Step 2: problem analysis and local needs assessment
Six meetings were dedicated to this step. Following IM practices, the CAB’s analysis 1) incorporated multiple perspectives (e.g., research evidence, clinical experience, community knowledge) to understand the health problem; 2) balanced the needs and strengths of the population and setting; 3) used a multilevel ecological approach to identify barriers and facilitators of health; and 4) used logic models as an analytical tool. The following questions informed our analysis: What individual and/or environmental factors place Hispanic clients at high risk for cardiovascular diseases? What existing resources can be used to address these health problems? What cultural factors do we need to incorporate into the intervention to make it relevant for Hispanic clients? What adaptations are needed to help social workers deliver this intervention? Brainstorming activities and group discussions were used to answer these questions. For example, CAB members were given index cards to write down any factors they thought placed Hispanic clients at high risk for CVD. These cards were placed on a dry-erase board and organized along ecological levels to generate a discussion of how PCARE could address these factors. The research team then developed a logic model visually illustrating the CAB’s ideas. The logic model was presented to the CAB to generate further ideas (see Additional file
1).
The CAB also provided input to the design of the needs assessment conducted by the research team by reviewing recruitment materials, study procedures, and data collection instruments. CAB members were involved in the interpretation of needs assessment findings and co-authored a peer-reviewed publication [
22].
Results from these activities and the needs assessments indicated that the health problems of Hispanic clients at the local clinic mirror the medical needs of people with SMI with elevated rates of common chronic medical conditions. CAB members also talked about the importance of addressing language barriers when serving Hispanic clients by employing bilingual health-care managers and using culturally and linguistically appropriate patient education materials. Moreover, the needs assessment findings indicated that Hispanic clients at the local clinic tended to report low scores on the Patient Assessment of Chronic Illness Care scale which asses clients’ perspectives of the quality of chronic illness care received from primary care providers in the past 6 months [
24] and low scores on the patient activation measure [
23] and the chronic disease self-efficacy scale [
25]. These findings confirmed that Hispanic patients at our clinic would benefit from health-care manager interventions, like PCARE, since the core elements of this intervention focus on improving care coordination, goal setting, patient activation, and self-management behaviors [
22].
In contrast to the original sample used to test PCARE, which tended not to be connected to primary care and was subsequently connected to these services via the intervention, the majority of Hispanic clients at the local clinic had visited a primary care physician during the previous 12 months and were seen in 18 different primary care clinics ranging from large federally qualified health centers to small private doctors’ offices [
22]. This suggested that the care coordination efforts in our community were more complex and required adaptations to the care coordination tools specified in PCARE.
We also uncovered through our needs assessment that interpersonal aspects of care, such as the nature of the client-provider relationship, shaped Hispanic clients’ primary care experiences and revealed important insights about Hispanic clients’ preferences and values. Hispanic cultural norms like
personalismo (being warm and personable; showing that personal ties outweigh formal, institutional connections),
respeto (respect), and
dignidad (dignity), were valued by our Hispanic clients, linked to positive experiences with primary care and associated with higher scores in the clients’ assessments of the quality of chronic illness care, patient activation, and self-efficacy [
22]. We found that Hispanic clients valued providers who, during their visits, demonstrated these cultural norms by displaying a warm and genuine interest and familiarity about patients’ everyday lives beyond medical issues. These findings indicated that these distinct cultural norms should be integrated into the health-care manager intervention, particularly during the assessment and engagement phase, in order for health-care managers to demonstrate a welcoming, trusting, and respectful culturally compatible relationship with the clients. Overall, step 2 enabled the CAB to corroborate the need for a health-care manager intervention at our local clinic and helped identify key areas for intervention adaptations given unique cultural factors and local circumstances.
Step 4: development of intervention adaptations
Eight CAB meetings were dedicated to this step. The research team incorporated all the recommendations generated in step 3 into the intervention manual. In this step, the CAB reviewed, discussed, and refined these adaptations. The adaptations that emerged from step 3 and incorporated into the intervention in step 4 are summarized in Table
3 and are organized across two domains: cultural and provider adaptations.
