Conceptualization of patient‐centered care in Latin America: A scoping review

Abstract Introduction Patient‐centered care (PCC) has been declared as a desirable goal for health care in Latin American countries, but a coherent definition of what exactly PCC entails for clinical practice is missing. This article's aim was to identify how PCC is conceptualized in Latin American countries. Methods Scientific databases (MEDLINE, EMBASE, PsycINFO, CINAHL, Scielo, Scopus, Web of Science) and webpages of the ministries of health were searched, and experts were contacted for suggestions of literature. References were included if they contained one of a range of a priori defined keywords related to PCC in the title, were published between 2006 and 2021, and were carried out in or concerned Latin America. Definitions of PCC were extracted from the included articles and analyzed using deductive and inductive coding. Deductive coding was based on the integrative model of patient‐centeredness, which unites the definitions of PCC in the international literature (mainly North America and Europe) and proposes 16 dimensions describing PCC. Results Thirty‐two articles were included in the analysis and about half of them were from Brazil. Numerous similarities were found between the integrative model of patient‐centeredness and the definitions of PCC given in the selected literature. The dimensions of the integrative model of patient‐centeredness that were least and most prominent in the literature were physical support and patient information, respectively. A differentiation between PCC and family‐centered care (FCC) was observed. Definitions of PCC and FCC as well as their cited references were diverse. Conclusion A considerable overlap between the conceptualization of PCC in Latin America and the integrative model of patient‐centeredness has been identified. However, there are substantial differences between countries in Latin America regarding the emphasis of research on PCC versus FCC and diverse conceptualizations of PCC and FCC exist. Patient Contribution This scoping review takes the patient's perspective based on the integrative model of patient‐centeredness. Due to the study being a review, no patients, neither caregivers, nor members of the public, were involved.


| INTRODUCTION
In an effort to improve population health, the global community has worked towards the development and advancement of health care systems around the world. 1 Health outcomes have globally improved, leading to an aging population over the past decades. An aging population brings about novel challenges to health care systems, for example, increasing prevalence of chronic noncommunicable diseases. 2 These developments were complemented by a retraction from the paternalistic approach to health care and the emergence of alternative concepts as patient-centered care (PCC). In a paternalistic health care setting, the health care professional (HCP) is an authority who applies objective criteria to determine the treatment plan and informs the patient about the chosen intervention. 3 PCC proposes a shift towards balanced power in the relationship between HCP and patient, towards patient empowerment, active participation of the patient in the health care process, as well as a focus on individual patient needs, values, and preferences. 4,5 Arguments in favor of PCC are of ethical, moral, and scientific nature. To treat all patients equally, respectfully, and recognize their autonomy are standards of medical ethics 6 and promoted by PCC. 5 It is emphasized that essentials to health care are, among others, cultural appropriateness, provision of information, recognition of individual circumstances and needs, and access to care without discrimination. 7 These standards are supposed to decrease inequalities in access to health care. Research suggests an association between aspects of PCC and positive patient outcomes, for example, health status, 8 treatment adherence, 9 costs, 10 health behavior, 11 social support, quality of medical decisions, 12 and self-rated health. 13 Thus, diverse lines of argumentation suggest PCC to be a desirable process and outcome in health care. Appendix S1) and has since been used in research on PCC, for example, in the development of a patient-reported experience measure of PCC 14 and came to close a gap in the international conceptualization of PCC. [15][16][17] Research on and implementation of PCC have not been uniform around the world. PCC has been widely described and investigated in the global north. 18 In contrast, in regions where accessibility to health care and social inequalities remain an issue, as in Latin America, 19 there has been comparably little research on PCC. The socioeconomic, political, and economic structures of Latin American countries are diverse. 20 After the end of colonialization, military dictatorships undermining human rights were implemented in many countries, which lead to socioeconomic and health inequalities in Latin America. 20 Social movements achieved the restatement of civilian rule in some countries. These political changes as well as economic growth were precursors for health system reforms that have been implemented in Latin American countries to achieve universal health coverage and decrease poverty over the past decades. 20 For example, in Chile, health system reforms have led to a health coverage of about 95%. 21 However, health systems in many Latin American countries constitute a mixture of the public and a private sector, which promotes health inequalities and could enhance the continuation of a paternalistic style in health care. 22 In 2018, a survey conducted by the Organization for Economic Co-operation and Development (OECD) indicated that the spread and degree of health care coverage are less uniform in 21 Latin American countries in comparison to other OECD countries. 23 With regard to PCC, in 2003, the Pan American Health Organization declared strategies to implement the principles of "equity, solidarity, and the right to the highest possible standard of health" in Latin American health care systems. 24 In line with this, access to care has successfully been improved in Mexico by the introduction of a program, which provides affordable health care to uninsured individuals. 25 Another example is Chile, where PCC has been declared as one of the fundamental principles of the health system in 2006. 26 Thus, health policymakers in Latin America have recognized the need for PCC and claimed the intention to establish PCC in routine care. [24][25][26] In 2016, the OECD implemented a Latin America and the Caribbean Network of Health Systems to "identify effective policies to ensure the financial sustainability of health systems" (OECD-LAC Regional Policy Networks).
Latin American research on PCC shows little coherence in the conceptualization of PCC. For example, Guanais et al. 13 conducted a secondary analysis of a public opinion survey on the health care system which had been conducted in six Latin American countries. They chose the following variables as being related to PCC for analysis: contact with primary care clinic (access), time spent with HCP, patient-HCP communication, technical quality and problem solving, and health care coordination. In contrast, in another analysis of patient-reported experience with health care in four Latin American countries, variables that were considered to be associated with PCC were easy access, coordinated care, good HCP-patient communication, provision of healthrelated information and education, and emotional support. 27 The difference between variables considered to be associated with PCC in the two studies represents variations in the conceptualization of PCC in Latin American research. Moreover, it is unclear how the concept of PCC has evolved in Latin America. As Scholl et al. 5 28 Patients reported a lack of opportunities for active participation in medical decision-making in primary care and a disbalance in the distribution of power between HCPs and patients. Moreover, patient satisfaction with public health care significantly decreased from 2010 to 2015. 29 In a survey carried out in six Latin American countries, more than 80% of participants indicated that their health care system required substantial changes. 30 One main issue recorded by these surveys was access to care, which is an aspect of PCC. One reason for the lack of implementation of PCC in practice could be that clear guidelines on how to put patients at the center of care and let them participate in decisionmaking are missing. 31 In line with that, Bravo et al. 32

