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1.
Health Qual Life Outcomes ; 21(1): 69, 2023 Jul 10.
Artículo en Inglés | MEDLINE | ID: mdl-37430315

RESUMEN

INTRODUCTION: Parkinson's disease is the second most prevalent neurodegenerative disease, affecting 10 million people worldwide. Health and social care professionals need to have personalised tools to evaluate the process of living with Parkinson's disease and consequently, plan individualised and targeted interventions. Recently, the English version of the Living with Long term conditions (LwLTCs) scale has been developed filling an important gap related to person-centred tools to evaluate the process of living with long term conditions among English-speaking population. However, no validation studies for testing its psychometric properties have been conducted. AIM: To analyse the psychometric properties of the LwLTCs scale in a wide English-speaking population living with Parkinson's disease. METHODS: Validation study, with an observational and cross-sectional design. The sample was composed of individuals living with Parkinson's disease from non-NHS services in the community. Psychometric properties including feasibility and acceptability, internal consistency, reproducibility, and construct, internal and known-groups validity were tested. RESULTS: A total sample of 241 people living with Parkinson's disease were included. 6 individuals did not complete 1 or 2 items on the scale. Ordinal alpha was 0.89 for the total scale. The intraclass correlation coefficient for the total scale was 0.88. The LwLTCs scale is strongly correlated with scales measuring satisfaction with life (rs=0.67), quality of life (rs=0.54), and moderately correlated with social support (rs=0.45). Statistically significant difference just for therapy and co-morbidity, yet no for gender, employment situation, or lifestyle changes. CONCLUSIONS: The LwLTCs scale is a valid scale to evaluate how the person is living with Parkinson's disease. Future validation studies to prove the repeatability of the total scale and particularly, domains 3-Self-management, and 4-Integration and internal consistency will be needed. Developing further studies on the English version of the LwLTC in people with other long term conditions is also proposed.


Asunto(s)
Enfermedades Neurodegenerativas , Enfermedad de Parkinson , Humanos , Estudios Transversales , Calidad de Vida , Reproducibilidad de los Resultados
2.
J Adv Nurs ; 78(1): 48-62, 2022 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-34235775

RESUMEN

AIM: Survivorship care plans (SCPs) are recommended as a tool for the care of cancer survivors. SCPs have been implemented with a multidisciplinary approach; however, the specific role of nurses in the SCP is unknown. Our aim is to determine the role of nurses and their degree of participation in cancer SCPs. DESIGN: Integrative review of the literature with systematic methodology. DATA SOURCES: PubMed, CINAHL, PsycINFO, Web of Science, Cochrane and Cancerlit databases were reviewed. Articles published up to March 2021 were included. REVIEW METHOD: Of the 2,638 publications identified, 22 studies met our inclusion criteria. Quality of included studies was assessed using Joanna Briggs Institute quality assessment tools. RESULTS: The studies showed that nurses play a key role and participate in different phases of the SCP, including design, delivery, monitoring and coordination among different levels of care, with varying degrees of involvement and responsibility; design and delivery of the SCP are the phases with the highest nurse participation (18 out of 22 studies). The majority of SCPs are implemented in specialized, hospital-based care and focus on short-term cancer survivors, who are actively undergoing oncological treatments. CONCLUSION: This review shows that nurses actively participate in the design, implementation and coordination of SCPs. However, SCPs focus on the acute survival and treatment phases, and there is a gap in their use in long-term cancer survivorship. This gap may be one reason the needs of long-term cancer survivors are not covered. IMPACT: This review contributes to the current body of knowledge by addressing the role of nurses in cancer SCPs. We recommend the involvement of an advanced practice nurse as SCP coordinator to improve communication between cancer specialists and primary care providers and to promote continued care throughout the different phases of cancer survivorship, including long-term survival.


