Engagement in and continuity of HIV care among African and Caribbean Black women living with HIV in Ontario,Canada

Abstract

Engagement in care is a key component of the HIV care cascade, yet there are knowledge gaps regarding how to assess HIV care engagement. This study aimed to develop a tool to assess HIV care engagement and to assess associations between HIV care engagement and quality of life (QOL) among African, Caribbean and Black (ACB) women living with HIV (WLWH). We conducted a cross-sectional survey with ACB WLWH across Ontario, Canada. We developed the ‘HIV Engagement in and Continuity of Care Scale’ (HECCS). We conducted exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) to test the scale’s factor structure. We conducted structural equation modeling (SEM) with maximum likelihood estimation to examine the associations between the HECCS and QOL. EFA yielded four factors: access to care, care by doctor/health professionals, control of HIV care, and appointment timekeeping. The CFA of the HECCS demonstrated good model fit: χ² (DF: 1; n = 173) = 1.175, p = 0.278; CFI: 0.998; Tucker-Lewis Index (TLI): 0.990; RMSEA: 0.032. The HECCS was associated with increased QOL. The model fit the data well: χ² (DF: 31, n = 173) = 51.19, p = 0.013; CFI = 0.955; TLI = 0.934; RMSEA = 0.062. Engagement in and continuity of care is multifaceted. We recommend interventions to promote the institutional capacity to better engage ACB WLWH in HIV care.

Keywords

HIV women treatment North America

Introduction

HIV care and treatment are pivotal to viral suppression and to reducing morbidity and mortality among people living with HIV (PLWH).^1–3 The HIV care cascade has multiple stages, including identifying people infected with HIV, linking people to care, retaining them in care, starting antiretroviral therapy (ART), being adherent to treatment, and maintaining viral suppression.^1–3 A global review of the HIV care cascade estimated one-half of PLWH are not regularly engaged in HIV care.³ In a Canadian population-based study, approximately one in five PLWH were not retained in care. Yet, knowledge gaps remain regarding how to measure and improve engagement in HIV care.^1,3

Engagement and retention in care is complex and associated with access to, and quality of, HIV services that are often context specific.^1,2 In examining country-level differences in engagement in care among PLWH, better engagement in care was associated with increased treatment adherence, self-efficacy, and self-esteem.⁴ Conceptualization of engagement and retention in HIV care has largely focused on missed appointments and regular clinic visits⁵; less research has examined social and institutional factors associated with engagement and retention in care.⁵ MacCarthy et al.² described retention in care as among the most difficult of the HIV care cascade elements to measure and called for future work to develop measures to capture the complexity of retention in various contexts.

There is a need for research to better understand and evaluate the engagement and continuity of HIV care—coordinated, continued and high-quality HIV care, and satisfying relationships between patients and health care providers (HCP).^5–10 The concept of continuity of care spans health conditions and has been linked with improved health outcomes, quality of life (QOL), and satisfaction among patients and HCP, with health conditions such as diabetes,⁷ asthma,⁸ post-traumatic stress disorder,¹¹ and substance use.¹² Elements central to continuity of care include: interpersonal elements such as a therapeutic relationship with a HCP; on-going care from one or more providers; care from as few HCP as possible; care from a team that involves communication and coordination; approaches that are consistent, coherent, flexible, and adapt to changing needs over time.¹³ Engagement in, and satisfaction with, care has been shown to be associated with increased QOL among PLWH¹⁴ and improved treatment adherence.^14,15

Horstmann et al.⁵ discussed African American PLWH as a population in the United States (U.S.) at greatest risk for not being retained in care.^16–20 Lower engagement and retention in care among African Americans²¹ are rooted in historical mistrust,¹⁸ legacies of racism and exploitation in medical research, and social, health and economic disparities.¹⁹ This may lead to even greater disparities in HIV care for African American women²⁰ who also experience gender inequities. Limited research has examined engagement and continuity of HIV care among African, Caribbean and Black (ACB) women living with HIV (WLWH) in Canada. Similar to their African American women counterparts in the U.S., ACB women are disproportionately impacted by HIV in Canada. Black women in Canada constitute over one-quarter (26.4%) of reported HIV cases in women nationally, while accounting for less than 3% of Canada’s population.²² WLWH in Canada also report lower virological suppression after ART initiation.²³ There is a need to understand HIV engagement and continuity of care among ACB WLWH.

