Nuestros investigadores

Carla Manuela Trinchete Reigada

Publicaciones científicas más recientes (desde 2010)

Autores: Johnson, M. J.; Jamali, A.; Ross, J.; et al.
Revista: THORAX
ISSN 0040-6376  Vol. 73  Nº 9  2018  págs. 880 - 883
The inter-rater/test-retest reliability and construct validity of a palliative care needs assessment tool in interstitial lung disease (NAT:PD-ILD) were tested using NAT:PD-ILD-guided video-recorded consultations, and NAT:PD-ILD-guided consultations, and patient and carer-report outcomes (St George's Respiratory Questionnaire (SGRQ)-ILD, Carer Strain Index (CSI)/Carer Support Needs Assessment Tool (CSNAT)). 11/16 items reached at least fair inter-rater agreement; 5 items reached at least moderate test-retest agreement. 4/6 patient constructs demonstrated agreement with SGRQ-I scores (Kendall's tau-b, 0.24-20.36; P<0.05). 4/7 carer constructs agreed with the CSI/CSNAT items (kappa, 0.23-20.53). The NAT:PD-ILD is reliable and valid. Clinical effectiveness and implementation are to be evaluated. The tool is available through the The National Institute for Health and Care Excellence (NICE).
Autores: Carvajalino, S.; Reigada, Carla; Johnson, M. J. ; et al.
ISSN 1471-2466  Vol. 18  Nº 1  2018  págs. 78
Background Those affected by advanced fibrotic interstitial lung diseases have limited treatment options and in the terminal stages, the focus of care is on symptom management. However, quantitatively, little is known about symptom prevalence. We aimed to determine the prevalence of symptoms in Progressive Idiopathic Fibrotic Interstitial Lung Disease (PIF-ILD). Methods Searches on eight electronic databases including MEDLINE for clinical studies between 1966 and 2015 where the target population was adults with PIF-ILD and for whom the prevalence of symptoms had been calculated. Results A total of 4086 titles were screened for eligibility criteria; 23 studies were included for analysis. The highest prevalence was that for breathlessness (54¿98%) and cough (59¿100%) followed by heartburn (25¿65%) and depression (10¿49%). The heterogeneity of studies limited their comparability, but many of the symptoms present in patients with other end-stage disease were also seen in PIF-ILD. Conclusions This is the first quantitative review of symptoms in people with Progressive Idiopathic Fibrotic Interstitial Lung Diseases. Symptoms are common, often multiple and have a comparable prevalence to those experienced in other advanced diseases. Quantification of these data provides valuable information to inform the allocation of resources.
Autores: Reigada, Carla; Papadopoulos, A.; Boland, J. W.; et al.
Revista: THORAX
ISSN 0040-6376  Vol. 72  Nº 11  2017  págs. 1049 - 1051
A Needs Assessment Tool (NAT) was developed previously to help clinicians identify the supportive/palliative needs of people with interstitial lung disease (ILD) (NAT:ILD). This letter presents barriers and facilitators to clinical implementation. Data from (1) a focus group of respiratory clinicians and (2) an expert consensus group (respiratory and palliative clinicians, academics, patients, carers) were analysed using Framework Analysis. Barriers related to resources and service reconfiguration, and facilitators to clinical need, structure, objectiveness, flexibility and benefits of an `aide-memoire¿. Identified training needs included communication skills and local service knowledge. The NAT:ILD was seen as useful, necessary and practical in everyday practice. The tool is available through the The National Institute for Health and Care Excellence (NICE).
Autores: Boland, J.; Reigada, Carla; Yorke, J.; et al.