Table 3
Summary of intervention adaptations
Cultural adaptations | | |
Health-care manager personnel | • Language is a critical barrier to care for many Hispanic clients with limited English proficiency. | • Use bilingual health-care managers to deliver the intervention. |
Client engagement and client health-care manager interactions | • Health-care manager interpersonal skills and interactions with clients need to reflect core cultural norms valued and preferred by Hispanic clients (e.g., personalismo, respeto, dignidad) in order to engender their trust and enhance their engagement. | • Added a section to the intervention manual discussing the importance and rationale for incorporating these cultural norms into health-care manager interpersonal skills and interactions with clients. |
• Added examples in the intervention manual of the type of health-care manager behaviors that demonstrate and reflect each of these cultural norms in their interactions with clients. |
Assessment | • Health-care manager assessments need to include the systematic collection of cultural information that can be used to understand Hispanic clients’ perspectives of their health problems, past and present help-seeking, and self-management behaviors, fears, and preferences for care. | • Added the DSM-5 Cultural Formulation Interview adapted for health problems to the assessment protocol used in the initial health-care manager sessions. |
Clients’ health education materials | • Client education materials need to be available in English and Spanish and include formats that are relatable, engaging, and relevant to a Hispanic audience. | • Added clients’ health education materials available in Spanish from national organizations (American Diabetes Association, American Heart Association) and health- related fotonovelas. |
Clients’ activation | • Lack of knowledge and awareness are critical barriers that negatively impact Hispanic clients’ involvement in their own health care and in self-management behaviors of their health conditions. | • Added the personal health record (PHR) as a client education and activation tool and to help facilitate the sharing of medical information between clients and their primary care and mental health providers. |
• Cultural norms associated with deference to authority figures can negatively impact Hispanic clients’ involvement in their medical visits and contribute to clients taking a passive stance toward their primary care physicians. | • Included a client activation checklist to the PHR to help clients’ prepare for their visits with their primary care doctors and be more active during these visits. |
• The multiple stresses and demands that Hispanic clients face in their everyday lives can be overwhelming and create serious barriers for coping and managing their health conditions | • Added a problem solving module to enhance clients’ problem solving skills to cope with their health issues. |
Provider adaptations | | |
Preventive care tracking tool | • Social workers may lack basic medical knowledge about preventive primary and cardiovascular care guidelines for adults, and how to interpret basic lab values for cardiometabolic indicators. | • Modified the preventive care tracking tool by adding basic medical information to facilitate the tracking, interpretation, and coordination of preventive primary care services and cardiovascular care. |
Care coordination plan | • Care coordination at our local clinic is more complex than in the original PCARE trial given that our clients receive primary care services from multiple primary care clinics in the community. | • Added a care coordination plan to assist health-care managers tackle the local complexities of coordinating care with multiple doctors and community clinics |
• The plan focuses on developing clear lines of communication to share information about clients’ care and reduce care coordination barriers. |
Training curriculum | • Since the original PCARE was delivered by RNs, a training curriculum was needed for our new provider group (social workers) | • A training curriculum consisting of four 3 hour sessions was developed for social workers. It included didactic modules, review and discussion of the program’s manual, role playing activities to practice core health-care managers skills, learning how to read and interpret lab results for cardiometabolic indicators (e.g., lipid panel), and learning how to take simple anthropometric measurements (e.g., weight, blood pressure, waist circumference). |
Cultural adaptations focused on addressing language barriers, increasing patient engagement, systematically assessing cultural factors that can influence Hispanic clients’ health-care experiences and enhancing clients’ health knowledge, activation, and problem solving skills. Based on the needs assessment findings, it was deemed essential to use bilingual health-care managers to reduce language barriers. Health-care manager relationship and interactions with the clients also needed to reflect core cultural norms (e.g., personalismo, respeto) associated with positive primary care experiences and valued by Hispanic clients. A section was added to the intervention manual that defined these cultural norms and provided examples of techniques health-care managers can use to reflect these cultural norms in their interactions with the clients. For example, health-care managers are instructed to show respeto (respect) by addressing clients during their first visit by their last name, use terms as Señor/ra, and start each session by making polite conversation or platica before delving into session activities in order to create a welcoming and warm environment.
Systematically assessing cultural factors during the initial assessment was also deemed critical as it helps increase the validity of the health-care managers’ assessments. The intent of this adaptation was to augment the existing assessment tool with a standardized set of questions that the health-care manager can use to explore clients’ explanatory models of their health conditions, coping strategies, past and present help-seeking attempts, and presence or absence of social supports, fears, and preferences for care. We used an adapted version of the core Cultural Formulation Interview (CFI) developed for the DSM-5 to systematically assess these cultural factors [
26].
The core CFI is a semi-structured interview composed of 16 questions that follows a person-centered approach to explore how cultural issues impact a person’s clinical presentation and care [
26]. The CFI emphasizes four main assessment domains: 1) cultural definition of the health problem, 2) cultural perceptions of cause, context, and support, 3) cultural factors affecting self-coping and past help-seeking, and 4) cultural factors affecting current help-seeking. Our adapted version of the CFI, the Cultural Formulation Interview for Health (CFI-H), uses the same structure and questions as the original CFI, but focuses on the client’s physical health problems and the social context that surrounds these health issues.