Asunto(s)
Supervivientes de Cáncer , Neoplasias , Humanos , Neoplasias/terapia , Rol de la Enfermera , Planificación de Atención al Paciente , Supervivencia
3.
Health Qual Life Outcomes ; 19(1): 93, 2021 Mar 17.
Artículo en Inglés | MEDLINE | ID: mdl-33731142

RESUMEN

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.


Asunto(s)
Diabetes Mellitus Tipo 2/psicología , Calidad de Vida , Encuestas y Cuestionarios/normas , Adulto , Colombia , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Reproducibilidad de los Resultados , España
4.
Health Expect ; 24(6): 2065-2077, 2021 12.
Artículo en Inglés | MEDLINE | ID: mdl-34492734

RESUMEN

BACKGROUND: The Living with Chronic Illness (LW-CI) Scale is a comprehensive patient-reported outcome measure that evaluates the complex process of living with long-term conditions. OBJECTIVE: This study aimed to analyse the psychometric properties of the LW-CI scale according to the classic test theory and the Rasch model among individuals living with different long-term conditions. DESIGN: This was an observational, international and cross-sectional study. METHODS: A total of 2753 people from six Spanish-speaking countries living with type 2 diabetes mellitus, chronic obstructive pulmonary disease, chronic heart failure, Parkinson's disease, hypertension and osteoarthritis were included. The acceptability, internal consistency and validity of the LW-CI scale were analysed using the classical test theory, and fit to the model, unidimensionality, person separation index, item local independency and differential item functioning were analysed using the Rasch model. RESULTS: Cronbach's α for the LW-CI scale was .91, and correlation values for all domains of the LW-CI scale ranged from .62 to .68, except for Domain 1, which showed correlation coefficients less than .30. The LW-CI domains showed a good fit to the Rasch model, with unidimensionality, item local independency and moderate reliability providing scores in a true interval scale. Except for two items, the LW-CI scale was free from bias by long-term condition type. DISCUSSION: After some adjustments, the LW-CI scale is a reliable and valid measure showing a good fit to the Rasch model and is ready for use in research and clinical practice. Future implementation studies are suggested. PATIENT AND PUBLIC CONTRIBUTION: Patient and public involvement was conducted before this validation study - in the pilot study phase.


Asunto(s)
Diabetes Mellitus Tipo 2 , Enfermedad Crónica , Estudios Transversales , Humanos , Proyectos Piloto , Psicometría , Reproducibilidad de los Resultados , Encuestas y Cuestionarios
5.
Aten Primaria ; 53(6): 102044, 2021.
Artículo en Español | MEDLINE | ID: mdl-33836404

RESUMEN

OBJECTIVE: Present the psychometric results of the Living with Osteoarthritis (LW-OA) in Spanish population. DESIGN: Observational, cross-sectional and multicenter study, with retest on a fraction of the sample. LOCATION: Public and private centres of primary and secondary healthcare, as well as patient associations from Navarra, La Rioja, Madrid, Valencia and Malaga. PARTICIPANTS: The sample was composed by 291 patients with OA with a medical diagnosis in every stage of the disease from primary or secondary healthcare, Spanish nationality and not hospitalized. INTERVENTIONS: In addition to LW-OA, a sociodemographic questionnaire was included, as well as scales to evaluate social support perceived from the patient (DUFSS), quality of life (WHOQOL-BREF) and satisfaction with life. MAIN MEASUREMENTS: Psychometric properties of the LW-OA were measured, as viability and acceptability, reliability (internal consistency and reproducibility), precision and construct validity (convergent, internal and known-groups). RESULTS: 100% of the data were computable. Excellent data quality was obtained. Cronbach's alpha for the scale total was 0.87 and the homogeneity index 0.22. ICC for the scale total was 0.88. As for precision, the SEM was 5.18 (<½DE=7.47). CONCLUSIONS: The LW-OA is a valid and feasible measure to evaluate the process of living with OA in Spain.


