Micro-meso-macro practice tensions in using patient-reported outcome and experience measures in hospital palliative care

This article applies a micro-meso-macro analytical framework to understand clinicians’ experiences and perspectives of using patient-reported outcome and experience measures (PROMs and PREMs) in routine hospital-based palliative care. We structure our discussion through qualitative analysis of a design and implementation project for using an electronic tablet-based tool among hospital-based palliative clinicians to assess patients’ and their family caregivers’ quality of life concerns and experiences of care. Our analysis identified three categories of practice tensions shaping clinicians’ use of PROMs and PREMs in routine care: tensions surrounding implementation, tensions in standardization and quantification, and tensions that arose from scope of practice concerns. Our findings highlight that clinicians necessarily work within the confluence of multiple system priorities, that navigating these priorities can result in irreducible practice tensions, and that awareness of these tensions is a critical consideration when integrating PROMs and PREMs into routine practice

Delivering and participating in a psycho- educational intervention for family caregivers during palliative home care: a qualitative study from the perspectives of health professionals and family caregivers

Abstract Background: Family caregivers in palliative care have a need for knowledge and support from health professionals, resulting in the need for educational and supportive interventions. However, research has mainly focused on the experiences of family caregivers taking part in interventions. To gain an increased understanding of complex interventions, it is necessary to integrate the perspectives of health professionals and family caregivers. Hence, the aim of this study is to explore the perspectives of health professionals and family caregivers of delivering and participating in a psycho-educational intervention in palliative home care. Methods: A psycho-educational intervention was designed for family caregivers based on a theoretical framework describing family caregiver's need for knowing, being and doing. The intervention was delivered over three sessions, each of which included a presentation by healthcare professionals from an intervention manual. An interpretive descriptive design was chosen and data were collected through focus group discussions with health professionals and individual interviews with family caregivers. Data were analysed using framework analysis

Review: Janice M. Morse & Linda Niehaus (2009). Mixed method design: principles and procedures

Mixed-Method-Designs, in denen quantitative und qualitative Methoden Verwendung finden, erfreuen sich zunehmender Beliebtheit für die Untersuchung komplexer Phänomene. Die vorliegende Besprechung beschäftigt sich in diesem Zusammenhang mit dem Buch "Mixed Method Design: Principles and Procedures" von Janice M. MORSE und Linda NIEHAUS, die für solche Designs Kern- und Ergänzungskomponenten zu identifizieren versuchen. Hierzu differenzieren sie zwischen Projekten, die einer eher deduktiven oder einer eher induktiven Logik folgen. Beide Komponenten können dabei simultan oder aufeinander folgend zum Einsatz kommen. In meiner Besprechung setze ich mich mit dem Ansatz von MORSE und NIEHAUS auseinander insbesondere mit Blick auf die Reflexion von möglichen Validitätsrisiken von Mixed-Method-Designs, die binäre Modellierung (induktiv-deduktiv) und in Bezug auf aktuelle methodische Trends in Richtung einer generischen Konzeption qualitativer Sozialforschung.Mixed method design related to the use of a combination of methods, usually quantitative and qualitative, is increasingly used for the investigation of complex phenomena. This review discusses the book, "Mixed Method Design: Principles and Procedures," by Janice M. MORSE and Linda NIEHAUS. A distinctive feature of their approach is the consideration of mixed methods design out of a core and a supplemental component. In order to define these components they emphasize the overall conceptual direction of the project in terms of the theoretical drive, which is either inductive or deductive. The synchronization of the two components is either performed simultaneously or sequentially. This review particularly highlights reflections of MORSE and NIEHAUS's approach related to the significance of considering the risk of validity threats in mixed methods design, issues regarding building mixed method design on the binary of inductive versus deductive designs, issues related to "theory," and trends in methodological development such as a tendency to focus on generic qualitative research.Para la investigación de fenómenos complejos se usa cada vez más el diseño de método mixto, relacionado con el uso de una combinación de métodos, usualmente cuantitativos y cualitativos. Esta reseña analiza el libro "Mixed Method Design: Principles and Procedures" de Janice M. MORSE y Linda NIEHAUS. Un rasgo distintivo de su enfoque es la consideración del diseño de método mixto fuera de un núcleo y un componente complementario. Con el fin de definir estos elementos destacan la dirección general conceptual del proyecto en términos de la unidad teórica, que puede ser inductiva o deductiva. La sincronización de los dos componentes se realiza simultánea o secuencialmente. Esta reseña destaca particularmente las reflexiones del enfoque de MORSE y NIEHAUS relacionadas a la importancia de considerar el riesgo de amenazas a la validez en el diseño de métodos mixtos, preguntas relacionadas a la construcción de diseño de método mixto en lo binario de lo inductivo contra lo deductivo, temas relacionados a "teoría" y a las tendencias en el desarrollo metodológico como la tendencia a enfocarse en la investigación cualitativa genérica

