Prevalence of HIV-related stigma manifestations and their contributing factors among people living with HIV in Sweden - a nationwide study.

BACKGROUND: With access to  antiretroviral therapy (ART) HIV infection is a chronic manageable condition and non-sexually transmissible. Yet, many people living with HIV still testify about experiencing HIV-related stigma and discrimination. It is well-documented that HIV-related stigma and discrimination continue to be critical barriers to prevention, treatment, care and quality of life. From an individual stigma-reduction intervention perspective, it is essential to identify individual and interpersonal factors associated with HIV-related stigma manifestations. To address this issue and to expand the literature, the aim of this study was to assess the prevalence of HIV-related stigma manifestations and their associated factors among a diverse sample of people living with HIV in Sweden. METHOD: Data from 1 096 participants were derived from a nationally representative, anonymous cross-sectional survey "Living with HIV in Sweden". HIV-related stigma manifestations were assessed using the validated Swedish 12-item HIV Stigma Scale encompassing four HIV-related stigma manifestations: personalised stigma, concerns with public attitudes towards people living with HIV, concerns with sharing HIV status, and internalized stigma. Variables potentially associated with the HIV-related stigma manifestations were divided into four categories: demographic characteristics, clinical HIV factors, distress and ART adherence, and available emotional HIV-related support. Four multivariable hierarchical linear regression analyses were employed to explore the associations between multiple contributors and HIV-related stigma manifestations. RESULTS: The most dominating stigma feature was anticipation of HIV-related stigma. It was manifested in high scores on concerns with sharing HIV status reported by 78% of the participants and high scores on concerns about public attitudes towards people living with HIV reported by 54% of the participants. High scores on personalised stigma and internalized stigma were reported by around one third of the participants respectively. Between 23 and 31% of the variance of the four reported HIV-related stigma manifestations were explained mainly by the same pattern of associated factors including female gender, shorter time since HIV diagnosis, feelings of hopelessness, non-sharing HIV status, and lack of available emotional HIV-related support. CONCLUSION: The most dominating stigma feature was anticipation of stigma. Female gender, shorter time since HIV diagnosis, feelings of hopelessness, non-sharing HIV status, and lack of available emotional HIV-related support constituted potential vulnerability factors of the four HIV-related stigma manifestations. Our findings highlight the vital necessity to support people living with HIV to increase their resilience to stigma in its different forms. Exploring associated factors of HIV-related stigma manifestations may give an indication of what circumstances may increase the risk of stigma burden and factors amenable to targeted interventions. As individual stigma-reductions interventions cannot be performed isolated from HIV-related stigma and discrimination in society, a key challenge is to intensify anti-stigma interventions also on the societal level.

Objectives and outcomes of patient-driven innovations published in peer-reviewed journals: a qualitative analysis of publications included in a scoping review.

OBJECTIVES: The aim of this study was to gain a deeper understanding of the objectives and outcomes of patient-driven innovations that have been published in the scientific literature, focusing on (A) the unmet needs that patient-driven innovations address and (B) the outcomes for patients and healthcare that have been reported. METHODS: We performed an inductive qualitative content analysis of scientific publications that were included in a scoping review of patient-driven innovations, previously published by our research group. The review was limited to English language publications in peer-reviewed journals, published in the years 2008-2020. RESULTS: In total, 83 publications covering 21 patient-driven innovations were included in the analysis. Most of the innovations were developed for use on an individual or community level without healthcare involvement. We created three categories of unmet needs that were addressed by these innovations: access to self-care support tools, open sharing of information and knowledge, and patient agency in self-care and healthcare decisions. Eighteen (22%) publications reported outcomes of patient-driven innovations. We created two categories of outcomes: impact on self-care, and impact on peer interaction and healthcare collaboration. CONCLUSIONS: The patient-driven innovations illustrated a diversity of innovative approaches to facilitate patients' and informal caregivers' daily lives, interactions with peers and collaborations with healthcare. As our findings indicate, patients and informal caregivers are central stakeholders in driving healthcare development and research forward to meet the needs that matter to patients and informal caregivers. However, only few studies reported on outcomes of patient-driven innovations. To support wider implementation, more evaluation studies are needed, as well as research into regulatory approval processes, dissemination and governance of patient-driven innovations.

Digital Health Technologies Enabling Partnerships in Chronic Care Management: Scoping Review.