Asunto(s)
Osteoartritis , Calidad de Vida , Estudios Transversales , Humanos , Reproducibilidad de los Resultados , Encuestas y Cuestionarios
6.
BMC Neurol ; 20(1): 346, 2020 Sep 15.
Artículo en Inglés | MEDLINE | ID: mdl-32933508

RESUMEN

BACKGROUND: Neurologists play an essential role in facilitating the patient's process of living with Parkinson's disease (PD). The Living with Chronic Illness Scale-PD (LW-CI-PD) is a unique available clinical tool that evaluates how the patient is living with PD. The objective of the study was to analyse the LW-CI-PD properties according to the Rasch model. METHODS: An open, international, cross-sectional study was carried out in 324 patients with Parkinson's disease from four Latin American countries and Spain. Psychometric properties of the LW-CI-PD were tested using Rasch analysis: fit to the Rasch model, item local independency, unidimensionality, reliability, and differential item functioning by age and gender. RESULTS: Original LW-CI-PD do not fit Rasch model. Modifications emerged included simplifying the response scale and deleting misfit items, the dimensions Acceptance, Coping and Integration showed a satisfactory fit to the Rasch model, with reliability indices greater than 0.70. The dimensions Self-management and Adjustment to the disease did not reach fit to the Rasch model. CONCLUSION: Suggestions for improving the LW-CI-PD include a multidimensional and shorter scale with 12 items grouped in three subscales with a simpler response scheme. The final LW-CI-PD Scale version is a reliable scale, with good internal construct validity, that provides Rasch transformed results on linear metric scale.


Asunto(s)
Enfermedad de Parkinson , Psicometría , Estudios Transversales , Humanos , América Latina , Enfermedad de Parkinson/clasificación , Enfermedad de Parkinson/diagnóstico , Enfermedad de Parkinson/fisiopatología , Enfermedad de Parkinson/terapia , Psicometría/métodos , Psicometría/normas , Reproducibilidad de los Resultados , España
7.
J Adv Nurs ; 76(10): 2719-2732, 2020 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-32798329

RESUMEN

AIM: To evaluate the effects of a psychoeducational intervention compared with an education programme to strengthen quality of life, psychosocial adjustment, and coping in people with Parkinson's disease and their informal caregivers. DESIGN: A quasi-experimental study was performed with repeated measures at baseline, after the intervention and 6 months post-intervention. METHODS: The study was carried out at seven primary care centres from 2015-2017. A total of 140 people with Parkinson's and 127 informal caregivers were allocated to the experimental and the control groups. The experimental group received a 9-week psychoeducational intervention, whereas the control group received a 5-week education programme. Repeated measures ANOVA were used to test differences in quality of life, psychosocial adjustment, and coping between the experimental and control groups and over time. RESULTS: Patients and informal caregivers in both the experimental and control groups showed significantly better psychosocial adjustment at the post-intervention measurement compared with baseline data. We also found significantly greater quality of life in patients and coping skills in caregivers after the end of the interventions in the experimental and control groups. Nevertheless, no significant differences were identified on the outcomes at the 6-month post-intervention measurement. CONCLUSION: The effect of the psychoeducational intervention was not different from the effect of the education programme. The strategies applied in both interventions followed a group approach led by a multidisciplinary team covering information about PD, healthy lifestyles, and social resources. They might be easily sustained in Primary Care to improve care for people with Parkinson's and informal caregivers.


Asunto(s)
Enfermedad de Parkinson , Adaptación Psicológica , Cuidadores , Escolaridad , Humanos , Calidad de Vida
8.
Aten Primaria ; 52(3): 142-150, 2020 03.
Artículo en Español | MEDLINE | ID: mdl-30528749

