BackgroundColorectal cancer is diagnosed in approximately 500,000 patients each year in Europe, leading to a high number of patients having to cope with the consequences of resection for colorectal... Show moreBackgroundColorectal cancer is diagnosed in approximately 500,000 patients each year in Europe, leading to a high number of patients having to cope with the consequences of resection for colorectal cancer. As treatment options tend to grow, more information on the effects of these treatments is needed to engage in shared decision-making. This study aims to explore the impact of resection for colorectal cancer on patients' daily life.MethodsPatients (≥18 years of age) who underwent an oncological colorectal resection between 2018 and 2021 were selected. Purposeful sampling was used to include patients who differed in age, comorbidity conditions, types of (neo)adjuvant therapy, postoperative complications and the presence/absence of a stoma. Semi-structured interviews were conducted, guided by a topic guide. Interviews were fully transcribed and subsequently thematically analysed using the framework approach. Analyses were carried out using the following predefined themes: (1) daily life and activities; (2) psychological functioning; (3) social functioning; (4) sexual functioning; and (5) healthcare experiences.ResultsSixteen patients with a follow-up period of between 0.6 and 4.4 years after surgery were included in this study. Participants reported several challenges experienced because of poor bowel function, a stoma, chemotherapy-induced neuropathy, fear of recurrence and sexual dysfunction. However, they reported these as not interfering much with daily life.ConclusionColorectal cancer treatment leads to several challenges and treatment-related health deficits. This is often not recognized by generic patient-reported outcome measures, but the findings on treatment-related health deficits presented in this study contain valuable insights which might contribute to improving colorectal cancer care, shared decision making and value-based health care. Show less
Objectives: The benefit-risk ratio of many interventions remains unclear in older adults with dementia. Efforts for more representative trial inclusion are made; however, recruiting and... Show moreObjectives: The benefit-risk ratio of many interventions remains unclear in older adults with dementia. Efforts for more representative trial inclusion are made; however, recruiting and particularly gaining informed consent remains complex. For research participation, dementia compels the designation of a legal guardian (LG) to give proxy consent. To advance future trial development, we aimed to provide more insights into the factors that affect the proxy decision-making process in dementia research. Design: A qualitative analysis of semi-structured interviews about proxy decision-making on participation in dementia research. Setting and Participants: LGs of nursing home residents that gave (n = 19) and refrained from giving (n = 18) proxy consent for a clinical trial (the Danton study) in the Netherlands. Methods: Verbatim transcripts were thematically analyzed by using a preliminary deductive framework with room for induction of additional emerging themes, being an overall abductive approach. Based on that theme list, related factors of the decision-making process were grouped into overarching levels and merged into a step-by-step process. Results: When discussing proxy decision-making on the participation of an older adult with dementia in a clinical trial, LGs described interconnected factors on the level of the study and patient. Past experiences and attitudes of the LG influenced the weighing of these study- and patient-related factors, leading to a preliminary decision. Other proxies and treating health care professionals (HCPs) were named as important other stakeholders of the decision-making process. Conclusions and Implications: When giving proxy consent for research participation, LGs weigh study- and patient-related factors, leading to an initial benefit-risk evaluation. This weighing process is influenced by LG-related factors and can be modulated by other proxies or treating HCPs, leading to a definitive decision. Although insights into these underlying mechanisms could facilitate the proxy decision-making process for both LGs and researchers, treating HCPs could act as an independent party. (c) 2023 The Authors. Published by Elsevier Inc. on behalf of AMDA - The Society for Post-Acute and Long-Term Care Medicine. This is an open access article under the CC BY license (http:// creativecommons.org/licenses/by/4.0/). Show less
Namiiro, F.B.; Nolens, B.; Rujumba, J.; Kiguli, S.; Batte, A.; Akker, T. van den 2023
Objectives We sought to understand the facilitators and barriers impacting utilisation of follow-up services for children born preterm as perceived by parents in a low-resource setting.Methods We... Show moreObjectives We sought to understand the facilitators and barriers impacting utilisation of follow-up services for children born preterm as perceived by parents in a low-resource setting.Methods We conducted a qualitative study at Mulago Hospital, Uganda, with parents of children born preterm and aged 22-38 months at the time of the study. We collected data using five in-depth interviews and four focus group discussions. Data were analysed using thematic analysis informed by the social-ecological model.Results Ten subthemes emerged that could be grouped into three main themes: (1) Individual: parents' knowledge, parenting skills, perception of follow-up and infant's condition; (2) Relationship: support for the mother and information sharing; (3) Institution: facility setup, cost of care, available personnel and distance from the facility. Parents of preterm infants perceived receiving timely information, better understanding of prematurity and its complications, support from spouses, availability of free services and encouragement from health workers as facilitators for utilisation of follow-up services. Limited male involvement, parents' negative perception of follow-up, stable condition of infant, health facility challenges especially congestion at the hospital, distance and care costs were key barriers.Conclusion An interplay of facilitators and barriers at individual, interpersonal and health system levels encourage or deter parents from taking their preterm children for follow-up services. Improving utilisation of services will require educating parents on the importance of follow-up even when children are not sick, eliciting maternal support from spouses and peers and addressing health system gaps that make follow-up unattractive and costly. Show less
Rickstal, R. van; Vleminck, A. de; Aldridge, M.D.; Morrison, S.R.; Koopmans, R.T.; Steen, J.T. van der; ... ; Block, L. van den 2019
Introduction and Aim The British Columbia Adult Haemophilia Team recently adopted a patient-centred care approach. The team presented visual information on an individual's pharmacokinetic profile... Show moreIntroduction and Aim The British Columbia Adult Haemophilia Team recently adopted a patient-centred care approach. The team presented visual information on an individual's pharmacokinetic profile and bleed history and encouraged patients to participate in treatment decisions. This qualitative study explored how this approach changed patients' understanding of haemophilia and how it facilitated them to make treatment decisions. Methods We interviewed 18 males with mild, moderate or severe haemophilia, using a convenience sample from the adult haemophilia clinic at St. Paul's hospital in Vancouver, Canada. Interviews were recorded and transcribed verbatim and analyzed using descriptive content analysis. Results Most participants reported that reviewing visual information with the Clinic Team helped them in their communication with their care providers during their annual review clinic appointment. Despite this improved communication, for some the most important feature of their treatment was that they had switched from on-demand treatment to prophylactic treatment in recent years and were able to prevent bleeds. Almost half of the participants reported that the visual information presented increased their understanding of haemophilia and the pharmacokinetics of coagulation factor. Three patients improved their treatment adherence or had changed their prophylaxis schedules based on this. Most participants felt that they were involved in decision-making about their treatment schedule, which they appreciated. On the other hand, two participants thought the Clinic Team should make these decisions. Conclusion Participants perceived the patient-centred prophylaxis approach helpful because it enhanced communication with the Clinic Team, increased their understanding of haemophilia and pharmacokinetics of coagulation factor and facilitated treatment decisions. Show less
Dekking, S.A.S.; Graaf, R. van der; Kars, M.C.; Beishuizen, A.; Vries, M.C. de; Delden, J.J.M. van 2015
