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Reflections on communication of disease prognosis and life expectancy by patients with colorectal cancer undergoing palliative care: a qualitative study.

ABSTRACT: OBJECTIVES:Patients with colorectal cancer undergoing palliative treatment receive extensive treatment-related information throughout their disease trajectory. We aimed to explore the experiences of patients with incurable colorectal cancer while in palliative care and their reflections on the information provided by physicians and nurses. Our main focus was the patients' thoughts about how information about disease status and life expectancy was communicated, from the first time that they were informed about the incurable nature of their disease through to postsurgery palliative treatment. SETTINGS:Patients with colorectal cancer receiving palliative chemotherapy. RESEARCH DESIGN:We used a qualitative approach, and the data were analysed by qualitative content analysis. PARTICIPANTS:20 patients (34-75 years of age) were included in the study; 12 received first-line chemotherapy and 8 received second-line chemotherapy. Eleven patients were treated by oncologists, and nine were treated by junior physicians. RESULTS:Data-driven empirical analysis identified three themes: (1) inadequate information during the initial phase of the disease trajectory; (2) hope and information further into the disease trajectory and (3) personal, professional and organisational factors that influenced information and communication throughout the disease trajectory. CONCLUSION:The participants' experience of being told for the first time that they had an incurable disease was perceived as inadequate, while postsurgery palliative chemotherapy, physicians and nurses offered hope. The participants preferred customised information about their treatment and likely future prospects and physicians and nurses who took a holistic and compassionate approach focusing on their lifeworld. To be a sensitive, holistic and compassionate physician or nurse requires knowledge and confidence. To achieve this requires training and guidance at universities and in hospitals.

SUBMITTER: Rohde G

PROVIDER: S-EPMC6429716 | biostudies-literature | 2019 Mar

REPOSITORIES: biostudies-literature

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Reflections on communication of disease prognosis and life expectancy by patients with colorectal cancer undergoing palliative care: a qualitative study.

Rohde Gudrun G Söderhamn Ulrika U Vistad Ingvild I

BMJ open 20190307 3

<h4>Objectives</h4>Patients with colorectal cancer undergoing palliative treatment receive extensive treatment-related information throughout their disease trajectory. We aimed to explore the experiences of patients with incurable colorectal cancer while in palliative care and their reflections on the information provided by physicians and nurses. Our main focus was the patients' thoughts about how information about disease status and life expectancy was communicated, from the first time that th ...[more]

PMID: 30850402

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Project description:ObjectiveTo identify and summarise evaluated interventions aiming to improve the communication of palliative care (PC) and end-of-life (EoL) issues in physicians caring for cancer patients. Such interventions are needed with regard to the aim of an earlier communication of those issues in oncology daily practice, which is associated with a range of benefits for patients and caregivers but is often impeded by physicians' communication insecurities.DesignSystematic review based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.Data sourcesRelevant publications were systematically searched in MEDLINE, PsycINFO, CINAHL and Web of Science databases in September 2020 with an update in July 2021.Eligibility criteriaWe included publications reporting a quantitative evaluation of a communication intervention on one or more PC/EoL issues with a communication-related main outcome. Target group had to be physicians caring for cancer patients non-specialist in PC.Data extraction and synthesisTwo independent raters extracted intervention characteristics, publication characteristics and publication quality. Results were narratively synthesised.Results24 publications reporting 22 interventions were included. 13 publications reported randomised controlled trials. A majority of the interventions addressed one specific PC/EoL issue, most often breaking bad news. Teaching strategies mostly involved role-plays. Target group were mainly oncologists. In addition to self-reported outcome measurements for evaluation, most publications also reported the use of external rating data. All but one publication reported significant intervention effects on at least one outcome parameter. Publication quality was overall moderate.ConclusionsThe empirically tested communication interventions on PC/EoL issues seem to effectively improve physicians' communication. Future interventions should focus on other issues than breaking bad news, such as preparing for the future. Target group should also be organ-specific oncologists, as all primary caring physicians are responsible for timely communication. Our risk-of-bias assessment revealed some weaknesses, indicating that more high-quality studies for evaluation are needed.Prospero registration numberCRD42020191054.

