Integrating shared decision-making, expressing preferences and active participation of older adults in primary care nursing: a systematic review of qualitative studies and qualitative meta-synthesis.

OBJECTIVES: To systematically synthesise the results of primary qualitative studies on how community-dwelling older adults experience shared decision-making processes, express preferences and actively participate in care. DESIGN: Systematic review of qualitative studies and qualitative meta-synthesis. METHODS: We focused on studies about community-dwelling participants aged ≥65 undergoing a health-disease process circumscribed to a primary healthcare setting, and the central theme should focus on either shared decision-making, expressing preferences or patient participation. We searched the following databases: MEDLINE, CINAHL, Web of Science, Scopus and PsycINFO (time publication frame 2012-2022). We excluded studies in those cases where the qualitative results were not analysed or unrelated to the phenomenon addressed, phenomena were not clear enough to be included or the setting did not occur in the community. RESULTS: A total of 12 studies were included in this meta-synthesis. We appraised the quality of the selected studies through Critical Appraisal Skills Programme (CASP) Checklist. The metasummary comprised the frequency and intensity of qualitative patterns across the included studies. The meta-synthesis revealed four influential elements in their interaction: recognising personal qualities, facing professional characteristics, experiences of discrimination and a double-edged context. CONCLUSIONS: The phenomena studied were influenced by how older people approached their role in their binomial relationship with healthcare professionals. Those with a reinforced self-concept were better aware of health-disease-related situations regarding shared decision-making and the importance of being communicatively assertive. Professional characteristics were also crucial in how older people modulated their acting ability through their personality, communication skills and the approach healthcare professionals used towards older adults. Situations of discrimination generated through an imbalance of power inhibited the expression of preferences and hindered the active participation of older people. The context surrounding the participants influenced all these situations, key in tipping the balance between a therapeutic and a harmful side. PROSPERO REGISTRATION NUMBER: CRD42022363515.

Analysing Power Relations among Older Norwegian Patients and Spanish Migrant Nurses in Home Nursing Care: A Critical Discourse Analysis Approach from a Transcultural Perspective.

Power relations in care are the link between patients and nurses regarding communication and the ability to act in this context. It can be affected when there is cultural interference between members, putting mutual understanding at risk in healthcare situations. This study analyses power relations in healthcare situations between older Norwegian patients and Spanish migrant nurses regarding active listening, shared decision-making, and patient participation. We performed a hermeneutical study endorsed in critical discourse studies framework from a transcultural perspective. A purposive sampling included older Norwegian patients living alone and Spanish migrant nurses working in Norway. Eleven face-to-face semi-structured interviews were conducted with older patients and four via videoconference with migrant nurses. The analysis followed hermeneutic considerations by Crist and Tanner, and linguistic analysis was performed. Shared decision-making and active listening situations sometimes showed a power imbalance that negatively influenced older Norwegian patients. However, Spanish migrant nurses were also conditioned by care organising institutions. This power triangle negatively affected the relationship between the older patients and migrant nurses, resulting in a lack of communication, personnel, time and trust. The migratory experience influenced the care provided by Spanish migrant nurses, shaping a series of cultural competencies acquired through the migratory process.

"With your age, what do you expect?": Ageism and healthcare of older adults in Spain.

INTRODUCTION: Ageism could influence the relationship between older patients' meeting needs and healthcare professionals' answers. AIMS: To highlight the experience of older adults with healthcare systems, how they perceive ageism from their healthcare providers, and to explore the relationship between perceived ageism and self-perception of aging (SPA). METHODS: We conducted an exploratory qualitative study. The participants were 14 women over 65 who lived alone in their homes. RESULTS: Professional responses ignored the expression of preferences of the older patients and excluded them from decision-making processes. These answers influenced older patients' use of health services. Moreover, the negative aspects predominated in a SPA influenced by the internalization of stereotypes and a relationship weighed down by ageist behaviors on the part of health professionals. CONCLUSION: Explicit situations of ageism influence an imbalance in power relations between older patients and healthcare professionals, a misuse of health services, and a negative SPA.

Emotional Universe of Nurse Case Managers Regarding Care for Elderly at Risk in Spain: A Hermeneutical Study.

