Understanding Blogging Motivations in Palliative Care Using Maslow’s Hierarchy of Needs.

The pervasive use and potential of weblogs has increased the field of social health informatics and is becoming increasingly difficult to ignore. The prevalence of these technologies for narrative use brings about the fusion of diverse schools of thought on motivation. One proven model is that of Maslow, whose theory of needs has an intuitive appeal in understanding bloggers’ needs and motivations. This paper considers theoretical and practical blogging experiences for palliative care users through the embracement of Maslow’s hierarchy of needs. Palliative care patients, carers and clinicians were interviewed about their weblogs and data qualitatively analysed. The results indicate that the experience of maintaining a weblog is therapeutic for individuals and fulfils needs hierarchically from the lowest to the highest as outlined in Maslow’s theory

Being young and on the move in South Africa: how ‘waithood’ exacerbates HIV risks and disrupts the success of current HIV prevention interventions

The period between childhood and adulthood has been characterised as a period of ‘waithood’ in which structural conditions may disable young people’s access to basic resources to become independent adults. We consider the specific implications of this experience for newly migrant young people in KwaZulu-Natal, South Africa. We conducted repeat in-depth interviews and participatory workshops over a 12-month period with 38 young people on their experiences of migration, employment, sexual relationships and approaches taken to mitigate HIV-risk, in a high HIV-risk peri-urban setting. The lives of participants within the first year of arriving in a new place were characterised by fluidity and transience, underpinned by the inherent fragility of options and exacerbated by exploitative employers. Conditions of gendered employment opportunities shaped their capacity to source income, including through sexual relationships. Although risks were evident and ongoing, their significance were under-played with exposure conceived as unavoidable and temporary. HIV prevention services were consequently viewed as relevant to ‘other’ young people. Although navigating an ‘adult’ world, these ‘not yet adults’ are exposed to substantial risks. Services should be tailored to address specific and practical support needs of this transient population, alongside provision of harm-reduction and health support

Community perceptions of the socio-economic structural context influencing HIV and TB risk, prevention and treatment in a high prevalence area in the era of antiretroviral therapy.

Following calls for targeted HIV prevention interventions in so-called "hotspots", we explored subjective perceptions of community members in places considered to be high HIV and tuberculosis (TB) transmission areas and those with low prevalence. Although more people now have access to antiretroviral therapy (ART), some areas are still experiencing high HIV transmission rates, presenting a barrier to the elimination of HIV. A rapid qualitative assessment approach was used to access a sample of 230 people who contributed narratives of their experiences and perceptions of transmission, treatment and prevention of HIV and TB in their communities. Theoretical propositions case study strategy was used to inform and guide the thematic analysis of the data with Research Department of Epidemiology & Public Health, University College London, London, UK. Our results support the concept of linking perceived control to health through the identification of structural factors that increase communities' sense of agency. People in these communities did not feel they had the efficacy to effect change in their milieu. The few socio-economic opportunities promote social mobility in search of better prospects which may have a negative impact on community cohesion and prevention strategies. Communities were more concerned with improving their immediate social and economic situations and prioritised this above the prevention messages. Therefore approaches that focus on changing the structural and environmental barriers to prevention may increase people's perceived control. Multifaceted strategies that address the identified constructs of perceived control may influence the social change necessary to make structural interventions successful

Making sense of uncertainty: The precarious lives of young migrants from rural Kwazulu-Natal, South Africa.

This study aims to examine the experiences of young migrants and the role of uncertainty in their precarious lives. Drawing on data from individual interviews and a workshop with young migrants aged 16-24 years old in KwaZulu-Natal, South Africa, we use uncertainty as a theoretical lens, to illustrate the ways in which young migrants' experiences provide meaning for them and give them an opportunity to assess, and plan for better opportunities despite the stark outlook. Thematic analysis was used to examine the multidimensionality of socio-spatial identities in young migrants. The findings illustrate how young migrants hustle for opportunities to lead valuable lives in the face of uncertainty. The implications highlight how attending to the complex intersectional nuances of uncertainty can serve as an enabler of aspirations, alongside essential structural factors influencing migration among young people brought up in rural communities. However, in proposing this alternative view of positive uncertainty, the structural violence experienced by these young people should not be overlooked and should be addressed as per their context

Behavioural and socio-ecological factors that influence access and utilisation of health services by young people living in rural KwaZulu-Natal, South Africa: Implications for intervention.