ISSN 1096-6218  Vol. 19  Nº 5  2016  págs. 549 - 555
Background: Irrreversible interstitial lung disease (ILD) is associated with high morbidity and mortality. Palliative care needs of patients and caregivers are not routinely assessed; there is no tool to identify needs and triage support in clinical practice.Objective: The study objective was to adapt and face/content validate a palliative needs assessment tool for people with ILD.Methods: The Needs Assessment Tool: Progressive Disease-Cancer (NAT:PD-C) was adapted to reflect the palliative care needs identified from the ILD literature and patient/caregiver interviews. Face and content validity of the NAT:PD-ILD was tested using patient/caregiver focus groups and an expert consensus group. Participants in the study were two English tertiary health care trusts' outpatients clinics. There were four focus groups: two patient (n¿=¿7; n¿=¿4); one caregiver (n¿=¿3); and one clinician (n¿=¿8). There was a single caregiver interview, and an expert consensus group¿academics (n¿=¿3), clinicians (n¿=¿9), patients (n¿=¿4), and caregivers (n¿=¿2). Each item in the tool was revised as agreed by the groups. Expert consensus was reached.Results: Overall, the tool reflected participants' experience of ILD. Each domain was considered relevant. Adaptations were needed to represent the burden of ILD: respiratory symptoms (especially cough) and concerns about sexual activity were highlighted. All emphasized assessment of caregiver need as critical, and the role of caregivers in clinical consultations.Conclusions: The NAT:PD-ILD appears to have face and content validity. The inclusion of the family caregiver in the consultation as someone with their own needs as well as a source of information was welcomed. Reliability testing and construct validation of the tool are ongoing.
Autores: Reigada, Carla; Pais-Ribeiro, J. L.; Novellas, A.; et al.
ISSN 0870-9025  Vol. 33  Nº 2  2015  págs. 170 - 178
In palliative care it is important to promote the wellbeing. The aim of this study is to present the creation/validation process of the scale for Capacity to Care in Palliative Care (ECCP). 58 items were created and then discussed and measured by a group of experts and caregivers of PC, using the Content Validity Index and Cognitive Debriefing techniques. The peer¿test reached an agreement on 47 items, none of which obtained a value <3. This study shows that the instrument is endowed with content validity, which allows us to conclude that it is a consistent instrument liable to be applied to the target population.
Autores: Reigada, Carla; Pais-Ribeiro, J. L.; Novellas, A.; et al.
ISSN 2375-4273  Vol. 3  Nº 2  2015  págs. 143
Patients nearing the end of their life are daily confronted with complex decisions. Is essential to ensure the continuity of care outside of the health institutions and, in this sense, a presence of a family member at home able to provide multilevel care has become an important goal/resource for patients and health care teams. Aim: To analyse the literature about roles and tasks of family caregivers of patients in palliative care (PC). Design: A systematic review of the literature published in English, Portuguese and Spanish between 2006 and 2014 was undertaken, in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Data sources: PubMed, PsycInfo, Scopus and SciELO were searched to find studies on the family caregiver's role in palliative care. Results: A total of 13 studies were included and described seven major caregiver roles: to be a caregiver, to be a welfare enhancer, to carry out many tasks, to act as a PC facilitator and be responsible for the continuity of care, to be an apprentice, to be a minimizer/manager of the suffering and to be a decider at the end-of-life. Conclusions: Family caregivers are still the greatest support of patients in end-of-life especially when they wish to be cared for at home. Carers can be considered the core structure for the continuity of care of these patients. Setting out the various carer tasks and roles will contribute for the "family caregiver" agreement concept as well as, will recognize their value as a person who needs to be cared too.
Autores: Reigada, Carla; Pais-Ribeiro, J. L.; Novellas, A.;
ISSN 2165-7386  Vol. 4  Nº 5  2014  págs. 195
Aim: To analyse the literature about educational programs aimed towards empowering caregivers of patients in palliative care (PC) attending to the conceptual difference between programs and psychosocial interventions. Method: Review of the literature published in English, Portuguese and Spanish languages between 01/2009 and 12/2013, supported by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines; PubMed, Scopus and SciELO were searched for studies about caregiver training programs developed in the PC field. 43 Palliative Care Associations listed in the European Association of Palliative Care (EAPC) PC ATLAS were contacted in order to complement this literature review. Results: Eight studies were identified and analysed concerning subject matter, measurement instruments, location, results, strategy and duration of the programs. All educational programs addressed issues related to the context of end of life; Program duration ranged from three weeks to two years, and took place in the community and in hospital or PC centres; all programs evaluated their respective impact using various measurement instruments. Conclusions: This review testifies the lack of publications regarding programs designed and developed to support family caregivers in PC. It is shown that caregivers benefit from support groups and educational programs to promote information and caregiver training, but perhaps the lack of funding for this kind of interventions can affect the caregiver¿s treatment.
Autores: Reigada, Carla; Pais-Ribeiro, J. L.; Novellas, A.; et al.