RESUMEN

OBJECTIVE: To present the pilot study of the Living with Chronic Illness Scale (EC-PC) in patients with diabetes mellitus type 2, chronic heart failure, chronic obstructive pulmonary disease and osteoarthritis. DESIGN: Observational, cross-sectional and multicenter study. LOCATION: Two specialized hospitals in Navarre and Madrid. PARTICIPANTS: 64 patients with several chronic diseases, older than 18 years old, that go to primary health centre and/or outpatients. Patients with cognitive deterioration and/or psychiatric disorders were excluded. INTERVENTIONS: Evaluations had an average duration of 15 minutes per patient. MAIN MEASUREMENTS: Patients completed the EC-PC and a questionnaire related to the scale. Feasibility/acceptability, internal consistency and construct validity was analyzed. RESULTS: For the total sample, the EC-PC showed a good viability and acceptability, without missing data and with almost 100% of the computable data. Cronbach's alpha coefficient reached values between 0.64 and 0.76, and the homogeneity index was higher than 0.30 in all domains of the scale. The values of internal validity ranged between 0.04 and 0.30. No significant differences were found (p> 0.05) in the total score of the scale according to gender or the different pathologies. The patients described the scale as simple and useful. CONCLUSIONS: The pilot study of the EC-PC in patients with different chronic illnesses showed that it is a brief, easy to use, reliable and valid measure. The EC-PC will serve to know in an individualized way, how the patient is living with his/her chronic process and to prevent possible negative aspects of the daily living with the disease.


Asunto(s)
Diabetes Mellitus Tipo 2/psicología , Insuficiencia Cardíaca/psicología , Osteoartritis/psicología , Enfermedad Pulmonar Obstructiva Crónica/psicología , Adulto , Anciano , Anciano de 80 o más Años , Enfermedad Crónica , Estudios Transversales , Diabetes Mellitus Tipo 2/diagnóstico , Femenino , Insuficiencia Cardíaca/diagnóstico , Humanos , Masculino , Persona de Mediana Edad , Osteoartritis/diagnóstico , Proyectos Piloto , Enfermedad Pulmonar Obstructiva Crónica/diagnóstico , Reproducibilidad de los Resultados , Factores Socioeconómicos , España , Encuestas y Cuestionarios
9.
J Clin Nurs ; 28(17-18): 3168-3176, 2019 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-30938889

RESUMEN

AIMS AND OBJECTIVES: To identify the personal- and disease-related factors that are associated with living with Parkinson's disease. BACKGROUND: Living with Parkinson's disease affects the physical, psychological, social and spiritual areas of the person. Health professionals need to know which factors influence the daily living with Parkinson's disease, in order to facilitate a positive living. DESIGN: A multicentre cross-sectional study. METHODS: A total of 324 patients with Parkinson's disease diagnoses were included in the study through a consecutive case sampling. Data were collected from January-June 2015, in specialised units of movement disorders of public and private and community centres, from Spain, Argentina, Mexico, Ecuador and Cuba. Nine measures were applied to evaluate personal-related factors (age, gender, psychosocial function, satisfaction with life, social support, home economical situation) and Parkinson's disease-related factors (duration of disease, motor symptoms and non-motor symptoms). The STROBE checklist was used to ensure quality reporting during the study (see File S1). Multiple linear regression analysis was carried out. RESULTS: Results indicated that social support, followed by satisfaction with life and home economical situation are the only three factors that significantly influence in living with Parkinson's disease. The rest of the factors analysed did not present significant influence in the daily living with this neurodegenerative disease. CONCLUSION: This study highlights the necessity to put more emphasis on the person and his/her daily living with the condition and less on symptoms and treatment. Health professionals need to develop person-centred interventions that also deal with other elements of the experience of living with a long-term condition like Parkinson's disease. RELEVANCE TO CLINICAL PRACTICE: Interventions to foster positive living with Parkinson's disease in clinical practice should integrate strategies to tackle and prevent loneliness and interagency elements to increase community resources and systems of support.


