Participants' perspectives on improving retention in HIV care after hospitalization: A post-study qualitative investigation of the MAPPS study

Abstract

Few interventions have been shown to improve retention in HIV care. We recently completed a randomized, controlled trial of a peer mentoring intervention, which failed to increase retention in care or HIV suppression. We sought to gain insight into this negative result and elicit suggestions for future interventions. We conducted semi-structured one-on-one interviews with a sub-sample of participants and all available interventionists after completion of the primary study. Interviews were coded by two researchers and thematically analyzed. Participants in the intervention arm (N = 16) reported good rapport with and benefit from peer mentoring and found the mentors helpful in facilitating the transition from hospital to out-patient clinic. Control arm participants (N = 9) reported similar emotional and social support benefits from the health educators. In both arms, ongoing challenges including completing paperwork, securing transportation, and rescheduling missed appointments were cited, along with internalized stigma and lack of will to seek care, despite the mentors’ best efforts. Suggested improvements to the intervention included: more frequent contact with interventionists; additional support for mental health problems; and targeting overall health rather than a more selective focus on HIV. Mentors and health educators agreed with the participant-reported barriers and added that some participants were too sick to meaningfully participate in the intervention, while others appeared unwilling to engage with the interventionists in a meaningful way. Mentoring was highly acceptable and felt to be impactful, however it was not sufficient to overcome structural barriers or stigma and low motivation in some participants. The attention control intervention may have had an unintended positive impact. Future interventions should focus on broad aspects of health and well-being.

How to improve participant compliance and retention in clinical trials：A Scoping Review

“…In some studies that did not report speci c populations, the top four process factors were: the relationship between researchers and participants (35), researchers' skills on communication (33), frequency of inspection (31), age (28), trust for the trial (28); the top ve improvement strategies were: paying attention to participants' psychological condition (34), full implementation of informed consent (30), money, gifts and other compensation (28), carrying out education (25), pre-compliance and retention assessment (23).…”

“…In chronic non-fatal diseases, the top ve process factors were age (37), economic (30), education (27), gender (27), researchers' skills on communication (25), support from surrounding people (25); the top ve improvement strategies were money, gifts and other compensation (26), paying attention to participants' psychological (23), providing online reminder (22), carrying out education (21), expanding the channels of recruitment (19).…”

“…Married people may have higher compliance and retention [11,23,25,29,30,31,49,76,88,98,107,109,116,130,132,136,151,153,158,161,169,182,183] 23/182 Life experience T a…”

“…The more support from surrounding people (family, friends, patient groups), the higher the compliance and retention. [19,20,23…”

How to improve participant compliance in clinical trials: A Scoping Review of process factors

“…Not applicable Anne Daykin2018 [19] NR Public England NR Interview 22 Not applicable Arame Thiam-Diouf2018 [20] HIV Public USA NR Systematic review and meta-analysis 964 10 Studies YS Xu2018 [21] NR No China NR Survey 22 Not applicable Joshua Wynne2018 [22] HIV No England Women Implementation research 322 Not applicable Sophie G 2018 [23] HIV public USA Adults Interview 25 Not applicable Chhatre S2018 [24] Cancer public USA Adults Implementation research 551 Not applicable Rosalind J 2018 [25] Ebola public USA Healthcare providers, or Ebola front-line workers…”