Adjusting advance care planning to older people's needs: results from focus groups and interviews.

BACKGROUND: Advance care planning (ACP) is becoming increasingly important in medical care. Some suggest standardized approaches to initiate ACP with all older adults. However, the idea of patient-centered care suggests more nuanced approaches tailored to individual older adults' needs. This study investigated how older adults with different views and needs about ACP can be approached in an adequate and most beneficial way by health care professionals. METHODS: We used questionnaires, interviews, focus groups and informal conversations with older adults, living in their own homes, who volunteered to take part in our research. The research was participatory as we collaborated closely with practice partners and we used the obtained findings immediately and continuously to inform the next steps of our research throughout the process. RESULTS: We identified three subgroups of older adults with differential needs regarding ACP-related activities: The first group avoids talking about their needs and wishes for care towards the end of life. These older people benefit from activities, which aim at motivating them to concern themselves with ACP-related topics. The second group consists of older adults who are in principle open for ACP-conversations but do not initiate these themselves. This group either trusts their next-of-kin or their healthcare professional to act in accordance with their wishes or does not bring up the topic in order to avoid confronting relevant others with possibly unpleasant topics. This group of people benefits from information about ACP and from healthcare professionals initiating the ACP process. The third group of older people initiates the ACP process themselves, gathers information, and takes the necessary steps for ACP. With this group it remains relevant to check carefully whether they have indeed taken all relevant steps and shared the information with all relevant involved care institutions and relatives. CONCLUSIONS: We propose a model to simplify adjustments of ACP to individuals' needs. Our suggested approach might contribute to increasing the motivation of older people to engage in ACP conversations if these are more closely related to their own needs. Further, it might also contribute to simplifying the individual shaping of the ACP process for healthcare professionals as our suggested model offers clear guidance for approaching different types of older people in different ways. The suggested approach may in future be used for training health care professionals in the conduct of ACP conversations.

Parents' perceptions: Participation patterns and desires for change for children and adolescents with autism spectrum disorder-A descriptive population-based study from Switzerland.

BACKGROUND: Low participation in youth with autism spectrum disorder (ASD) has been reported, but age-related and contextual information is rare. OBJECTIVE: This study aimed to describe, from parental perspectives, two patterns of participation and parental desires for change of children (age: 5-11) and adolescents (age: 12-17) with ASD in Switzerland. METHOD: A cross-sectional design used the German version of the Participation and Environment Measure-Child and Youth to describe and juxtapose the participation results of 60 children and 55 adolescents with ASD in 45 activities at home, school and in the community and parental desires for change. RESULTS: Participation patterns differed between settings and age groups. Both groups were found to participate most at home, followed by school, whereas community participation was either low or nonexistent. Children were more involved at home than adolescents, while school involvement was higher than participation frequency in both age groups. Community participation frequency was generally low but higher in children than in adolescents, while involvement was similarly low in both groups. Half the parents expressed desire for change with three tendencies: (1) widespread desire for change at home due to high support needs, (2) parents of adolescents expressed more desire for change in all settings than those of children and (3) all parents mainly desired to increase participation frequency and involvement. CONCLUSIONS: This study informs research and social, health and community service providers to further reshape their programmes to meet parental needs and increase the participation of youth with ASD.

Implementation of a patient-reported experience measure in a Dutch disability care organization: A process evaluation of cocreated tailored strategies.