Few studies have examined the comprehensive concept of engagement in and continuity of HIV care, and scant research has explored continuity of HIV care among ACB WLWH in middle- and high-income countries. A review exploring determinants of QOL among PLWH found that engagement in healthcare was important in enhancing QOL.¹⁴ This was particularly due to HCP’s communication, as communication may hinder or facilitate the formation of trust between the patient and provider, and subsequently determine engagement in care.¹⁴ Other studies found that HCP’s communication was integral to ensuring medication adherence and was associated with improved self-esteem and overall physical health among PLWH.⁴

The aims of this study were: (1) to adapt a comprehensive measure of engagement and continuity of care for PLWH and (2) to examine the associations between engagement in HIV care and QOL among ACB WLWH in Ontario, Canada.

Methods

Study design and population

The inclusion criteria were: (1) being ≥18 years old and (2) self-identifying as (a) woman, (b) being HIV-positive, (c) identifying from the ACB race/ethnicity, and (d) living in Ontario. The cross-sectional questionnaire was administered by nine peer research assistants who were ACB WLWH in three regions of Ontario between June 2010 and January 2011.^24–26 Purposive and convenience sampling were used to recruit study participants from spaces where HIV services were accessed. This study and related documents were approved by Women's College Hospital, University of Toronto, Toronto, Canada. Written informed consent was obtained from all study participants prior to study activities. Participants were compensated with $50 CAD.

Measures

Baseline socio-demographic characteristics were collected including age, income, education, employment status, and relationships status. To assess QOL, we used the WHO-QOL HIV Brief²⁷ tailored for PLWH; this includes six sub-scales to assess domains of: physical health, psychological health, independence, social relationships, environment, and spirituality (in this study: overall scale Cronbach’s alpha = 0.93; subscales: physical health α = 0.73; psychological health α = 0.70; independence α = 0.72; social relationships α = 0.76; environment α = 0.82; spirituality α = 0.74).

Development of HIV quality of care scale

We adapted the Diabetes Continuity of Care Scale (DCCS) to use with PLWH and named it the ‘HIV Engagement in and Continuity of Care Scale (HECCS)’.⁷ HIV is categorized as a chronic illness largely due to its long-term management through medication (ART).^28,29 HIV is similar to other chronic conditions, as it is associated with physical, mental, psychosocial, and behavioral outcomes, thus HIV care also requires attention to all of these domains.²⁸ Management of HIV mirrors aspects of diabetes care, as they both entail behavior and lifestyle modifications, such as diet, sexual behavior, alcohol and substance use,²⁹ lifelong medication adherence, and self-management.²⁸

The DCSS internal consistency (Cronbach's alpha) was 0.89 and the test–retest reliability was r = 0.73. The scale used a five-point response option (strongly disagree to strongly agree) and included 47 items in five domains: Domain 1—access/getting care; Domain 2—care by doctor; Domain 3—care by other healthcare professionals; Domain 4—communication between healthcare professionals; and Domain 5—self-care.⁷

When adapting this scale, we retained the original 10 times in Domain 1 ‘access/getting care’ and replaced the term ‘diabetes’ with ‘HIV’. Similar changes were made for Domain 2; this domain was changed to ‘care by doctor and other care providers’ with ‘diabetes’ being replaced with ‘HIV’ and two new questions being included: ‘I am satisfied with the care I received from my lab technician” and “The lab technician I see does not judge me’. Domain 3 ‘care by other healthcare professionals’ was eliminated. It contained specific items regarding diabetes health concerns that may not be as relevant for PLWH given the variety of co-morbidities that may require the support of a range of HCP. Domain 3 became ‘communication between healthcare professionals’ and the term ‘diabetes’ was replaced with ‘HIV’. The original Domain 5 ‘communication between healthcare professionals’ became Domain 4 ‘self-care’; in the question ‘I monitor my blood sugar as often as I have been told’, ‘blood sugar’ was replaced with ‘viral load’. These modifications resulted in a 35-item scale to pilot-test.