The role of nurse case managers (NCM) involves a rarely visible emotional labor, even more when their role focuses on the care of elders at risk (EAR). Motivated by the lack of qualitative research on the emotional universe of NCM, this study explores the emotional universe (EU) of NCM regarding the care they provide to EAR in primary health care as well as the reasons that generate these emotions. An interpretative-phenomenological approach was implemented in southern Spain, with a purposive sampling that included nurses playing the NCM role for at least three years. Data collection was conducted in two periods (between September 2019 and July 2022). The primary collection tool was the semi-structured individual interview, with starting categories based on Bisquerra's EU taxonomy. The analysis followed Ricoeur's considerations, using the Nvivo software. In the NCM's EU, the recognition of the social phenomena stands out, with an open feeling of empathy regarding the desire of the EAR to continue living at home. However, there was also helplessness, resignation, disappointment, and frustration when EAR rejected their proposals. Furthermore, the system's limitations aroused compassion in the NCM and made them go beyond the limits of their role. This EU requires that their role be valued more, and higher responsiveness must be enforced to improve EAR care.

Care and Rearing of Institutionalized Girls in Arequipa, Peru: An Ethnographic Approach.

INTRODUCTION: Institutional care for children is a global phenomenon. Despite its advantages, common threats have been described. In Peru, more than 70% of institutionalized children/adolescents have living parents who cannot take care of them. The study aims to understand the care/rearing of institutionalized girls in Arequipa, Peru. METHODOLOGY: Ethnographic design, with a sample integrated by 27 institutionalized girls. Data collected based on participant observation and semi-structured interviews. The analysis followed the Method of Constant Comparisons. RESULTS: Five main themes were found: (a) The little house (foster home) is better than my house; (b) They take care of me-even when I am sick-; (c) But . . .; (d) What I have lived is what I am; (e) Happiness fits in this little house. DISCUSSION: An ethnography of care/rearing practices could be helpful for a better understanding of the dimensions of the life of institutionalized girls living in developing countries.

Emotional universe of intensive care unit nurses from Spain and the United Kingdom: A hermeneutic approach.

AIM: To acquire an understanding of the emotional universe of intensive care unit nurses, working in Spain and the United Kingdom. METHODOLOGY: The study used a hermeneutic study design and was set in an academic environment. Participants included nurses with clinical experience in intensive care units. Data were collected from seven in-depth interviews, four in Spanish and three in English. The analysis followed Ricoeur's Theory of Interpretation. The affective taxonomy Universe of Emotions, served to establish starting categories in it. FINDINGS: Six themes were identified: 1) Critical patient care, critical context; 2) Intensive care… for whom?; 3) Nursing a dying patient; 4) In the company of others; 5) But… is it worth it? and 6) Emotional labour is crucial. These all describe different, multifaceted nurses' affective journeys, through categories such as: So little time-so much to do, Relatives, Young death vs. elderly death, Poorly-valued work and I'm in the profession I want to be. CONCLUSION: The sociocultural context shared by the Spanish and English nurses working in intensive care units generates a complex emotional universe, with opposing affective experiences, such as those related to fear, anxiety, sadness, anger, shame, love, surprise and happiness.

Proposal for the User-Centered Design Approach for Health Apps Based on Successful Experiences: Integrative Review.

BACKGROUND: Different strategies encompassed within mHealth have shown themselves to be effective for maintaining good health or controlling certain diseases. However, there is usually a very high rate of abandonment of health apps. Therefore, it would seem obvious that there is a need for involving the end users (whether they are health professionals, patients, or both) in the design process from the early stages in order to enable their needs and characteristics to be identified. In this sense, it is common knowledge that focusing on the user permits the consideration of valuable details aimed at making the correct adjustment between the patient, the technology, and the organization of attention. OBJECTIVE: The goal of the research was to propose a methodology based on the review of previous successful user experiences in setting up health apps by using qualitative techniques (focus groups and discussion groups) that includes the participation of information technology and health professionals and the patients themselves. METHODS: An integrative review was made of studies in which a qualitative methodology was employed mainly through focus and/or discussion groups for the design and development of health apps, consulting diverse databases (PubMed, Scopus, and Proquest) with the following search strategy: "mHealth AND apps AND focus group OR discussion group." A total of 69 papers were included in the review. RESULTS: A proposal structured in 4 sessions of variable duration was made in which information technology and health professionals and patients take part: composing, preparing, and organizing contents (session 1); testing structure and usability (session 2); does the app fit the needs of end users? (session 3); and last testing-keep on improving (session 4). Throughout the sessions, we propose studying aspects like previous user experiences in mHealth, barriers to the adoption of mHealth, interface contents, management and browsability, usability, perceived quality, security and privacy, capacity to self-manage disease with the app, ergonomics, and glanceability, etc. Specific tools that have proved useful in previous research for measuring these aspects are presented. CONCLUSIONS: These work sessions would be based on predominantly qualitative methodologies although, as they evolve, validated questionnaires permitting the assessment of the objectivity of certain technical aspects could be incorporated. With this proposal, a project centered on end users could be effected, responding to their needs. However, this requires validation that will be made via implementation in the development of health apps, with the subsequent measurement of results in terms of adherence and improvement in the clinical variables of the end users.