INTRODUCTION: In 24/7 disability care facilities, patient-reported experience measures (PREMs) are important to help healthcare professionals understand what matters to care users and to improve the quality of care. However, the successful implementation of a PREM is complex. In a Dutch disability care organization, stakeholders cocreated tailored implementation strategies aimed at improving the use and integration of a qualitative PREM. This study gives insights into the uptake and experiences with these cocreated implementation strategies and the perceived impact of the set of strategies. METHODS: We performed a prospective process evaluation between February 2020 and February 2021. We collected data in three disability care facilities from 35 care users, 11 professionals, 3 facility managers and 4 organization representatives. Data collection included observations during kick-offs and learning goal meetings and several attendance checklists. We collected 133 questionnaires (Time 0 and Time 1). We conducted 35 individual semistructured interviews and an online focus group interview. Quantitative data were analysed using descriptive statistics and qualitative data using directed content analysis. RESULTS: The exposure to and adoption of strategies was between 76% and 100%. Participants were positive about tailoring the strategies to each facility. Implementation was hindered by challenges in care users' communication and COVID-19. The perceived impact referred to an improved understanding of the goal and added value of the PREM and better preparation and execution of the PREM. The impact of the set of strategies was mainly experienced on the micro level. CONCLUSION: The uptake of the cocreated implementation strategies was acceptable. The participants valued the tailored approach, which enabled them to focus on facility-specific learning goals. Stakeholder engagement and co-created strategies may have strengthened the adoption of and experiences with the implementation. PATIENT OR PUBLIC CONTRIBUTION: In this article, we present the process evaluation of implementation strategies for the integrated use of a PREM in disability care. A development group consisting of communication vulnerable care users, trainers and professionals developed the implementation strategies. The disability care organization was responsible for the planning and organization of the implementation process. During the process evaluation the end users, trainers, professionals and managers tailored the implementation strategies to their own settings and needs. Researchers observed this implementation process and interviewed the stakeholders about their experiences and the perceived impact.

The Balancing Act of Assessment Validity in Interprofessional Healthcare Education: A Qualitative Evaluation Study.

CONSTRUCT & BACKGROUND: In order to determine students' level of interprofessional competencies, there is a need for well-considered and thoroughly designed interprofessional assessments. Current literature about interprofessional assessments focuses largely on the development and validation of assessment instruments such as self-assessments or questionnaires to assess students' knowledge or attitudes. Less is known about the design and validity of integral types of assessment in interprofessional education, such as case-based assessments, or performance assessments. The aim of this study is to evaluate the evidence for and threats to the validity of the decisions about students' interprofessional performances based on such integral assessment task. We investigated whether the assessment prototype is a precursor to practice (authenticity) and whether the assessment provides valid information to determine the level of interprofessional competence (scoring). APPROACH: We used a design-based qualitative research design in which we conducted three group interviews with teachers, students, and interprofessional assessment experts. In semi-structured group interviews, participants evaluated the evidence for and threats to the validity of an interprofessional assessment task, which were analyzed using deductive and inductive content analysis. FINDINGS: Although both evidence for and threats to validity were mentioned, the threats refuting the assessment's validity prevailed. Evidence for the authenticity aspect was that the assessment task, conducting a team meeting, is common in practice. However, its validity was questioned because the assessment task appeared more structured as compared to practice. The most frequently mentioned threat to the scoring aspect was that the process of interprofessional collaboration between the students could not be evaluated sufficiently by means of this assessment task. CONCLUSIONS: This study showed that establishing interprofessional assessment validity requires three major balancing acts. The first is the balance between authenticity and complexity. As interprofessional practice and competencies are complex, interprofessional tasks require build-up or guidance toward this complexity and chaotic practice. The second is that between authenticity and scoring, in which optimal authenticity might lead to threats to scoring and vice versa. Simultaneous optimal authenticity and scoring seems impossible, requiring ongoing evaluation and monitoring of interprofessional assessment validity to ensure authentic yet fair assessments for all participating professions. The third balancing act is between team scoring and individual scoring. As interprofessional practice requires collaboration and synthesis of diverse professions, the team process is at the heart of solving interprofessional tasks. However, to stimulate individual accountability, the individual performance should not be neglected.

Patient and public involvement cultures and the perceived impact in the vulnerable context of palliative care: A qualitative study.

BACKGROUND: Cultural values are crucial to the practice and impact of patient and public involvement (PPI) in research. OBJECTIVE: To understand different PPI cultures among research teams and the impacts of PPI associated with each culture type. DESIGN: A participatory action research design. SETTING AND PARTICIPANTS: The setting was 10 palliative care research projects. Seventeen patients and members of the public and 31 researchers participated. INTERVENTION: A programme consisting of four components: (1) training and coaching of patients and the public to prepare them for participation in research, (2) tailored coaching of the 10 research teams over 12-18 months, (3) a community of practice, and (4) a qualitative evaluation. RESULTS: We identified three cultures types: relationship cultures, task cultures, and control cultures. We identified four areas of impact: the project aim became more relevant to the target audience, methodological reliability increased, the research products were better able to reach the public, and the awareness increased, associated with behavioural changes, among researchers regarding PPI. DISCUSSION: A relationship culture appears to be long-lasting due to impacting the behaviours of the researchers during future projects. Different cultural types require different types of patients and researcher participants, assigned to different tasks. CONCLUSIONS: Further research remains necessary to investigate the support required by researchers to enable relationship- and task-oriented PPI cultures. PATIENT OR PUBLIC CONTRIBUTION: Patient advocates and representatives contributed to our research team throughout the entire research process, as well as within the 10 implementation projects.

Stakeholder engagement from problem analysis to implementation strategies for a patient-reported experience measure in disability care: A qualitative study on the process and experiences.

BACKGROUND: In implementation science, vast gaps exist between theoretical and practical knowledge. These gaps prevail in the process of getting from problem analysis to selecting implementation strategies while engaging stakeholders including care users. OBJECTIVE: To describe a process of how to get from problem analysis to strategy selection, how to engage stakeholders, and to provide insights into stakeholders' experiences. DESIGN: A qualitative descriptive design. SETTING AND PARTICIPANTS: The setting was a care organization providing long-term care to people with acquired brain injuries who are communication vulnerable. Fourteen stakeholders (care users, professionals and researchers) participated. Data were collected by a document review, five interviews and one focus group. Inductive content analysis and deductive framework analysis were applied. INTERVENTION: Stakeholder engagement. MAIN OUTCOME MEASURES: A three-step process model and stakeholders experiences. RESULTS AND CONCLUSION: We formulated a three-step process: (a) reaching consensus and prioritizing barriers; (b) categorizing the prioritized barriers and idealization; and (c) composing strategies. Two subthemes continuously played a role in how stakeholders were engaged during the process: communication supportive strategies and continuous contact. The experiences of stakeholder participation resulted in the following themes: stakeholders and their roles, use of co-creation methods and communication supportive strategies, building relationships, stimulus of stakeholders to engage, sharing power, empowerment of stakeholders, feeling a shared responsibility and learning from one another. We conclude that the inclusion of communication-vulnerable care users is possible if meetings are prepared, communication-friendly presentations and reports are used, and relationship building is prioritized.

Improving the experience of older people with colorectal and breast cancer in patient-centred cancer care pathways using experience-based co-design.

BACKGROUND: Patient and public involvement (PPI) in quality improvement of oncological care pathways for older patients are rare. OBJECTIVES: Improve the care pathway experience of older cancer patients and explore lessons learned regarding how to engage this vulnerable group. DESIGN: Experience-Based Co-Design. SETTING AND PARTICIPANTS: Older cancer patients, their caregivers and healthcare professionals within colorectal and breast cancer care pathways. INTERVENTIONS: Co-design quality improvement teams. MAIN OUTCOME MEASURES: Colorectal cancer care pathway touchpoints were (a) availability of a contact person during diagnostic, treatment and aftercare phases; (b) collaboration between physicians and different hospital departments; (c) continuous relationship with same physician; (d) respectful treatment; (e) and information transfer with primary care. Breast cancer care pathway touchpoints were (a) comprehensive information package and information provision, (b) care planning based on patient preferences, (c) continuity of patient-professional relationship and (d) specialized care in case of vulnerability. Challenges related to PPI included (a) ability of older cancer patients to be reflective, critical and think at a collective level; (b) gaining support and commitment of professionals; (d) overcoming cultural differences and power inequalities; and (e) involving researchers and facilitators with appropriate expertise and position. CONCLUSION: This multidisciplinary quality improvement project revealed several challenges of PPI with older cancer patients and their caregivers. Research teams themselves need to assume the role of facilitator to enable meaningful PPI of older cancer patients. PATIENT OR PUBLIC CONTRIBUTION: Patient and caregiver representatives and advocates were involved in the design, conduct, analysis, interpretation of the data and preparation of this manuscript.

Cross-cultural adaptation of the Participation and Environment Measure for Children and Youth (PEM-CY) into German: a qualitative study in three countries.

BACKGROUND: Concepts such as participation and environment may differ across cultures. Consequently, to use a measure like the Participation and Environment Measure for Children and Youth (PEM-CY) in other than the original English-speaking contexts, cultural adaptation needs to be assured. The aim of this study was to cross-culturally translate and adapt the PEM-CY into German as it is used in Germany, Austria and Switzerland. METHODS: Fifteen parents of children and adolescents with disabilities from three German speaking countries participated in three rounds of think-aloud interviews. We followed the procedure of cultural equivalence guidelines including two additional steps. Data was analyzed by content analysis using semantic, idiomatic, experiential and conceptual equivalence. RESULTS: Results show adaptations mainly focused on experiential and conceptual equivalence, with conceptual equivalence being the most challenging to reach. Examples of experiential equivalence included adapting the examples of activities in the PEM-CY to reflect those typical in German speaking countries. Conceptual equivalence mainly addressed aspects of "involvement" and "environment" of children and adolescents and was reached through adaptations such as enhanced instructions and structures, and additional definitions. CONCLUSIONS: This study presents a cross-cultural translation and adaptation process to develop a German version of the PEM-CY that is suitable for Germany, Austria and Switzerland. Using a modified cultural adaptation process, a culturally adapted version of PEM-CY (German) is now available for research, practice and further validation.

What matters to me - a web-based preference elicitation tool for clients in long-term care: a user-centred design.

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 long-term 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.

Preparing researchers for patient and public involvement in scientific research: Development of a hands-on learning approach through action research.

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.

Content Validity of the Credibility and Expectancy Questionnaire in a Pain Rehabilitation Setting.

BACKGROUND: Content validity, the proper reflection of the concept to be measured, is yet unknown for the Credibility and Expectancy Questionnaire (CEQ). It is frequently used in pain rehabilitation because treatment expectancy is influential on the outcome. OBJECTIVE: To test and improve the content validity of the CEQ in a sample of patients with chronic pain in different phases of their treatment. METHODS: A qualitative observational study design using the Three-Step Test-Interview method was used. Therein, data collection, analyses, and adaptations occur iteratively. RESULTS: Seventeen patients with chronic pain in different stages of treatment participated through convenience sampling from the mother sample of a randomized controlled trial. The main study parameter is content validity, which is defined as (1) interpretations and responses of the participants and (2) the identification of response problems operationalized, and resulting in changes in the CEQ. For patients waiting for treatment, the written instruction of the CEQ allowed different interpretations. After changing the instructions, the CEQ became an easy-to-understand and content-valid questionnaire. For patients who had already undergone treatment, changes regarding time frame and recall period were necessary to overcome interpretation and response problems to the CEQ. DISCUSSION: After small changes, the CEQ appeared to be a content-valid measurement instrument for patients waiting for treatment. However, for patients who had already undergone treatment, the content validity of the CEQ was less, and considerable changes were necessary.

Childhood fever: a qualitative study on GPs' experiences during out-of-hours care.

BACKGROUND: Fever in children is common and mostly caused by self-limiting infections. However, parents of febrile children often consult in general practice, in particular during out-of-hours care. To improve management, it is important to understand experiences of GPs managing these consultations. OBJECTIVE: To describe GPs' experiences regarding management of childhood fever during out-of-hours care. METHODS: A descriptive qualitative study using purposeful sampling, five focus group discussions were held among 37 GPs. Analysis was based on constant comparative technique using open and axial coding. RESULTS: Main categories were: (i) Workload and general experience; (ii) GPs' perceptions of determinants of consulting behaviour; (iii) Parents' expectations from the GP's point of view; (iv) Antibiotic prescribing decisions; (v) Uncertainty of GPs versus uncertainty of parents and (vi) Information exchange during the consultation. GPs felt management of childhood fever imposes a considerable workload. They perceived a mismatch between parental concerns and their own impression of illness severity, which combined with time-pressure can lead to frustration. Diagnostic uncertainty is driven by low incidences of serious infections and dealing with parental demand for antibiotics is still challenging. CONCLUSION: Children with a fever account for a high workload during out-of-hours GP care which provides a diagnostic challenge due to the low incidence of serious illnesses and lacking long-term relationship. This can lead to frustration and drives antibiotics prescription rates. Improving information exchange during consultations and in the general public to young parents, could help provide a safety net thereby enhancing self-management, reducing consultations and workload, and subsequent antibiotic prescriptions.

The perceived impact of public involvement in palliative care in a provincial palliative care network in the Netherlands: a qualitative study.

BACKGROUND AND OBJECTIVE: Public involvement in palliative care is challenging and difficult, because people in need of palliative care are often not capable of speaking up for themselves. Patient representatives advocate for their common interests. The aim of our study was to examine in depth the current practice of public involvement in palliative care. SETTING AND SAMPLE: The study was conducted in the province of Limburg in the Netherlands, with six palliative care networks. Study participants were 16 patient representatives and 12 professionals. METHOD: This study had a descriptive design using qualitative methods: 18 in-depth interviews and three focus groups were conducted. The critical incident technique was used. The data were analysed using an analytical framework based on Arnstein's involvement classification and the process of decision making. Impact categories as well as facilitators and barriers were analysed using content analysis. FINDINGS AND CONCLUSION: The perceived impact of public involvement in palliative care in terms of citizen control and partnership is greatest with regard to quality of care, information development and dissemination, and in terms of policymaking with regard to the preparation and implementation phases of decision making. The main difference in perceived impact between patient representatives and professionals relates to the tension between operational and strategic involvement. Patient representatives experienced more impact regarding short-term solutions to practical problems, while professionals perceived great benefits in long-term, strategic processes. Improving public involvement in palliative care requires positive attitudes, open communication, sufficient resources and long-term support, to build a solid basis for pursuing meaningful involvement in the entire decision-making process.

Systematic implementation of evidence-based practice in a clinical nursing setting: a participatory action research project.

AIMS AND OBJECTIVES: To describe the process of implementing evidence-based practice in a clinical nursing setting. BACKGROUND: Evidence-based practice has become a major issue in nursing, it is insufficiently integrated into daily practice and its implementation is complex. DESIGN: Participatory action research. METHODS: The main participants were nurses working in a lung unit of a rural hospital. A multi-method process of data collection was used during the observing, reflecting, planning and acting phases. Data were continuously gathered during a 24-month period from 2010 to 2012, and analysed using an interpretive constant comparative approach. Patients were consulted to incorporate their perspective. RESULTS: A best-practice mode of working was prevalent on the ward. The main barriers to the implementation of evidence-based practice were that nurses had little knowledge of evidence-based practice and a rather negative attitude towards it, and that their English reading proficiency was poor. The main facilitators were that nurses wanted to deliver high-quality care and were enthusiastic and open to innovation. Implementation strategies included a tailored interactive outreach training and the development and implementation of an evidence-based discharge protocol. The academic model of evidence-based practice was adapted. Nurses worked according to the evidence-based practice discharge protocol but barely recorded their activities. Nurses favourably evaluated the participatory action research process. CONCLUSIONS: Action research provides an opportunity to empower nurses and to tailor evidence-based practice to the practice context. Applying and implementing evidence-based practice is difficult for front-line nurses with limited evidence-based practice competencies. RELEVANCE TO CLINICAL PRACTICE: Adaptation of the academic model of evidence-based practice to a more pragmatic approach seems necessary to introduce evidence-based practice into clinical practice. The use of scientific evidence can be facilitated by using pre-appraised evidence. For clinical practice, it seems relevant to integrate scientific evidence with clinical expertise and patient values in nurses' clinical decision-making at the individual patient level.

Identification of promising strategies to sustain improvements in hospital practice: a qualitative case study.

BACKGROUND: A quality improvement collaborative is an intensive project involving a combination of implementation strategies applied in a limited "breakthrough" time window. After an implementation project, it is generally difficult to sustain its success. In the current study, sustainability was described as maintaining an implemented innovation and its benefits over a longer period of time after the implementation project has ended. The aim of the study was to explore potentially promising strategies for sustaining the Enhanced Recovery After Surgery (ERAS) programme in colonic surgery as perceived by professionals, three to six years after the hospital had successfully finished a quality improvement collaborative. METHODS: A qualitative case study was performed to identify promising strategies to sustain key outcome variables related to the ERAS programme in terms of adherence, time needed for functional recovery and hospital length of stay (LOS), as achieved immediately after implementation. Ten hospitals were selected which had successfully implemented the ERAS programme in colonic surgery (2006-2009), with success defined as a median LOS of 6 days or less and protocol adherence rates above 70%. Fourteen semi-structured interviews were held with eighteen key participants of the care process three to six years after implementation, starting with the project leader in every hospital. The interviews started by confronting them with the level of sustained implementation results. A direct content analysis with an inductive coding approach was used to identify promising strategies. The mean duration of the interviews was 37 minutes (min 26 minutes - max 51 minutes). RESULTS: The current study revealed strategies targeting professionals and the organisation. They comprised internal audit and feedback on outcomes, small-scale educational booster meetings, reminders, changing the physical structure of the organisation, changing the care process, making work agreements and delegating responsibility, and involving a coordinator. A multifaceted self-driven promising strategy was applied in most hospitals, and in most hospitals promising strategies were suggested to sustain the ERAS programme. CONCLUSIONS: Joining a quality improvement collaborative may not be enough to achieve long-term normalisation of transformed care, and additional investments may be needed. The findings suggest that certain post-implementation strategies are valuable in sustaining implementation successes achieved after joining a quality improvement collaborative.

