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Roles, responsibilities and characteristics of lay community health workers involved in diabetes prevention programmes: A systematic review

  • Jillian Hill ,

    Roles Conceptualization, Data curation, Formal analysis, Funding acquisition, Investigation, Methodology, Project administration, Resources, Software, Validation, Writing – original draft, Writing – review & editing

    jillian@mrc.ac.za

    Affiliation Non-Communicable Diseases Research Unit, South African Medical Research Council, Cape Town, South Africa

  • Nasheeta Peer ,

    Contributed equally to this work with: Nasheeta Peer, Andre Pascale Kengne

    Roles Writing – review & editing

    Affiliations Non-Communicable Diseases Research Unit, South African Medical Research Council, Cape Town, South Africa, Department of Medicine, University of Cape Town, Cape Town, South Africa

  • Brian Oldenburg ,

    Roles Writing – review & editing

    ‡ These authors are joint senior authors on this work.

    Affiliation Melbourne School of Public Health and Global Health, University of Melbourne, Melbourne, Australia

  • Andre Pascale Kengne

    Contributed equally to this work with: Nasheeta Peer, Andre Pascale Kengne

    Roles Conceptualization, Writing – review & editing

    ‡ These authors are joint senior authors on this work.

    Affiliations Non-Communicable Diseases Research Unit, South African Medical Research Council, Cape Town, South Africa, Department of Medicine, University of Cape Town, Cape Town, South Africa

Abstract

Aim

To examine the characteristics of community health workers (CHWs) involved in diabetes prevention programmes (DPPs) and their contributions to expected outcomes.

Methods

Electronic databases including PubMed-MEDLINE, EBSCOHost, and SCOPUS/EMBASE were searched for studies published between January 2000 and March 2016. All studies that used CHWs to implement DPP in ≥18-year-old participants without diabetes but at high risk for developing the condition, irrespective of the study design, setting or outcomes measured, were included. Results were synthesized narratively.

Results

Forty papers of 30 studies were identified. Studies were mainly community-based and conducted in minority populations in USA. Sample sizes ranged from 20 participants in a single community to 2369 participants in 46 communities. Although CHWs were generally from the local community, their qualifications, work experience and training received differed across studies. Overall the training was culturally sensitive and/or appropriate, covering topics such as the importance of good nutrition and the benefits of increased physical activity, communication and leadership. CHWs delivered a variety of interventions and also screened or recruited participants. The shared culture and language between CHWs and participants likely contributed to better programme implementation and successful outcomes.

Conclusions

The complexity of DPPs and the diverse CHW roles preclude attributing specific outcomes to CHW involvement. Nevertheless, documenting potential CHW roles and the relevant training required may optimise CHW contributions and facilitate their involvement in DPPs in the future.

Introduction

The rapid worldwide increase in type 2 diabetes (henceforth referred to as diabetes) has led to the development of a variety of different delivery models to prevent the development of this condition. To this end, a number of large randomised controlled trials (RCT) have demonstrated that lifestyle interventions reduce the incidence of diabetes between 29% and 58% in high-risk populations, and this can be maintained for well over 10 years [1]. However, these programmes when conducted under research conditions are usually resource intensive and thus, not practical or feasible to conduct in primary healthcare (PHC) or community-based settings. Particularly costly is employing professional healthcare workers to implement such interventions, it is not the best use of this resource, especially in developing regions with shortages of skilled healthcare workers.

The global need for efficient and cost-effective use of healthcare resources, particularly in low-income countries has led to the introduction of lay health workers or non-professional community health workers (CHWs) to fulfil a variety of tasks and roles such as patient care, education, support for care delivery, care coordination and social support, especially in remote areas or among minority groups [2, 3]. CHWs have become involved with supporting and filling a variety of capacities in healthcare programmes [4], including in relation to diabetes prevention programmes (DPPs). CHW-led support services to improve health outcomes range from small community-based initiatives to large national programmes. CHWs can be an important link between the community and healthcare, an intervention programme or service delivery by providing context-specific support [2, 5], which can lead to better long-term outcomes for the participants. Such individuals usually have commonality with the community they serve in terms of ethnicity, language, socioeconomic status and life experiences [6]. Rosenthal et al. [7] refers to CHWs as an umbrella term which includes “outreach workers, promotores (as) de salud, community health representatives, and patient navigators”. In a systematic review and meta-analysis of 28 United States (US)-based DPPs, Ali and colleagues [8] described the successes of CHW implemented DPPs. Most significantly, they reported that CHW-delivered interventions were associated with a similar change in weight at follow-up compared with health professional implemented programs [8].

