Browsing by Subject "Experiences"

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    Open Access
    Living with systemic lupus erythematosus in South Africa: a bitter pill to swallow
    (2019-04-16) Phuti, A; Schneider, M; Makan, K; Tikly, M; Hodkinson, B
    Background Systemic lupus erythematosus (SLE) often has a profound negative impact on health-related quality of life (HRQoL). In the absence of any qualitative studies in sub-Saharan Africa, we undertook a study to explore living experiences, perceptions and unmet needs of South African patients with SLE. Methods Twenty-five women with SLE consented to participate in the study. They underwent individual in-depth interviews exploring their physical concerns, emotional health, sexual well-being and fertility. NVivo software was used for analysis. Results Participants were either of black ancestry or mixed racial ancestry, mainly indigent with only a quarter gainfully employed. Living with pain was the most common complaint, negatively impacting on activities of daily living (ADL), family expectations, social life, sleep and intimacy. Most participants expressed challenges of living with fatigue, and many felt their fatigue was misconstrued as being ‘simply lazy’. This pernicious fatigue had negative consequences on many facets of ADL, including caring for dependants, job sustainability and sexual well-being. All participants experienced low emotional states, often associated with suicidal ideations. Many experienced difficulties with fertility and childbearing and these were exacerbated in many instances by the pessimism of health care providers, resulting in confusion and depression. Physical disfigurements resulting from lupus-associated alopecia and rashes and corticosteroid-induced weight fluctuations were a major concern. These changes often affected self-image and libido, leading to strained personal relationships. Coping mechanisms that participants adopted included intense spiritual beliefs, ‘pushing through the difficult times’ and use of alternative therapies to relief symptoms was common. A poor understanding of SLE on the part of participant’s family and the community, coupled with the unpredictable course of the disease, exacerbated frustration and social exclusion. For most, limited income, lack of basic services, family dependencies, and comorbid diseases, such as human immune deficiency virus (HIV), exacerbated the daily negative SLE experiences. Conclusion In this study of mainly indigent South African women, SLE is associated with complex, chronic and challenging life experiences. The chronic relapsing and unpredictable nature of the disease, poor understanding and acceptance of SLE, compounded by a background of poverty, inadequate social support structures, negatively impact on a range of personal, social and vocational daily life experiences. Improved access to psychosocial services and SLE education might result in better outcomes. Trial registration (Ethics Project identification code: 275/2016 and M160633 registered 10 & 29 August 2016).
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    Open Access
    Participants’ perspectives of weekly telephonic mood monitoring in South Africa: a feasibility study
    (BioMed Central, 2018-02-22) Van der Watt, A S J; Roos, T; Beyer, C; Seedat, S
    Background Mood and anxiety disorders have a high lifetime prevalence, and their chronicity adds to the management burden of already scarce and strained mental health care resources, particularly in developing countries. Non-professional-assisted interventions and technology (such as weekly telephonic mood monitoring) could assist in the early identification of symptoms of relapse and hospitalization prevention. The present study aimed to determine participants’ perspectives and the feasibility of weekly telephonic mood monitoring in order to inform the development of the full study. Method Semi-structured telephonic interviews (n = 37; 89.2% female; mean age = 33.1 years) were conducted as part of the full-scale feasibility study (N = 61; named the Bipolar Disorder Mood Monitoring (BDMM) Study). The BDMM Study was conducted to determine the viability of weekly telephonic mood monitoring, spanning 26 weeks and starting 1 week post-discharge. Frequency and descriptive statistical analyses (using SPSS version 24) were undertaken, and qualitative data were analyzed using thematic content analysis. Results This article presents the findings from the semi-structured interview section of the BDMM Study. Participants generally expressed positive experiences and perceptions of weekly telephonic mood monitoring, stating that they would advise others to also take part in weekly telephonic mood monitoring. Nonetheless, some participants did make suggestions for improvement of mood monitoring while others expressed negative experiences of weekly telephonic mood monitoring. Conclusion The results of the semi-structured interviews of the BDMM Study indicated that participants perceived weekly telephonic mood monitoring to be helpful in lightening the burden of mood and anxiety disorders (e.g., having someone to talk to, providing insight into their disorders). Not only did it help them, but they also perceived mood monitoring to be potentially helpful to future participants. However, weekly mood monitoring was also burdensome in itself (including being too time consuming and having to answer questions when feeling down). Importantly, the findings highlighted that participants’ and researchers’ perceptions and experiences may not be congruent (especially in terms of therapeutic misconception). The current findings may inform researchers’ future approach to study design and participant relationships.