The development and evaluation of an online self-management program for men living with HIV in Australia

2017-02-22T01:44:50Z (GMT) by Millard, Tanya Nicole
Medical advances in the management of Human Immunodeficiency Virus (HIV) have improved health outcomes for people with HIV (PWHIV) and significantly reduced mortality. As such, the care of HIV positive individuals has transitioned into a chronic disease management model. PWHIV are required to adjust to changes to their physical and psychological health, social relationships and medication regimes. Additionally, the stigma experienced by PWHIV presents substantial issues surrounding disclosure, intimate relationships and service access. For men living with HIV, psychosocial aspects associated with a positive diagnosis substantially impact health, wellbeing and quality of life (QOL). Despite this, there are presently a lack of programs addressing such issues. Self-management based interventions have demonstrated beneficial outcomes for people adjusting to chronic illnesses and have also been trialled with PWHIV. In self-management interventions, patients are educated and supported to manage their condition, including the physical social and emotional aspects. Self-management involves three tasks: medical management, role management and emotional management, and encompasses six skills: problem solving, decision-making, resource utilisation, the formation of a patient-provider partnership, action planning and self-tailoring. Online interventions are becoming increasingly common in the chronic disease model of care and may offer several advantages for PWHIV. Furthermore, the past decade has seen a substantial increase in the number of HIV-specific websites and online delivery is increasingly being employed in HIV programming. However, there is little empirical evidence available regarding the efficacy of such programs in improving the health and well-being of PWHIV. The overarching goal of this thesis was to develop and evaluate the effectiveness of an online self-management Medical advances in the management of Human Immunodeficiency Virus (HIV) have improved health outcomes for people with HIV (PWHIV) and significantly reduced mortality. As such, the care of HIV positive individuals has transitioned into a chronic disease management model. PWHIV are required to adjust to changes to their physical and psychological health, social relationships and medication regimes. Additionally, the stigma experienced by PWHIV presents substantial issues surrounding disclosure, intimate relationships and service access. For men living with HIV, psychosocial aspects associated with a positive diagnosis substantially impact health, wellbeing and quality of life (QOL). Despite this, there are presently a lack of programs addressing such issues. Self-management based interventions have demonstrated beneficial outcomes for people adjusting to chronic illnesses and have also been trialled with PWHIV. In self-management interventions, patients are educated and supported to manage their condition, including the physical social and emotional aspects. Self-management involves three tasks: medical management, role management and emotional management, and encompasses six skills: problem solving, decision-making, resource utilisation, the formation of a patient-provider partnership, action planning and self-tailoring. Online interventions are becoming increasingly common in the chronic disease model of care and may offer several advantages for PWHIV. Furthermore, the past decade has seen a substantial increase in the number of HIV-specific websites and online delivery is increasingly being employed in HIV programming. However, there is little empirical evidence available regarding the efficacy of such programs in improving the health and well-being of PWHIV. The overarching goal of this thesis was to develop and evaluate the effectiveness of an online self-management intervention for men living with HIV in Australia. This research was conducted in three phases: (1) needs assessment; (2) intervention development and piloting; and (3) intervention implementation and evaluation. The primary objective of phase one was to conduct a multi-faceted needs assessment to underpin subsequent phases. The needs assessment was guided by relevant aspects of the PRECEDE-PROCEDE model of ecological health promotion program planning and involved four steps: First, the literature examining the epidemiology and impact of HIV on men was reviewed. Second, a survey assessing QOL of men living with HIV was conducted and results were compared to Australian normative data. The third step involved focus groups to obtain a more in-depth description of the impact of HIV on QOL and perceived problem areas in daily life. A focus group was also conducted with a multidisciplinary team of service providers working in the area of HIV to explore their perspectives on the impact of HIV and identify problem areas. Finally, a systematic literature review was conducted examining the effectiveness of existing HIV-specific self-management interventions. Findings from the needs assessment were used to inform the development of an intervention addressing the identified needs of gay men living with HIV in Australia. The overarching objective of phase two was to design and pilot a self-management group intervention for gay men living with HIV in Australia. This phase led to the development of the Positive Outlook Program. The Positive Outlook Program was a structured seven-week intervention accessed entirely online. It was the only online self-management program for PWHIV in Australia at that time. The specific intervention priorities targeted by the Positive Outlook Program included (1) managing the emotional impact of HIV; (2) disclosing HIV status to family and friends; (3) maintaining social connectedness; (4) managing HIV within intimate relationships; and (5) disclosure of HIV status to intimate partners. The conceptual framework on which the Positive Outlook Program was based drew from self-efficacy theory, the self-management approach and the group model of service delivery. The program was piloted to assess feasibility, acceptability and preliminary effectiveness. Two pilot studies were conducted. The first pilot employed a pre- and post-test design and included 10 men. This was followed by a pilot randomised study which evaluated within and between group differences in 37 participants randomly assigned to receive the Positive Outlook Program or usual care. Findings from the pilot study suggested that online self-management programs for PWHIV are feasible and acceptable to participants, and have the potential to enhance participants’ QOL, self-efficacy and health related outcomes. Overall, the data supported the conduct of a randomised trial with a sample size sufficient to assess the effectiveness of the Positive Outlook Program. In phase three, a randomised controlled trial (RCT) was employed to evaluate the effectiveness of the Positive Outlook Program (online self-management group intervention) compared to usual care controls. The sample comprised 132 gay men living with HIV in Australia, who were randomly allocated to the intervention (n=68) or usual care control group (n=64). Primary outcomes were evaluated at three time points (baseline, post intervention and 12-week post-intervention follow-up), and included HIV-related QOL (PROQOL-HIV), outcomes of health education (HeiQ) and HIV-specific self-efficacy (Positive Outlook Self-Efficacy Scale). Secondary outcomes were also evaluated at the three time points and included Depression Anxiety and Stress (DASS-21), Social Support (DSSI), Health-related QOL (SF-12), Generalised Self Efficacy (GSE) and Mental Adjustment to HIV (MAH). For the purposes of this PhD thesis, only the primary outcomes are reported. The results of the study indicated significant improvement by the intervention group in QOL, self-management skills and domain specific self-efficacy, with some diminution in treatment effect between eight and 12-week follow-up. The study therefore demonstrated that the Positive Outlook Program can significantly improve QOL, self-management skills and domain specific self-efficacy for gay men living with HIV in Australia and that online delivery is an effective approach to self-management support, enabling gay men with HIV to build confidence and skills to manage psychosocial issues associated with HIV and facilitating participant engagement while maintaining anonymity. Reducing the burden of HIV on the lives of gay men living with HIV in Australia is a priority. Substantial evidence demonstrates the pervasive impact stigma, limited HIV disclosure and social isolation have on the quality of life and well-being of PWHIV despite longstanding community-based face to face programs. It is critical that innovative programs are developed that enable PWHIV to address these ubiquitous issues. The research conducted as part of this PhD has increased our understanding of the effectiveness of online self-management in improving important outcomes for PWHIV. This knowledge can inform service design and future research concerned with improving the well-being of gay men living with HIV.