To improve the delivery and outcomes of DPPs that CHW’s are involved with, it is important to identify the key characteristics of CHWs as well as the required training and level of support that are required. However, there is a shortage of such comprehensive assessments in the literature. Therefore, this systematic review aims to examine CHW implemented DPPs and describe the key characteristics that contributed to positive outcomes.

Methods

Data sources

We developed a systematic review protocol using guidelines described by the Preferred Reporting Items for Systematic review and Meta-Analysis Protocols (PRISMA-P) [9], which was registered on the PROSPERO Register (CRD42016043237). The electronic databases searches were done on MEDLINE via PubMed Central, EBSCOHost, and SCOPUS/EMBASE. Free text as well as Medical Subject Headings (MESH) were used, including community health workers, lay health workers, non-professional health workers, Promotores de Salud, community health aids, peer advisors, community health advisors, village aids, community aids, lay counsellors, health promotores, community health promotores, village health volunteers, lay health educators diabetes, diabetes mellitus, type 2 diabetes, and prevention. Boolean operators, such as AND/OR/NOT were used to string terms together. Searches were limited to publications in English. For example in PubMed Central the search strategy was the following:

("community health workers"[MeSH Terms] OR ("community"[All Fields] AND "health"[All Fields] AND "workers"[All Fields]) OR "community health workers"[All Fields]) AND ("diabetes mellitus"[MeSH Terms] OR ("diabetes"[All Fields] AND "mellitus"[All Fields]) OR "diabetes mellitus"[All Fields] OR "diabetes"[All Fields] OR "diabetes insipidus"[MeSH Terms] OR ("diabetes"[All Fields] AND "insipidus"[All Fields]) OR "diabetes insipidus"[All Fields]) AND ("prevention and control"[Subheading] OR ("prevention"[All Fields] AND "control"[All Fields]) OR "prevention and control"[All Fields] OR "prevention"[All Fields])

Additional methods to identify studies included manually searching journals and conference proceedings, checking reference lists, and identifying unpublished data. One author and an independent assessor (JH, LM) independently identified potentially relevant studies by reviewing titles and abstracts retrieved from the aforementioned databases. The full texts of studies identified as potentially relevant were retrieved and screened in duplicate for inclusion. Consensus was achieved through discussion and, when needed, consultation with a senior author (APK).

Definition of community health workers

For the purpose of this review, a CHW is any lay or non-professional health worker involved with the delivery of a diabetes prevention programme, either as a volunteer or for a stipend. This accords with Norris’s description of a CHW as an individual without formal healthcare training but trained to deliver context-specific healthcare to a community with whom s/he has a relationship [2].

Study inclusion criteria

All studies that used CHWs to implement DPP in ≥18-year-old participants without diabetes but at high risk for developing the condition, irrespective of the study design, setting or outcomes measured, were included. Studies that examined outcomes only among the CHWs, e.g. reports of CHW training interventions were also included because the aim of this systematic review is to establish the key characteristics of CHWs who contribute to successful DPP.

Eligible studies included those published in peer-reviewed journals from January 2000 until March 2016. Studies were excluded if they: 1) focused on diabetes management, 2) did not make use of CHWs, 3) comprised interventions of less than three months’ duration, or 4) were narrative reviews, opinion pieces, letters to the editor or any other form of publication without primary data.

Data extraction and synthesis

Two data extraction tables summarise the data from the included studies. Table 1 shows the study-specific details such as the authors’ names, demographic data, methodology and outcomes. Table 2 describes the CHW-specific characteristics including gender, age, education level, the training and support they received, and their role in the intervention. JH entered the summary data in the tables and LM then checked these. Given that the studies included in this systematic review were not sufficiently similar for a meta-analysis, data were synthesised narratively. We compiled thematic summaries relevant to the review objective and research questions stated in the systematic review protocol (unpublished).

