Background Clients facing decision-making for long-term care are in need of support and accessible information. Construction of preferences, including context and calculations, for clients in long-term care is challenging because of the variability in supply and demand. This study considers clients in four different sectors of long-term care: the nursing and care of the elderly, mental health care, care of people with disabilities, and social care. The aim is to understand the construction of preferences in real-life situations. Method Client choices were investigated by qualitative descriptive research. Data were collected from 16 in-depth interviews and 79 client records. Interviews were conducted with clients and relatives or informal caregivers from different care sectors. The original client records were explored, containing texts, letters, and comments of clients and caregivers. All data were analyzed using thematic analysis. Results Four cases showed how preferences were constructed during the decision-making process. Clients discussed a wide range of challenging aspects that have an impact on the construction of preferences, e.g. previous experiences, current treatment or family situation. This study describes two main characteristics of the construction of preferences: context and calculation. Conclusion Clients face diverse challenges during the decision-making process on long-term care and their construction of preferences is variable. A well-designed tool to support the elicitation of preferences seems beneficial.
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The aim of this study was to describe patients' experiences of, and preferences for, surgical wound care discharge education and how these experiences predicted their ability to self-manage their surgical wounds. A telephone survey of 270 surgical patients was conducted across two hospitals two weeks after discharge. Patients preferred verbal (n = 255, 94.8%) and written surgical wound education (n = 178, 66.2%) from medical (n = 229, 85.4%) and nursing staff (n = 211, 78.7%) at discharge. The most frequent education content that patients received was information about follow-up appointments (n = 242, 89.6%) and who to contact in the community with wound care concerns (n = 233, 86.6%). Using logistic regression, patients who perceived that they participated in surgical wound care decisions were 6.5 times more likely to state that they were able to manage their wounds at home. Also, patients who agreed that medical and/or nursing staff discussed wound pain management were 3.1 times more likely to report being able to manage their surgical wounds at home. Only 40% (107/270) of patients actively participated in wound-related decision-making during discharge education. These results uncovered patient preferences, which could be used to optimise discharge education practices. Embedding patient participation into clinical workflows may enhance patients' self-management practices once home.
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Introduction: Success of e-health relies on the extent to which the related technology, such as the electronic device, is accepted by its users. However, there has been limited research on the patients’ perspective on use of e-health-related technology in rehabilitation care. Objective: To explore the usage of common electronic devices among rehabilitation patients with access to email and investigate their preferences regarding their usage in rehabilitation. Methods: Adult patients who were admitted for inpatient and/or outpatient rehabilitation and were registered with an email address were invited to complete an electronic questionnaire regarding current and preferred use of information and communication technologies in rehabilitation care. Results: 190 out of 714 invited patients completed the questionnaire, 94 (49%) female, mean age 49 years (SD 16). 149 patients (78%) used one or more devices every day, with the most frequently used devices were: PC/laptop (93%), smartphone (57%) and tablet (47%). Patients mostly preferred to use technology for contact with health professionals (mean 3.15, SD 0.79), followed by access to their personal record (mean 3.09, SD 0.78) and scheduling appointments with health professionals (mean 3.07, SD 0.85). Conclusion: Most patients in rehabilitation used one or more devices almost every day and wish to use these devices in rehabilitation. https://doi.org/10.1080/17483107.2017.1358302
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Background: The majority of patients diagnosed with early-stage breast cancer are in a position to choose between having a mastectomy or lumpectomy with radiation therapy (breast-conserving therapy). Since the long-term survival rates for mastectomy and for lumpectomy with radiation therapy are comparable, patients’ informed preferences are important for decision-making. Although most clinicians believe that they do include patients in the decision-making process, the information that women with breast cancer receive regarding the surgical options is often rather subjective, and does not invite patients to express their preferences. Shared decision-making (SDM) is meant to help patients clarify their preferences, resulting in greater satisfaction with their final choice. Patient decision aids can be very supportive in SDM. We present the protocol of a study to β test a patient decision aid and optimise strategies for the implementation of SDM regarding the treatment of early-stage breast cancer in the actual clinical setting. Methods/design: This paper concerns a preimplementation and post-implementation study, lasting from October 2014 to June 2015. The intervention consists of implementing SDM using a patient decision aid. The intervention will be evaluated using qualitative and quantitative measures, acquired prior to, during and after the implementation of SDM. Outcome measures are knowledge about treatment, perceived SDM and decisional conflict. We will also conduct face-to-face interviews with a sample of these patients and their care providers, to assess their experiences with the implementation of SDM and the patient decision aid.