BACKGROUND: Young people's health service utilisation (the number accessing a facility) has been the focus of guidelines and health systems strengthening policies. This is due to young people being at an increased health risk because of inequitable access and utilisation of health services, which is more pronounced in rural settings with limited service availability. This is a major concern as globally, youth constitute a considerable and increasing part of the population in Sub-Saharan Africa. OBJECTIVE: The objective of this paper is to present a comprehensive approach for the exploration of health service utilisation by young people in rural KwaZulu-Natal, South Africa. We examined barriers and facilitators conceptualised by the constructs of the Theory of Planned Behaviour, framed within a socio-ecological model. METHODS: Data were collected in January to June 2017 from two sites using in-depth interviews, spiral transect walks and community mapping with young people (aged 10 to 24 years), primary care health providers, school health professionals, community stakeholders and young people's parents. RESULTS: Socio-ecological and behavioural factors influenced young people's intention to use services. Barriers included perceived negative attitudes of health providers and perceived poor staff competencies. Facilitators included an appreciation of receiving health education and assumed improved health. At social and community levels, normative beliefs hindered young people from utilising services as they feared stigmatisation and gossip. At a public policy level, structural elements had a disempowering effect as the physical layout of the clinics hindered utilisation, limited resources influenced staffing, and facility opening times were not convenient for school goers. CONCLUSION: We suggest that to fully appreciate the complexity of health service utilisation, it is necessary to not only consider factors and processes relevant to the individual, but also acknowledge and act upon, the disjuncture between community level cultural values, norms and national policies

Social Categorisation and Social Identification: The Mediating Role of Social Isolation and Loneliness in Adolescents Living with HIV

BACKGROUND: Social isolation and loneliness are associated with living with a chronic condition particularly where stigma is a factor. Our study aimed to examine the lived experience of adolescents living with HIV in relation to isolation because of their diagnosis and consequences of disclosure. Giddens' structuration theory was used as an analytic framework to identify the potential mechanisms underlying adolescents living with HIV's experiences. METHOD: Longitudinal in-depth interviews were conducted with 20 adolescents living with HIV aged 15-24 years with each participant taking part in three interviews (total 60) between September 2020 and October 2021. Thematic analysis was performed using Braun and Clarke's steps for coding and analysing qualitative data and informed by the structuration theory framework. RESULTS: The findings indicated that adolescents living with HIV have agency and make conscious choices about sharing their status. However, these choices are influenced by their experiences in their community. The discrimination and negative judgements they often experience prevent them from disclosing their status. Stigma, discrimination, and psychological distress contribute to the isolation that adolescents and young adults living with HIV experience. The limited disclosure itself can lead to them becoming isolated and lonely. CONCLUSION: The negative experiences which adolescents living with HIV face can have an impact not only on their psychological wellbeing but also on their decision to disclose and seek support. These experiences may lead to social isolation and loneliness, an unintended consequence of their action in protecting themselves from the conditions created by the structures/environment in which they live

A reflection on ethical and methodological challenges of using separate interviews with adolescent-older carer dyads in rural South Africa.

BACKGROUND: This article discusses our reflections on ethical and methodological challenges when conducting separate interviews with individuals in dyads in the uMkhanyakude district, South Africa. Our work is embedded in an ethnographic study exploring care relationships between adolescents and their older carers in the context of a large-donor funded HIV programme. We use these reflections to discuss some of the challenges and present possible management strategies that may be adopted in conducting dyadic health research in resource-poor settings. METHODS: Drawing from the relational agency, three rounds of separate interviews and participant observation were undertaken with dyads of adolescents aged between 13 and 19 and their older carers aged 50+ from October 2017 to September 2018. A reflexive journal was kept to record the interviewer's experiences of the whole research process. We identified methodological and ethical challenges from these data during the thematic analysis. RESULTS: A total of 36 separate interviews were conducted with six pairs of adolescent-older carer dyads (n = 12 participants). Five themes emerged: recruitment of dyads, consenting dyads, confidentiality, conducting separate interviews with adolescents and older carers, and interviewer-dyad interaction. We also illustrated how we dealt with these challenges. CONCLUSIONS: Results from this study can guide the recruitment, consenting and collecting data for health studies that employ a similar form of enquiry in LMICs. However, ethical and methodological challenges should be recognised as features of the relationships between cross-generation dyads rather than weaknesses of the method

