Critical points in the experience of spouse caregivers of patients who have suffered a stroke. A phenomenological interpretive study.

AIMS: To explore and document the experiences and values of spouse caregivers of stroke survivors. To gain more in-depth knowledge of how the act of caring and the adaption process affects caregiving spouses. MATERIALS AND METHODS: Phenomenological, qualitative study. This study included spouses of stroke survivors who also served as primary caregivers. Individual, semi-structured, in-depth interviews were conducted, transcribed, and analysed using a thematic content analysis as proposed by Giorgi. Data was analysed and managed using Atlas-ti (version 7.0). This study was approved by our institution´s Complejo Hospitalario de Caceres Ethics and Research Committee. RESULTS: Spouse caregivers of stroke survivors undergo a process of disruption in their private lives and relationships, marked by their caregiving duties. The experiences of spouses caring for stroke survivors is condensed into topics and subtopics: "Caregiving and that´s all" summarizes the sense of having no life horizons and also caregiver impossibility of moving away from caring role. Otherwise, "Breaking the couple´s life together" enlightens the further consequences of stroke in couples shared live biography, which needs to be understood and rebuilt. Finally, "Going through the (non) loss alone" alludes to how spouses reinterpret meaning of loss, which is not appreciated by others and that refers to the balance between stroke survival and any acquired global disability. CONCLUSIONS: A comprehensive approach to the couple (family), from a psycho-socio-emotional and relational perspective, is essential for ensuring adequate quality of life for people who suffered a stroke as well as their caregivers. Spouses-caregivers must be considered as individuals living a transition process due to their unexpected disrupting change, which nurses should address through a comprehensive and integrated approach focused on transition care. Care resources must be adapted to the interpretation that the spouses have of their caregiving role and their relationship with the different components of the caregiving process.

Photoelicitation: a useful tool to investigate management of the vulnerability of homeless women. / Foto-elicitación: una herramienta útil para investigar la gestión de la vulnerabilidad de las mujeres sin hogar.

AIMS: The proposal of the manuscript is to provide a methodological reflection on the use of photo-elicitation as a data gathering strategy to explore vulnerability management among homeless women. METHODS: A grounded theory study was carried out. Photo elicitation was one of the data gathering techniques used between February 2015 and February 2017. Five women were selected through intentional sampling. All of them were over 18 years old and residents in 4 shelters within the Madrid Care for the Homeless network. Participants used disposable cameras or mobile phones to record their experiences living in the shelters or on the street through photographs. An interview was conducted with each participant in order to explore the meaning of the photos after they were developed. Data analysis comprised, firstly, describing the obvious content of the photos and, secondly, comparing it with the latent content provided by participants during the interviews. RESULTS: Only 3 women finished the task. Through data analysis some theoretical proposals were discovered, which contributed to a deeper knowledge of some previously established categories and subcategories such as: "The good professionals", "The safe places in the street" and "The threats in the street". CONCLUSIONS: Photo-elicitation enabled an approach to participants' experiences with minimal imposition, allowing them much of the control over the data production. However, it is a demanding technique that requires deep reflection before its implementation, on the part of both participants and researchers.

Exploring Nurses' Meaning and Experiences of Compassion: An International Online Survey Involving 15 Countries.

PURPOSE: In recent years, there has been much focus on compassion in nursing care, and concern has been raised in a number of reports and media stories regarding decreased compassion. The aim of this study was to explore similarities and differences in the understanding and demonstration of compassion in nursing practice across 15 countries. DESIGN: A total of 1,323 nurses from 15 countries responded to questions in relation to compassion, via an international online survey. RESULTS: The data revealed the impact of sociopolitical influences on perceptions of compassion, and the conscious and intentional nature of compassion. DISCUSSION AND CONCLUSION: The study demonstrated shared understandings of the importance of compassion as well as some common perceptions of the attributes of compassionate care. The differences reported were not as significant as had been expected. IMPLICATIONS FOR PRACTICE: Further research is needed to explore the country and culture differences in the enactment of compassion.

