Methodological Proposal for the Adaptation of the Living with Long-Term Conditions Scale to the Family Caregiver.

(1) Background: Living with long-term conditions affects both patients and family caregivers. To obtain a more complete overview of this phenomenon, a measurement instrument is needed that includes both perspectives. The aim is to adapt a scale to family caregivers of individuals with long-term conditions. (2) Methods: A methodological proposal is presented that illustrates the adaptation of the EC-PC scale to the family caregiver. Three phases are proposed: adaptation of the items, panel of experts, and pre-test. (3) Results: In the adaptation phase, the items from the original EC-PC were modified to adapt them to the family caregiver, and new items were added associated with the differences in living with LTC from the perspective of family caregivers. In the panel of experts phase, a universal agreement was reached related to the clarity, relevance, and essentiality of the items included. In the pre-test phase, the content of the scale was verified quantitatively and qualitatively. (4) Conclusions: The content of the items of version 5 of the EC-PC-Family showed a high index of inter-judge agreement. When a phenomenon affects both patients and their environment, such as living with LTC, it is necessary to include both perspectives in the measurement tools.

Social and Emotional Loneliness in Older Community Dwelling-Individuals: The Role of Socio-Demographics.

BACKGROUND: Social determinants have a major influence on individuals' health, and among them, loneliness has an important impact on the health of the elderly. OBJECTIVES: The aims were to determine loneliness and its social and emotional components in a sample of elderly people and to assess its prevalence and associations with sociodemographic variables. METHODS: Analytical, cross-sectional, observational research was carried out based on a population over 60 years of age in Valencia (Spain). Loneliness was assessed with the De Jong-Gierveld Loneliness Scale. RESULTS: Five-hundred and thirty community-dwelling individuals participated. The mean age of the sample was 72.7 years (84.2% women); 36.2% suffered from moderate loneliness and 6.6% suffered from extreme loneliness. The sociodemographic variables most significantly related to loneliness were being single, separated, or divorced (p < 0.01). Among widowers, loneliness was inversely associated with years of widowhood (p < 0.01). Having sons/daughters was a significant protective factor (p < 0.05), while having grandchildren or siblings did not have a significant influence. The ability to walk and smartphone and video call use were not associated with loneliness. CONCLUSIONS: There is a high prevalence of unwanted loneliness in community-dwelling individuals, and some social factors play an important role. Interventions against loneliness among older people are a priority for welfare and public health.

The experience of female oncological patients and fertility preservation: A phenomenology study.

OBJECTIVE: The aim of this study is to analyse the experience of fertility preservation among female oncological patients. METHODS: A phenomenological study was conducted in an Assisted Human Reproduction Unit. The sample was composed of 14 females of reproductive age diagnosed with a cancer that may affect reproductive function, who had undergone a fertility preservation procedure. In-depth interviews were carried out, and the transcripts were entred into the Atlas.ti.v.8.2.3 qualitative analysis software package. The steps proposed by Taylor-Bogdan were followed in the analysis of the data. RESULTS: Four thematic categories emerged in relation to the experience with the fertility preservation process: interruption of life plans and changes in the person; knowledge about fertility preservation options, reproductive capacity and impact because of the possible loss; dyadic relationshipsand social representations of fertility. CONCLUSIONS: Patients suffer from difficulties when making decisions about fertility whilst dealing with a cancer diagnosis. They need adequate information and support from health professionals. Despite increasing awareness of fertility preservation, there is a lack of knowledge regarding patients' experiences and needs related to this process.

Perceived mental health and emotional trajectories of long-term family caregivers of persons with mental conditions: A mixed-methods study.

