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.

[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.

Co-production in coping with care dependency in Germany: How can integrated local care centres contribute?

In Germany, most care dependent people are looked after by family members at home. Professional support can help ease the burden of caring relatives and stabilise home care. Ideally, care then is provided through the co-production of formal and informal caregivers. This article analyses how care dependent people and their family caregivers integrate professional support into their care arrangements. An analysis was conducted using data collected for a qualitative study evaluating integrated local care centres in North-Rhine-Westphalia, Germany. The study is based on episodic interviews with users of these care centres and their family caregivers (N = 26). During the analysis, three interpretive and practice patterns relating to co-production of care were identified. These patterns reveal how the interviewees deal with (increasing) needs for assistance and care while incorporating professional care into their lives. The patterns help differentiate whether the interviewees (a) use developed care skills to contribute actively to the co-production with their layman knowledge, or (b) seek relief of their care responsibilities and withdraw temporarily from the direct sphere of care applying freed capacities to organise family daily life, or (c) use the services of the care centres to meet with other older people and to develop spaces for mutual help and co-production. The interpretive and practice patterns thus differ in the extent to which care users and family caregivers continue to play an 'active role' in the care process and contribute their own knowledge, ideas, expectations and particular care activities. In order to achieve a functioning co-production, professionals face the challenge of understanding these patterns that have been established over many years and of taking them into account appropriately.

Between Social Inclusion and Exclusion: Integration of Daycare Guests in the Nursing Home Setting.

BACKGROUND AND OBJECTIVES: In integrated daycare, community-dwelling older people in need of care join existing groups in residential care facilities during the day. This study focuses on how nursing home residents experience the integrative care approach, exploring opportunities for social inclusion and mechanisms of exclusion. RESEARCH DESIGN AND METHODS: A purposive sample of residents differing in cognitive capacity and level of (non)conflictual interaction with daycare guests was selected. Episodic interviews with residents (N = 10) and close relatives (N = 2) were conducted in 3 pilot facilities in Germany and analyzed using thematic coding. RESULTS: The analysis revealed different orientation patterns towards the presence of daycare guests: respondents (a) demonstrated indifference to the daycare guests, (b) saw bonding with guests as a means to connect to the outside world, and (c) perceived incompatibility between in-group and out-group. Criticisms included disruption of daily routines and loss of privacy. Most interviewees came to terms with the care situation using rational and moral arguments. DISCUSSION AND IMPLICATIONS: The study reveals the importance of residents' participation when integrating daycare guests. Institutional procedures are required to prevent exclusion of daycare guests and avoid overtaxing residents.

[Prospects and constraints of nursing home-based integrated adult day care : Viewpoints of experts]. / Möglichkeiten und Grenzen integrierter Tagespflege in Pflegeheimen : Sichtweisen von ExpertInnen.

BACKGROUND: Even when they are in need of care, old people prefer to stay in their community. An appropriate design of nonresidential and residential care services close to people's home is crucial for supporting them. In the model project "Pflege stationär-Weiterdenken!" (Nursing home care-think ahead!) nursing homes offer extended services to old people in the community. This includes integrated day care (ITP), which entails day guests spending the day with residents of the facilities. This article examines the opportunities and challenges arising when designing and implementing this type of cross-sectoral care model. METHOD: Guided interviews were carried out with 20 experts who were either professionals working at the model institutions or involved in the project at the planning and cooperation levels. The data collected were evaluated using thematic coding. RESULTS: The opportunities and challenges lie at two levels. (1) At the institutional level advantages are greater individual and flexible timeframes of usage and better accessibility of day care for care-dependent people through the integration into residential care settings. The challenges involve administrative and management issues as well as apprehensions among the employees concerning the increased workload. (2) At the level of interaction and social integration experts emphasized the importance of making allowances for the interests and needs of day guests and residents. Furthermore, they confirmed that if this is achieved then integrated day care can improve the social participation of both user groups. CONCLUSION: From the experts' point of view, the ITP holds the potential for cross-sectoral care for old people in need of care close to their homes. A final assessment will require further analysis, especially on users' views.

[Representations of Care of Migrants from the former Soviet Union with Alcohol or Drug Problems in Germany]. / Versorgungsvorstellungen von Migranten aus der früheren Sowjetunion mit Alkohol- oder Drogenproblemen in Deutschland.

OBJECTIVE: Which representations of care can be found in migrants with alcohol or drug problems from the former Soviet Union? How do they correspond with views in the care system? METHODS: Episodic interviews with 46 migrants, expert interviews with 33 service providers; analysis with thematic coding. RESULTS: For migrants and experts holistic care is important, which include spiritual-religious components but are also control-oriented. CONCLUSION: The cultural specificity of migrants' care representations should be acknowledged by the health care system much more.

"And mostly they have a need for sleeping pills": physicians' views on treatment of sleep disorders with drugs in nursing homes.

The percentage of nursing home residents treated with hypnotic medications is high, as many authors report, despite the fact that such medications are almost always associated with undesirable effects for old people. This article takes a closer look at nursing home physicians' views of prescriptions when treating sleep disorders of nursing home residents. How do physicians characterize the treatment strategy for residents suffering from sleep disorders? How do they balance the benefits and risks of the hypnotic medication? Under what circumstances do they accept negative consequences? To answer these questions, N=20 physicians (aged 36 to 68 years) in 16 nursing homes in a German city were interviewed. The physicians were either employed by nursing homes or worked on a contract basis. Comparative categorization of the data produced a typology across cases. Three interpretative patterns concerning the use of drugs for treating sleep disorders were identified--"by request," "ambivalence," and "reflected prescription." Differences between them were determined by the significance of residents' wishes, neglect of risks, particularly that of addiction, and the attempt to balance benefits and disadvantages. The study showed deficits in professional management of sleep disorders in nursing homes.

Sleep disorders and activities in long term care facilities--a vicious cycle?

Sleep disorders are symptoms of many diseases. Persons suffering from multiple morbidities are affected most. We investigated the relationship between sleep and activities using assessment data of 2577 German nursing home residents. In total, 37.3 percent were affected by insomnia, 29.6 percent by non-restful sleep. We used SEM to analyze the relationship between sleep disorders and activities. Residents with sleep problems exhibited low levels of activities and social engagement and high levels of communication impairment and interpersonal conflicts. They received less activation than persons without sleep disorders. We found significant evidence that sleep disturbances and lack of activities influence each other negatively.

'When they sleep, they sleep': daytime activities and sleep disorders in nursing homes.

Are nurses aware that activities can reduce residents' daytime sleepiness and increase sleep quality at night in nursing homes? This question is studied in a project focusing on sleep disorders and multi-morbidity in long-term care. In Germany, episodic interviews with 32 nursing staff members (age 24-60 years) with different qualifications addressed their views on links between residents' daytime structure and activities and their sleep/disorders. Three interpretive and activity patterns (intervention; missed opportunity; ignorance) were found, which differ in relation to how far the interviewees motivate residents' activity. Implications for a training program based on these different premises are discussed.

Idealization and neglect: health concepts of homeless adolescents.

How do homeless adolescents think of health and perceive their own health status? Episodic interviews with (N = 24) homeless adolescents (age 14-20 years) in Germany addressed several aspects of the adolescents' representations of health: their definitions and experiences of health and links between both. Results show the meaning of health for participants in street life. Patterns of perceiving the relevance of health and of possible influences on it reveal a tension between idealizing and neglecting health. A similar tension characterizes how the adolescents refer to their way from family to street life. Conclusions for health promotion for this target group are drawn.