Tackling the escalating burden of care in Uganda: a qualitative exploration of the challenges experienced by family carers of patients with chronic non-communicable diseases
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SUBMITTER: Montgomery L
PROVIDER: S-EPMC10696811 | biostudies-literature | 2023 Jan
REPOSITORIES: biostudies-literature
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Project description:BackgroundThe rising incidence of Alzheimer's disease among older-age adults worldwide has been accompanied by an increase in caregiving burden. Limited work has examined the lived experiences of both formal and informal caregivers of people living with dementia in low-income countries.MethodsWe conducted one-on-one, in-depth qualitative interviews with a purposive sample of 10 informal caregivers and 5 formal caregivers of people living with dementia in Mbarara, Uganda. They were interviewed about their experiences caring for people with dementia until thematic saturation was reached. All interviews were audio recorded, transcribed into English, and thematically analysed.ResultsTwo primary themes emerged from the data: patient factors influencing caregiving burden (problematic behaviours, such as wandering and aggression) and patient physical health and cognitive deterioration (namely, loss of memory and incontinence). Psychosocial and economic aspects of caregiving burden included financial costs, family conflicts, anxiety, stigma, and substance misuse.ConclusionsBoth formal and informal caregivers of people living with dementia experience physical, financial, and psychological stressors. Interventions aimed at reducing these stressors would benefit caregivers as well as improve quality of care for people living with dementia.
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Project description:BackgroundNon-communicable diseases are highly prevalent among adults living with HIV, emphasizing the need for comprehensive healthcare strategies. However, a dearth of knowledge exists regarding the health systems challenges in managing HIV and non-communicable diseases and the perception of health workers regarding the integrated management of non-communicable diseases during routine HIV care in rural Ugandan settings. This study aims to bridge this knowledge gap by exploring the health system challenges in managing HIV and non-communicable diseases and health workers' perception regarding the integration of non-communicable diseases in routine HIV care in South Central Uganda.MethodsIn this qualitative study, we collected data from 20 purposively selected key informants from Kalisizo Hospital and Rakai Hospital in South Central Uganda. Data were collected from 15th December 2020 and 14th January 2021. Data were analyzed using a thematic content approach with the help of NVivo 11.ResultsOf the 20 health workers, 13 were females. In terms of work duration, 9 had worked with people living with HIV for 11-15 years and 9 were nurses. The challenges in managing HIV and non-communicable diseases included difficulty managing adverse events, heavy workload, inadequate communication from specialists to lower cadre health workers, limited financial and human resources, unsupportive clinical guidelines that do not incorporate non-communicable disease management in HIV care and treatment, and inadequate knowledge and skills required to manage non-communicable diseases appropriately. Health workers suggested integrating non-communicable disease management into routine HIV care and suggested the need for training before this integration.ConclusionThe integration of non-communicable disease management into routine HIV care presents a promising avenue for easing the burden on health workers handling these conditions. However, achieving successful integration requires not only the training of health workers but also ensuring the availability of sufficient human and financial resources.
| S-EPMC11335126 | biostudies-literature
Project description:BackgroundHypertension (HPT) is an essential public health problem affecting both lower and middle-income countries disproportionately. Evidence suggests that HPT is the leading risk factor for cardiovascular diseases and chronic kidney disease. Yet, challenges faced by patients with HPT in Ghana are not sufficiently explored. This study, documents the challenges patients with HPT face in Ghana.MethodsWe used an explorative descriptive qualitative design. Face-to-face in-depth interviews were conducted with 15 patients with HPT. Interviews were recorded and transcribed verbatim. A thematic content analysis procedure was followed to analyse the data.ResultsFour main themes emerged from interviews; three of which pertained to dimensions of challenges and a fourth which pertained to coping strategies. These include: [1] impairment in physical activities and mobility constraints [2]. Psychological challenges such as suicidal ideations, sadness, fear, anxiety, and reduced sexual affection [3]. Socio-economic challenges identified include loss of friends and social network, difficulty in job demands, and financial burden, and [4] coping strategies such as health system support, social support, and religiosity were identified.ConclusionPatients with HPT experience an array of challenges. We suggest that health care facilities incorporate post HPT diagnosis counseling sessions for HPT patients in the study area. Also, the National Health Insurance Authority (NHIA) should re-examine their scope of services; thus, drugs, laboratory services, and electrocardiogram services to avoid the issue of co-payment. Collaboration between healthcare professionals and family relations of patients with HPT ought to also be strengthened to ensure optimal care.