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Purpose: Collaborative deliberation comprises personal engagement, recognition of alternative actions, comparative learning, preference elicitation, and preference integration. Collaborative deliberation may be improved by assisting preference elicitation during shared decision-making. This study proposes a framework for preference elicitation to facilitate collaborative deliberation in long-term care consultations. Methods: First, a literature overview was conducted comprising current models for the elicitation of preferences in health and social care settings. The models were reviewed and compared. Second, qualitative research was applied to explore those issues that matter most to clients in long-term care. Data were collected from clients in long-term care, comprising 16 interviews, 3 focus groups, 79 client records, and 200 online client reports. The qualitative analysis followed a deductive approach. The results of the literature overview and qualitative research were combined. Results: Based on the literature overview, five overarching domains of preferences were described: “Health”, “Daily life”, “Family and friends”, ”Living conditions”, and “Finances”. The credibility of these domains was confirmed by qualitative data analysis. During interviews, clients addressed issues that matter in their lives, including a “click” with their care professional, safety, contact with loved ones, and assistance with daily structure and activities. These data were used to determine the content of the domains. Conclusion: A framework for preference elicitation in long-term care is proposed. This framework could be useful for clients and professionals in preference elicitation during collaborative deliberation.
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Background: The use of patient-reported outcomes to improve burn care increases. Little is known on burn patients’ views on what outcomes are most important, and about preferences regarding online Patient Reported Outcome Measures (PROMs). Therefore, this study assessed what outcomes matter most to patients, and gained insights into patient preferences towards the use of online PROMs. Methods: Adult patients (≥18 years old), 3–36 months after injury completed a survey measuring importance of outcomes, separately for three time periods: during admission, short-term (< 6 months) and long-term (6–24 months) after burn injury. Both open and closed-ended questions were used. Furthermore, preferences regarding the use of patient-reported outcome measures in burn care were queried. Results: A total of 140 patients were included (response rate: 27%). ‘Not having pain’ and ‘good wound healing’ were identified as very important outcomes. Also, ‘physical functioning at pre-injury level’, ‘being independent’ and ‘taking care of yourself’ were considered very important outcomes. The top-ten of most important outcomes largely overlapped in all three time periods. Most patients (84%) had no problems with online questionnaires, and many (67%) indicated that it should take up to 15 minutes. Patients’ opinions differed widely on the preferred frequency of follow-up. Conclusions: Not having pain and good wound healing were considered very important during the whole recovery of burns; in addition, physical functioning at pre-injury level, being independent, and taking care of yourself were deemed very important in the short and long-term. These outcomes are recommended to be used in burn care and research, although careful selection of outcomes remains crucial as patients prefer online questionnaires up to 15 minutes.
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Background: Patient involvement in interprofessional education (IPE) is a new approach in fostering person-centeredness and collaborative competencies in undergraduate students. We developed the Patient As a Person (PAP-)module to facilitate students in learning from experts by experience (EBEs) living with chronic conditions, in an interprofessional setting. This study aimed to explore the experiences of undergraduate students, EBEs and facilitators with the PAP-module and formulate recommendations on the design and organization of patient involvement in IPE. Methods: We collected data from students, EBEs and facilitators, through eight semi-structured focus group interviews and two individual interviews (N = 51). The interviews took place at Maastricht University, Zuyd University of Applied Sciences and Regional Training Center Leeuwenborgh. Conventional content analysis revealed key themes. Results: Students reported that learning from EBEs in an interprofessional setting yielded a more comprehensive approach and made them empathize with EBEs. Facilitators found it challenging to address multiple demands from students from different backgrounds and diverse EBEs. EBEs were motivated to improve the personcentredness of health care and welcomed a renewed sense of purpose. Conclusions: This study yielded six recommendations: (a) students from various disciplines visit an EBE to foster a comprehensive approach, (b) groups of at least two students visit EBEs, (c) students may need aftercare for which facilitators should be receptive, (d) EBEs need clear instruction on their roles, (e) multiple EBEs in one session create diversity in perspectives and (f) training programmes and peer-to-peer sessions for facilitators help them to interact with diverse students and EBEs.