| METHODS
To address the research question, a scoping review 33 was conducted following the framework of Peters et al. 33

| Search strategy
We developed a protocol following Peters et al. 33

| Eligibility criteria
In the initial search, we included articles that contained one of the following terms in the title and abstract: patient-centered, personcentered, family-centered (each with four spelling variations) and patient-focused (with two spelling variations). In addition, titles and abstracts of the records had to contain either the term Latin America or the name of one of the 27 Latin American countries. In addition to scientific articles, opinion articles, discussion articles, editorials, letters to the editor, statements, and books were included. There was no exclusion criterion regarding the study design or setting.
During the title-abstract screening, studies and other records were excluded if they had not been carried out in Latin America or did not discuss their major content in the context of a Latin American country. Records were excluded if they did not discuss the key term, upon which they had been included in the initial search, in the context of health care. In the full-text screening, records were only maintained, if they contained a definition of the key term.

| Study selection process
The identified records were imported into Endnote X9 34

| Data extraction
The following data were extracted using a data extraction sheet including country of publication, the description of the main concept, study design, data acquisition, sample characteristics, health setting, and the conclusion drawn by the respective paper regarding the main concept. As we suggest that one joint model of PCC based on international research is desirable, we used the integrative model by Scholl et al. 5

| Synthesis and analysis
To answer the research question of how the conceptualization of PCC in Latin America differs from the integrative model, the

| Main concepts
In the selected literature, PCC was discussed using diverse terms.
These terms were grouped into PCC and FCC categories, which will be referred to as main concepts in the following. In most articles (n = 22) the main concept was PCC. Twenty-four different terms were used to refer to this main concept. One article described PCC in the context of the Biomedical Model of Care. 59 FCC was the main concept of 10 articles and within these, four different terms were used to refer to FCC. For an overview of all the terms used to refer to the main concepts in the selected literature, see Table 1.  Table 2).

| Dimensions of the integrative model
In eight articles on FCC, the health context was either neonatal or pediatric care. In five of these articles, the covered dimensions of  Table 3). For detailed overviews of the included literature and the coding of the dimensions of the integrative model, see Supporting Information: Appendices S2 and S3.

