Barriers to and enablers of the promotion of patient and family participation in primary healthcare nursing in Brazil, Germany and Spain: A qualitative study

Abstract Background Most health systems are insufficiently prepared to promote the participation of chronically ill patients in their care. Strong primary health care (PHC) strengthens patients' resources and thus promotes their participation. The tasks of providing continuous care to people with chronic diseases and promoting self‐management are the responsibility of PHC nurses. Recent research assessing enablers of or barriers to nurses' efforts to support patients' participation has mostly not considered the special situation of patients with chronic diseases or focused on the PHC setting. Objective To investigate enablers of and barriers to PHC nurses' efforts to promote the participation of chronically ill patients in their care. Methods We interviewed 34 practicing PHC nurses and 23 key informants with advanced knowledge of PHC nursing practice in Brazil, Germany and Spain. The data was analyzed using thematic coding. Results We identified four categories of barriers and enablers. (1) Establishing bonds with patients: Interviewees emphasized that understanding patients' views and behaviours is important for PHC nurses. (2) Cooperation with relatives and families: Good relationships with families are fundamental, however conflicts within families could challenge PHC nurses efforts to strengthen participation. (3) Communication and cooperation within PHC teams: PHC nurses see Cooperative team structures as a potential enabler, while the dominance of a ‘biomedical’ approach to patient care is seen as a barrier. (4) Work environment: Interviewees agreed that increased workload is a barrier to patient participation. Discussion and Conclusions Supporting patient participation should be acknowledged as an important responsibility for nurses by general practitioners and PHC planners. PHC nurses should be trained in communicative competence when discussing participation with chronically ill patients. Interprofessional education could strengthen other professionals' understanding of patient participation as a nursing task. Patient or Public Contribution This study is part of a research project associated with the research network ‘forges: User‐oriented care: Promotion of health in the context of chronic diseases and care dependency’. The study's focus and provisional results were discussed continuously with partners in health and social care practice and presented to and discussed with the public at two conferences in which patient representatives, professionals and researchers participated.


Key informants & Practicing nurses:
At the beginning could you please introduce yourself?What is your education?What is your occupational position and what are your current tasks.

Tasks of family and community nurses; task division and collaboration with doctors (other health professionals) in chronic care
2. Could you give me an overview on the main tasks of the nurses in in your facility (Ger)?/Your health centre(s) (Esp)/In your familiy health team(s) (Bra) a) Key informants: Could you tell me more in detail?Which tasks do the nurses in your facility/health centre(s)/your family health team(s) assume in the area of health promotion?Could you describe a -in your view -typical nursing activity in health promotion, that illustrates how the nurses act?Individual participation of people with chronic diseases and their families in the care as a responsibility for nurses

Key informants:
Now I would like to focus on the nurses' practices to involve people with chronic diseases and their families in the care.

Practicing nurses:
Now I would like to ask you questions about how you involve people with chronic diseases and their families in their care.
Bielefeld University, School of Public Health, Dpt. 6 Health Services Research and Nursing Science Project: förges Q: Promotion of health through the life-course − meanings in the context of useroriented care models 4. Key informants: How do nurses in your health centre(s)/family health team(s) strengthen the competencies of patients so that they can better deal with their own illness?Can you please tell me about such approaches?
Practicing nurses: How do you strengthen the competencies of your patients so that they can better deal with their own illness?Can you please tell me about such approaches?

Key informants:
When you think of the everyday life of chronically ill people: How do nurses make it easier for people to live with their illness in everyday life?Can you give me a case example?Practicing nurses: When you think of the everyday life of your chronically ill patients/users: How do you make it easier for your patients/clients to live with the illness in everyday life?Can you give me a case example?
6. Key informants: How/in which way do nurses involve patients in decisions regarding their own care?Could you tell me that by using an example or a situation?Practicing nurses: How/in which way do you involve patients/users in decisions regarding their own care?Could you tell me that by using an example or a situation?

Key informants:
Are there also situations where the "freedom" of patients to co-decide on their care reaches its limits?Can you tell me about such a situation?Practicing nurses: Are there also situations where the "freedom" of your patients to co-decide on their care reaches its limits?Can you tell me about such a situation?

