True User Involvement by People Living With HIV is Possible: Description of a User-driven HIV Clinic in Norway

Abstract

The Greater Involvement of People Living with or Affected by HIV principle highlights the various contributions HIV-infected people can make in HIV program development and implementation. We present a unique example of how service users' involvement led to a complete organizational redesign of an outpatient HIV clinic in Southern Norway. We applied a user-driven, case study method, which showed that establishing a user board laid the foundation for the redesign process, as the board provided a clear infrastructure of user involvement and developed a set of user-defined targets for services. The main targets-optimal health, holistic care and treatment, and empowerment-were operationalized as a set of action points, such as establishing HIV nurse coordinators. While there is no single method for user involvement, we offer useful ideas that can help others develop an involvement project that is effective and sustainable.

Engaging patients to improve quality of care: a systematic review

“…In designing engagements, several studies pointed to the importance of clarifying the objectives, roles, and expectations of the engagement for patients/carers [ 40 – 45 ]. Approaches that gave users specific roles or engaged them in a formal structure such as a steering committee [ 45 ] or that enabled patients to set the agenda, develop shared mission and purpose statements and participate in all/most stages of the planning, administration, and evaluation made participants feel comfortable with the team and process, maintained patient involvement throughout the course of the process, and improved the quality of outcomes [ 41 , 45 – 50 ]. These techniques occurred in mental health, HIV, and pediatric service settings where patients were engaged to improve access to, and quality of, care or promote a culture change in the development and delivery of services.…”

“…One caveat with this approach is that it needs to be weighed against the potential for introducing biases or including self-selected participants. Offering stipends, financial compensation (e.g., child care, transportation), or other incentives encouraged participation [ 42 , 45 , 50 , 54 , 55 , 58 , 59 ]. One study in the HIV setting used creative techniques to incentivize participation beyond monetary incentives, such as counseling, access to medical care, and granting diplomas [ 58 ].…”

“…These techniques created a level playing field and supported staff in their efforts to be partners. Other studies focused on the empowerment and autonomy of users through “active citizenship” in an “egalitarian spirit” [ 50 , 65 ] which was found to foster a culture of respect [ 54 ]. Ensuring that users had an equal voice throughout all aspects of building the intervention was found to help equalize the power differential that often arises in professionally delivered services [ 65 ].…”

“…This occurred in a variety of ways including top-down approaches and at community levels where local champions led initiatives or were actively engaged to ensure their success. Top-down approaches included institutional- or executive-level commitment and sponsorship, which was readily apparent across mental health, HIV, and pediatric care settings [ 41 , 44 – 46 , 50 , 63 ]. Having managers and executives recognize and advocate for the importance of patient involvement fostered a sense of empowerment and commitment among patients and ensured organizational sustainability of the engagement.…”

A Mixed-Method Study on Correlates of HIV-Related Stigma Among Gay and Bisexual Men in the Southern United States

“…Strong and supportive social networks are essential for handling HIV-related stigma. Preliminary research has indicated that there are several promising ways to bolster social support, such as peer-to-peer work, where a person with HIV provides coaching, support, and education to other PLWH (Berg et al, 2015).…”