Project description:BACKGROUND:Because of practice variation and new developments in palliative pediatric care, the Dutch Association of Pediatrics decided to develop the clinical practice guideline (CPG) palliative care for children. With this guideline, the association also wanted to precipitate an attitude shift towards shared decision-making (SDM) and therefore integrated SDM in the CPG Palliative care for children. The aim was to gain insight if integrating SDM in CPGs can potentially encourage pediatricians to practice SDM. Its objectives were to explore pediatricians' attitudes and thoughts regarding (1) recommendations on SDM in CPGs in general and the guideline Palliative care for children specifically; (2) other SDM enhancing strategies or tools linked to CPGs. METHODS:Semi-structured face-to-face interviews. Pediatricians (15) were recruited through purposive sampling in three university-based pediatric centers in the Netherlands. The interviews were audio-recorded and transcribed verbatim, coded by at least two authors and analyzed with NVivo. RESULTS:Some pediatricians considered SDM a skill or attitude that cannot be addressed by clinical practice guidelines. According to others, however, clinical practice guidelines could enhance SDM. In case of the guideline Palliative care for children, the recommendations needed to focus more on how to practice SDM, and offer more detailed recommendations, preferring a recommendation stating multiple options. Most interviewed pediatricians felt that patient decisions aids were beneficial to patients, and could ensure that all topics relevant to the patient are covered, even topics the pediatrician might not consider him or herself, or deems less important. Regardless of the perceived benefit, some pediatricians preferred providing the information themselves instead of using a patient decision aid. CONCLUSIONS:For clinical practice guidelines to potentially enhance SDM, guideline developers should avoid blanket recommendations in the case of preference sensitive choices, and SDM should not be limited to recommendations on non-treatment decisions. Furthermore, preference sensitive recommendations are preferably linked with patient decision aids.

Project description:BackgroundFew studies have examined the spiritual environment of parents of children receiving palliative care in Southern European countries, which are mostly characterized by secularization (or the abandonment of traditional religiosity) and an increase of cultural and religious diversities resulting in a much broader spectrum of spiritual and religious beliefs. This study aimed to explore the parents' own spirituality, religiosity, and philosophy of life in coping with the care of their child with palliative needs.MethodsQualitative interviews of 14 parents of children included in a palliative care program in a pediatric hospital in Barcelona, Spain. Inclusion criteria were parents of children who have been cared for the palliative care program for a minimum of 3 months and who displayed a willingness to talk about their personal experiences and gave written consent. Interviews were audio-recorded, transcribed by an independent service, and analyzed on a case-by-case basis using Interpretative Phenomenological Analysis.ResultsThe three domains identified were life philosophy, relational, and transcendent. Life philosophy included principles that guided parents' decision-making, and how the onset of their child's serious illness had promoted a change in their values. Relational was focused on how they perceived themselves (e.g. motherhood), others (e.g. one's own child exceptionality), and the way they believed others perceived and supported them (e.g. relatives, friends, and healthcare providers). The transcendent domain involved God-related concepts, divinity and divine intervention (e.g. a miracle as an interpretive framework for that which cannot be explained within scientific knowledge limitations).ConclusionsInflexible categories identifying parents as having a particular religious faith tradition are not sufficient to capture the interrelation of knowledges (ethical, religious, scientific) that each parent generates when faced with their child receiving palliative care. Clinicians should explore parents' spirituality in an individualized way that responds to the uniqueness of their experiential process.

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Reflections on communication of disease prognosis and life expectancy by patients with colorectal cancer undergoing palliative care: a qualitative study.

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Reflections on communication of disease prognosis and life expectancy by patients with colorectal cancer undergoing palliative care: a qualitative study.

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