[Impact on quality of life in caregivers of stroke survivors]. / Impacto en la calidad de vida en cuidadores de supervivientes de un ictus.

UNLABELLED: Stroke is the first cause of disability in adults. Often, the care falls on the family and can affect their quality of life. AIM: To determine the health-related quality of life and the level of caregiver burden of a patient after a stroke. METHOD: Descriptive and cross-sectional study. Caregivers, who had cared for a patient for more than six months and without pay, were included. This study had been approved by the Ethics Committee. Variables collected: sociodemographic, EuroQol-5D questionnaire, Zarit scale, mood and sleep problems. RESULTS: Forty-eight caregivers were included, with a mean age of 55.63 (SD: 13.48) and the majority were women (70.8%). The mean time of the care was 28.8 months (SD: 28.68), with 58% stated having a depressed mood, 31% had burden, and 89.6% had sleep problems. The dimensions that presented problems (moderate and severe) in the EQ-5D were pain-discomfort (66.7%) and anxiety-depression (68.8%). The score on the visual analog scale rating of quality of life was associated with a worse mood (75.5 vs. 32, p=0.0028), with the pain (81.94 vs. 38, p<0.001), and Zarit scale (r:<0.334, p=0.020). CONCLUSIONS: The role of caregivers of stroke patients often falls on women. To be a caregiver affects the quality of life, mainly in the pain-discomfort and anxiety-depression dimensions, regardless of the functional status of the patient. Nurses must identify the psychopathological needs and develop strategies on the prevention of the risk of burnout.

Caring to achieve the maximum independence possible: a synthesis of qualitative evidence on older adults' adaptation to dependency.

AIMS AND OBJECTIVES: To understand the process of adaptation to dependency in older adults and their families. BACKGROUND: Dependency and family care giving are attracting the attention of policymakers, service providers and researchers. DESIGN: An interpretative synthesis of qualitative studies has been conducted. METHODS: An extensive search without time and idiom limitations was conducted using the main databases (MEDLINE, CINAHL, EMBASE, PsycINFO, SSCI, LILACS, CUIDEN, Cochrane Library and JBI): personal communication from expert panel was used to detect filters strategies to find qualitative studies; these strategies were combined with search terms for dependence in older adults. The studies (2164 potentially relevant papers) were judged by two reviewers based on reading title, abstract, keywords and/or full text (English, Spanish, French and Portuguese) to determine their inclusion. After, 203 papers were critically appraised by two reviewers (disagreements were resolved by discussions). Finally, the synthesis of the 20 studies with best interpretative character was carried out based on the principles and procedures of Grounded Theory. RESULTS: The findings were related to the process of adaptation to dependency, the factors and the strategies used, the emotions, perceptions and feelings of care givers and older adults. The central category that emerged was 'Caring to achieve the maximum independence possible', and this could be seen as a transition period in which older adults and their families progressed in a mutually determined adaptation process. This category is made up of several redefinitions of concepts, phases, adaptation strategies and final responses to the process. CONCLUSIONS: The findings show the interconnected nature of physical, material, social and emotional aspects of care; and the profound social impact of providing and receiving care. Relevance to clinical practice. The nurses can assist families and older adults to enhance adaptation to dependency, anticipating and helping to redefine the concepts of care.

The Spanish version of the health-related quality of life questionnaire for children and adolescents with heart disease (PedsQL(TM)).

