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Perceived needs of patients and family caregivers regarding home-based enteral nutritional therapy in South Africa: A qualitative study.

ABSTRACT: INTRODUCTION:The need for specialized care, particularly enteral nutritional therapy in community settings is now increasing with implications for both patients and primary care providers. More research is needed to identify the needs of patients and primary caregivers. The study aimed to explore the perceived support needs regarding the provision of home-based enteral nutritional therapy among critically ill adult patients and family caregivers in the KwaZulu-Natal Province of South Africa. METHODS:A qualitative study of purposely selected adult patients on homebased enteral nutritional therapy and family caregivers was conducted in a district hospital, a community health centre, two primary health care clinics and selected households in the KwaZulu-Natal Province, South Africa. Semi-structured individual interviews were conducted between June and September 2018 and the content analysis approach was used to analyse data. RESULTS:Two major themes and five subthemes emerged from the results of the interviews. The major themes concerned socioeconomic and psychosocial support needs related to the provision of home-based enteral nutritional therapy. Subthemes included the need for financial assistance, need for enteral nutrition products and supplementary supplies, need for infrastructure for continuity of care, and psychological support needs. CONCLUSION:Results of this study confirm the need for developing strategies adapted to a South African context and yonder to meet patients' and family caregivers' needs with regard to nutritional services. More research on the identification of needs through monitoring and evaluation of the implementation of nutritional guidelines is needed, particularly in the district hospital and primary health care (PHC) setting.

SUBMITTER: Mooi NM

PROVIDER: S-EPMC7015406 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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Perceived needs of patients and family caregivers regarding home-based enteral nutritional therapy in South Africa: A qualitative study.

Mooi Nomaxabiso Mildred NM Ncama Busisiwe Purity BP

PloS one 20200212 2

<h4>Introduction</h4>The need for specialized care, particularly enteral nutritional therapy in community settings is now increasing with implications for both patients and primary care providers. More research is needed to identify the needs of patients and primary caregivers. The study aimed to explore the perceived support needs regarding the provision of home-based enteral nutritional therapy among critically ill adult patients and family caregivers in the KwaZulu-Natal Province of South Afr ...[more]

PMID: 32049983

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Project description: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.

Project description:BACKGROUND:Statistics from South Africa show the world's highest HIV prevalence with an estimated seven million people living with the virus. Several studies have pointed to communication about sexuality between parents/caregivers and children as a protective factor. However, communication between generations has been described as problematic, especially due to discomfort in discussing sexual matters. The aim of this study was to explore how caregivers in a poor, rural part of South Africa talked about young people in general, their sexuality, and their lifestyle practices. A particular interest was directed towards central discourses in the caregivers' narratives and how these discourses were of importance for the caregivers to function as conversation partners for young people. METHODS:In this qualitative study convenience sampling was used to select and invite participants. Information was collected from nine one-on-one interviews conducted with caregivers from rural areas within South Africa. The interview guide included nine main questions and optional probing questions. Each interview took place in an uninterrupted setting of choice associated with the caregivers' home environment. The interviews were transcribed and analyzed using discourse analysis. RESULTS:Interview narratives were characterized by three central discourses - demoralized youths in a changing society, prevailing risks and modernity and a generation gap. The youths were discursively constructed as a problematic group relating to specific prevailing risks such as early pregnancies, modern technologies, STI/HIV and contraceptives. The interview narratives illustrated that caregivers tried to impose their views of a respectable lifestyle in young people. At the same time caregivers expressed a morality of despair mirroring a generation gap which counteracted their ability to communicate with their children and grandchildren. CONCLUSIONS:The findings add to the body of earlier research illustrating that rural South African caregivers and their children/grandchildren hold different moral standards. The interview material reflected a 'clash' between generations relating to their differing perceptions of a desirable lifestyle. To overcome the generational gap, we recommend further research about how a well-founded national and community collaboration linked to school-based programs can support family participation in order to empower adults in their communication with young people.

Project description:BackgroundVietnam has experienced a rapid increase in cancer incidence with many cancers (70%) being diagnosed at a late stage. The majority of physical and psychosocial care is provided by caregivers with minimal professional input. Due to limited resources in hospitals and social and cultural norms regarding caregiving in Vietnam, caregivers provide a range of supportive functions for family members diagnosed with cancer.ObjectivesThis study sought to provide empirical evidence on the self-identified unmet needs of caregivers of inpatients in national oncology hospitals in Vietnam.MethodsFocus groups and in-depth interviews were conducted with caregivers (n = 20) and health care providers (n = 22) in national oncology hospitals in Hanoi and Ho Chi Minh City. Data was collaboratively analysed using thematic analysis. Findings were validated through key stakeholder group discussions with both caregivers and healthcare providers across multiple regions in Vietnam.ResultsAnalysis demonstrated that the burden of informal care is high with many caregivers managing patient's severe and complex health needs with minimal support. Caregivers highlighted four main areas of critical need: (i) challenges in providing long term care, particularly in hospital and in-patient settings, such as accessing comfortable facilities, accommodation and finance; (ii) information needs about cancer, treatment, and nutrition; (iii) support for the emotional impact of cancer; and (iv) training about how to provide care to their family members during treatment and recovery phases.ConclusionsCaregivers provide invaluable support in supporting people with a cancer diagnosis, particularly given wider systemic challenges in delivering cancer services in Vietnam. Increasing visibility and formal support is likely to have both a positive impact upon the health and wellbeing of caregivers, as well as for cancer patients under their care. Given its absence, it is critical that comprehensive psychosocial care is developed for caregivers in Vietnam.

