Geneviève Rouleau

A nursing virtual intervention: real-time support for managing antiretroviral therapy.

Based on a philosophy of empowerment, we developed the HIV Treatment, Virtual Nursing Assistance and Education intervention to equip persons living with HIV for managing their daily antiretroviral therapies. In this article, we describe the project and the process of developing it, which was carried out in three phases: (1) development of the interventions clinical content, (2) generation of a multimedia presentation, and (3) implementation of our Web application via computer interface. The HIV Treatment, Virtual Nursing Assistance and Education consists of four interactive sessions at the computer, animated by a virtual nurse that takes the individual through the learning process about the capabilities necessary for taking the treatment. This information and strategies provided by the virtual nurse are specifically adapted to the participant, according to the responses he/she supplies. The virtual intervention approach, still experimental, is intended to be complementary with the actual clinical follow-up and has been developed in the context of reorganizing services and of the scarcity of resources. While we anticipate direct positive outcomes among the HIV clientele, it is also highly probable that this virtual support application will have ramifications among different clienteles who must also contend with the daily challenges of their health conditions.

Evaluation of a real-time virtual intervention to empower persons living with HIV to use therapy self-management: study protocol for an online randomized controlled trial

BackgroundLiving with HIV makes considerable demands on a person in terms of self-management, especially as regards adherence to treatment and coping with adverse side-effects. The online HIV Treatment, Virtual Nursing Assistance and Education (Virus de I’immunodéficience Humaine–Traitement Assistance Virtuelle Infirmière et Enseignement; VIH-TAVIE™) intervention was developed to provide persons living with HIV (PLHIV) with personalized follow-up and real-time support in managing their medication intake on a daily basis. An online randomized controlled trial (RCT) will be conducted to evaluate the efficacy of this intervention primarily in optimizing adherence to combination anti-retroviral therapy (ART) among PLHIV.Methods/designA convenience sample of 232 PLHIV will be split evenly and randomly between an experimental group that will use the web application, and a control group that will be handed a list of websites of interest. Participants must be aged 18 years or older, have been on ART for at least 6 months, and have internet access. The intervention is composed of four interactive computer sessions of 20 to 30 minutes hosted by a virtual nurse who engages the PLHIV in a skills-learning process aimed at improving self-management of medication intake. Adherence constitutes the principal outcome, and is defined as the intake of at least 95% of the prescribed tablets. The following intermediary measures will be assessed: self-efficacy and attitude towards antiretroviral medication, symptom-related discomfort, and emotional support. There will be three measurement times: baseline (T0), after 3 months (T3) and 6 months (T6) of baseline measurement. The principal analyses will focus on comparing the two groups in terms of treatment adherence at the end of follow-up at T6. An intention-to-treat (ITT) analysis will be carried out to evaluate the true value of the intervention in a real context.DiscussionCarrying out this online RCT poses various challenges in terms of recruitment, ethics, and data collection, including participant follow-up over an extended period. Collaboration between researchers from clinical disciplines (nursing, medicine), and experts in behavioral sciences information technology and media will be crucial to the development of innovative solutions to supplying and delivering health services.Trial registrationCE 11.184 / NCT 01510340

Disclosure experience in a convenience sample of quebec-born women living with HIV: a phenomenological study

BackgroundIn Canada, there has been a considerable increase in the number of women infected with the human immunodeficiency virus (HIV). Within a stigmatized social context, disclosure of HIV positivity is still a prevailing concern among women. Little is known about the global understanding of how French-speaking, Quebec-born women living with HIV, live their serostatus disclosure experience. The aim of this qualitative study is to describe and understand the disclosure experience of these women.MethodsWe conducted semi-structured interviews with seven women. A convenience sample of French-speaking, Quebec-born women was chosen because they all responded to the criteria of wishing to share their disclosure experience. The mean age of the participants was 46 years old (SD±12). They lived with HIV for an average of 10 years; time since diagnosis varied from 8 months to 23 years. Two out of four mothers had given birth to HIV positive children. Data analysis proposed by van Manen was performed to discover the essential themes of the experience.ResultsSeven themes were identified to understand the experience of disclosure in women: 1) Respecting for self and confidants; 2) Feeling apprehension; 3) Exercising control to ensure protection; 4) Deliberately engaging in a process of disclosure/non-disclosure; 5) Exposing oneself to stigma and social exclusion; 6) Suffering internally; and 7) Benefitting from the positive effects of one’s decision. For these women, disclosing their HIV status meant: Living the ambivalence of a paradoxical process of revealing/concealing, in a state of profound suffering, exacerbated by stigma, while also being enriched by the benefits attained.ConclusionsUnderstanding the experience of disclosure in WLHIV is important to guide actions in the practice to support and accompany these women in their unique reality. Health professionals have to broaden their role and work on individual, interpersonal, inter-organizational and intersectoral levels. Mobilization of actors from different sectors would facilitate the implementation of pertinent and opportune interventions.

Acceptability and feasibility of a virtual intervention to help people living with HIV manage their daily therapies

We conducted a study of the acceptability and feasibility of a web application which was designed to empower people living with HIV to manage their daily antiretroviral therapies. The application (VIH-TAVIE) consists of four interactive computer sessions with a virtual nurse who guides the user through a learning process aimed at enhancing treatment management capacities. The information furnished and the strategies proposed by the nurse are tailored, based on the responses provided by the user. The application was evaluated in a hospital setting as an adjunct to usual care. The participants (n = 71) had a mean age of 47 years (SD = 7.6). There were 59 men and 12 women. They had been diagnosed with HIV some 15 years earlier and had been on antiretroviral medication for a mean duration of 11 years. Data were collected by acceptability questionnaires, field notes and observations. Most participants found the application easy to use. They learned tips for taking their medication, diminishing adverse side-effects and maintaining a positive attitude towards treatment. Many participants deemed their experience with the application highly satisfactory and felt that it met their needs with respect to strategies and proficiencies despite their long experience of medication use. The results of the study support the feasibility and acceptability of the intervention.

Impacts of information and communication technologies on nursing care: an overview of systematic reviews (protocol)

BackgroundInformation and communication technologies (ICTs) used in the health sector have well-known advantages. They can promote patient-centered healthcare, improve quality of care, and educate health professionals and patients. However, implementation of ICTs remains difficult and involves changes at different levels: patients, healthcare providers, and healthcare organizations. Nurses constitute the largest health provider group of the healthcare workforce. The use of ICTs by nurses can have impacts in their practice. The main objective of this review of systematic reviews is to systematically summarize the best evidence regarding the effects of ICTs on nursing care.Methods/designWe will include all types of reviews that aim to evaluate the influence of ICTs used by nurses on nursing care. We will consider four types of ICTs used by nurses as a way to provide healthcare: management systems, communication systems, information systems, and computerized decision support systems. We will exclude nursing management systems, educational systems, and telephone systems. The following types of comparisons will be carried out: ICT in comparison with usual care/practice, ICT compared to any other ICT, and ICT versus other types of interventions. The primary outcomes will include nurses’ practice environment, nursing processes/scope of nursing practice, nurses’ professional satisfaction as well as nursing sensitive outcomes, such as patient safety, comfort, and quality of life related to care, empowerment, functional status, satisfaction, and patient experience. Secondary outcomes will include satisfaction with ICT from the nurses and patients’ perspective. Reviews published in English, French, or Spanish from 1 January 1995 will be considered. Two reviewers will independently screen the title and abstract of the papers in order to assess their eligibility and extract the following information: characteristics of the population and setting, type of interventions (e.g., type of ICTs and service provided), comparisons, outcomes, and review limitations. Any disagreements will be resolved by discussion and consensus involving the two reviewers or will involve a third review author, if needed.DiscussionThis overview is an interesting starting point from which to compare and contrast findings of separate reviews regarding the positive and negative effects of ICTs on nursing care.Systematic review registrationPROSPERO CRD42014014762.

Factors Related to Quality of Life in Treatment-Adherent, Successfully Treated HIV Patients in France

The objectives of this study were to document the psychosocial characteristics of treatment-adherent, successfully treated HIV patients and to examine the relationships between psychosocial variables. The sample was composed of 133 persons living with HIV, with optimal adherence to antiretroviral therapy and with no detectable viral load. The psychosocial profile of the cohort showed that participants had moderate levels of stress, used a wide range of strategies to adjust to their situation and perceived their social support to be good. As well, they evaluated their quality of life (Medical Outcome Study-HIV) as moderate. Quality of life in psychological domain is largely explained by perceived stress (53%). Quality of life in physical domain is largely dependent on discomfort reported arising from HIV-associated symptoms and treatment (39%). Findings suggest that treatment-adherent, successfully treated patients with HIV are still a fragile population, and that it is essential to provide interventions that reinforce their ways of coping.

Virtual Intervention to Support Self-Management of Antiretroviral Therapy Among People Living With HIV

Background Living with human immunodeficiency virus (HIV) necessitates long-term health care follow-up, particularly with respect to antiretroviral therapy (ART) management. Taking advantage of the enormous possibilities afforded by information and communication technologies (ICT), we developed a virtual nursing intervention (VIH-TAVIE) intended to empower HIV patients to manage their ART and their symptoms optimally. ICT interventions hold great promise across the entire continuum of HIV patient care but further research is needed to properly evaluate their effectiveness. Objective The objective of the study was to compare the effectiveness of two types of follow-up—traditional and virtual—in terms of promoting ART adherence among HIV patients. Methods A quasi-experimental study was conducted. Participants were 179 HIV patients on ART for at least 6 months, of which 99 were recruited at a site offering virtual follow-up and 80 at another site offering only traditional follow-up. The primary outcome was medication adherence and the secondary outcomes were the following cognitive and affective variables: self-efficacy, attitude toward medication intake, symptom-related discomfort, stress, and social support. These were evaluated by self-administered questionnaire at baseline (T0), and 3 (T3) and 6 months (T6) later. Results On average, participants had been living with HIV for 14 years and had been on ART for 11 years. The groups were highly heterogeneous, differing on a number of sociodemographic dimensions: education, income, marital status, employment status, and living arrangements. Adherence at baseline was high, reaching 80% (59/74) in the traditional follow-up group and 84% (81/97) in the virtual follow-up group. A generalized estimating equations (GEE) analysis was run, controlling for sociodemographic characteristics at baseline. A time effect was detected indicating that both groups improved in adherence over time but did not differ in this regard. Improvement at 6 months was significantly greater than at 3 months in both groups. Analysis of variance revealed no significant group-by-time interaction effect on any of the secondary outcomes. A time effect was observed for the two kinds of follow-ups; both groups improved on symptom-related discomfort and social support. Conclusions Results showed that both interventions improved adherence to ART. Thus, the two kinds of follow-up can be used to promote treatment adherence among HIV patients on ART.

Impact of Information and Communication Technologies on Nursing Care: Results of an Overview of Systematic Reviews

Background Information and communication technologies (ICTs) are becoming an impetus for quality health care delivery by nurses. The use of ICTs by nurses can impact their practice, modifying the ways in which they plan, provide, document, and review clinical care. Objective An overview of systematic reviews was conducted to develop a broad picture of the dimensions and indicators of nursing care that have the potential to be influenced by the use of ICTs. Methods Quantitative, mixed-method, and qualitative reviews that aimed to evaluate the influence of four eHealth domains (eg, management, computerized decision support systems [CDSSs], communication, and information systems) on nursing care were included. We used the nursing care performance framework (NCPF) as an extraction grid and analytical tool. This model illustrates how the interplay between nursing resources and the nursing services can produce changes in patient conditions. The primary outcomes included nurses’ practice environment, nursing processes, professional satisfaction, and nursing-sensitive outcomes. The secondary outcomes included satisfaction or dissatisfaction with ICTs according to nurses’ and patients’ perspectives. Reviews published in English, French, or Spanish from January 1, 1995 to January 15, 2015, were considered. Results A total of 5515 titles or abstracts were assessed for eligibility and full-text papers of 72 articles were retrieved for detailed evaluation. It was found that 22 reviews published between 2002 and 2015 met the eligibility criteria. Many nursing care themes (ie, indicators) were influenced by the use of ICTs, including time management; time spent on patient care; documentation time; information quality and access; quality of documentation; knowledge updating and utilization; nurse autonomy; intra and interprofessional collaboration; nurses’ competencies and skills; nurse-patient relationship; assessment, care planning, and evaluation; teaching of patients and families; communication and care coordination; perspectives of the quality of care provided; nurses and patients satisfaction or dissatisfaction with ICTs; patient comfort and quality of life related to care; empowerment; and functional status. Conclusions The findings led to the identification of 19 indicators related to nursing care that are impacted by the use of ICTs. To the best of our knowledge, this was the first attempt to apply NCPF in the ICTs’ context. This broad representation could be kept in mind when it will be the time to plan and to implement emerging ICTs in health care settings. Trial Registration PROSPERO International Prospective Register of Systematic Reviews: CRD42014014762; http://www.crd.york.ac.uk/PROSPERO/display_record.asp?ID=CRD42014014762 (Archived by WebCite at http://www.webcitation.org/6pIhMLBZh)

Psychosocial Profile and Lived Experience of HIV-infected Long-term Nonprogressors: A Mixed Method Study

&NA; The goal of this mixed method study was to describe the psychosocial profile of HIV‐infected persons identified as long‐term nonprogressors (LTNP), and their experiences of nonprogression. Data were collected from 24 participants with a mean age of 48 years and a mean duration of infection of 14 years. Results show rather moderate levels of anxiety and depression symptoms and a modest mean score of social support. Participants adapted by using acceptance, positive restructuring, and active coping strategies. Seven themes marked the experience: (a) reacting to announcement and dealing with diagnosis, (b) valuing interpersonal relations and well‐being, (c) making changes in life, (d) coping with stress, (e) dealing with health care, (f) beliefs about reasons for nonprogression, and (g) living positively while dreading progression. The findings enrich a field of knowledge that has had little attention so far and shed light on the psychosocial profile of LTNP and their experiences of nonprogression.

Early career researchers’ perspectives and roles in patient-oriented research

Plain English summaryPatient-oriented research (POR) has received increasing attention in recent years. In this approach, patients’ experiential knowledge, derived from their experiences of living with a condition or illness and of interacting with the healthcare system, is recognized, valued, and seen as complementary to scientific knowledge. Early career researchers (ECRs) are the next generation of researchers, but little is known about how they perceive POR. In this study, ECRs were invited to reflect on what POR is, how patients can best contribute to research, and ECRs’ own role in developing POR. Using a technique designed to collect expert opinions and find consensus—the Delphi method—a panel of 16 ECRs responded, in three rounds, to three questionnaires, with the second and third being built on responses to the preceding ones. Based on their understanding, the panelists agreed that the most important element in defining POR would be valuing, mobilizing, and legitimizing the experiential knowledge of patients who live with a particular health condition. Panelists considered patients to be integral members of the research team, but were less convinced that they should be considered co-researchers. The panelists saw themselves as taking part in developing POR by sharing information, teaching, and encouraging POR among their peers, as well as by participating actively in organizations interested in POR. This is the first study to examine the perspectives of ECRs, who, along with many others, have an important role in supporting the on-going development of POR so that it becomes more widely adopted.AbstractBackground Literature on patient-oriented research (POR) is growing rapidly. This field is increasingly encouraged by funders and structured by new research networks. POR involves moving away from considering patients as ‘subjects’, towards perceiving them as experts with experience-based knowledge. However, little is known about how early-career researchers (ECRs) perceive POR and their roles in developing it. This study examined how ECRs perceive POR, patients’ roles, the future of POR, and their own role in developing this approach. Methods A three-round Delphi study was conducted with Quebec’s Strategy for People and Patient-Oriented Research and Trials (SUPPORT) Unit awardees, composed of graduate students and clinicians, all ECRs. Of the 25 invited, 18 agreed to participate (72%), with a three-round retention rate of 89% (n = 16 on 18). Panelists answered open-ended questions, selected the most salient statements, and rated their (dis)agreement with proposals using a 7-point scale. Results Five main themes emerged: 1) ECRs’ knowledge of and experience with POR; 2) the POR definition; 3) patients’ roles and contributions; 4) the future of POR; and 5) ECRs’ roles in POR development. This study revealed that the ECRs were not so familiar with POR, even given their opportunities for networking within a scholarship program. Panelists agreed on the main components of a POR definition: valuing, mobilizing, and legitimizing the experiential knowledge of patients living with a health condition; conducting research that focuses on patients’ concerns, participation, and outcomes; and integrating active partnership among a variety of actors. Panelists considered patients to be integral members of the research team (M = 5.31 ± 1.66), but were less convinced they should be considered co-researchers (M = 4.50 ± 1.75). Panelists saw themselves as playing many roles in developing POR, such as becoming well-informed about it and acting as knowledge brokers, motivators, doers, delegators, and activists. Conclusion The ECRs’ perspectives are informative on how the next generation of researchers envision POR, its future and how they might contribute to developing this approach. There is a clear need for a coherent and concerted strategy for POR capacity development, in which ECRs’ perspectives and their specific needs are taken into account.