AIMS AND OBJECTIVES: To explore the emotional experience and the perceived mental health of experienced family caregivers of people with mental disorders. BACKGROUND: Family caregiving for individuals with mental disorders differs from other health conditions, as it implies a burden, deterioration in physical and mental health, stigma and a perceived lack of support from mental health services. METHODS: A mixed-method study was undertaken with family caregivers of people diagnosed with mental disorders. RESULTS: A total of 13 experienced family caregivers were included in the study. The qualitative data were classified into two major themes: emotions and perceived mental health. Emotions included five categories: irritability, painful emotions, pressure, emotions orientated towards coping, and positive emotions. The perceived mental health status embraced five categories: anxiety, burden and exhaustion, needing psychological or psychiatric treatment, insomnia and suicidal thoughts. An emotional path could be constructed from their discourses, starting with lack of control or irritation that evolved towards resignation, peace or satisfaction. The quantitative analysis partially replicated the qualitatively reported anxiety, depressive symptoms and insomnia. CONCLUSION: Past and present emotions related to caregiving described by experienced family caregivers were identified. Their emotional trajectories converged in that negative emotions gave way to emotions towards coping, which in turn were followed by positive emotions. The participants' descriptions about their mental status were partially reflected through objective mental health measurements. RELEVANCE TO CLINICAL PRACTICE: More support from mental health services could help caregivers to progress in their emotional trajectory towards coping, and improve their caregiving knowledge and skills. Mental health nurses have a role in patients and caregivers education and in the promotion of caregivers' psychological wellbeing.

Properties of the Spanish Version of the Place Standard Tool.

(1) Background: The social determinants that maintain health inequalities are organized in the physical, social, and economic contexts of neighborhoods and municipalities. Their characteristics influence the behaviors and choices of the people living in them, with an impact on their health and well-being. In recent years, several local applications and urban development tools have been designed to learn how to promote the development of health and wellness environments. Aim: The purpose was to test the properties of the Spanish adaptation of the Place Standard Tool through its implementation in a Valencian community municipality. (2) Methods: Metric properties were analyzed from a sample of 242 participants. Descriptive statistics were used to analyze the sociodemographic data and to describe item responses. Cronbach's alpha was used to provide a measure of the internal consistency, whereas the Kaiser-Meyer Olkin test was relied upon to study the relationship between different variables. (3) Results: The questionnaire showed an internal consistency index of 0.849 and a KMO of 0.842, with a single factor variance of 81.50%. (4) Conclusions: The Spanish adaptation of the Place Standard Tool is a valid tool for assessing neighborhoods and municipalities with a focus on social determinants of health and equity.

The Determinants of Living with Long-Term Conditions: An International Cross-Sectional Study.

It is essential that healthcare and social professionals understand the daily lives of people with chronic diseases, and the variables that influence them. The aim of this study was to identify the determinants influencing the process of living with long-term conditions. To investigate this, an observational, international, cross-sectional study was carried out. A consecutive sample of 1788 Spanish-speaking population living with chronic obstructive pulmonary disease, chronic heart failure and type 2 diabetes mellitus were included. Descriptive statistics and multiple linear regression models were performed. The linear regression models identified that social support (ß = 0.39, p < 0.001) and the satisfaction with life (ß = 0.37, p < 0.001) were the main determinants in the process of living with a long-term condition (49% of the variance). Age (ß = -0.08, p = 0.01) and disease duration (ß = 0.07, p = 0.01) were determinants only in the chronic heart failure subgroup, and country was significant in the chronic obstructive pulmonary disease subgroup (ß = -0.15, p = 0.002). Satisfaction with life and social support were key determinants influencing the process of living with long-term conditions. As such, those aspects should be included in the design of interventions focused on the achievement of a positive living in people with long-term conditions.

Living with Long Term Conditions from the Perspective of Family Caregivers. A Scoping Review and Narrative Synthesis.

(1) Background: When living with one or more long term conditions (LTCs), both the patient and the family experience the impact of the condition at different levels. The family's needs and perceptions should be considered in the process of caring for people with LTCs. The aim of this review is to understand "the process of living with LTCs" from a family perspective. (2) Methods: A scoping review and narrative synthesis were conducted using a systematic methodology in MEDLINE, CINAHL, Web of Science and PsycINFO, in English and Spanish, including evidence from 2018. (3) Results: A total of 28 articles were included in the review. Acceptance, coping, self-management, integration, and adjustment were key attributes in the process of living with LTCs from the perspective of family caregivers that interrelated in a dynamic way through different mechanisms: being aware of the changing situation, personal networks, information and education, personal conditions, attitude to life and communication. (4) Conclusions: The five attributes that comprise living with LTCs from the perspective of the family caregiver are closely connected of to those of patients living with LTCs; however, self-management and integration have a different meaning and application.