Low health literacy was also seen as a critical barrier for helping Hispanic clients manage their health conditions. CAB’s discussions led to the recommendation that clients’ health education materials be available in English and Spanish, included simple language (e.g., 4th to 6th grade reading level) and visuals (e.g., photographs, colorful graphics) to facilitate Hispanic clients’ comprehension and use of these materials. The CAB recommended that educational materials include formats that are relatable, engaging, and relevant to Hispanic audiences. To this end, we added education materials from national organizations (e.g., American Heart Association) available in English and Spanish and health-related
fotonovelas to our health education tools.
Fotonovelas are popular health education tools that use posed photographs or drawings, captions, and soap opera narratives to engage audiences and raise knowledge and awareness about health issues [
27].
Cultural adaptations to client activation activities focus on increasing the clients’ knowledge and access to their health information and help counteract cultural norms associated with deference to authority figures, particularly when visiting primary care doctors. This was seen as a critical step since some Hispanic clients with SMI tend to ascribe to social norms dictating that people should respect and not overtly question authority figures (e.g., doctors) in order to preserve social equanimity during these interactions and avoid being perceived as difficult clients [
28]. Then, after the medical encounter, the clients exert their autonomy by deciding whether or not to follow their doctors’ treatment recommendations without disclosing their decisions with their clinicians. This external deference to authority can undermine the clients’ involvement in their own medical care by not asking questions or expressing their concerns about their medical conditions or treatments. This passivity during the medical encounter can be misinterpreted by clinicians as demonstrating that the client understands all instructions and is in full agreement with all treatment decisions which can then frustrate clinicians when the client does not adhere to treatment recommendations at later visits.
To address these barriers, the personal health record (PHR) was added to the intervention. PHR is a patient-centered communication and patient activation tool that helps the clients manage transitions between health-care settings and facilitate continuity of care [
29]. As a communication tool, the PHR is used to share critical health information relevant to the client’s chronic conditions and CVD risk factors with different providers. As an activation tool, it enhances the clients’ self-management skills by having them review and track health information and prepare for visits and discussions with providers. The PHR is a living document that the health-care manager and client regularly update. The components of the PHR used in our intervention included the following: contact information of the health-care manager, primary care physician, and mental health provider; a list of the client’s health and mental health conditions; an up-to-date list of the client’s medications; information on client’s CVD risk factors (e.g., cholesterol levels); an activation checklist composed of simple tasks and instructions to help the client prepare for a medical visit (e.g., bring a list of your medications to your medical visits); a list of questions the client could ask his/her primary care doctor (e.g., what are the side effects of my medications?); and a section where the client can write questions to ask the primary care doctor.
Lastly, the CAB recommended enhancing the clients’ problem solving skills given their observations that Hispanic clients often felt overwhelmed coping with their health issues because of the multiple stresses and barriers (e.g., financial strain, family problems). Problem solving is a core self-management skill for people living with chronic medical conditions and a central element of self-management programs [
30]. To this end, we added a problem solving module that included a worksheet the health-care managers could use with their clients to apply problem-solving steps and techniques to a particular health-related problem.
Provider adaptations focused on facilitating social workers’ delivery of the intervention by modifying the preventive primary care tracking tool, developing a local care coordination plan, and developing a training curriculum for social workers. Social workers may lack basic medical knowledge about preventive primary care and cardiovascular care guidelines for adults and may not know how to interpret lab values for common cardio-metabolic indicators (e.g., lipid panels). To address these issues, the CAB modified the original PCARE preventive primary care tool by adding simple explanations for each guideline, including normal ranges for lab values, when indicators should be tracked (e.g., annually) and instructions the health-care manager can follow when a guideline is not met or a lab value is above the normal threshold follow (e.g., alert client’s primary care provider).
Since the care coordination at our local clinic was found to be more complex than in the original PCARE trial, we added a local tool to the intervention that health-care managers could use to plan, organize, and facilitate their care coordination activities. This care coordination planning tool focused on enabling the health-care manager to clearly define and establish lines of communication with the clients’ primary care and mental health providers based on the providers’ preferences for sharing information.
Lastly, a training curriculum for social workers was developed to expand the use of this health-care manager intervention to this provider group. The training curriculum focused on helping social workers increase their knowledge and skills in taking on this new role and enable them to practice and receive feedback from trainers to build their confidence in delivering this intervention. The training curriculum delivered by the research team consists of four 3-h sessions that include didactic modules, review and discussion of the intervention’s manual, role playing activities with constructive performance feedback, and discussion groups.