Results

Overview of the searches

Database searches identified 18906 entries; after removing duplicates and screening titles and abstracts, 182 publications were selected for further full-text evaluation (Fig 1). Forty one papers fulfilled the inclusion criteria and form the basis of this review. These 41 papers reported on 30 studies with companion papers comprising protocol papers, pilot studies, cost analyses and process evaluation papers.

Study designs and geographic locations

Most studies (24) were conducted in the US, while two studies each were conducted in India [23, 33] and New Zealand [24, 45], and one each in Thailand [32] and Australia [44]. None of the publications originated from Africa.

The 30 primary studies included 10 RCT [10, 13, 14, 1924, 27], 14 quasi-experimental/comparative observational studies [25, 2839], three studies with a one-group pre- test/post-test or post-test only design [41, 43, 44], two case studies [46, 47] and a study each with an interrupted time-series prevalence survey design [45], and a mixed method embedded design [50].

Study settings, participants and interventions

The sample sizes varied widely from 20 participants in a single community to 2369 participants in 46 communities. Intervention settings varied but were mainly community-based such as churches, homes and community centres. A study each was conducted at senior centres [10, 11] and worksites [2527].

Studies were conducted mainly in minority populations such as Latinas/Hispanics [13, 2022, 28, 29, 34, 3638, 42, 43, 47] and African Americans in the US [39, 40], the Maori in New Zealand, and in people without “easy” access to healthcare services [24, 45]. Most studies (n = 22) included 18–79 year old men and women, with a female preponderance. Two studies included men only [31, 39], while six targeted women only [13, 22, 34, 36, 37, 43].

The diabetes prevention interventions and methods of delivery were culturally adapted to the target population. Most of the DPPs were lifestyle interventions; however, one study focused on diabetes education only [40, 41] and another on diabetes risk screening [31].

Profile of community health workers

CHWs were generally from the local study community and shared the same race/ethnic and language backgrounds as the participants. Two exceptions were a worksite-specific study which made use of peer coaches [2527] and a senior centre study of whom some of the lay health educators or coaches were staff members [12]. Nevertheless, these CHWs were likely very familiar with the communities under study. Language was a specified criteria for studies conducted in Hispanic [13, 28, 31] and Korean- American [19] communities in the US, Aborigines in Australia [44], and in Gujarat, India [33].

Most of the publications included in the review did not provide detailed information on CHW characteristics. Gender, age and education level were reported in only eight [12, 17, 29, 4044], six [12, 17, 40, 41, 43, 44] and seven [12, 17, 22, 33, 34, 40, 41] studies, respectively. CHWs were mostly women aged between 20 and 65 years, but usually older than 35 years. Education level varied from high school education to non-health related college degrees [12, 17, 22, 33, 34] with CHWs in Buffalo City, US even having post-graduate qualifications [40, 41].

The qualifications and work experience of CHWs varied widely across studies. Qualifications included: 1) completing only high-school [13, 22, 33, 34] or 2) a CHW-certification programme [43] 3) previous training on measuring automated blood pressure (BP) [31] 4) and 5) post-high school education and some undergraduate education in nutrition [28]. Instead of qualifications, other studies focused on work experience as a CHW [22], prior or current experience in working in various areas of health [51], experience as a community organiser, personal trainer or caregiver [41, 46, 48], or having worked with the investigative team previously [34], as well as being involved in developing and adapting programme curriculum [48]. A qualification or experience in the education, social welfare or health sectors was a pre-requisite in an Australian study [44].

A single study used CHWs with well-controlled diabetes and a history of healthy eating, regular physical activity, weight loss and group leadership experience [14, 18]. In contrast, a study in Thailand recruited CHWs who were simply interested in developing a DPP [32]. Many studies emphasised soft skills in the selection of their CHWs. These included possessing leadership qualities [13, 33, 34, 40, 41], good communication skills and the ability to listen [37], and a dedication to the community [13, 34, 37].