BACKGROUND: An increasing number of patients expect and want to play a greater role in their treatment and care decisions. This emphasizes the need to adopt collaborative health care practices, which implies collaboration among interprofessional health care teams and patients, their families, caregivers, and communities. In recent years, digital health technologies that support self-care and collaboration between the community and health care providers (ie, participatory health technologies) have received increasing attention. However, knowledge regarding the features of such technologies that support effective patient-professional partnerships is still limited. OBJECTIVE: This study aimed to map and assess published studies on participatory health technologies intended to support partnerships among patients, caregivers, and health care professionals in chronic care, focusing specifically on identifying the main features of these technologies. METHODS: A scoping review covering scientific publications in English between January 2008 and December 2020 was performed. We searched PubMed and Web of Science databases. Peer-reviewed qualitative, quantitative, and mixed methods studies that evaluated digital health technologies for patient-professional partnerships in chronic care settings were included. The data were charted and analyzed thematically. The PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) checklist was used. RESULTS: This review included 32 studies, reported in 34 papers. The topic of participatory health technologies experienced a slightly increasing trend across publication years, with most papers originating from the United States and Norway. Diabetes and cardiovascular diseases were the most common conditions addressed. Of the 32 studies, 12 (38%) evaluated the influence of participatory health technologies on partnerships, mostly with positive outcomes, although we also identified how partnership relationships and the nature of collaborative work could be challenged when the roles and expectations between users were unclear. Six common features of participatory health technologies were identified: patient-professional communication, self-monitoring, tailored self-care support, self-care education, care planning, and community forums for peer-to-peer interactions. CONCLUSIONS: Our findings emphasize the importance of clarifying mutual expectations and carefully considering the implications that the introduction of participatory health technologies may have on the work of patients and health care professionals, both individually and in collaboration. A knowledge gap remains regarding the use of participatory health technologies to effectively support patient-professional partnerships in chronic care management.

What matters to persons living with brain tumors and their informal caregivers? An interview study of qualities in interpersonal relations.

BACKGROUND: Brain tumor is a severe cancer that may make the person with the illness and their informal caregivers dependent on support in self-care. Social network mapping is a method to assess an individual's social relations and resources, which may help to identify high-quality relations and potential sources of support. Yet, which relations matter for individuals living with brain tumors and their informal caregivers and how social network mapping could be used in self-care need further investigation. AIM: To explore how persons living with brain tumors and informal caregivers perceive the potential usefulness of a social network-mapping tool in their self-care and to describe the qualities in the interpersonal relations that they map. METHODS: Seven persons living with brain tumors and 12 informal caregivers (whereof six bereaved) participated in in-depth interviews and tested a social network-mapping tool developed by an informal caregiver (CareMaps). Data were analyzed inductively using thematic analysis. The COREQ checklist was used for reporting. FINDINGS: Participants expressed positive opinions about the CareMaps tool but raised some questions regarding its design, how to use it in their self-care, and the optimal timing of introducing the tool. Two themes reflecting qualities in relations were found: self-care supportive relations during which daily management of the brain tumor is in focus and identity-preserving relations that allow individuals to disconnect from their brain tumor experiences. Both types of relations were described as important, were found in different contexts (e.g., social life, work life, and healthcare), and emphasized contrasting qualities. CONCLUSION: The CareMaps tool was helpful in elucidating qualities in interpersonal relations that contribute to individuals' self-care. Future research should investigate how social network-mapping tools that capture quality in social relations should be designed and used to support individuals in their self-care.

Being perceived as 'a real woman' or following one's own convictions: a qualitative study to understand individual, family, and community influences on the place of childbirth in Busia, Kenya.

Despite potentially playing a key role in improving maternal and child health, including the prevention of mother-to-child transmission (PMTCT) of HIV, health facility delivery rates remain low in Kenya. Understanding how place of childbirth is determined is therefore important when developing interventions to improve safe motherhood and childbirth outcomes. As part of a qualitative study, we conducted 25 in-depth interviews with mothers (13) and healthcare staff (12) and held 10 focus group discussions with traditional birth attendants (6) and female relatives (4) in Busia, rural Kenya. Our findings show that mothers prefer facility delivery; however, the choice is not theirs alone but involves both their family and the community. Furthermore, facility delivery poses a risk of being viewed as disloyal to tradition and not 'a real woman', which causes a strained relationship between healthcare staff, family and the community. Our interpretation of the findings is that mothers feel trapped between loyalty to sociocultural norms and awareness of the benefits of facility delivery. Also, we believe healthcare staff's disinclination to recognise certain traditional birth attendant services as a potential asset poses a barrier to increased facility deliveries. Interventions to link traditional birth attendants with formal healthcare combined with sociocultural sensitivity training for healthcare staff may increase facility delivery and PMTCT.