Validation of living with chronic illness scale in a type 2 diabetes mellitus population.

BACKGROUND: Worldwide, type 2 diabetes mellitus (T2DM) is one of the most prevalent chronic diseases and one of those producing greatest impact on patients' day-to-day quality of life. Our study aim is to validate the "Living with Chronic Illness Scale" for a Spanish-speaking T2DM population. METHODS: In this observational, international, cross-sectional study, 582 persons with T2DM were recruited in primary care and outpatient hospital consultations, in Spain and Colombia, during the period from May 2018 to June 2019. The properties analysed were feasibility/acceptability, internal consistency, reliability, precision and (structural) content-construct validity including confirmatory factor analysis. The COSMIN checklist was used to assess the methodological/psychometric quality of the instrument. RESULTS: The scale had an adequate internal consistency and test retest reliability (Cronbach's alpha = 0.90; intraclass correlation coefficient = 0.96, respectively). In addition, the instrument is precise (standard error of measurement = 3.34, with values < ½SD = 8.52) and correlates positively with social support (DUFSS) (rs = 0.56), quality of life (WHOQOL-BREF) (rs = 0.51-0.30) and ssatisfaction with life (SLS-6) (rs = 0.50-0.38). The original 26-items version of the scale did not support totally the confirmatory factor analysis. The COSMIN checklist is favourable for all the properties analysed, although weaknesses are detected for structural validity. CONCLUSIONS: The LW-CI-T2DM is a valid, reliable and accurate instrument for use in clinical practice to determine how a person's life is affected by the presence of diabetes. This instrument correlates well with the associated constructs of social support, quality of life and satisfaction. Additional research is needed to determine how well the questionnaire structure performs when robust factor analysis methods are applied.

International psychometric validation of the Living with Chronic Illness Scale in Spanish-speaking patients with chronic obstructive pulmonary disease.

OBJECTIVES: To validate the Living with Chronic Illness (LW-CI) Scale in patients with chronic obstructive pulmonary disease (COPD). DESIGN: Observational, cross-sectional validation study with retest. Acceptability, reliability, precision and construct validity were tested. SETTING: The study took place in primary and secondary specialised units of public and private hospitals of Spain and Colombia. PARTICIPANTS: The study included 612 patients with COPD assessed from May 2018 to May 2019. A consecutive cases sampling was done. Inclusion criteria included: (A) patients with a diagnosis of COPD; (B) native Spanish speaking; (C) able to read and understand questionnaires; and (D) able to provide informed consent. Exclusion criteria included: (A) cognitive deterioration and (B) pharmacological effect or disorder that could disrupt the assessment. RESULTS: The LW-CI-COPD presented satisfactory data quality, with no missing data or floor/ceiling effects, showing high internal consistency for all the domains (Cronbach's alpha for the total score 0.92). Test-retest reliability was satisfactory (intraclass correlation coefficient=0.92). The LW-CI-COPD correlated 0.52-0.64 with quality of life and social support measures. The scale demonstrated satisfactory known-groups validity, yielding significantly different scores in patients grouped according to COPD severity levels. CONCLUSIONS: This has been the first validation study of the LW-CI-COPD. It is a feasible, reliable, valid and precise self-reported scale to measure living with COPD in the Spanish-speaking population. Therefore, it could be recommended for research and clinical practice to measure this concept and evaluate the impact of centred-care interdisciplinary interventions based on the patients' perspective, focused on providing holistic and comprehensive care to patients with COPD.

Women's satisfaction with maternity care during preterm birth.