Project description:Background No 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. Methods Qualitative 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. Results Since 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. Conclusions Limited 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:BackgroundThere is little evidence of patient acceptability for drug-resistant tuberculosis (DRTB) care in the context of new treatment regimens and HIV co-infection. We aim to describe experiences of DRTB-HIV care among patients in KwaZulu-Natal province, South Africa.MethodsIn this qualitative study using Bury's framework for chronic illness, we conducted 13 focus groups at a tertiary hospital with 55 patients co-infected with DRTB and HIV (28 women, 27 men) who were receiving new bedaquiline-based treatment for DRTB, concurrent with antiretroviral therapy. Eligible patients were consenting adults (aged >18 years) with confirmed DRTB and HIV who were enrolled into the PRAXIS study within 2 weeks of initiating bedaquiline-based treatment for DRTB. Participants were recruited from the PRAXIS cohort to participate in a focus group based on their time in DRTB treatment: early (2-6 weeks after treatment initiation), middle (2-6 months after discharge or treatment initiation if never hospitalised), and late (>6 months after treatment initiation). Focus groups were carried out in isiZulu language, audio recorded, and translated to English within 4 weeks. Participants were asked about their experiences of DRTB and HIV care and treatment, and qualitative data were coded and thematically analysed.FindingsFrom March, 2017, to June, 2018, distinctive patient challenges were identified at four critical stages of DRTB care: diagnosis, marked by centralised hospitalisation, renunciation from routine life, systemic stigmatisation and, for patients with longstanding HIV, renewed destabilisation; treatment initiation, marked by side-effects, isolation, and social disconnectedness; discharge, marked by brief respite and resurgent therapeutic and social disruption; and continuity, marked by deepening socioeconomic challenges despite clinical recovery. The periods of diagnosis and discharge into the community were particularly difficult. Treatment information and agency in decision making was a persistent gap. Sources of stigmatisation shifted with movement between the hospital and community. Resilience was built by connecting to peers, self-isolating, financial and material security, and a focus on recovery.InterpretationPeople with DRTB and HIV undergo disruptive, life-altering experiences. The lack of information, agency, and social protections in DRTB care and treatment causes wider-reaching challenges for patients compared with HIV. Decentralised, community, peer-support, and differentiated care models for DRTB might be ameliorative and help to maximise the promise of new regimens.FundingUS National Institutes of Health.TranslationFor the isiZulu translation of the abstract see Supplementary Materials section.

Project description:BackgroundFamily caregivers are often the first line of support for people requiring care; although they may personally stand to benefit, these activities substantially increase the risk of physical and emotional stress. General practitioners (GPs) may provide important support and stabilisation, but need to adjust to the needs and expectations of this group in order to do so. The aim of the study was to compare the needs of family caregivers from GPs to the support they actually experience. Additional aims included determining the main factors affecting satisfaction amongst family caregivers with support from GPs. The results were used to develop possible approaches towards optimisation within the purview of general medical practice.MethodsBetween January and July 2020, 612 people supporting or caring for a family member responded to an online survey posted in seventeen internet forums focused on family caregivers. In addition to the descriptive analysis, a t-test with independent samples was used to identify significant differences between two groups. We also used binary logistic regression analysis to identify indications of potentially influential factors regarding the experienced support from GPs.ResultsAround three out of every four respondents (72%) consulted GPs in care matters. The respondents gave positive responses on their GP's knowledge of the care situation (71%), approachability in various issues connecting with care and service towards the caregiver (82%). GPs' efforts in meeting the needs and requirements of the care recipient were also rated positively (82%). Weaknesses in support from GPs mainly involved the lack of information on advice and assistance services (55%) as well as frequently not identifying or involving caregivers as such soon enough (42%). Results from regression analysis show that the last two aspects play a major role in subjective satisfaction amongst family caregivers with support from GPs.ConclusionsWe recommend that GPs undergo further training to reinforce awareness that the care triad of needs, requirements and stresses amongst family caregivers also plays a vital role in care outcomes. With this in mind, general practice staff should adopt a pre-emptive strategy towards approaching family members about potential issues and informing them about existing assistance and support services.

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Perceived needs of patients and family caregivers regarding home-based enteral nutritional therapy in South Africa: A qualitative study.

Publications

Perceived needs of patients and family caregivers regarding home-based enteral nutritional therapy in South Africa: A qualitative study.

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