INTRODUCTION AND OBJECTIVES: To adapt the Pediatric Quality of Life Inventory (PedsQL(TM)) (General Module and Cardiac Module, 3.0 version) into Spanish. METHODS: Forward and back translation methodology. Cognitive interviewing was used to check the pre-test version. Psychometric properties were computed for the PedsQL(TM) Cardiac Module Scales. Cross-informant variance between children and parents was assessed. RESULTS: The Spanish version has some format changes to make it easier to read and to clarify response choices (version for 5-7 years age group). Some semantically complex terms were replaced with synonyms and others illustrated with examples. Some "out of context" problems were identified with respect to some items (version for children 2-4 and 5-7 years). The percentage of missing item responses ranged from 0% to 5.9%. A high ceiling effect was found, especially in the Cardiac Module, which ranged from 19% to 48.6%. Internal consistency was higher than 0.7, except for Physical Appearance Scale and School Functioning in children. Agreement between information given by children and parents was generally very high. A decreasing trend in scores on all scales was observed in relation to the severity of heart disease, but the differences were only statistically significant in some dimensions. CONCLUSIONS: The Spanish version of the PedsQL(TM) differs somewhat from the original version, particularly on the School Functioning and Physical Appearance Scales, as observed in cognitive interviews. Predictive validity was not demonstrated.

Research protocol: a synthesis of qualitative studies on the process of adaptation to dependency in elderly persons and their families.

BACKGROUND: Dealing with dependency in the elderly and their families leads us to explore the life experience of those involved together with the processes of adaptation to this condition. A number of original studies have been published which, following a qualitative methodology, have dealt with both dimensions. OBJECTIVES: 1) To present a synthesis of the qualitative evidence available on the process of adaptation to dependency in elderly persons and their families; 2) to conduct an in-depth study into the experiences and strategies developed by both to optimise their living conditions; 3) to enable standards of action/intervention to be developed in the caregiving environment.A synthesis of qualitative studies is projected with an extensive and inclusive bibliography search strategy. The primary search will focus on the major databases (CINAHL, MEDLINE, EMBASE, PsycInfo, PSICODOC, Cochrane Library, JBI, EMBASE, LILACS, CUIDEN, CUIDEN qualitative, CUIDATGE, British Nursing Index, SSCI). The secondary search will be conducted in articles taken from the references to studies identified in the articles and reports and the manual search in congresses and foundation papers. Article quality will be assessed by the guide proposed by Sandelowski & Barroso and data extraction done using the QARI data extraction form proposed by the Joanna Briggs Institute for Evidence-Based Practice.The synthesis of the findings will be based on the principles and procedures of grounded theory: coding, identification and relationship between categories, and synthesis using constant comparison as a strategy. DISCUSSION: This synthesis of qualitative evidence will enable us to detect health needs as perceived by the receivers in their own interaction contexts.

[To establish nurse research priorities in Spain: Delphi study]. / Establecimiento de prioridades de investigación en enfermería en España: estudio Delphi.

OBJECTIVE: To identify nursing research priorities in Spain as suggested by nurses and service users. METHOD: A Modified Delphi technique was used. The first round started off with a 24-item document for which consensus had been previously achieved. Experts participating in this modified (two rounds) Delphi technique were: nursing managers (community and hospital care settings), nursing school directors, scientific nursing association representatives, nursing researchers attending the National Nursing Research Conference, and service users. RESULTS: Main priorities identified for nursing research were: 1) evaluating the effectiveness of nursing interventions, 2) identifying strategies for health promotion empowering service users, 3) developing evidence-based care through implementing and evaluating results, and 4) evaluating the quality of nursing care. CONCLUSIONS: Results may help research managers and administrators identify and develop nursing research promotion strategies as well as more strongly sustained funding policies and decisions.

[Puppets as a resource for in-depth interviews with pre-school children]. / Las marionetas como recurso para la realización de entrevistas en profundidad con niños preescolares.

Doing research about children health and illness process involves to consider their own experience interpretation, so that listening to children's voice in necessary. Qualitative research offers us the possibility to access children's subjective experience. Nevertheless doing research with children is not easy and sometimes the use of support tools is necessary. This article goes in depth into the use of puppets as an strategy to carry out in-depth interviews with preschools.