ISSN 1677-9509  Vol. 13  Nº 1  2014  págs. 159 - 169
It makes no sense to talk about palliative care without referencing a multidisciplinary and interdisciplinary team approach comprising different professionals from different fields, supporting the patient and family (TWYCROSS, 2003). This is our challenge: the challenge to study the psychosocial world of palliative patients and their families, where health care are considered active and centered on the human being. We intend in this paper to contribute to the knowledge of the families in the context of terminal illness using the systemic research done in this area and our empirical knowledge, while researchers and practitioners in their daily work with patients and families in higher distress.
Autores: Reigada, Carla; Ribeiro, E.; Novellas, A.;
ISSN 1134-248X  Vol. 22  Nº 4  2014  págs. 119 - 126
El objetivo de este estudio fue evaluar los factores que pueden influir en la capacidad de que dispone una familia para cuidar de un paciente oncológico que requiere cuidados paliativos. Se trata de un estudio amplio, cualitativo y de observación, respaldado por la Teoría Fundamentada (Grounded Theory) y el uso de la técnica de grupos focales. En el periodo de enero a agosto de 2009 reunimos a 13 familiares de pacientes con enfermedad oncológica incurable y progresiva que estaban siendo atendidos por un servicio de cuidados paliativos de un hospital oncológico situado en el norte de Portugal, separados por 2 grupos focales distintos. Mediante el análisis de lo transcrito del grupo focal se identificaron 4 ejes que aportan factores (categorías), que pueden condicionar la capacidad de cuidar: el eje práctico (ingreso, asistencia técnica, recursos sociales/salud, cuidados paliativos, apoyo psicológico, traslado, gastos de la casa); el eje relacional (los vínculos, la pérdida, la privacidad, la intimidad, el apoyo al cuidador, compartir), el eje de experiencia interna (sentimientos, estrategias de afrontamiento, afecto, sufrimiento, muerte, apoyo psicológico), y la condición del eje de la salud (la recuperación, los síntomas, la información sobre la enfermedad, la vulnerabilidad del cuidador). La construcción de los indicadores identificados en la investigación pueden resultar muy útiles para detectar en una evaluación integral a la familia factores que pueden poner en riesgo la capacidad del grupo familiar para atender al paciente y asegurar la continuidad del manejo por Cuidados Paliativos.
Autores: Reigada, Carla; Pais-Ribeiro, J. L.; Novellas, A.; et al.
Revista: ONCO.NEWS
ISSN 1646-7868  Vol. 26  2014  págs. 32 - 37
This is a critical deliberation about the subject of family in the health context. This text, based mainly on 8 selected scienti c articles and on the book ¿Family Carers in Palliative Care¿, invites us to consider the concept of family in our days and the role this group plays in our society, either as individuals, carers and/or professionals. In each sub-theme you can nd some deep issue because that is, in fact, exactly what we intended to do: to provide food for thought. It is not our intention to outline a theory, neither the judgment of values about what is good and what is not so good. Our intent is to go against what many of us ¿health professionals¿ probably have already felt and considered once: How should we treat and deal with our family¿ caregivers.




Complement: "Scientific and Technological Activities" section International Abstract Reviewer (Completed) 2017 ¿ 15th Congress of the European Association for Palliative Care, Madrid (Spain) 2015- 14th Congress of the European Association for Palliative Care, Copenhagen (Denmark) 2014 - VII National Congress of Palliative Care, Algarve (Portugal) 2013 -13th World Congress of the European Association for Palliative Care, Prague (Czech Republic) 2011 - 12th Congress of the European Association for Palliative Care, Lisbon (Portugal)   Other Positions (Completed) - Fiscal Council chair of the Portuguese Association of Palliative Care (2013 - 2014) - Advisor social worker of the Association "FAS RONDAS", that works with Families Immigrants, Homeless and Prisoners (2008 ¿ 2014) - Advisor social worker of the Portuguese Association for Amyotrophic Lateral Sclerosis (2009 ¿ 2012)
Editorial boards/Referee (On going) - Referee/Reviewer: 1) Revista Cuidados Paliativos (PT); 2) PLOS ONE Journal (UK); 3) Revista Portuguesa de Investigação Comportamental e Social (PT); Medicina Paliativa (ES)