Community health worker training

The duration of the training varied considerably among studies, from a single one-hour session [25, 27] to 40 hours [36], and even 100 hours or more [21, 22, 30]. Overall, the training was culturally sensitive and/or appropriate (Table 2). Topics covered included the importance of good nutrition [32, 43, 44] and the benefits of increased physical activity [14, 38, 43, 46]. Communication [23, 24] and leadership [38, 40, 41] skills to run group sessions, and motivational interviewing to facilitate behaviour change [19, 24, 28, 30, 36, 37] were also emphasised. Most studies utilised interactive training and role-playing to impart skills during the training sessions. Four studies did not describe CHW training [32, 45, 47, 50]. One study put specific emphasis on intervention fidelity/following study protocol [12].

Post-training support ranged from daily supervision to monthly meetings. These included ongoing supervision, monitoring and support [13, 14, 23, 38], weekly technical conference calls [10], weekly staff meeting [43], and monthly meetings with programme leaders and evaluators [41].

Some studies also provided continuous or booster training. These included ongoing training with quarterly refresher training sessions as well as local and national conference attendances [29, 42], biannual booster training sessions [21, 28] and a two-day refresher training mid-way through the intervention programme [23].

Community health worker responsibilities

As summarised in Table 2, most CHWs in these studies delivered the intervention activities, i.e. led or facilitated the group sessions. These included developing and organising activities to promote healthy diets and physical activity such as a weekly senior citizen walking club, diabetes awareness and prevention events, cooking demonstrations, and a monthly fruit and vegetable market [10, 11, 1324, 2830, 3239, 42, 43, 47, 51]. In Buffalo City (US), CHWs led community “living diabetes well” conversations and established “diabetes resource libraries”, which provided information on diabetes, healthy living, healthcare providers, and recipe cards and cookbooks [40, 41]. CHWs linked African-American men with primary healthcare providers and other supportive community resources [39], and in migrant farmworkers screened and referred those at high risk for diabetes and cardiovascular disease (CVD) [31].

Three of the included studies, however, used occupational [27], homecare [50] and rural health nurses [45], instead of CHWs, to deliver the interventions. CHWs only recruited [45] and maintained regular contact with participants providing ongoing support and information [27], and set-up meeting venues and coordinated walking groups [50] in these studies.

CHWs also recruited programme participants in four of the studies where they led the interventions [21, 32, 39, 49] and provided follow-up support between the intervention programme/sessions in three studies [30, 35, 49]. Other CHW tasks included data collection [39] and entry [14, 17], and recording attendance [18, 49] and interactions between participants and project staff [23].

Diabetes prevention programme outcomes

Outcomes of the DPPs are reported in Table 1. Most studies (20) included a measure of adiposity such as weight or waist circumference with weight loss ranging from more than 7% of body weight [38] to modest weight loss of 1.1kg [28]. Unexpectedly, a study reported a significant difference between groups because of weight maintenance in the intervention group, but weight gain in the control group [27].

Eleven studies reported on biochemical outcomes. Blood glucose and insulin levels were measured in 10 studies; it was the primary outcome in six of these studies [14, 18, 22, 2830, 3335, 37, 39, 45]. Six studies reported significant improvements in glucose levels between intervention and control groups or post- and pre-intervention periods [16, 18, 2830, 33]. For example, greater reductions were found in the intervention vs. the usual care groups (-4.3 mg/dL vs. -0.4 mg/dL) [16]), in individuals with impaired fasting glycaemia vs. normoglycaemia (-6.02 mg/dL vs. -1.3 mg/dL) [33], and at the study conclusion vs. during follow-up (-4.529mg/dL vs. 0.686 mg/dL) [29]. Statistically significant reductions in insulin (6.5 uU/ml vs. 2.7uU/ml) and insulin resistance (HOMA-IR) (1.9 vs. 0.8) in the intervention compared to the usual care groups were reported in only a single study [16]. Glycated haemoglobin (HbA1c) was measured in four studies [21, 28, 34, 36] with improvements noted in two studies on Hispanic communities [21]. One study reported a proportionate HbA1c reduction of 37.5% vs. 0.44% in the intervention compared with the delayed intervention group [21], while the other described an absolute reduction of 0.10% vs. 0.04% in the intervention compared to the usual care group in [28].

BP was measured in 13 studies [19, 22, 2836, 39, 45] with improvements noted in eight. Four studies reported significant improvement in both systolic BP (SBP) and diastolic BP (DBP) with reductions of 3.2 mmHg to 13 mmHg for SBP and 2.3 mmHg to 5.1 mmHg for DBP [29, 30, 33, 36]. A single study each reported a 23% decrease in overall BP level [39], a 2.61 mmHg drop in SBP [32] and a 6.2 mmHg reduction in DBP [34].