S.O.S! My Child is at School: A Hermeneutic of the Experience of Living a Chronic Disease in the School Environment.

PURPOSE: The purpose of the present study is to understand the experience of living a chronic disease in the school, from the perspective of the parents. DESIGN AND METHODS: A Grounded Theory study was proposed with a sample of 14 affected families with children between three and eleven years old, all of them from the west and south of Spain. Information was collected using semi-structured surveys and the constant comparative method was used for the analysis. RESULTS: Results are divided into three main themes: SOS! My child is at school, The Systems (don't) Answer and Families Answer. Parents live school enrolment in a state of constant alertness, characterized by distrust, worry, fear, anguish, and indignation. The responses to the problem given by the education and health systems are insufficient, uncoordinated and inefficient. Therefore, parents end up not expecting anything, they transmit the information, organize training sessions, and solve any occurring incident by themselves, often at the expense of quitting their jobs. CONCLUSION: The presence of a school nurse would mean for these parents the integration between the education and health systems. PRACTICE IMPLICATIONS: As findings highlight, more collaboration and sensitivity between the healthcare and educational system is needed, and the school nurse has been indicated as a crucial figure in this matter.

Universo emocional de mujeres afectadas por hepatitis C: una aproximación hermenéutica / The emotional universe of women affected by hepatitis C: A hermeneutic approach

Objetivos: Comprender el universo emocional de mujeres cordobesas afectadas por hepatitis C. Método: Estudio cualitativo hermenéutico. Las participantes cumplían los criterios de inclusión de ser mujer mayor de edad, diagnosticada en la actualidad de hepatitis C y pertenecer a la Plataforma de Afectad@s por la Hepatitis C de Córdoba. El muestreo intencional fue de intensidad y nominado. La recogida de datos se realizó a través de entrevistas en profundidad. El análisis siguió 3niveles: explicación, comprensión superficial y comprensión en profundidad. En el segundo nivel, se incorporó la metáfora «universo de emociones», una taxonomía que organiza las emociones en conjuntos de galaxias para facilitar la comprensión de los fenómenos afectivos. Resultados: Se incluyó a 4 participantes. Los 7 temas resultado recorren las distintas galaxias del universo emocional de las mujeres. «Enfermedad maldita» explora su asco, tristeza y vergüenza. «Afectos íntimos» se detiene tanto en la felicidad y el amor como en la tristeza. «Plataforma amistad» profundiza en la comprensión, bienestar y afecto. «Médicos» se ocupa de la desconfianza y decepción con respecto al nuevo tratamiento; «cura», de la tristeza, miedo, ansiedad y esperanza. «Estado de malestar» se ocupa de la ansiedad. Y «acceso universal ya» explora su ira. Conclusiones: A pesar de la presencia del amor, en el complejo universo emocional de las mujeres con hepatitis C destacan la ira, tristeza y ansiedad. Una hermenéutica de sus emociones facilita la humanización tanto de los cuidados de enfermería que reciben como de la investigación de la que son objeto

Objectives: Understanding the emotional universe of women from Cordoba affected by hepatitis C. Method: Hermeneutic qualitative study. Participants met the criteria of being adult women with a current diagnosis of hepatitis C and belonging to the Plataforma de Afectad@s por la Hepatitis C of Cordoba. The intentional sampling was nominated and followed a criterion of intensity. Data collection was conducted through in-depth interviews. The analysis took place in 3levels: Explanation, naïve understanding and in-depth understanding. In the second level, the metaphor universe of emotions was incorporated, which is a taxonomy that organizes emotions into clusters of galaxies to facilitate understanding of affective phenomena. Results: Four participants were included. Seven themes roam the galaxies in the emotional universe of women. «Damned disease» explores their disgust, sadness and shame. «Intimate affections» focuses on happiness and love as well as sadness. «Friendship-platform» focuses on understanding, welfare and affection. «Physicians» deal with distrust and disappointment regarding new treatment, and with «curing» sadness, fear, anxiety and hope. «State of ill-being» focuses on anxiety. And «universal access now» explores anger. Conclusions: Despite the presence of love in the complex emotional universe of women with hepatitis C, anger, sadness and anxiety are highlighted. Hermeneutics of their emotions facilitates nursing care and nursing research humanization

The emotional universe of women affected by hepatitis C: A hermeneutic approach. / Universo emocional de mujeres afectadas por hepatitis C: una aproximación hermenéutica.