| S-EPMC8101754 | biostudies-literature
Project description:Background The COVID-19 pandemic has rapidly changed general practice in the UK. Research is required to understand how General Practitioners (GPs) and GP trainees adjusted to these changes, so that beneficial changes might be sustained, and Primary Health Care (PHC) can be prepared for future challenges. This study explored the experiences and perspectives of GP and GP trainees during the pandemic. Methods Remote, semi-structured interviews (n = 21) were conducted with GPs (n = 11) and GP trainees (n = 10), recruited from across the UK using convenience and purposive sampling. Interviews were audio-recorded and transcribed verbatim. Interview data were analysed with an inductive thematic approach. Results Five overarching themes were identified: (1) ‘Thrown in at the deep end’; (2) Telemedicine: ‘it needs to be a happy balance’; (3) Delayed referrals and ‘holding’ patients; (4) The Covid Cohort–training in Covid; (5) Suggestions and lessons for the future of general practice’. GPs reported a turbulent and uncertain time of major changes to PHC. They described the benefits of technology in general medicine, particularly telemedicine, when used in a balanced manner, highlighting the need for accompanying teaching and guidelines, and the importance of patient preferences. Key tools to help GPs manage patients with delayed referrals to Secondary Care were also identified. Conclusion Several key changes to general practice occurred as a result of the COVID-19 pandemic, including a rapid uptake of telemedicine. The pandemic exposed the strengths and limitations of normal general practice and highlighted the importance of workplace camaraderie. These findings contribute to the evidence base used to adapt PHC infrastructures as we emerge from the pandemic.
| S-EPMC9910752 | biostudies-literature
Project description:Family carers of veterans have a tendency not to seek support for their own wellbeing concerns. Understanding the barriers and enablers that family carers face in attending to their own wellbeing and in their caring role generally, is key to supporting family carers of veterans. This qualitative study sought to explore family carers' experiences and perceptions of their caring role, using semi-structured interviews. Questions were designed to capture concepts related to the barriers and enablers family carers face in attending to their own wellbeing. Twenty-two family carers participated in interviews. Thematic analysis facilitated the identification of key themes including the impact of the caring role; a perceived lack of recognition or appreciation of the caring role; expressed preferences for support; and consideration of the family unit. Findings suggest a need for accessible and multi-faceted support services for family carers of veterans, that target the drivers of physical and psychological wellbeing.
| S-EPMC9165811 | biostudies-literature
Project description:BackgroundCarers of patients with advanced organ failure (AOF) experience a tremendous caregiving burden. Social capital utilizes the internal strength of a community to support its members and may provide carers with comprehensive support. This study aimed to identify the different sources of social capital that can support carers of patients with AOF from the perspectives of stakeholders.MethodA descriptive qualitative study was conducted in community settings from April 2021 to May 2022. Stakeholders from medical social work departments, self-help groups, and non-governmental organizations were recruited, while some community members were invited through online media platforms. Individual semi-structured interviews were conducted using an interview guide. Interview transcripts were analyzed using a qualitative description approach. In total, 98 stakeholders, including 25 carers, 25 patients, 24 professionals, and 24 community members, were recruited using purposive and snowball sampling.ResultsSix categories about social capital for carers emerged, namely, carer attributes, the community, social care services, healthcare services, information, and policies. While the attributes of carers and their relationships with care recipients had a significant influence on caregiving, support from different groups in the community, such as neighbors and employers, was valued. Good communication of information about caregiving and social services was emphasized as being helpful by carers and other stakeholders. While carers presented a need for various healthcare and social care services, several features of these services, including their person-centeredness and proactive reach, were deemed useful. At the societal level, policies and research on comprehensive supportive services are warranted. The different sources of social capital constitute a multi-layer support system in the community.ConclusionCarers can utilize personal attributes, interpersonal relationships, community resources, and societal contexts to enhance their caregiving. While this system can serve as a framework for building carer-friendly communities, interventions may be required to strengthen some aspects of social capital.
| S-EPMC10908001 | biostudies-literature
Project description:ObjectivesTo understand how patients and family members experience dehumanizing or humanizing treatment when in the ICU.DesignQualitative study included web-based focus groups and open-ended surveys posted to ICU patient/family social media boards. Focus groups were audio recorded and transcribed. Social media responses were collected and organized by stakeholder group. Data underwent qualitative analysis.SettingRemote focus groups and online surveys.PatientsICU patient survivors, family members, and ICU teams.InterventionsNot available.Measurements and main resultsSemi-structured questions and open-ended survey responses. We enrolled 40 patients/family members and 31 ICU team members. Focus groups and surveys revealed three primary themes orienting humanizing/dehumanizing ICU experiences: 1) communication, 2) outcomes, and 3) causes of dehumanization. Dehumanization occurred during "communication" exchanges when ICU team members talked "over" patients, made distressing remarks when patients were present, or failed to inform patients about ICU-related care. "Outcomes" of dehumanization were associated with patient loss of trust in the medical team, loss of motivation to participate in ICU recovery, feeling of distress, guilt, depression, and anxiety. Humanizing behaviors were associated with improved recovery, well-being, and trust. "Perceived causes" of dehumanizing behaviors were linked to patient, ICU team, and healthcare system factors.ConclusionsBehaviors of ICU clinicians may cause patients and families to feel dehumanized when in the ICU. Negative behaviors are noticed by patients and families, possibly contributing to poor outcomes including mental health, recovery, and lack of trust in ICU teams. Supporting ICU clinicians may enable a more empathic environment and in turn more humanizing clinician-patient encounters.