BACKGROUND: Women's satisfaction with maternity care is strongly influenced by their sociodemographic characteristics, values, and attitudes. The arrival of a preterm baby is often a traumatic time, with unique factors involved. The Spanish Preterm Birth Experience and Satisfaction Scale (P-BESS) is a robust instrument capable of assessing women's satisfaction during preterm birth. The purpose of this study was to assess women's satisfaction with maternity care during labor and birth with preterm babies in a Spanish-speaking population. METHODS: This is a cross-sectional study. Participants were 182 women who gave birth within 37 weeks' gestation. Factors associated with satisfaction were studied through univariate and bivariate analyses and through multiple linear regression using the backward elimination method. RESULTS: Women reported high satisfaction with maternity care overall (average score of 84 out of 95). Women with a university education were generally less satisfied. Women were more satisfied if they were pregnant for the first time. Women who reported a previous premature birth or neonatal death were more satisfied, and women who had prior miscarriages were less satisfied compared with women without these experiences. CONCLUSIONS: The analysis confirmed that the majority of women surveyed were very satisfied with their childbirth experience. The Spanish P-BESS can be a useful way of prioritizing intervention measures, focusing on those aspects lowest scored by women, such as "information and explanations" and "confidence in staff," to improve maternity services for families experiencing preterm birth.

Translation, adaptation and psychometric validation of the preterm birth experience and satisfaction scale (P-BESS) into Spanish.

BACKGROUND: Preterm labour and birth are two of the most important issues in perinatal care. The birth of a preterm baby is often a stressful and traumatic time for parents. Assessment of satisfaction with maternity services is crucial and questionnaires are the most common method as long as they are well-constructed. Only one, The Preterm Birth Experience and Satisfaction Scale (P-BESS), developed in United Kingdom, has been designed for this specific birth type. OBJECTIVES: To translate, transculturally adapt and assess the psychometric properties of the P-BESS into Spanish. DESIGN: Cross-sectional study. SETTING: Maternity unit of a tertiary level hospital in Spain. PARTICIPANTS: A total of 182 woman who gave birth before 37 weeks of gestation. METHODS: The instrument was translated and back translated. The P-BESS was tested for face validity and construct validity by carrying out an exploratory/confirmatory factor analysis. Reliability was estimated from the internal consistency, with the Cronbach's alpha (α), and the test-retest, with the  intraclass correlation coefficient (ICC). FINDINGS: The principal component analysis revealed the presence of three factors with eigenvalues greater than 1, explaining a total variance of 66.6%. A subsequent varimax rotation revealed the presence of strong loadings on each of the three components. Confirmatory factor analysis was performed, offering the model a very good fit to the data: chi-square was χ2(df=149)=362.727 (p = 0.000); the root mean square error of approximation (RMSEA)=0.089; the normed fix index (NFI )= 0.852 and the comparative fit index (CFI)=0.905. The total scale and subscales had good reliability with all Cronbach´s alpha above the acceptable level of 0.7. The total ICC was 0.994 (CI 95%, 0.988-0.997). CONCLUSIONS: The Spanish version of P-BESS appears to be a robust, valid and reliable instrument for assessing satisfaction with care during preterm birth. IMPLICATIONS FOR PRACTICE: the instrument provides a more comprehensive understanding of this complex experience. It allows the detection of areas of intervention in order to empower strategies to cope with preterm births and to maximise feelings of self-confidence and control.

Quality of life related to clinical features in patients with Rett syndrome and their parents: a systematic review.

Patients with a neurodevelopmental disorder such as Rett syndrome (RS), as well as their families, have complex needs that affect their quality of life (QoL). Therefore, both families and patients with RS must be provided with multidisciplinary health care that can identify the clinical features that most affect their QoL and mental health risks. The main objective of this paper is to provide a comprehensive overview of the QoL subdimensions of families affected by RS, including both the parents and children. We conducted a systematic review, following PRISMA criteria, of the data in the PubMed, PsycINFO, Cuiden, and LILACS databases. The results indicated that when considering the family as a whole, RS equally affects the physical and psychological QoL dimensions; the next most affected was the social dimension. According to parents' reports, seizures are one of the main factors that decreases their QoL. Thus, from a clinical point of view, controlling seizure activity of children with RS is the main way of improving the QoL of their parents. Interventions in patients affected by RS should be based on the improvement of visual contact and concentration, reducing somnolence, and increasing mobility. The subdimensions of QoL that were most affected in parents of girls with RS were those related to mental health and feelings of well-being.