OBJECTIVES: Understanding the emotional universe of women from Cordoba affected by hepatitis C. METHOD: Hermeneutic qualitative study. Participants met the criteria of being adult women with a current diagnosis of hepatitis C and belonging to the Plataforma de Afectad@s por la Hepatitis C of Cordoba. The intentional sampling was nominated and followed a criterion of intensity. Data collection was conducted through in-depth interviews. The analysis took place in 3levels: Explanation, naïve understanding and in-depth understanding. In the second level, the metaphor universe of emotions was incorporated, which is a taxonomy that organizes emotions into clusters of galaxies to facilitate understanding of affective phenomena. RESULTS: Four participants were included. Seven themes roam the galaxies in the emotional universe of women. «Damned disease¼ explores their disgust, sadness and shame. «Intimate affections¼ focuses on happiness and love as well as sadness. «Friendship-platform¼ focuses on understanding, welfare and affection. «Physicians¼ deal with distrust and disappointment regarding new treatment, and with «curing¼ sadness, fear, anxiety and hope. «State of ill-being¼ focuses on anxiety. And «universal access now¼ explores anger. CONCLUSIONS: Despite the presence of love in the complex emotional universe of women with hepatitis C, anger, sadness and anxiety are highlighted. Hermeneutics of their emotions facilitates nursing care and nursing research humanization.

Indignación como experiencia emocional de profesionales de enfermería / Indignation as nurses' emotional experience

Objetivo: Comprender la experiencia emocional de indignación en profesionales de enfermería de España y Reino Unido. Metodología: estudio hermenéutico desarrollado en ambos países. La población de interés incluye profesionales clínicos españoles (n=21) y británicos (n=9). La muestra cumplió criterios de "intensidad" y de "bola de nieve". La recogida de datos fue realizada a través de entrevistas en profundidad. El análisis atendió a la Teoría de la Interpretación de Ricoeur. Resultados principales: Los profesionales del estudio se indignan por acciones y omisiones de distintas disciplinas, bien sean de medicina o de enfermería -entre las que se incluyen las supervisoras-. Entre las acciones también se incluyen algunas -en forma de directrices y presiones- de las organizaciones para las que trabajan. Como última característica de su indignación, se encuentra la nacida de los recortes presupuestarios. Conclusión principal: La indignación de la enfermería española y británica da fe de su pulso ético y humanizador

Objective: To understand the emotional experience of indignation in Registered Nurses from Spain and the United Kingdom. Methods: Hermeneutic study developed in both countries. The population of interest include Spanish (n = 21) and British (n = 9) Registered Nurses. The sampling strategy met the criteria for intensity and snowball. Data collection was conducted through in-depth interviews. The analysis attended Ricoeur's Theory of Interpretation. Results: Nurses, in this study, are outraged by actions and omissions of different disciplines (medicine or nursing) -including Sisters or Nurses in Charge-. Actions, also, include some -in the form of guidelines and pressures - that come from the organizations for which they work. As a last feature of their indignation, there is the one caused by the budget cuts. Conclusions: The indignation of the Spanish and British nursing testifies to its ethical and humanizing pulse

Estrategias de comunicación de los profesionales de enfermería con personas sordas o ciegas / Nurses’ communication strategies used with deaf/blind people

Objetivo principal: Explorar estrategias de comunicación de los profesionales de enfermería con personas sordas o ciegas en la atención sanitaria. Metodología: Revisión bibliográfica con búsqueda en 16 bases de datos de la producción científica relacionada. Resultados principales: Los profesionales no emplean estrategias exitosas de comunicación porque carecen de conocimientos y habilidades pertinentes, pudiendo llegar a sentir miedo, ansiedad, impotencia, frustración, vergüenza y negación. Esto interfiere en la calidad de la atención, dando lugar a malentendidos, errores en la toma de decisiones y en desconfianza. Conclusión principal: El acceso de las personas sordas o ciegas a los servicios de salud está limitado por una deficiente comunicación asistencial que exigiría una urgente formación de sus profesionales

Objective: To explore nurses' communication strategies used with deaf/blind people in healthcare. Methods: Literature review, searching into 16 data bases in order to find related scientific production. Results: Nurses do not use successful communication strategies because they lack relevant knowledge and skills regarding this matter; they can feel fear, anxiety, powerlessness, frustration, embarrassment and denial. This interferes with care quality, leading to misunderstandings, mistakes in decision making and lack of confidence. Conclusions: Deaf/blind people’s access to healthcare is constrained by a poor care communication that needs an urgent professional’s training