| S-EPMC8208441 | biostudies-literature
Project description:IntroductionThe global and Albanian populations of elderly people are steadily increasing. It is estimated that the number of elderly adults requiring care in Albania will rise from 90.9 thousand to 130.4 thousand by 2030. Despite the envisaged increase in the number and life expectancy of the elderly population in Albania, which will result in an increased demand for nursing care, little is known about the difficulties and challenges that nurses face while providing care for elderly Albanian individuals.AimTo explore the difficulties and challenges nurses experience while caring for elderly people in Albanian eldercare institutions.MethodsThe study employed a qualitative design using purposive sampling of 20 nurses in 8 eldercare institutions who participated in face-to-face semi-structured interviews. The audio-recorded interviews were transcribed and subsequently subjected to analysis using Graneheim and Lundman's qualitative conventional content analysis. Data analysis was supported by the qualitative data analysis software MAXQDA 2020. The reporting of this study followed the consolidated criteria for reporting qualitative research (COREQ) checklist.ResultsFive key categories emerged from data analysis: (1) professional difficulties, (2) educational difficulties, (3) relationship challenges, (4) increased mental stress, and (5) participation in advocacy. This study showed that nursing staff experienced many barriers, challenges, and unmet needs when implementing care for elderly people in long-term care facilities.ConclusionThe findings indicate that nurses working in eldercare institutions faced significant challenges in caring for elderly people. Nurses need more legal, financial, educational, and emotional support. The study indicates that more organizational and national support is necessary for nursing staff to care for elderly people in eldercare Albanian institutions properly. Eldercare institution leaders need to recognize the importance of their role in overcoming the barriers and providing adequate support for their staff in caring for elderly people.
| S-EPMC10971328 | biostudies-literature
Project description:ObjectiveTo synthesize existing qualitative literature on patient-experienced burden of treatment in multimorbid patients.MethodsA literature search identified available qualitative studies on the topic of burden of treatment in multimorbidity and meta-ethnography was applied as method. The authors' original findings were preserved, but also synthesized to new interpretations to investigate the concept of the burden of treatment using the Cumulative Complexity Model.ResultsNine qualitative studies were identified. The majority of the 1367 participants from 34 different countries were multimorbid. The treatment burden components, experienced by patients, were identified for each study. The components financial burden, lack of knowledge, diet and exercise, medication burden and frequent healthcare reminding patients of their health problem were found to attract additional attention from the multimorbid patients. In studies conducted in the US and Australia the financial burden and the time and travel burden were found most straining to patients with deprived socioeconomic status. The burden of treatment was found to be a complex concept consisting of many different components and factors interacting with each other. The size of the burden was associated to the workload of demands (number of conditions, number of medications and health status), the capacity (cognitive, physical and financial resources, educational level, cultural background, age, gender and employment conditions) and the context (structure of healthcare and social support). Patients seem to use strategies such as prioritizing between treatments to diminish the workload and mobilizing and coordinating resources to improve their ability to manage the burden of treatment. They try to routinize and integrate the treatment into their daily lives, which might be a way to maintain the balance between workload and capacity.ConclusionsHealthcare providers need to increase the focus on minimizing multimorbid patients' burden of treatment. Findings in this review suggest that the weight of the burden needs to be established in the individual patient and components of the burden must be identified.
| S-EPMC5482482 | biostudies-literature
Project description:Background: Infectious diseases are common problems in mass gatherings, especially when there is a lack of health system preparedness. Since Iran is one of the most important countries on the walking path of Arbaeen and has a vital role in providing health services to pilgrims, the experiences of health challenges by participants is of key importance. The aim of this study is to explore stakeholders' experiences on the health system's preparedness and challenges, and to provide suggestions for preventing infectious diseases during the Arbaeen mass gathering. Methods: A qualitative research method was used with a conventional content analysis approach. The number of participants was 17, including 13 executive managers and 4 health policymakers who entered the study among participants. Semi-structured interviews were used to generate the data. Interviews were analyzed by means of content analysis after face-to-face interviews. Results: Data analysis resulted in the extraction of four main themes and 11 sub-themes. Health infrastructure defects in Iraq has three sub-themes (health abandonment in Iraq, the weaknesses in health culture and problems related to the health system); poor control of the causative factors of infectious diseases has three sub-themes (the underlying factors of the prevalence of contagious diseases, health system response to communicable diseases and ignoring the risks of the Arbaeen ceremony); the low perception of risk in pilgrims has three sub-themes (lack of awareness in pilgrims, fatalism in pilgrims and unhygienic belief in pilgrims); and the ineffectiveness of health education has two sub-themes (training shortage in the targeted group and educational content problems) that shows participant's experiences of the health system's challenges for coping with infectious diseases during the Arbaeen ceremony. Conclusion: Pilgrim-based training, planning and controlling other challenges may change these threats to opportunities and improve the health of participants of the mass gathering of Arbaeen in the region.
| S-EPMC6234742 | biostudies-literature