Promotion of participation in groups and participation of communities as a responsibility of nurses
We are also interested in whether and how you work with patient/user groups and with communities.
12. Thank you very much for your attention and for the interesting interview, I have asked all my questions.Is there something that you would like to add?
Compared to other health centres, do the nurses in your facility/health centre(s)/family health team(s) here assume special or other tasks in the care for chronically ill patients?What are these tasks?
Could you tell me more in detail: Which tasks do you assume in the care of chronically ill patients/users?Could you tell me a case example of a chronically ill patient that -in your view -shows which tasks you typically perform in the care of chronically ill patients?Bielefeld University, School of Public Health, Dpt. 6 Health Services Research and Nursing Science Project: förges Q: Promotion of health through the life-course − meanings in the context of useroriented care models c) Key informants: b) Key informants:In your opinion, what is going well in the collaboration between doctors and nurses in the care for chronically ill patients?And vice versa: What could be better in this collaboration?(Canyou tell me a situation so that I can imagine it better) Practicing nurses:In your opinion, what is going well in the collaboration with the doctor(s) in the care for chronically ill patients?And vice versa: What could be better in this collaboration?(Can you tell me a situation so that I can imagine it better) If you think of different population groups, e.g., different age groups, social classes, people with certain chronic diseases: Do you see any differences in whether and how these different groups can be or want to be involved in their care?Do the nurses who work here attend training or education or do they receive supervision that helps them to involve patients and relatives in their care?What are they and what do they contain?Practicing Nurses: Do or did you attend training or education, or do you receive supervision that helps you to involve patients and relatives in their care?If so, could you tell me more on what they contain?
8. Key informants:How do nurses cooperate with family members of chronically ill people?Can you tell me a case example?Is there anything that makes it easier or more difficult for nurses to involve family members?Practicing nurses: How do you cooperate with family members of your chronically ill patients?Can you tell me a case example?Is there anything that makes it easier or more difficult for you to involve family members?9. Key informants & practicing nurses: (Afterthought: What are other working conditions that facilitate user participation in their care) (Examples: time/workload) Practicing nurses: In your experience, what working conditions in your facility/health center(s)/family health team Bielefeld University, School of Public Health, Dpt. 6 Health Services Research and Nursing Science Project: förges Q: Promotion of health through the life-course − meanings in the context of user- In the work with patient/user groups, how do nurses strengthen the participation of the people in the group?In case of a possible 'misunderstanding' of IP: Let me better explicate the form of participation that I mean: How can nurses promote the active engagement of the people during the group meetings, for example that the group members share their experiences in the group) In the work with patient groups, how do you strengthen the participation of the people in the group?In case of a possible 'misunderstanding' of IP: Let me better explicate the form of participation that I mean: How promote you the active engagement of the people during the group meetings, for example that the group members share their experiences in the group Bielefeld University, School of Public Health, Dpt. 6 Health Services Research and Nursing Science Project: förges Q: Promotion of health through the life-course − meanings in the context of useroriented care models b.Key informants:Could you tell me about difficulties that nurses face when they would like to promote participation of patient/users during the group meetings?Do you work in other community settings, e.g. in schools, youth centres, senior centres, and others?If so, in which way do you promote the participation of citizens in community health issues?(Couldyougive an example?)14.Key Informants:In your facility, health centre(s)/family health team(s), are there further projects or initiatives that have the objective to identify needs or problems of the community, where the nurses participate?Could you tell me more about that?Overall, which are the most important conditions to strengthen the nurses to practically implement a greater participation of the users?Practicing nurses: Overall, which are the most important conditions that strengthen you in your daily work to practically implement a greater participation of the users?Bielefeld University, School of Public Health, Dpt. 6 Health Services Research and Nursing Science Project: förges Q: Promotion of health through the life-course − meanings in the context of useroriented care models 17.Key informant interviews: And vice versa: Which conditions hinder the nurses to practically implement a greater participation of the users?Practicing nurses: And vice versa: Which conditions hinder you to practically implement a greater participation of the users?
Key Informant interviews: Do the nurses in your facility/health centre(s)/family health team(s) work with patient/user groups?Which groups exist and what are the tasks of the nurses there?Practicing nurses: Do you work with patient/user groups?Which groups are that and what are your tasks when you work with these groups?a. Key informants: If question 12 "yes":