodsInterviews were conducted following informed consent with purposively sampled adults who had attended public hospitals in Cape Town with chronic respiratory disease flare-ups. This work was nested in the quantitative "Diagnosing Airways Disease" study. The topic guide explored patients' experiences of accessing healthcare including receiving and interpretations of the diagnosis and management, and impacts on daily life. Interviews were conducted in Afrikaans, isiXhosa, or English; transcribed, and translated into English and thematically analysed until saturation.ResultsThirty-two interviews (16 in Afrikaans, 8 in isiXhosa, 8 in English) were completed in 2022. 17 women and 15 men participated. Most participants were older than 50 years (25/32), and most were unemployed (13/32) or retired (11/32). The identified themes were: Perceived causes of illness; experiences of healthcare; perceived risks and barriers when accessing healthcare; and impact on earnings. The perceived causes of their illness and risks were structural, and included air pollution, poor quality housing, occupational exposures, limited healthcare services, and fear of violence. These factors led to self-treatment, sharing of medicines, and delay in receiving a diagnosis. Many paid privately for treatments or services to overcome identified shortcomings of the public healthcare system, and many reported additional significant indirect costs. Being ill had a profound impact on income. The identified themes were explored through the lens of "structural violence", where "social structures stop individuals … from reaching their full potential" (Galtung, 1969).ConclusionIn Cape Town structural elements such as stretched healthcare professionals, insufficiently enforced policies on e.g., housing or work-place exposures, poverty and crime made it difficult for participants to successfully navigate their illness experience. It forced some to pay out of pocket to receive perceived better healthcare privately.

Project description:Pulmonary endarterectomy (PEA) is the only definitive and potentially curative therapy for chronic thromboembolic pulmonary hypertension (CTEPH), associated with impressive improvements in symptoms and haemodynamics. However, it is only offered at a few centres in South Africa. The characteristics and outcomes of patients undergoing PEA in Cape Town have not been reported previously. To assess the difference in World Health Organization functional class (WHO-FC) before and at least 6 weeks after surgery. We interrogated the adult cardiothoracic surgery database at the University of Cape Town between December 2005 and April 2021 for patients undergoing PEA at Groote Schuur Hospital and a private hospital. A total of 32 patients underwent PEA, of whom 8 were excluded from the final analysis owing to incomplete data or a histological diagnosis other than CTEPH. The work-up of these patients for surgery was variable: all had a computed tomography pulmonary angiogram, 7 (29%) had a ventilation/perfusion scan, 5 (21%) underwent right heart catheterisation, and none had a pulmonary angiogram. The perioperative mortality was 4/24 (17%): 1 patient (4%) had a cardiac arrest on induction of anaesthesia, 2 patients (8%) died of postoperative pulmonary haemorrhage, and 1 patient (4%) died of septic complications in the intensive care unit. Among the survivors, the median (interquartile range) improvement in WHO-FC was 2 (1 - 3) classes (p=0.0004); 10/16 patients (63%) returned to a normal baseline (WHO-FC I). Even in a low-volume centre, PEA is associated with significant improvements in WHO-FC and a return to a normal baseline in survivors. What the study adds. South African patients undergoing pulmonary endarterectomy (PEA) for chronic thromboembolic pulmonary hypertension (CTEPH) have a marked improvement in functional status, with many returning to a normal functional baseline. However, the small number of patients included in this study indicates that PEA is probably underutilised. Pre- and postoperative assessment is inconsistent, despite availability of established guidelines.Implications of the findings. More patients should be referred to specialist centres for assessment for this potentially curative procedure. Use of guidelines to standardise investigations and monitoring of patients with CTEPH may improve patient selection for surgery.

Dataset Information

Caregivers' Experiences of Pathways to Care for Seriously Ill Children in Cape Town, South Africa: A Qualitative Investigation.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets