Background: During the process of decision-making for long-term care, clients are often dependent on informal support and available information about quality ratings of care services. However, clients do not take ratings into account when considering preferred care, and need assistance to understand their preferences. A tool to elicit preferences for long-term care could be beneficial. Therefore, the aim of this qualitative descriptive study is to understand the user requirements and develop a web-based preference elicitation tool for clients in need of longterm care. Methods: We applied a user-centred design in which end-users influence the development of the tool. The included end-users were clients, relatives, and healthcare professionals. Data collection took place between November 2017 and March 2018 by means of meetings with the development team consisting of four users, walkthrough interviews with 21 individual users, video-audio recordings, field notes, and observations during the use of the tool. Data were collected during three phases of iteration: Look and feel, Navigation, and Content. A deductive and inductive content analysis approach was used for data analysis. Results: The layout was considered accessible and easy during the Look and feel phase, and users asked for neutral images. Users found navigation easy, and expressed the need for concise and shorter text blocks. Users reached consensus about the categories of preferences, wished to adjust the content with propositions about well-being, and discussed linguistic difficulties. Conclusion: By incorporating the requirements of end-users, the user-centred design proved to be useful in progressing from the prototype to the finalized tool ‘What matters to me’. This tool may assist the elicitation of client’s preferences in their search for long-term care.
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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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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: 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: A patient decision aid (PtDA) can support shared decision making (SDM) in preference-sensitive care, with more than one clinically applicable treatment option. The development of a PtDA is a complex process, involving several steps, such as designing, developing and testing the draft with all the stakeholders, known as alpha testing. This is followed by testing in ‘real life’ situations, known as beta testing, and then finalising the definite version. Our aim was developing and alpha testing a PtDA for primary treatment of early stage breast cancer, ensuring that the tool is considered relevant, valid and feasible by patients and professionals. Methods: Our qualitative descriptive study applied various methods including face-to-face think-aloud interviews, a focus group and semi-structured telephone interviews. The study population consisted of breast cancer patients facing the choice between breast-conserving therapy with or without preceding neo-adjuvant chemotherapy and mastectomy, and professionals involved in breast cancer care in dedicated multidisciplinary breast cancer teams. Results: A PtDA was developed in four iterative test rounds, taking nearly 2 years, involving 26 patients and 26 professionals. While the research group initially opted for simplicity for the sake of implementation, the clinicians objected that the complexity of the decision could not be ignored. Other topics of concern were the conflicting views of professionals and patients regarding side effects, the amount of information and how to present it. Conclusion: The development was an extensive process, because the professionals rejected the simplifications proposed by the research group. This resulted in the development of a completely new draft PtDA, which took double the expected time and resources. The final version of the PtDA appeared to be well-appreciated by professionals and patients, although its acceptability will only be proven in actual practice (beta testing)
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Purpose: To describe nurses' support interventions for medication adherence, and patients' experiences and desired improvements with this care. Patients and methods: A two-phase study was performed, including an analysis of questionnaire data and conducted interviews with members of the care panel of the Netherlands Patients Federation. The questionnaire assessed 14 types of interventions, satisfaction (score 0-10) with received interventions, needs, experiences, and desired improvements in nurses' support. Interviews further explored experiences and improvements. Data were analyzed using descriptive statistics and a thematic analysis approach. Results: Fifty-nine participants completed the questionnaire, and 14 of the 59 participants were interviewed. The satisfaction score for interventions was 7.9 (IQR 7-9). The most common interventions were: "noticing when I don't take medication as prescribed" (n = 35), "helping me to find solutions to overcome problems with using medications" (n = 32), "helping me with taking medication" (n = 32), and "explaining the importance of taking medication at the right moment" (n = 32). Fifteen participants missed ≥1 of the 14 interventions. Most mentioned the following: "regularly asking about potential problems with medication use" (33%), "regularly discussing whether using medication is going well" (29%), and "explaining the importance of taking medication at the right moment" (27%). Twenty-two participants experienced the following as positive: improved self-management of adequate medication taking, a professional patient-nurse relationship to discuss adherence problems, and nurses' proactive attitude to arrange practical support for medication use. Thirteen patients experienced the following as negative: insufficient timing of home visits, rushed appearance of nurses, and insufficient expertise about side effects and taking medication. Suggested improvements included performing home visits on time, more time for providing support in medication use, and more expertise about side effects and administering medication. Conclusion: Overall, participants were satisfied, and few participants wanted more interventions. Nurses' support improved participants' self-management of medication taking and enabled patients to discuss their adherence problems. Adequately timed home visits, more time for support, and accurate medication-related knowledge are desired.
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Objective: Dialysis patients frequently report a change of taste that is reversible after renal transplantation, suggesting that uremic toxins may negatively influence taste. Currently, frequent nocturnal home hemodialysis (NHHD) is the most effective method of hemodialysis, and is associated with the lowest levels of uremic toxins. We studied preferences for various foods as an indicator of taste perception. We questioned whether food preference differs between NHHD patients and those on conventional hemodialysis. Design and Patients: In this transverse, cross-sectional pilot study, we assessed food preference by means of a questionnaire for patients on NHHD (n = 6; 8 hours of dialysis per night, for 5 or 6 nights a week) and 3 age-matched and sex-matched control groups: chronic home hemodialysis patients (HHD; n = 9; 4 to 5 hours of dialysis per day, 3 days a week), chronic in-center hemodialysis patients (CHD; n = 18; 4 to 5 hours of dialysis per day, 3 days a week), and healthy control subjects (HC; n = 23). Results: Mean scores for food preference did not differ between groups (P = .32). Similarly, the preference for product groups did not differ between groups. On an individual product level, we found only minor differences. The NHHD patients had a preference for savory snacks, as did the HC and CHD groups, whereas the HHD group had a preference for sweet snacks (P < .05). Hemodialysis patients reported dry mouth more often than did the HC patients (P < .05). Conclusions: Frequent NHHD has no major impact on food preference. The change in taste reported by NHHD patients is not related to their particular food preferences. © 2010 National Kidney Foundation, Inc.
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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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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 decision aids (PDAs) can support the treatment decision making process and empower patients to take a proactive role in their treatment pathway while using a shared decision-making (SDM) approach making participatory medicine possible. The aim of this study was to develop a PDA for prostate cancer that is accurate and user-friendly. Methods: We followed a user-centered design process consisting of five rounds of semi-structured interviews and usability surveys with topics such as informational/decisional needs of users and requirements for PDAs. Our userbase consisted of 8 urologists, 4 radiation oncologists, 2 oncology nurses, 8 general practitioners, 19 former prostate cancer patients, 4 usability experts and 11 healthy volunteers. Results: Informational needs for patients centered on three key factors: treatment experience, post-treatment quality of life, and the impact of side effects. Patients and clinicians valued a PDA that presents balanced information on these factors through simple understandable language and visual aids. Usability questionnaires revealed that patients were more satisfied overall with the PDA than clinicians; however, both groups had concerns that the PDA might lengthen consultation times (42 and 41%, respectively). The PDA is accessible on http://beslissamen.nl/. Conclusions: User-centered design provided valuable insights into PDA requirements but challenges in integrating diverse perspectives as clinicians focus on clinical outcomes while patients also consider quality of life. Nevertheless, it is crucial to involve a broad base of clinical users in order to better understand the decision-making process and to develop a PDA that is accurate, usable, and acceptable.
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