Asunto(s)
Actividades Cotidianas/psicología , Enfermedad de Parkinson/psicología , Calidad de Vida , Adulto , Anciano , Anciano de 80 o más Años , Estudios Transversales , Femenino , Humanos , Modelos Lineales , Masculino , Persona de Mediana Edad , Análisis Multivariante , Enfermedad de Parkinson/enfermería , Atención Dirigida al Paciente , Índice de Severidad de la Enfermedad
10.
Rev Enferm ; 40(1): 16-24, 2017 Jan.
Artículo en Español | MEDLINE | ID: mdl-30257083

RESUMEN

Introduction: Understanding how a person lives with chronic illness is necessary to provide care according to the individual's needs. Nowadays, there is no validated scale to measure how the person is living with a chronic condition, such as Parkinson's disease. Objectives: The objectives were to: 1) define the concept of Living with a chronic illness; 2) design a measuring scale of the degree of Living with a chronic illness, in particular with Parkinson's disease. Methodology: Two methodological steps were carried out. Regarding the first methodological step, a concept analysis of Living with a chronic illness was done using Rodgers' evolutionary method. the second methodological step was the design of the scale, following DeVellis guideline. Results: Through the concept analysis it was identified that Living with a chronic illness is a complex, dynamic, cyclic and multidimensional process, involving the attributes of Acceptance, Coping, Self-management, Integration and Adjustment. In relation to the design of the scale, it was developed a self-reported measure, with five Likert response options and 27 items. Conclusions: The designed scale, is an innovative measure with a high potential interest in clinical community to identify with are the factor(s) that make the person have a positive or negative living with the disease. Consequently, nurses could intervene in a holistic way, according to the patient individual needs.


Asunto(s)
Autoevaluación Diagnóstica , Enfermedad de Parkinson/psicología , Perfil de Impacto de Enfermedad , Enfermedad Crónica/psicología , Humanos
11.
J Clin Nurs ; 24(17-18): 2357-67, 2015 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-25951949

RESUMEN

AIMS AND OBJECTIVES: To report an analysis of the concept of Living with chronic illness in adults, using Rodger's evolutionary analytical methodology. BACKGROUND: In the literature, several qualitative studies exist that address the question of Living with chronic illness from the adult patient's perspective. However, the lack of clarity and consensus among the existing studies renders this concept ambiguous when it is analysed in depth. DESIGN: A narrative review. METHODS: A systematic search has been carried out on electronic databases such as Medline (PubMed), Cinahl (Ebsco), Cochrane Library, PsycINFO (Ovid), Embase, Cuiden, Dialnet and Scielo. This was limited to articles published in either Spanish or English, from 2003-2013. RESULTS: Living with chronic illness is a complex, dynamic, cyclic and multidimensional process, and involves the development of five different attributes: Acceptance, Coping, Self-management, Integration and Adjustment. Depending on how these attributes operate, there are four different ways of living which can result from the process of Living with chronic illness: (1) Disavowal, (2) False Normality, (3) The New Normal and (4) Disruption. CONCLUSIONS: This paper contributes to the understanding of the concept 'Living with chronic illness'. Findings in this analysis have to be evaluated with caution and further research is needed on this topic to confirm them. Also, more studies in evaluating how patients live a long-term condition are recommended to foster patient-centred care. RELEVANCE TO CLINICAL PRACTICE: Findings generated from this concept analysis can raise awareness of Living with chronic illness so that this process could be assessed in a correct and uniform way in the clinical community and improved when needed.


Asunto(s)
Adaptación Psicológica , Enfermedad Crónica/psicología , Modelos de Enfermería , Adulto , Enfermedad Crónica/enfermería , Humanos , Calidad de Vida , Autocuidado
12.
Nurs Manag (Harrow) ; 2024 Apr 29.
Artículo en Inglés | MEDLINE | ID: mdl-38680046

RESUMEN

The shortfall of nurses in the UK has led to concerns that there are insufficient staff to ensure safe and high-quality care. To address this shortfall, one group to focus on for recruiting nursing students is school-leavers. This article reports on an integrative literature review that was conducted to explore the educational strategies used to attract school-leavers to undergraduate nurse education programmes. The review identified that a variety of educational strategies were used, and all of the included studies reported positive effects on school pupils' intention to undertake nursing studies. These strategies often included interactions with nursing staff and/or nursing students, as well as observing and practising clinical skills, for example via simulation. However, most participants likely had a pre-existing interest in healthcare or nursing, the interventions were delivered predominantly to young women, and the included studies lacked longer-term follow-up. This highlights a need to conduct further research to assess the longitudinal impact of recruitment strategies aimed at broader audiences.