Statistical analysis

Descriptive statistics were used to summarize demographic and outcome variables using means and standard deviations (SD) for continuous variables and frequencies and proportions for categorical variables. All scale items were summed to calculate total and subscale scores. We conducted exploratory factor analysis (EFA) using principal components analysis and varimax rotation to establish the HECCS structure. We conducted reliability analyses, followed by bivariate correlational analyses to explore associations between HECCS and QOL. Then we conducted structural equation modeling (SEM) using maximum likelihood estimation to conduct confirmatory factor analysis (CFA) of the HECCS, and to examine the association. To determine model fit, we calculated: Chi-square; root-mean square error of approximation (RMSEA); comparative fit index (CFI), and the Tucker-Lewis Index (TLI). Analyses were conducted using IBM SPSS 21 and Analysis of Moment Structures (AMOS) (Chicago, IL, U.S.A).^30,31

Results

Study population

The total study population consisted of 173 ACB WLWH from across Ontario. The descriptive statistics of their demographic characteristics are summarized in Table 1.

Table 1.

Socio-demographic characteristics of participants (n = 173).

	Mean or %	SD or n
Age (n = 173)	40.7	8.8
Income (US$)
Median monthly income: $1400 (range: 0–7916)	3937.8	11,589.3
Immigration status (n = 161)
Canadian citizen	36.0%	58
Landed immigrant	34.8%	56
Refugee claimant	16.8%	27
Convention refugee	8.1%	13
Undocumented	3.1%	5
Visa holder (e.g. work, student)	1.2%	2
Sexual orientation (n = 160)
Heterosexual	97.5%	156
Bisexual	1.9%	3
Lesbian	0.6%	1
Relationship status (n = 162)
Single	42.6%	69
Married	17.9%	29
Separated	14.2%	23
In a relationship/dating	9.9%	16
Widowed	8.0%	13
Common law/living with partner	4.9%	8
Divorced	2.5%	4
Highest level of education completed (n = 154)
Less than high school	28.6%	44
High school	26.6%	41
College diploma	26.6%	41
University degree	16.2%	25
Employment status (n = 172)
Part-time	16.9%	29
Full-time	16.3%	28
ODSP (disability)	51.2%	88
Social assistance (welfare)	11.1%	19
Canadian pension plan (retired)	4.7%	8

Note: Percentages are calculated from non-missing responses.

SD: standard deviation.

EFA of the HECCS

The EFA was conducted using principal components analysis with varimax rotation and yielded one HECCS scale (overall scale: Cronbach’s α = 0.903) with 4 factors and 26 items accounting for 56.47% of the scale variance (see online Supplementary file). Factor 1 ‘access to care’ items reflected the ability to receive care, appointments and referrals (Cronbach’s α = 0.85). Factor 2 ‘care by doctor and health professionals’ items included treatment and attitudes by doctors and HCP (Cronbach’s α = 0.90). Factor 3 ‘control of HIV care’ items reflected the ability to manage and cope with HIV and HIV care (Cronbach’s α = 0.70). Factor 4 ‘appointment timekeeping’ items reflected experiences with difficulties making appointments and being kept waiting before/after appointments (Cronbach’s α = 0.73).

Bivariate relationships

Bivariate correlation (not shown) results indicated that age was not significantly associated with any variables, and income was associated with significantly higher overall QOL scores and QOL domains of social relationships and environment. The overall HECCS scores were significantly and positively correlated with overall QOL scores and each QOL subscale, except it was not significantly associated with the spirituality subscale.

