Aim: The aim of the study was to diagnose the socioeconomic burden and impact of a diagnosis of cervical cancer in rural women in the context of a low-resourced country, Uganda, through a descriptive qualitative enquiry. Methods: This was a multi-site descriptive qualitative inquiry, conducted at three hospice settings; Mobile Hospice Mbarara in the Southwest, Little Hospice Hoima in Midwest, and Hospice Africa Uganda Kampala in Central Uganda. A purposive sample of women with a histologically confirmed diagnosis of cervical cancer were recruited. Data were collected using open-ended audio-recorded interviews conducted in the native languages of the participants. Interviews were transcribed verbatim in English. Braun and Clarke's (2019) framework of thematic analysis was used. Results: A total of 13 women, with mean age 49.2 years (range 29–71), participated in the study. All participants were of low socioeconomic status. The majority (84.6%) had advanced disease at diagnosis. A detailed reading of transcripts produced three major themes: (1) the impact of cervical cancer on women's relationships (2) the disrupted and impaired activities of daily living (ADLs), and (3) economic disruptions. Conclusions: A diagnosis of cervical cancer introduces significant socioeconomic disruptions in a woman's and her family's life. Cervical cancer causes disability, impairs the woman and her family's productivity and exacerbates levels of poverty in the home. High and expensive out-of-pocket expenditure on investigations, treatments and transport costs further compound the socioeconomic burden.
Aim: To explore the lived experiences of women with advanced incurable cervical cancer attending a palliative care service in Uganda. Methods: This qualitative and exploratory study was conducted at Mobile Hospice Mbarara in South Western Uganda. The target population was a convenience sample of all patients with a confirmed histological diagnosis of advanced cervical cancer; stage 2B to 4B, and clinically advanced disease. Demographic data were collected prior to conducting semi-structured audio-taped interviews. Transcripts were read and re-read, coded and codes were then abstracted into emergent broad-based meaningful themes by consensus. Results: A total of 10 participants, average age of 53.4, age range 40–71, cancer staging 2B to 4 and average duration of illness 3.5 years were interviewed. Six themes emerged from the data: socio-demographic profiles of the women; road to cancer diagnosis; effects of disease on women's quality of life; experiences with main stream medicine; adapting to having cancer and needs of the women. Conclusions: Living with advanced incurable cervical cancer is associated with significant disruptions in all domains of life. Good palliative care enables patients to achieve an optimal quality life. Poverty and a lack of knowledge about cervical cancer among women and health workers are the strongest predictors of a patient receiving a late advanced diagnosis.
Objective: The study sought to (1) examine healthcare professionals’ (HCPs) lived experiences of cancer and (2) generate evidence to inform policy and clinical practice for cancer care. Methods: This was a qualitative study conducted between January and December 2020 on HCPs who were ill with, or who had survived cancer in Uganda. Purposive sampling was used. A demographic form and an open-ended topic guide were used to collect data. Face-to-face and telephone interviews were conducted in English; audio-recorded data was collected until saturation was reached. Colaizzi’s framework of thematic analysis was used. Results: Eight HCP cancer patients and survivors from medical, allied health, and nursing backgrounds participated in the study. Their mean age was 56 years (29–85). Five were female. Four broad themes emerged from the interviews: (1) experience of pre-diagnosis and receiving bad news, (2) impact on self and role identity, (3) healthcare system and treatment experiences, and (4) the gaps and what should be done. Conclusion: Cancer patient-hood introduces vulnerability and remarkable disruptions and suffering in nearly all domains of quality-of-life, that is, in professional identity and work, social, emotional, physical, and economic facets of life. Participants identified how they experienced a healthcare system which was costly and staffed by unmotivated staff with limited access to resources, which resulted in many unmet needs and an overall poor experience. Participants identified how, in their view, the healthcare system in Uganda needed to be better resourced, protected by policy and legislation and how cancer awareness among the population needed to be improved.
Background: Health workers are likely to document patients' care inaccurately, especially when using new and revised case tools, and this could negatively impact patient care. Aim: To assess nurses' and clinicians' documentation practices when using a new patients' continuation case sheet (PCCS) and explore nurses' and clinicians' experiences regarding the documentation of patients' information in the new PCCS. The purpose of introducing the PCCS was to improve the continuity of care for patients attending clinics at which they were unlikely to consistently see the same clinician or nurse. Method: This was a mixed-methods study. The cross-sectional inquiry retrospectively reviewed 100 case notes of active patients in a hospice and palliative care programme. Data were collected using a structured questionnaire with constructs formulated from the new PCCS under study. The qualitative element was face-to-face, audio-recorded, open-ended interviews with a purposive sample of one palliative care clinician and four palliative care nurse specialists. Thematic analysis was used. Results: Patients' biogeographic information was missing in 5% to 10% case notes. Spiritual and psychosocial issues were not documented in 42.6% of patients' case notes and vital signs, in 49.2%. The poorest documentation practices were observed in the past medical history part of the PCCS, noted in 40%–63% of the 100 case notes included in this study. Four themes emerged from interviews with clinicians and nurses: (1) what remains unclear and challenges; (2) comparing the past with the present; (3) experiential thoughts, and; (4) transition and adapting to change. Conclusion: The PCCS seems to be a comprehensive and simple tool that can be used to document patients' information at subsequent visits. To increase its reliability and validity, clinicians and nurses need training on how to use it. Clinicians and nurses need to prioritise accurate and complete documentation of patient care in the PCCS to ensure quality care provision. This study should be extended to other sites using similar tools to ensure representative and generalisable findings.
Aim This inquiry aimed to; (1) examine the psychosocial and emotional sequelae associated with cancer patient‐hood experience in healthcare professionals (HCPs) in Uganda, (2) generate evidence to inform clinical and nursing practice about the needs of HCP patients with cancer. Design This was a qualitative phenomenological study. Methods The study was conducted among HCP cancer patients and survivors recruited from oncology and palliative care settings in Uganda. Data were collected via audio‐taped, face‐to‐face or telephone open‐ended interviews. Interviews were transcribed verbatim. Thematic analysis was used. Results Eight HCP cancer patients and survivors participated in the study. Their mean age was 56 years, range 29–85 years. Three major themes emerged: (1) From a healthcare provider to a patient, (2) Socioeconomic challenges, and (3) Coping and support strategies.
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