Validity of instruments for measuring the satisfaction of a woman and her partner with care received during labour and childbirth: Systematic review.

BACKGROUND: patient satisfaction as an indicator of quality of care is becoming more and more important. The use of questionnaires is the most common method to evaluate satisfaction with maternity care. Despite the extensive variety of instruments available for this purpose, they vary widely in terms of their content and quality. OBJECTIVES: to identify, assess and summarize the most recent and robust instruments available to measure woman and partner satisfaction with the overall package of care during the labour and birth of their baby within a hospital setting. DESIGN: systematic review. METHODS: sixteen electronic databases were consulted. The research also included hand searching references of identified articles. Studies were assessed by two independent reviewers. Inclusion criteria were that participants were mothers and their respective partners and that the questionnaire was a multidimensional instrument used for measuring satisfaction with care during the labour and birth of a baby. Furthermore, the psychometric properties related to construction, reliability and validity of the questionnaire had to be reported. FINDINGS: seventeen studies were included. The majority of the questionnaires was developed within Europe and was disparate in terms of sample, items, dimensions and collection time. Most of them were limited to healthy women with low obstetric risk pregnancies. Only one instrument included partners as the subject of study. All questionnaires reported at least one aspect of reliability, content and construct validity. CONCLUSIONS: there are a moderate number of instruments capable of measuring maternal satisfaction with the care received during labour and birth within a hospital setting. Our study provides an overview of the most up-to-date, valid and reliable tools available. Further investigations are needed in order to improve existing instruments by performing additional psychometric tests, considering more specific populations and assessing the satisfaction of the partner and mother jointly. IMPLICATIONS FOR PRACTICE: assessments of satisfaction with care during labour and birth are relevant to healthcare professionals, administrators and policy makers. Therefore, these instruments are able to assist them according to their specific needs.

Glycemic load, glycemic index, bread and incidence of overweight/obesity in a Mediterranean cohort: the SUN project.

BACKGROUND: To evaluate prospectively the relationship between white, or whole grain bread, and glycemic index, or glycemic load from diet and weight change in a Mediterranean cohort. METHODS: We followed-up 9 267 Spanish university graduates for a mean period of 5 years. Dietary habits at baseline were assessed using a semi-quantitative 136-item food-frequency questionnaire. Average yearly weight change was evaluated according to quintiles of baseline glycemic index, glycemic load, and categories of bread consumption. We also assessed the association between bread consumption, glycemic index, or glycemic load, and the incidence of overweight/obesity. RESULTS: White bread and whole-grain bread were not associated with higher weight gain. No association between glycemic index, glycemic load and weight change was found.White bread consumption was directly associated with a higher risk of becoming overweight/obese (adjusted OR (≥2 portions/day) versus (≤1 portion/week): 1.40; 95% CI: 1.08-1.81; p for trend: 0.008). However, no statistically significant association was observed between whole-grain bread, glycemic index or glycemic load and overweight/obesity. CONCLUSIONS: Consumption of white bread (≥2 portions/day) showed a significant direct association with the risk of becoming overweight/obese.

Nursing research capacity building in a Spanish hospital: an intervention study.