13.
Nurs Rep ; 14(1): 532-544, 2024 Feb 27.
Artículo en Inglés | MEDLINE | ID: mdl-38535713

RESUMEN

(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.

14.
BMJ Open ; 14(1): e077978, 2024 01 10.
Artículo en Inglés | MEDLINE | ID: mdl-38199640

RESUMEN

OBJECTIVE: To present the psychometric properties of the living with long-term condition (LwLTCs) scale in an English-speaking population of people with different LTCs. DESIGN: An observational and cross-sectional study, with retest was conducted. Psychometric properties including feasibility, internal consistency, confirmatory factor analysis, reproducibility and content validity were tested. SETTING: The study took place across the UK via primary care surgeries and voluntary organisations, between December 2021 and June 2022. PARTICIPANTS: The study included 577 patients living with different LTCs, as chronic obstructive pulmonary disease, arthritis, chronic heart failure, Parkinson's disease, chronic kidney disease and type 2 diabetes mellitus. Inclusion criteria included: (a) having been diagnosed with one or more of the conditions; (b) being able to read, understand and answer written questionnaires; (c) being fluent in English and (d) being able to provide written informed consent. Patients were involved in the design and pilot study of the scale. RESULTS: A total sample of 577 people with an age range of 37-97 years (98±9.65) were recruited. Internal consistency of the total 26-item LwLTCs scale score was excellent (ordinal alpha=0.90) but confirmatory factor analysis showed better fit indices (Normed Fit Index=0.96; standardised root mean square residual=0.051; Goodness of Fit Index=0.98) for a 20-item LwLTCs scale. CONCLUSIONS: A shorter version of the LwLTCs scale, with just 20 items and with excellent psychometric properties, is recommended. Having a short scale is key when considering the implementation of the scale in clinical practice to develop person-centred pathways and more comprehensive care plans.


Asunto(s)
Diabetes Mellitus Tipo 2 , Humanos , Adulto , Persona de Mediana Edad , Anciano , Anciano de 80 o más Años , Estudios Transversales , Proyectos Piloto , Psicometría , Reproducibilidad de los Resultados , Reino Unido
15.
BMJ Open ; 14(9): e088773, 2024 Sep 20.
Artículo en Inglés | MEDLINE | ID: mdl-39306353

RESUMEN

INTRODUCTION: Optimising the management of chronicity has been a global challenge for decades. Individuals with long-term conditions (LTCs) and their families live with them for years. Thus, it is necessary to include both of their perspectives in the management and adaptation of the interventions proposed. The psychometric properties of the living with LTCs scale from the perspective of the family caregiver are unknown. The objective of the present study is to describe the psychometric properties of the EC-PC-Fam in a Spanish-speaking population. METHODS: An observational, cross-sectional study was performed with a retest of part of the sample. The fit of the model was optimised with a factorial analysis, and the psychometric properties were verified. RESULTS: A sample of 311 caregivers was recruited. Most of them were women (68.2%) and had a mean age of 58.29±9.91 years (range: 32-84 years). The initial version did not obtain acceptable fit scores. To improve the fit, different versions were tested, refining the distribution of the items until optimisation was reached in V.10 (19 items). Cronbach's alpha was 0.81 for the scale as a whole. The intraclass correlation coefficient was 0.77. The EC-PC-Fam scale is strongly and inversely correlated with a scale that measures the burden of the caregiver (rs=-0.46), and moderately related to the health-related quality of life (rs=0.373) and social support (rs=0.38). CONCLUSIONS: The EC-PC-Fam scale from a family perspective is defined as a promising tool for promoting personalised care and for optimising the management of LTCs, and a new approach that includes family caregivers is proposed for clinical practice. The scale is an instrument with a moderate fit and optimum psychometric properties to measure living with LTCs from the perspective of a family caregiver. New validation studies are recommended to verify the fit of the proposed factorial solution.