| Novel aspects of patient-centeredness
In the literature on PCC, the following aspects were mentioned that are not explicitly covered by any dimension of the integrative model proposed by Scholl et al. 5 : "involvement of the local community," (2) "patient as a multidisciplinary health care team member," "acknowledgment of the family's potential." In the literature on FCC, the following aspects were mentioned that are not covered by any dimension of the integrative model: "family as a care unit," (9) "infrastructure to accommodate family members and to encourage their stay,"(2) "frequent reassessment of preferences as they may change over time." These novel aspects could be used to extend distinct dimensions of the integrative model. However, we refrain from considering them aspects of PCC specific to Latin America.
T A B L E 1 Main concept of the articles and their frequency (n = 32) are thematically ordered.

Main concept Count Main concept Count
Patient-centered/-centered care 9 Family-centered care 6 Associated terms (frequency if other than 1) Person-centered care ( Note: In one article (007) "patient-centredness" and "patient-centered care" were used interchangeably. In another article "patient-centered care" and "patient-centered orientation for health care" were used interchangeably. These two articles are thus represented twice in the table. In one article, "patient/family-centered care" was used, as reported in the table. In eight of the articles on family-centered care, the health context was either neonatal or pediatric care.
T A B L E 2 Number of articles (n = 32) that covered the dimensions of the integrative model of patient-centeredness ordered by frequency.

| Patient-centered care
The principles used in the definitions of PCC were dignity, respect, and participation. Autonomy and (co-)responsibility were repeatedly named as well. Integration of medical and nonmedical care 32 10 Teamwork and teambuilding 23 20 Access to care 64 30 Coordination and continuity of care  Physical support, teamwork and teambuilding, and integration of medical and nonmedical care were mentioned least. These results might reflect priorities but also the needs of the current health care systems • Patient-centered model involves a twosubject medicine model: the physician and patient.
• Improve the quality of the processes of care, reduce hospitalizations and emergency visits. • Improve users' satisfaction and selfmanagement. • Strengthen the doctor-patient relationship and make a realistic use of time and resources. • PCC can improve health care utilization, efficiency, quality of care, and patient satisfaction. • These attitudes and skills are, in fact, real tools that can help the person, through his own narrative, to reflect on his health-disease process.
• Family as the basic unit of care.
• Family as essential source of support and main focus of attention. • Autonomy.
• Family as the subject of care.
• Planning, delivering, and evaluating health care. • Listening between families.
• Opportunity for the family itself to define its own problems. • Reduce anxiety of family members.
• To reduce the stress that hospitalization.
• Give (to the family) some meaning to their own experience. An international scoping review suggested FCC to be a part of PCC with a stronger focus on patient and family values, preferences, and needs. 67 In contrast, our analysis showed differences between the concepts. Firstly, in the case of PCC, the focus was the patients themselves while the patient's family was referred to separately. The emphasis was placed on the co-responsibility of the patient, excluding other significant actors such as relatives. In the definition of FCC, the focus was on the family and a collaboration established between the family and health professionals. This can be explained by the fact that the literature associates FCC with caring for children, elderly, or ailing individuals (not able to consent), thus, with the need for collaboration between family and HCPs. 68 This focus can also be observed in the Latin American context. Secondly, we found differences in the activities and results of the two concepts. In PCC, the focus is on the encouragement of patients to take part in the decisions of their care, and the patients' satisfaction and selfmanagement. Contrary to PCC, for FCC the analysis showed that sharing information with the family is one of the most important activities aiming at the reduction of anxiety and stress of the family members, without necessarily enhancing an active involvement of the family members in the decision-making process.
This article has some limitations. Firstly, following the recommendations of Peters, 33 no quality appraisal of the included literature was conducted. However, there is literature arguing in favor of an assessment of quality in scoping reviews similarly to systematic reviews. 69  America. 13,27 Our study shows that research on PCC is limited to a few Latin American countries. A strategy to support research on PCC in multiple countries in Latin America could be transnational studies on PCC, involving researchers and data from more than one country.
The results also imply that future studies should clearly define the concept they aim to investigate. These strategies can foster the

DATA AVAILABILITY STATEMENT
All data generated during this study was included in this published article.