Lipid levels were measured in nine studies [22, 2830, 3437, 45] with improvements found in five studies. Three studies each reported significant improvements in total cholesterol [29, 36, 37] and low-density lipoprotein cholesterol levels [34, 36, 37].

Nine studies reported on behavioural changes pertaining to greater physical activity levels with different variables assessed [19, 21, 22, 30, 36, 37, 39, 42, 48]. Significant improvements in physical activity were measured as 1) increases in physical activity between baseline and six months [30], and in particular vigorous activity [37], 2) increases in moderate and vigorous walking levels [42], 3) greater aerobic exercise, flexibility and strength [36], 4) increased fitness levels [39], and 5) better social interaction and greater confidence in performing physical activities [19].

Of the nine studies that assessed various food and dietary behaviours, six reported significant improvements. These dietary variables included general food behaviour [22, 42], consumption of sweetened beverages [48], and fruit and vegetable [30]; dietary fat intake [36], and caloric intake and proportion derived from protein sources [37].

Eight studies assessed knowledge on diabetes and/or CVD with all reporting significant improvements [19, 22, 30, 39, 41, 43, 44, 48]. Improved mental health outcomes were noted in two studies; the Personal Health Questionnaire (PHQ-2) and the Generalized Anxiety Disorder Scale (GAD-2) were used in a US Korean community [19] and the Patient Health Questionnaire (PHQ-8) in a US Hispanic population [37]. A single study that examined fatalistic and cultural diabetes beliefs, measured by the Power Fatalism Inventory, showed significant reductions in fatalistic beliefs about diabetes manageability and endorsement of culturally driven diabetes beliefs [36]. Although two studies collected data on quality of life outcomes, neither study reported these findings [14, 23].

Cost analyses of diabetes prevention programmes

Two studies, both from the US, conducted cost analyses for their DPPs [11, 18]. In the study conducted in senior centres, total estimated cost for the CHW delivered lifestyle intervention was $2731 per senior centre or $165 per participant or $45 per kilogram weight lost [11]. These costs were almost half those of a health professional delivered DPP which cost $300 per participant or $88 per kilogram lost [52]. Direct medical costs per participant in the HELP-PD lifestyle intervention programme conducted over two years were $850 compared to $2361 for the first two years in the original DPP conducted in the US [18].

The effect of community health workers on programme outcome

Studies did not specifically compare the use of CHWs vs. health professionals on programme outcomes, except for Thompson et al. [31] who found that CHWs perform as well as registered nurses in the use of non-invasive risk screening tools. Therefore, it is difficult to quantify the specific advantages of using CHWs to implement DPPs. However, DPPs that targeted vulnerable/underserved communities highlighted the importance of CHWs in contributing to their acceptability and appropriateness (Table 3) [21, 22, 24, 30, 35]. Additionally, studies have also emphasised the importance of community participation per se as a major contributor to programme effectiveness [32, 33, 38, 4649]. The shared culture and language between CHWs and participants likely contributed to better programme implementation and outcomes [19, 21, 30, 36, 44]. In essence, using CHWs in DPPs that target culturally and linguistically diverse groups seem to be a credible strategy [44].

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Table 3. Direct CHW effect/contribution as recognised by study authors.

https://doi.org/10.1371/journal.pone.0189069.t003

Discussion

The current review provides evidence from 33 studies of the increasing involvement of CHWs in implementing DPPs. The majority of the studies, however, were undertaken in high income countries, particularly the US. Only three studies were conducted in developing countries, where the incorporation of CHWs in resource-limited settings is likely to have a greater impact.