Asunto(s)
Cuidadores , Psicometría , Humanos , Cuidadores/psicología , Femenino , Masculino , Persona de Mediana Edad , Estudios Transversales , Anciano , Adulto , Anciano de 80 o más Años , España , Enfermedad Crónica/terapia , Encuestas y Cuestionarios , Reproducibilidad de los Resultados , Calidad de Vida , Análisis Factorial
16.
BMJ Open ; 14(4): e079852, 2024 Apr 25.
Artículo en Inglés | MEDLINE | ID: mdl-38670621

RESUMEN

OBJECTIVE: To understand the physical activity and mental health of individuals living with long-term conditions during the COVID-19 pandemic. DESIGN: A sequential explanatory mixed-methods study with two phases: phase 1: quantitative survey and phase 2: qualitative follow-up interviews. SETTING: For the quantitative phase, an online survey was launched in March 2021, using Microsoft Forms. For the qualitative phase, in-depth semistructured interviews were conducted via online. PARTICIPANTS: 368 adults over 18 years old living in the UK with at least one long-term condition completed the survey. Interviews were conducted in a subsample of participants from the previous quantitative phase, with 26 people. Data were analysed using thematic analysis. RESULTS: Responses from the survey showed that people with one long-term condition were significantly more physically active and spent less time sitting, than those with two or more conditions, presenting with significantly higher well-being (p<0.0001), and lower levels of anxiety (p<0.01), and depression (p<0.0001). Interviews found that people developed a range of strategies to cope with the impact of changeability and the consequences of their long-term condition on their physical activity. CONCLUSIONS: The number of long-term conditions influenced physical activity and how people coped with their condition during COVID-19. Findings will inform policy developments in preparation for future pandemics to support and remain people to remain physically active and mental health.


Asunto(s)
COVID-19 , Ejercicio Físico , Salud Mental , Multimorbilidad , Humanos , COVID-19/epidemiología , COVID-19/psicología , Masculino , Ejercicio Físico/psicología , Femenino , Persona de Mediana Edad , Adulto , Anciano , SARS-CoV-2 , Reino Unido/epidemiología , Ansiedad/epidemiología , Depresión/epidemiología , Encuestas y Cuestionarios , Investigación Cualitativa , Pandemias , Adaptación Psicológica
18.
PLoS One ; 18(7): e0285785, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37428782

RESUMEN

INTRODUCTION: Regular physical activity is a strategy that is effective in the physical management of long term conditions. The COVID-19 pandemic, led to disruption of physical activity routines for many people with long term conditions. It is important, to understand the experiences of people with long term conditions regarding physical activity during COVID-19 to enable future identification of strategies to mitigate the impact of restrictions on health. OBJECTIVE: To explore perceptions and experiences of people with long term conditions of the impact of the UK Government physical distancing restrictions on their physical activity participation during the COVID-19 pandemic. METHODS: A qualitative study, with in depth videoconference semi-structured interviews were conducted between January and April 2022, with 26 adults living with at least one long term condition in the UK. Data were managed in analytical matrices within Excel and data analysis was conducted using thematic analysis. RESULTS: Two main themes were developed, explaining how participants managed their physical activity during COVID19 lockdowns, and based on those experiences, what they considered should be in place should another lockdown occur:1) COVID-19 and physical activity: Losses, opportunities and adapting to new formats; and 2) Micro, meso, and macro contexts: creating the right conditions for physical activity support in future pandemics. CONCLUSIONS: This study provides information on how people with long term conditions managed their condition during the COVID-19 pandemic and generates new understanding of how physical activity routines changed. These findings will be used to inform stakeholder engagement meetings with individuals with long term conditions and local, regional, and national policy makers, to co-produce recommendations that will help people living with long term conditions remain active during and after COVID-19 and other pandemics.


Asunto(s)
COVID-19 , Adulto , Humanos , COVID-19/epidemiología , Salud Mental , Pandemias , Control de Enfermedades Transmisibles , Ejercicio Físico
19.
Parkinsonism Relat Disord ; 96: 1-5, 2022 03.
Artículo en Inglés | MEDLINE | ID: mdl-35093852

RESUMEN

AIM: To analyze the responsiveness and interpretability of the Living with Chronic Illness Scale in patients with Parkinson's disease (LW-CI-PD). METHODS: Longitudinal, international study, with a convenience sample of 153 PD Spanish and Latin-American patients assessed at baseline and one year later. The LW-CI-PD and other clinical measures were applied. For responsiveness, Wilcoxon-Mann-Whitney test of differences, correlation of change between rating scales, standard error of difference, relative change, Cohen's effect size and standardized response mean of LW-CI-PD were computed. The minimally clinical important difference was calculated using anchor- (applying the Patient Global Impression of Severity) and distribution-based methods. A triangulation of interpretability indexes was performed to determine the range of the minimally clinical important difference values. RESULTS: The LW-CI-PD scored 65.7 (11.7, range: 33-101) at baseline, and 68.6 (10.3, range: 33-102) one year later (p < 0.001). Change in LW-CI-PD correlated -0.26 with change in psychosocial status, 0.18 with change in motor function and -0.15 with change in social support. Responsiveness statistics were: relative change = 4.5%; effect size = 0.25; standardized response mean = 0.46. Using PGI-S as anchor, 29 patients worsened, and the value of minimally clinical important difference for worsening in LW-CI-PD total score was 4.7. Minimally clinical important difference values using distribution-based methods were between 4.5 (1 standard error of measurement) and 10.4 (10% of total score), with a mean of 6.9. CONCLUSIONS: Our study suggest the LW-CI-PD is responsive to changes over time. The use of different methods for calculating the minimally clinical important difference allows to determine a range of the real change for the LW-CI-PD.


Asunto(s)
Enfermedad de Parkinson , Enfermedad Crónica , Humanos , Estudios Longitudinales , Psicometría/métodos , Reproducibilidad de los Resultados , Índice de Severidad de la Enfermedad
20.
Cancer Nurs ; 45(1): E134-E145, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-33284148

RESUMEN

BACKGROUND: Cancer survivors (CSs) have needs that can negatively impact their quality of life (QoL). Oncology nurses play a key role in providing comprehensive care in cancer survivorship, although little is known about their impact on health outcomes. OBJECTIVE: The aim of this study was to determine the effectiveness of nursing interventions to improve QoL and satisfaction with care of CSs. METHODS: A systematic review was conducted. PubMed, CINAHL, PsycINFO, and Cochrane databases were searched for experimental studies. The Joanna Briggs Institute Checklist for Randomized Controlled Trials was used to verify the quality of the studies (Prospero reference: CRD42020148294). RESULTS: Of the 8 clinical trials eligible for inclusion, 5 demonstrated that interventions conducted by nurses improved the overall QoL or some of its domains in CSs. The included studies focused on short-term survival; no studies in long-term CSs were identified. Two studies assessed satisfaction with care of survivors, obtaining positive results. CONCLUSIONS: Nursing interventions seem to improve the QoL of short-term CSs. However, because of the low number of studies identified, the findings of this systematic review should be interpreted with caution. IMPLICATIONS FOR PRACTICE: Further studies are necessary to strengthen the implementation of effective nursing intervention in cancer practice. Research should particularly be conducted with long-term CSs as there is lack of data on this specific stage of cancer.


Asunto(s)
Supervivientes de Cáncer , Neoplasias , Humanos , Neoplasias/terapia , Satisfacción Personal , Calidad de Vida , Sobrevivientes
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