SEM results

To further explore the scale structure of the HECCS latent construct, we conducted CFA using SEM with maximum likelihood estimation. The model fit was very good: χ²= 1.175, DF: 1; p = 0.278; CFI: 0.998; TLI: 0.990; RMSEA: 0.032. Each subscale was significantly associated with the latent construct HECCS: access to care (standardized regression weight = 0.53); care by doctor and health professionals (estimate: 2.04, SE: 0.52, CR: 3.89, p < 0.0001; standardized regression weight = 0.98); control of HIV care (estimate: 0.47, SE: 0.09, CR: 5.24, p < 0.0001; standardized regression weight = 0.47); appointment timekeeping (estimate: 0.19, SE: 0.07, CR: 2.81, p = 0.005; standardized regression weight = 0.209) (not shown).

The significant paths and coefficients are presented in Figure 1. Engagement in and continuity of HIV care had a significant direct effect on QOL (estimate: 0.09, SE: 0.03, CR: 2.97, p = 0.003; standardized regression weight: 0.602). The model fit the data very well: χ² (DF: 31, n = 173) = 51.19, p = 0.013; CFI = 0.955; TLI = 0.934; RMSEA = 0.062.

Figure 1.

Final model of HIV engagement in and continuity of care and quality of life among African and Caribbean women living with HIV in Ontario (n = 173).

Discussion

Our study findings suggest that engagement in and continuity of HIV care includes access, care by doctor and health professionals, control of HIV care, and appointment timekeeping. These findings build on prior work with the DCCS⁷ to highlight similar (e.g. care by speciality doctor and HCP) and unique (e.g. control over HIV care) domains to consider when examining engagement in and continuity of care among WLWH. The HECCS items and domains are also congruent with engagement in and continuity of care as encompassing relational processes, longitudinal and coordinated care, team work, and care that is flexible and changes with a patient’s changing needs over time.^13,32

HIV engagement in and continuity of care was associated with increased QOL. This finding corroborates prior research from other health issues that demonstrate continuity of care is associated with improved QOL.³³ Our findings also build on work that demonstrates associations between HIV care satisfaction and improved QOL among PLWH.¹⁴ Our research extends beyond satisfaction with care to highlight the complexity of factors that constitute HIV engagement in and continuity of care—such as control over one’s care—that in turn may contribute to QOL. QOL is a marker of general wellbeing,²⁷ and understanding how to improve QOL among PLWH is important as they report lower QOL compared to HIV-negative persons.³⁴

This study has several limitations. A convenience sample from known networks and settings across Ontario limits its generalizability. The cross-sectional design limits understanding of causality and changes in variables over time. Finally, we did not collect data on clinic visits and participant retention in care or clinical outcomes. Future research should examine the associations between HIV engagement in and continuity of care and the HIV care continuum, including retention in care, ART use, medication adherence, and viral load response.

Understanding domains associated with HIV engagement in and continuity of care has clear implications for practice. Interventions to promote institutional capacity to better serve ACB WLWH can focus on: enhancing access to a range of health care appointments and needs beyond HIV; training HCP to communicate up-to date information and treatment plans with patients; facilitating teamwork and communication between a network of HCP; and scheduling appointments in ways that respect patient’s time. Findings also suggest the need for skill building to allow PLWH to feel in control of their HIV care. ACB WLWH experience particular barriers to accessing and engaging with HIV and other services due to the intersection of racism, sexism, HIV-related stigma and other marginalities.²⁴ Future research should explore gendered and racialized experiences of HIV engagement in and continuity of care.

Engagement in and continuity of care are fundamental values of healthcare provision and central to quality of care and QOL. Our findings that HIV engagement in and continuity of care were associated with QOL among ACB WLWH underscore the salience of health care provision processes in shaping wellbeing among a population overrepresented in Canada’s HIV epidemic. Understanding the complexity of HIV engagement in and continuity of care can inform strategies to transform HIV care in ways that improve retention in care, optimizing ACB women’s positioning in the HIV care cascade.

Footnotes

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by Canadian Institutes of Health Research, Grant# ZNF-107573.

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