AIMS AND OBJECTIVES: To evaluate a contextually framed intervention to increase nursing research capacity among clinical nurses in a Spanish hospital. BACKGROUND: In Spain, there has been a paucity of nursing research and a lack of nursing research culture. Currently, with the European Convergence of educational programmes and qualifications, there is a growing interest in promoting nursing research in this country. DESIGN: A quasi-experimental design. METHODS: Using a control (n = 81) and an intervention group (n = 89) of nurses, pre- and postintervention data were collected from both groups to evaluate the impact of the intervention at three times. The intervention, implemented over one year, consisted of the establishment of a mentors' network and an educational programme with research courses and journal clubs. Data collection methods included questionnaires, objective tests and scales. RESULTS: The nursing research capacity of the hospital developed moderately after the intervention, with an increase in participants' research capability (knowledge, skills and attitudes) and a decrease in some of the inhibiting factors identified in the context. CONCLUSIONS: A new comprehensive and contextually framed intervention to develop nursing research capacity has been designed, implemented and evaluated in a hospital. It contributed to the development of the nursing research culture in the context. Relevance to clinical practice. An increase in nursing research activity could improve the quality of nursing care through the incorporation of research evidence in practice. This intervention could be used as a model in other hospitals, and it should be evaluated in other contexts.

Design and validation of an instrument to measure nursing research culture: the Nursing Research Questionnaire (NRQ).

AIM: To describe the development of a self-administered questionnaire to study the nursing research culture in a Spanish hospital. BACKGROUND: There is urgent need to promote nursing research in Spain. To do this, it is imperative to understand the Spanish nursing research culture. As no valid Spanish instrument was available, a new instrument called the Nursing Research Questionnaire was developed. DESIGN: A survey and psychometric approach. METHODS: The development and testing of the instrument had three phases which included: identification of concepts and questions; pilot work of the first draft of the tool; and a survey and further test of the instrument. RESULTS: The new instrument was a self-administered questionnaire which contained 43 items divided into three main sections: nurses' research capability; research related activity; and factors influencing research development. The pilot work and the survey results indicated adequate content and face validity of the tool. The internal consistencies of the tool for the four subscales ranged from 0.25-0.93, and the intraclass correlation coefficients in three subscales were over 0.70. CONCLUSIONS: This paper describes the development of a self-administered questionnaire to gather information about the nursing research culture in a Spanish hospital. After further refinement, its use will provide information that will contribute to the development of nursing research in Spain. RELEVANCE TO CLINICAL PRACTICE: The new instrument could be used to provide an understanding of the research culture among nurses in Spain, which will help to design targeted interventions to promote nursing research activity and improve the quality of nursing practice and patient care.

Evaluation of a nurse-led social rehabilitation programme for neurological patients and carers: an action research study.

BACKGROUND: Very few neurological rehabilitation programmes have successfully dealt with patients' and relatives' social needs. Furthermore, the nurses' contribution in those programmes is poor or unclear. OBJECTIVES: To determine the rationale, effectiveness and adequacy of a nurse-led social rehabilitation programme implemented with neurological patients and their carers. DESIGN: In this action research study Hart and Bond's experimental and professionalizing typologies were applied through Lewinian cycles. A social rehabilitation programme was planned, based on the results of an in-depth baseline assessment of the context and individual needs. The programme focused on increasing the level of acceptance/adaptation of the disease through verbal and written education, easing the discharge planning, and offering social choices based on the social assessment of individual needs and possibilities at home. SETTINGS: Two neurological wards of a hospital in Spain. PARTICIPANTS: The programme evaluation included 27 nurses, and two groups of patients and relatives (control group=18 patients and 19 relatives, intervention group=17 patients and 16 relatives). METHODS: The two groups of patients and relatives were compared before and after discharge to determine the effectiveness of the programme. Socio-demographic forms, semi-structured interviews, participant observations, and validated scales to measure activities of daily living and social life were used, and data were analysed using content (QSR Nudist Vivo, v.2.0) and statistical (SPSS v. 13.0) analyses. RESULTS: The new programme resulted in social care being integrated in daily practice and developed knowledge about social rehabilitation. This had a positive impact on nurses' attitudes. Patients and relatives had more realistic expectations and positive attitudes towards social life, and developed a wider variety of choices for social changes. Better adaptation, and more coping skills and satisfaction were achieved. CONCLUSIONS: This rehabilitation programme was feasible and effective. Patients and relatives benefited from better understanding of the socialisation process, as a result of advancing nurses' knowledge, experience and role in psychosocial care.