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Background: Patient participation in goal setting is important to deliver client-centered care. In daily practice, however, patient involvement in goal setting is not optimal. Patient-specific instruments, such as the Patient Specific Complaints (PSC) instrument, can support the goal-setting process because patients can identify and rate their own problems. The aim of this study is to explore patients’ experiences with the feasibility of the PSC, in the physiotherapy goal setting. Method: We performed a qualitative study. Data were collected by observations of physiotherapy sessions (n=23) and through interviews with patients (n=23) with chronic conditions in physiotherapy practices. Data were analyzed using directed content analysis. Results: The PSC was used at different moments and in different ways. Two feasibility themes were analyzed. First was the perceived ambiguity with the process of administration: patients perceived a broad range of experiences, such as emotional and supportive, as well as feeling a type of uncomfortableness. The second was the perceived usefulness: patients found the PSC useful for themselves – to increase awareness and motivation and to inform the physiotherapist – as well as being useful for the physiotherapist – to determine appropriate treatment for their personal needs. Some patients did not perceive any usefulness and were not aware of any relation with their treatment. Patients with a more positive attitude toward questionnaires, patients with an active role, and health-literate patients appreciated the PSC and felt facilitated by it. Patients who lacked these attributes did not fully understand the PSC’s process or purpose and let the physiotherapist take the lead. Conclusion: The PSC is a feasible tool to support patient participation in the physiotherapy goal setting. However, in the daily use of the PSC, patients are not always fully involved and informed. Patients reported varied experiences related to their personal attributes and modes of administration. This means that the PSC cannot be used in the same way in every patient. It is perfectly suited to use in a dialogue manner, which makes it very suitable to improve goal setting within client-centered care.
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Background: Acquiring the theoretical and practical knowhow of conducting patient and public involvement (PPI) in research is not part of the traditional curriculum of researchers. Zuyd University of Applied Sciences and Huis voor de Zorg, a regional umbrella patient organization, therefore started a 1.5-year coaching programme. Objective: To establish a community of practice by developing a PPI coaching programme for senior and junior health services researchers of Zuyd University. The context consisted of research projects conducted by the participants. Methods: A participatory action research methodology. Data were collected from reports of thematic group meetings and individual sessions with participants, field notes and regular reflection meetings with the project team. Data were analysed by reflexive deliberation. Findings: The programme comprised a kick-off meeting (52 attendees), followed by 7 group meetings with 11 junior and 9 senior researchers. The project team constructed a serious game based on the concept of the participation ladder. Questions and concerns differed for junior and senior researchers, and separate tailored meetings were organized for both groups. Between group meetings, participants received individual assignments. Group meetings were accompanied by individual coaching sessions to provide tailor-made feedback. The programme concluded with a combined meeting with all stakeholders. Conclusion: Building a community of PPI practice through action research facilitates the development of a coaching programme that fosters social learning, empowerment and the development of a shared identity concerning PPI. The role and responsibilities of senior researchers should be distinguished from those of junior researchers.
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AimsKnowledge of patient preferences is vital for delivering optimal healthcare. This study uses utility measurement to assess the preferences of heart failure (HF) patients regarding quality of life or longevity. The utility approach represents the perspective of a patient; facilitates the combination of mortality, morbidity, and treatment regimen into a single score; and makes it possible to compare the effects of different interventions in healthcare.Methods and resultsPatient preferences of 100 patients with HF were assessed in interviews using the time trade-off (TTO) approach. Health-related quality of life (HR-QoL) was assessed with the EQ-5D and the Minnesota Living with Heart Failure Questionnaire (MLHFQ). Patients' own estimation of life expectancy was assessed with a visual analogue scale (VAS). Of the 100 patients (mean age 70 ± 9 years; 71% male), 61% attach more weight to quality of life over longevity; while 9% and 14% were willing to trade 6 and 12 months, respectively, for perfect health and attach more weight to quality of life. Patients willing to trade time had a significantly higher level of NT-proBNP and reported significantly more dyspnoea during exertion. Predictors of willingness to trade time were higher NT-proBNP and lower EQ VAS.ConclusionThe majority of HF patients attach more weight to quality of life over longevity. There was no difference between both groups with respect to life expectancy described by the patients. These insights enable open and personalized discussions of patients' preferences in treatment and care decisions, and could guide the future development of more patient-centred care. © 2013 Published on behalf of the European Society of Cardiology. All rights reserved. © The Author 2013. For permissions please email: journals.permissions@oup.com.
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