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

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.

"Talking on the Phone Is Very Cold"-Primary Health Care Nurses' Approach to Enabling Patient Participation in the Context of Chronic Diseases during the COVID-19 Pandemic.

Strengthening patient participation is considered a crucial element of primary health care (PHC) nurses' practice when working with chronically ill patients. The COVID-19 pandemic had extraordinary effects on PHC nursing routines and how chronically ill patients' could be involved in their own care. This study investigates the adaptation of Spanish PHC nurses' approaches to supporting the participation of patients living with chronic illness during the COVID-19 pandemic. To reach this goal, we interviewed 13 PHC nurses who practiced in PHC centers in Spain. The interviews were analyzed using thematic coding. Three themes emerged from the descriptions of the nurses: (1) High COVID-19-related workload, decreasing health promotion, and chronic care, (2) Emphasis on patients' and families' self-responsibility, (3) Expanded digital and telephone communication with fewer in-person consultations. Nurses felt especially challenged to uphold the support for vulnerable groups, such as older people or patients without family support. Future research should focus on how the participation of the most vulnerable chronic patients can be supported in the context of the growing relevance of remote care.

How do nurses support chronically ill clients' participation and self-management in primary care? A cross-country qualitative study.

BACKGROUND: In the context of the advancement of person-centered care models, the promotion of the participation of patients with chronic illness and complex care needs in the management of their care (self-management) is increasingly seen as a responsibility of primary care nurses. It is emphasized that nurses should consider the psychosocial dimensions of chronic illness and the client's lifeworld. Little is known about how nurses shape this task in practice. METHODS: The aim of this analysis is to examine how primary care nurses understand and shape the participation of patients with chronic illness and complex care needs regarding the promotion of self-management. Guided interviews were conducted with nurses practicing in primary care and key informants in Germany, Spain, and Brazil with a subsequent cross-case evaluation. Interpretive and practice patterns were identified based on Grounded Theory. RESULTS: Two interpretive and practice patterns were identified: (1) Giving clients orientation in dealing with chronic diseases and (2) supporting the integration of illness in clients' everyday lives. Nurses in the first pattern consider it their most important task to provide guidance toward health-promoting behavior and disease-related decision-making by giving patients comprehensive information. Interview partners emphasize client autonomy, but rarely consider the limitations chronic disease imposes on patients' everyday lives. Alternatively, nurses in the second pattern regard clients as cooperation partners. They seek to familiarize themselves with their clients' social environments and habits to give recommendations for dealing with the disease that are as close to the client's lifeworld as possible. Nurses' recommendations seek to enable patients and their families to lead a largely 'normal life' despite chronic illness. While interview partners in Brazil or Spain point predominantly to clients' socio-economic disadvantages as a challenge to promoting client participation in primary health care, interview partners in Germany maintain that clients' high disease burden represents the chief barrier to self-management. CONCLUSIONS: Nurses in practice should be sensitive to client's lifeworlds, as well as to challenges that arise as they attempt to strengthen clients' participation in care and self-management. Regular communication between clients, nurses, and further professionals should constitute a fundamental feature of person-centered primary care models.

Primary healthcare nurses' involvement in patient and community participation in the context of chronic diseases: An integrative review.

BACKGROUND: Primary healthcare nurses' potential to enable patient and community participation has been increasingly acknowledged. A conceptual understanding of their contributions within a broad range of participation processes is still lacking. AIMS: The aims of this study were to develop a conceptual framework that provides information on the role of primary healthcare nurses in shaping participation processes with patients and communities in the context of chronic diseases and to identify conditions that enable or hinder the promotion of patient and community participation by nurses. DESIGN: An integrative review was conducted. DATA SOURCES: Twenty-three articles published from 2000 to 2019 were included in the analysis: 19 retrieved from PubMed and CHINAL and 4 added through other sources. REVIEW METHODS: An inductive data analysis and quality appraisal of studies were conducted. RESULTS: The analysis reveals four areas where nurses are involved in facilitating patient and community participation: (1) sharing understanding of health problems and needs, (2) developing resources and facilitating patient education for self-management, (3) raising patients' voices as an advocate in service development and (4) supporting individual and community networks. The conditions affecting nurses' engagement in fostering participation processes are as follows: (1) care priorities and overall workload, (2) nurses' attitudes towards participation and (3) users' acceptance of nurses as partners. CONCLUSIONS: Future research can use the framework as a basis for empirical studies investigating nurses' involvement in pursuing patient and community participation. Interventions should focus less on indirect forms of participation, like patient education or advocacy, but should also focus on active forms of participation. Research is needed on nurses' involvement in community participation processes. IMPACT: This framework can be used and adapted in future research on patient and community participation in primary healthcare. It describes areas of participation and the facilitators and barriers within the broad range of activities of primary healthcare nurses.

[Information needs of family caregivers regarding new technologies for dementia care at home: A qualitative study]. / Informationsbedürfnisse pflegender Angehöriger zu neuen Technologien der häuslichen Versorgung bei Demenz.

Information needs of family caregivers regarding new technologies for dementia care at home: A qualitative study Abstract. Background: New technologies can support family caregivers in the home care of people with dementia but are unknown to many. To reduce the information deficit, the information needed by caregivers must be determined. Aim: The aim of this study is to investigate the information needs of family caregivers regarding new technologies for dementia care at home, taking into account experiences in past research and future information needs. Methods: Episodic interviews were conducted with eight family caregivers of people with dementia and analyzed according to thematic coding. Results: Caregivers used both media-based and interpersonal channels for technology-related research and made heterogeneous experiences. The researched information content and causes of research varied across respondents. The amount of available online information was a barrier in some cases. With regard to future information needs, the diversity of information channels and the quality of information are of high importance. Conclusions: The individual situation-specific needs of family caregivers must be taken into account in the development of new information and counseling services so that information deficits can be eliminated, and the potential of new technologies can be exploited in the home care of people with dementia. Further research is needed on the information needs of people with dementia.

[From nursing home to community-oriented center for health and long-term care : Continuity of care as reflected in an expanded range of services]. / Vom Heim zum Zentrum für Pflege und Gesundheit im Quartier : Versorgungskontinuität im Spiegel eines erweiterten Angebotsspektrums.

BACKGROUND: Opening nursing homes for and in the community not only promotes the inclusion of the residents. Likewise, older people living close to the homes could benefit if the nursing homes offer support for them as well. This article focuses on the extent to which "nursing homes" succeed in contributing to the continuity of care for older people in the community by developing into "centers". METHODS: Episodic interviews with users/relatives and expert interviews were conducted as part of the evaluation of the project "Long-term care institutions - further thinking!". A secondary analysis of interviews was conducted by means of structuring content analysis; the views of users and experts were triangulated on a metalevel. RESULTS: Users and relatives refer to three types of continuity of care in the facilities-management, relational and informational. In this respect, sustainable relationships with professionals in the facilities are just as important to them as "custom fitted" care offers even in the case of intensified need for support. Some family caregivers desire a more reliable flow of information between them and the professionals. It is also important for the experts interviewed that the facilities cover the entire spectrum of continuity of care; however, they underestimate the need of relatives in particular to be involved in care as informal carers. CONCLUSION: Nursing homes can contribute to strengthening continuity of care in the community by expanding their range of services. They should take the diversity of different user groups into account.