Influences on decision-making about disclosure of HIV status by adolescents and young adults living with HIV in KwaZulu-Natal, South Africa

Background: Adolescents and young adults living with HIV (AYA) are faced with the challenge of living with a life-long chronic condition. We investigated the influences on the decisions by AYA to disclose their HIV status to family, intimate partners and friends.Methods: Twenty AYA aged between 15 and 24 years were purposely selected through local community-based organisations in eThekwini municipality and uMkhanyakude district in KwaZulu-Natal Province, South Africa. Virtual in-depth interviews were conducted between September 2020 to October 2021 using a topic guide focusing on HIV-status disclosure and the impact of stigma on decision-making capacity. An iterative thematic process was used for analysis.Results: Findings revealed the challenges that AYA experience for disclosure because of stigma and how this impacts their decision-making capacity. Family and friends influenced AYA in processing their discovery of their HIV status offering support needed to manage living with HIV. However, for some AYA disclosing to relatives, friends and intimate partners was difficult because of fears of rejection and recrimination. The act of disclosure was influenced by both internalised and external stigma and the type of relationships and interactions that AYA had with relatives, friends and caregivers.Conclusions: The decision to disclose is challenging for AYA because of the fear of rejection, along with internal and external stigma. The provision of support, whether from family or peers, is important. Enhancing the decision-making capacity of AYA is essential for developing their self-esteem as well as supporting future healthcare choices

Social Categorisation and Social Identification: The Mediating Role of Social Isolation and Loneliness in Adolescents Living with HIV

BACKGROUND: Social isolation and loneliness are associated with living with a chronic condition particularly where stigma is a factor. Our study aimed to examine the lived experience of adolescents living with HIV in relation to isolation because of their diagnosis and consequences of disclosure. Giddens' structuration theory was used as an analytic framework to identify the potential mechanisms underlying adolescents living with HIV's experiences. METHOD: Longitudinal in-depth interviews were conducted with 20 adolescents living with HIV aged 15-24 years with each participant taking part in three interviews (total 60) between September 2020 and October 2021. Thematic analysis was performed using Braun and Clarke's steps for coding and analysing qualitative data and informed by the structuration theory framework. RESULTS: The findings indicated that adolescents living with HIV have agency and make conscious choices about sharing their status. However, these choices are influenced by their experiences in their community. The discrimination and negative judgements they often experience prevent them from disclosing their status. Stigma, discrimination, and psychological distress contribute to the isolation that adolescents and young adults living with HIV experience. The limited disclosure itself can lead to them becoming isolated and lonely. CONCLUSION: The negative experiences which adolescents living with HIV face can have an impact not only on their psychological wellbeing but also on their decision to disclose and seek support. These experiences may lead to social isolation and loneliness, an unintended consequence of their action in protecting themselves from the conditions created by the structures/environment in which they live

Investigation of post-trial access views among study participants and stakeholders using photovoice and semistructured interviews

Purpose We examine the levels of post-trial responsibility ascribed to different stakeholders, following a community-based clinical trial and how the ‘responsibility’ is understood. Methods We employed photovoice, unstructured observations and key informant interviews to gain insights into contexts of access to care following transition to the public health system post trial. We used an inductive narrative analysis to explore experiences and understandings of post-trial access (PTA). Results In their photovoice stories, many participants expressed a sense of abandonment after the trial. This was viewed as a contributing factor to failing to re-engage with care available in the public health system. This led to the experiences of loss as some trial participants defaulted and died. Research investigators, department of health participants and sponsor agreed that PTA was especially important for communities in resource-limited settings. The government has an obligation towards its citizens while researchers have a responsibility to ensure a smooth transition of patients to public clinics. Sponsors have a responsibility to ensure that the trial is conducted in accordance with the protocol and post-trial agreements are in place and adhered to. Research partnerships among stakeholders were affected by power imbalances making it difficult to negotiate and plan for post-trial care responsibilities. Conclusions The research community still struggles with understanding the scope of PTA responsibilities. Power dynamics between public health actors and research sponsors need to be managed to ensure that government involvement is not tokenistic. The responsibility of trial participants and ethics committees needs to be investigated further