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The chronic illness trajectory and its outcomes are well explained by the concept of illness identity; the extent to which ill individuals have integrated their diagnosed chronic illness into their identity or sense of self. The capacity to measure illness identity in people living with HIV (PLHIV) is still relatively unexplored. However, this is potentially useful to help us understand how outcomes for PLHIV could be improved and sustained. This paper aims to explore the cross-cultural adaptation of a Belgian developed Illness Identity Questionnaire (IIQ) and validate the instrument using a sample of South African adults living with HIV. We followed a phased scale adaptation and validation process which included an investigation of conceptual, item, semantic and operational equivalence and also examined the psychometric properties of the IIQ. The concept of illness identity with its four factors; engulfment, rejection, acceptance and enrichment in PLHIV, was found to be relevant within this context. Five items from the original IIQ were excluded from the adapted IIQ due to either semantic insufficiency and/or inadequate measurement equivalence. The mode of administration of the IIQ was changed to accommodate current study participants. The original four factor 25-item model did not fit current data, however, a better contextualized, four-factor, 20-item model was identified and found valid in the current setting. The results showed adequate statistical fit; χ2/d.f. = 1.516, RMSEA = 0.076, SRMR = 0.0893, and CFI = 0.909. Convergent and discriminant validity were also tenable. The cross-cultural adaptation and validation of the IIQ was successful, resulting in the availability of an instrument capable of measuring illness identity in PLHIV in a high HIV prevalence and resource-constrained setting. This therefore addresses the paucity of information and expands on knowledge about illness identity. [ABSTRACT FROM AUTHOR]

The chronic illness trajectory and its outcomes are well explained by the concept of illness identity; the extent to which ill individuals have integrated their diagnosed chronic illness into their identity or sense of self. The capacity to measure illness identity in people living with HIV (PLHIV) is still relatively unexplored. However, this is potentially useful to help us understand how outcomes for PLHIV could be improved and sustained. This paper aims to explore the cross-cultural adaptation of a Belgian developed Illness Identity Questionnaire (IIQ) and validate the instrument using a sample of South African adults living with HIV. We followed a phased scale adaptation and validation process which included an investigation of conceptual, item, semantic and operational equivalence and also examined the psychometric properties of the IIQ. The concept of illness identity with its four factors; engulfment, rejection, acceptance and enrichment in PLHIV, was found to be relevant within this context. Five items from the original IIQ were excluded from the adapted IIQ due to either semantic insufficiency and/or inadequate measurement equivalence. The mode of administration of the IIQ was changed to accommodate current study participants. The original four factor 25-item model did not fit current data, however, a better contextualized, four-factor, 20-item model was identified and found valid in the current setting. The results showed adequate statistical fit; χ2/d.f. = 1.516, RMSEA = 0.076, SRMR = 0.0893, and CFI = 0.909. Convergent and discriminant validity were also tenable. The cross-cultural adaptation and validation of the IIQ was successful, resulting in the availability of an instrument capable of measuring illness identity in PLHIV in a high HIV prevalence and resource-constrained setting. This therefore addresses the paucity of information and expands on knowledge about illness identity. [ABSTRACT FROM AUTHOR]

The aim of this qualitative study was to explore how individuals living with multiple sclerosis experience their disorder in the South African working environment. In this paper we present the experiences of office-based workers living with multiple sclerosis, their challenges, and coping mechanisms. We purposively recruited seven participants who have been diagnosed with multiple sclerosis in the last five years. Participants were interviewed telephonically. Interviews were guided by a semi-structured interview schedule which was supplemented with additional probes. Interviews were analysed thematically using a qualitative software programme. We identified two superordinate themes: bringing multiple sclerosis into the workplace and adapting to multiple sclerosis in the workplace. The findings demonstrated the diverse manner in which participants chose to disclose their multiple sclerosis and manage co-workers' perceptions of multiple sclerosis. Participants employed practical strategies, such as making using of mobility aids, taking notes, conserving energy, and adapting responsibilities. Participants also negotiated accommodations, such as changing working hours, to overcome their unique challenges. Participants emphasised the importance of keeping a general positive attitude but showed reluctance to prepare for their future decline. Our findings indicate that participants manage the disclosure of their diagnosis of multiple sclerosis in order to maintain a favourable relationship with the workplace. Further, despite various physical and psychological limitations, participants were mostly able to adapt to their work environment. Although further research is required, employers and clinicians should consider focusing on the current needs of individuals living with multiple sclerosis to mitigate work-related challenges, rather than planning for future decline. For individuals living with multiple sclerosis and in employment in South Africa, disclosure, management of perceptions and providing accommodations are key aspects in the experience of multiple sclerosis in the workplace. Finding ways to help those in employment disclose their MS diagnosis to employers and co-workers, is an important avenue and next step for intervention research in this field. Early adjustment and adaptation to MS in the workplace is challenging and further negotiation with line-managers regarding accommodations is often required. Employers and clinicians should focus on accommodating the needs of those diagnosed with multiple sclerosis as they arise, rather than focusing solely on the accommodations needed in the future. [ABSTRACT FROM AUTHOR]

The HIV response is hampered by many obstacles to progression along the HIV care cascade, with men, in particular, experiencing different forms of disruption. One group of men, whose stories remain untold, are those who have succumbed to HIV-related illness. In this paper, we explore how next-of-kin account for the death of a male relative. We conducted 26 qualitative after-death interviews with family members of male PLHIV who had recently died from HIV in health and demographic surveillance sites in Malawi, Tanzania, Kenya, Uganda, Zimbabwe and South Africa. The next-of-kin expressed frustration about the defiance of their male relative to disclose his HIV status and ask for support, and attributed this to shame, fear and a lack of self-acceptance of HIV diagnosis. Next-of-kin painted a picture of their male relative as rebellious. Some claimed that their deceased relative deliberately ignored instructions received by the health worker. Others described their male relatives as unable to maintain caring relationships that would avail day-to-day treatment partners, and give purpose to their lives. Through these accounts, next-of-kin vocalised the perceived rebellious behaviour of these men, and in the process of doing so neutralised their responsibility for the premature death of their relative. [ABSTRACT FROM AUTHOR]

This paper focuses on the role of 'social support' in the experience of fibromyalgia (a musculoskeletal pain disorder) in South Africa. In-depth semi-structured interviews were used to collect narratives from 15 participants. Sources of social support constitute important mechanisms for coping with the illness experience of fibromyalgia. In providing a space for consultation and validation of the diagnosis of fibromyalgia, and the person living with the condition, people giving support fulfil a critical role in shaping the experience. The findings show how support from family, partners, and peers plays an integral role in the process of accepting fibromyalgia diagnosis, adapting to the demands of the condition, and seeking help from healthcare providers. The findings also show the ways in which people with fibromyalgia provide support for others with the condition, and the importance of this peer network in shaping the paths and outcomes of this illness experience. The findings of this study corroborate existing evidence that show fibromyalgia to be a complex condition to manage, due to the multiplicity, uncertainty and contestation that feature in the experience of the illness. Additionally, this study presents the challenges related to the limitations of access to healthcare in the South African context, and the utility of narrative approaches in garnering insight into the ways in which social support is harnessed in this environment. [ABSTRACT FROM AUTHOR]