Review: Janice M. Morse & Linda Niehaus (2009). Mixed Method Design: Principles and Procedures

Mixed method design related to the use of a combination of methods, usually quantitative and qualitative, is increasingly used for the investigation of complex phenomena. This review discusses the book, "Mixed Method Design: Principles and Procedures," by Janice M. MORSE and Linda NIEHAUS. A distinctive feature of their approach is the consideration of mixed methods design out of a core and a supplemental component. In order to define these components they emphasize the overall conceptual direction of the project in terms of the theoretical drive, which is either inductive or deductive. The synchronization of the two components is either performed simultaneously or sequentially. This review particularly highlights reflections of MORSE and NIEHAUS's approach related to the significance of considering the risk of validity threats in mixed methods design, issues regarding building mixed method design on the binary of inductive versus deductive designs, issues related to "theory," and trends in methodological development such as a tendency to focus on generic qualitative research. URN: http://nbn-resolving.de/urn:nbn:de:0114-fqs110115

Review: Janice M. Morse & Linda Niehaus (2009). Mixed Method Design: Principles and Procedures

Mixed method design related to the use of a combination of methods, usually quantitative and qualitative, is increasingly used for the investigation of complex phenomena. This review discusses the book, "Mixed Method Design: Principles and Procedures," by Janice M. MORSE and Linda NIEHAUS. A distinctive feature of their approach is the consideration of mixed methods design out of a core and a supplemental component. In order to define these components they emphasize the overall conceptual direction of the project in terms of the theoretical drive, which is either inductive or deductive. The synchronization of the two components is either performed simultaneously or sequentially. This review particularly highlights reflections of MORSE and NIEHAUS's approach related to the significance of considering the risk of validity threats in mixed methods design, issues regarding building mixed method design on the binary of inductive versus deductive designs, issues related to "theory," and trends in methodological development such as a tendency to focus on generic qualitative research. URN: http://nbn-resolving.de/urn:nbn:de:0114-fqs1101159Para la investigación de fenómenos complejos se usa cada vez más el diseño de método mixto, relacionado con el uso de una combinación de métodos, usualmente cuantitativos y cualitativos. Esta reseña analiza el libro "Mixed Method Design: Principles and Procedures" de Janice M. MORSE y Linda NIEHAUS. Un rasgo distintivo de su enfoque es la consideración del diseño de método mixto fuera de un núcleo y un componente complementario. Con el fin de definir estos elementos destacan la dirección general conceptual del proyecto en términos de la unidad teórica, que puede ser inductiva o deductiva. La sincronización de los dos componentes se realiza simultánea o secuencialmente. Esta reseña destaca particularmente las reflexiones del enfoque de MORSE y NIEHAUS relacionadas a la importancia de considerar el riesgo de amenazas a la validez en el diseño de métodos mixtos, preguntas relacionadas a la construcción de diseño de método mixto en lo binario de lo inductivo contra lo deductivo, temas relacionados a "teoría" y a las tendencias en el desarrollo metodológico como la tendencia a enfocarse en la investigación cualitativa genérica. URN: http://nbn-resolving.de/urn:nbn:de:0114-fqs1101159Mixed-Method-Designs, in denen quantitative und qualitative Methoden Verwendung finden, erfreuen sich zunehmender Beliebtheit für die Untersuchung komplexer Phänomene. Die vorliegende Besprechung beschäftigt sich in diesem Zusammenhang mit dem Buch "Mixed Method Design: Principles and Procedures" von Janice M. MORSE und Linda NIEHAUS, die für solche Designs Kern- und Ergänzungskomponenten zu identifizieren versuchen. Hierzu differenzieren sie zwischen Projekten, die einer eher deduktiven oder einer eher induktiven Logik folgen. Beide Komponenten können dabei simultan oder aufeinander folgend zum Einsatz kommen. In meiner Besprechung setze ich mich mit dem Ansatz von MORSE und NIEHAUS auseinander insbesondere mit Blick auf die Reflexion von möglichen Validitätsrisiken von Mixed-Method-Designs, die binäre Modellierung (induktiv-deduktiv) und in Bezug auf aktuelle methodische Trends in Richtung einer generischen Konzeption qualitativer Sozialforschung. URN: http://nbn-resolving.de/urn:nbn:de:0114-fqs110115

