Self-management needs, strategies and support for sickle cell disease in developing countries: a scoping review protocol.

INTRODUCTION: Sickle cell disease (SCD) poses a significant global health burden, particularly affecting individuals in developing countries with constrained healthcare resources. While research on self-management in the context of SCD is emerging, it has predominantly focused on primary studies, and there is a notable dearth of evidence synthesis on SCD self-management in developing countries. This scoping review aims to identify and map self-management needs of individuals living with SCD, the strategies they employed to meet those needs, and the support systems available to them. METHODS AND ANALYSIS: The review will be conducted following the Arksey and O'Malley's (2005) 29 framework to comprehensively examine the landscape of SCD self-management research. Searches will be performed in PubMed, Scopus, Embase and Dimensions AI, with additional searches in other databases and grey literature. Indexed literature published in English from inception to January 2024 will be included. Reference list from included studies will also be searched manually. Two teams will be constituted to independently screen titles, abstracts and full text against the eligible criteria. Data will be extracted from included studies onto a customised data extraction form. ETHICS AND DISSEMINATION: Ethical approval is not required for this review due to the fact that it synthesises information from available publications. The findings will be disseminated through publication in a peer-reviewed journal. Also, the findings will possibly be presented at relevant international and national conferences. This protocol has already been registered with the Open Science Framework. The study characteristics such as design and setting will be descriptively analysed and presented as graphs, tables and figures. Thematic analysis will also be conducted based on the study objectives and presented as a narrative summary.

An exploratory qualitative study of the psychological effects of HIV diagnosis; the need for early involvement of mental health professionals to improve linkage to care.

BACKGROUND: Diagnosing a life-threatening disease like the human immunodeficiency virus (HIV) can be unbearable to the individual, which has implications for their subsequent care-seeking decision-making. However, an essential element of HIV testing is identifying infected individuals and linking them with adequate care services, thus contributing to the UNAIDS 95-95-95 targets. The attainment of these targets has been particularly challenging for lower and middle-income countries (LMIC). This study explored the psychological reactions to a positive HIV status in a hospital treatment centre to provide insight into mental health interventions' role in improving HIV screening and early antiretroviral therapy (ART) initiation to enhance the quality of life. METHODS: An exploratory qualitative study was investigated among adults who were diagnosed as HIV positive. Participants were purposively recruited from an HIV Treatment Centre. Data were collected with semi-structured interviews that explored the interpretations and psychological reactions to their positive HIV status. Overall, 18 participants were interviewed to reach saturation. Data were transcribed verbatim and analysed thematically to produce findings that address the study's objective. RESULTS: Following analysis of participants' interpretations, understanding and implications of their HIV-positive diagnosis, two major themes emerged: (1) anxiety regarding the impact of the disease on self, family and society was overwhelming. Participants were anxious because of the stigma, fear, worry, shock, and shame they faced. (2) Participants expressed hopelessness and could not see meaning or purpose in life. Suicidal ideation, suicide plans and self-harm characterised hopelessness. CONCLUSIONS: The initial reaction to the diagnosis of HIV in this LMIC context has the potential to impact linkage to care negatively and, thus, the attainment of the global 95-95-95 targets. It is, therefore, essential that mental health and psychological support services are integrated with testing services to manage the initial reactions and support individuals to improve early linkage to care and thus improve overall outcomes for the infected individual and society.

Child maltreatment mediates the relationship between HIV/AIDS family dysfunction trajectories and psychosocial problems among adolescents.

The relationship between parental HIV/AIDS status or death and child mental health is well known, although the role of child maltreatment as a confounder or mediator in this relationship remains uncertain. This study examined the potential path mechanism through child maltreatment mediating the link between HIV/AIDS family dysfunction trajectories and psychosocial problems. A cross-sectional survey was conducted in the Lower Manya Municipal Assembly of Ghana. A questionnaire which consisted of the Strengths and Difficulties Questionnaire (SDQ), Social and Health Assessment (SAHA), Rosenberg Self-Esteem Scale (RSES) and the Conflict Tactics Scale (CTS) was completed by 291 adolescents. Controlling for relevant sociodemographic confounders, mediation analyses using linear regression were fitted to examine whether the association between family dysfunction and psychosocial problems is mediated by child maltreatment. The results indicate that, among adolescents, child maltreatment fully mediated the association between being orphaned by AIDS and self-esteem (b = .59 [95%CI .32, .91]), delinquency and risky behaviours (b = .56 [95%CI .31, .86]) and peer problems (b = .74 [95%CI .48, 1.03]). Similarly, child maltreatment fully mediated the association between living with an HIV/AIDS-infected parent and self-esteem (b = .78 [95%CI .43, 1.23]), delinquency and risky behaviours (b = .76 [95%CI .45, 1.11]), depression/emotional problems (b = .64 [95%CI .40, .92]) and peer problems (b = .94 [95%CI .66, 1.26]). Partial mediation was found for hyperactivity. Child maltreatment mediates the association between the family dysfunction trajectories of parental HIV/AIDS or death and psychosocial problems among adolescents. This implies that efforts to address child maltreatment among families affected by HIV/AIDS may be helpful in the prevention of psychosocial problems among these children, thus enhancing their wellbeing. The findings therefore underscore the need for comprehensive psychosocial interventions that addresses both the unique negative exposures of HIV/AIDS and maltreatment for children affected by HIV.