Most studies targeted the underserved minority such as African-American and Hispanic communities in the US, Aborigines in Australia and the Maori people in New Zealand [24]. The same was true of developing regions where rural communities were the focus in India [23, 33] and Thailand [32]. DPPs that target minority and other vulnerable groups are likely suited to use CHWs who share a common culture, belief system (tradition), and language with the programme participants. This accords with The Centers for Disease Control and Prevention’s Policy Brief (2015) which produce strong evidence for the use of trained lay people i.e. CHWs as a best practice for reducing CVD risk and improving outcomes in high-risk minority populations [53]. Unfortunately, the existing evidence is unclear, inconsistent and insufficient to inform the scaling up of DPPs in diverse settings using CHWs. The complexity of the programmes precluded attributing any specific benefit to the use of CHWs. Similar to these findings, Shah and colleagues noted that despite the large body of literature on CHWs and diabetes care, the wide range of CHW roles and differing outcomes made it difficult to draw conclusions on their overall effectiveness [5].

The outcomes of interest in the included studies were mostly intermediate, such as changes in behaviour or body weight, with no study reporting diabetes incidence. Nevertheless, CHWs are regarded as adding value to programmes by fulfilling a gap/an unmet need [54]. CHW-led interventions are optimally suited to programmes where there is greater community involvement, as shown by a number of studies in this review, which used community-based participatory research approaches [19, 20, 22, 30, 32, 33, 35, 37, 38, 4648].

The profile, scope of roles played, and training received by CHWs varied substantially across programmes. Most DPPs provided information on the training/curriculum to varying degrees [32, 45, 47, 50]. The duration of training varied significantly with shorter training sessions generally scheduled in programmes with fewer CHW responsibilities. While a systematic review reported that the performance of CHWs might improve with regular supervision and continuous training, an optimal model was not suggested [55]. Additionally, CHWs would benefit from clearly defined roles and clear processes for communication [55]. Guidelines that describe the potential roles of CHWs, the appropriate training required for each task/role and the type of programmes that would benefit from CHW involvement may be useful. While such guidelines may need to be adapted for different populations, they may encourage greater utilisation of CHWs in in appropriate healthcare programmes, including DPPs, and lead to better outcomes.

The frequency and duration of the DPP interventions varied, with higher versus lower intensity programmes having the greater impact. For example, CHWs in the HELP-PD programme delivered the intervention sessions, which comprised weekly group sessions for six months, and a monthly session for the following 18 months [16]. This study achieved significant improvements in blood glucose and insulin levels, insulin resistance, weight and BMI with the effects sustained over a two-year period [1517]. Identifying the ideal programme intensity and duration may be useful/of value for optimal outcomes; however, this may possibly vary depending on the outcomes targeted. In addition, longer-term studies are required to ascertain the need to provide intermittent support beyond the 2-year period, which was the maximum duration of the studies included in this review.

The high concentration of studies from developed countries, especially the US, limits the generalisability of our findings. However, most populations studied were underserved or minority communities, which may be of relevance to developing region settings. The inclusion of only published studies in English language in this review may have missed lessons being learnt from potential ongoing CHW-led DPPs, particularly from developing regions, or studies published in other languages. Additional information was not obtained from the study authors to provide greater insight on CHW education, training, experience and supervision and attrition rates. Therefore, the potential for publication bias is evident in this review.

Conclusions

In view of the labour-intensive nature of community-based healthcare programmes, particularly DPPs, and the high cost of professional healthcare staff, pragmatic cost-effective solutions are required for optimal outcomes. The utilisation of adequately trained CHWs with ongoing supervision to perform clearly defined tasks is likely to be most beneficial, as noted in a World Health Organization report on the state of evidence of CHW programmes, “…they must be carefully selected, appropriately trained and–very important–adequately and continuously supported” [3]. In addition to the aforementioned, the success of CHW-led programmes lies in the commonalities such as language, culture and tradition shared between the CHWs and participants. These commonalities facilitate communication and dialogue, which is crucial, and may play a key role in the success of such programmes. However, considering the complexity of DPPs and the diverse roles played by CHWs, it is difficult to disentangle the specific contribution of CHWs to these programmes. Nevertheless, developing guidelines for potential CHW roles and determining the appropriate level of training required may help identify the optimal CHW contribution to DPPs, which is currently lacking in the literature. Furthermore, this may perhaps encourage the wider uptake of CHW-led DPPs and lead to the development of better programmes.

Supporting information

Acknowledgments

The authors are pleased to acknowledge Ms Lorraine Moses (LM) for her contribution to this review [checking the summary tables against the articles]. The electronic search was made possible by the South African Medical Research Council’s Online Library [databases].

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