Bereaved Family Members' Satisfaction with Care during the Last Three Months of Life for People with Advanced Illness

BACKGROUND: Studies evaluating the end-of-life care for longer periods of illness trajectories and in several care places are currently lacking. This study explored bereaved family members' satisfaction with care during the last three months of life for people with advanced illness, and associations between satisfaction with care and characteristics of the deceased individuals and their family members. METHODS: A cross-sectional survey design was used. The sample was 485 family members of individuals who died at four different hospitals in Sweden. RESULTS: Of the participants, 78.7% rated the overall care as high. For hospice care, 87.1% reported being satisfied, 87% with the hospital care, 72.3% with district/county nurses, 65.4% with nursing homes, 62.1% with specialized home care, and 59.6% with general practitioners (GPs). Family members of deceased persons with cancer were more likely to have a higher satisfaction with the care. A lower satisfaction was more likely if the deceased person had a higher educational attainment and a length of illness before death of one year or longer. CONCLUSION: The type of care, diagnoses, length of illness, educational attainment, and the relationship between the deceased person and the family member influences the satisfaction with care

Psychometric evaluation of the anticipatory grief scale in a sample of family caregivers in the context of palliative care

INTRODUCTION: In palliative care, family caregivers are often faced with experiences of grief in anticipation of the loss of a close person. An instrument designed to measure this form of grief is the Anticipatory Grief Scale, which includes 27 items and has been used in several studies in various contexts. However, the instrument has not been validated. AIM: The aim was to evaluate the psychometric properties, focusing on the factor structure, of the Anticipatory Grief Scale in a sample of family caregivers in palliative care. METHODS: The study had a cross-sectional design. Data were collected from an intervention study in palliative home care that took place between 2013 and 2014. In total, 270 family caregivers in palliative care completed a baseline questionnaire, including the Anticipatory Grief Scale. The factor structure of the scale was evaluated using exploratory factor analysis. RESULTS: The initial factor analysis suggested a four-factor solution, but, due to weak communalities, extensive crossloadings, and item inconsistencies, the model was problematic. Further analysis supported that the scale should be reduced to 13 items and two factors. The two subscales captured the behavioral and emotional reactions of grief in family caregivers in palliative care and were named Behavioral reactions and Emotional reactions. This modified version will hereafter be named AGS-13. CONCLUSIONS: This validation study of the Anticipatory Grief Scale resulted in a revised two-factor model, AGS-13, that appears to be promising for use in palliative care but needs to be tested further

Recruiting participants to a randomized controlled trial testing an intervention in palliative cancer care - The perspectives of health care professionals

PURPOSE: The recruitment of participants to randomized controlled trials (RCTs) in palliative cancer care by health care professionals is often unsuccessful, which could result in failure to achieve study power. The purpose of this paper is to describe how health care professionals experienced recruiting patients and family caregivers to an RCT in palliative cancer care. METHODS: The study had a qualitative explorative design. Ten palliative home care settings were involved in the RCT and data were generated through focus group discussions and interviews with health care professionals who were responsible for the recruitment. The transcripts were analyzed with interpretive descriptive principles. RESULTS: The experiences of the health care professionals reveal that communicating the RCT-design to patients and family caregivers was a challenging part of the recruitment but was considered a process of learning over time. The delicate situation that participants were living under added to the challenge and health care professionals believed that the randomized design was contrary to their normal approach to always offer the best possible support. CONCLUSIONS: The results contribute valuable knowledge for future trials in palliative cancer care. To promote successful recruitment, health care professionals may be in need of more training to improve their communication skills and it may be necessary to consider other research designs than the RCT