Integrating a tailored e-health self-management application for chronic obstructive pulmonary disease patients into primary care: a pilot study.

BACKGROUND: Changes in reimbursement have been compelling for Dutch primary care practices to apply a disease management approach for patients with chronic obstructive pulmonary disease (COPD). This approach includes individual patient consultations with a practice nurse, who coaches patients in COPD management. The aim of this study was to gauge the feasibility of adding a web-based patient self-management support application, by assessing patients' self-management, patients' health status, the impact on the organization of care, and the level of application use and appreciation. METHODS: The study employed a mixed methods design. Six practice nurses recruited COPD patients during a consultation. The e-Health application included a questionnaire that captured information on demographics, self-management related behaviors (smoking cessation, physical activity and medication adherence) and their determinants, and nurse recommendations. The application provided tailored feedback messages to patients and provided the nurse with reports. Data were collected through questionnaires and medical record abstractions at baseline and one year later. Semi-structured interviews with patients and nurses were conducted. Descriptive statistics were calculated for quantitative data and content analysis was used to analyze the qualitative data. RESULTS: Eleven patients, recruited by three nurses, used the application 1 to 7 times (median 4). Most patients thought that the application supported self-management, but their interest diminished after multiple uses. Impact on patients' health could not be determined due to the small sample size. Nurses reported benefits for the organization of care and made suggestions to optimize the use of the reports. CONCLUSION: Results suggest that it is possible to integrate a web-based COPD self-management application into the current primary care disease management process. The pilot study also revealed opportunities to improve the application and reports, in order to increase technology use and appreciation.

Practices and challenges of growth monitoring and promotion in ethiopia: a qualitative study.

The use of growth monitoring and promotion (GMP) has become widespread. It is a potential contributor towards achieving the Millennium Development Goals of halving hunger and reducing child mortality by two-thirds within 2015. Yet, GMP appears to be a prerequisite for good child health but several studies have shown that there is a discrepancy between the purpose and the practice of GMP. The high prevalence of malnutrition in many developing countries seems to confirm this fact. A descriptive qualitative study was carried out from April to September 2011. Focus group discussions and in-depth interviews were conducted amongst mothers and health workers. Data were analyzed using a qualitative content analysis technique, with the support of ATLAS.ti 5.0 software. The results suggest that most mothers were aware of the need for regular weight monitoring while health workers also seemed to be well-aware and to practise GMP according to the international guidelines. However, there was a deficit in maternal knowledge with regard to child-feeding and a lack of basic resources to keep and/or to buy healthful and nutritionally-rich food. Furthermore, the role of the husband was not always supportive of proper child-feeding. In general, GMP is unlikely to succeed if mothers lack awareness of proper child-feeding practices, and if they are not supported by their husbands.

Series: Practical guidance to qualitative research. Part 7: Qualitative evidence synthesis for emerging themes in primary care research: Scoping review, meta-ethnography and rapid realist review.

This article, the seventh in a series aiming to provide practical guidance for qualitative research in primary care, introduces qualitative synthesis research for addressing health themes in primary care research. Qualitative synthesis combines rigorous processes and authorial judgement to present the collective meaning of research outputs; the findings of qualitative studies - and sometimes mixed-methods and quantitative research - are pooled. We describe three exemplary designs: the scoping review, the meta-ethnography and the rapid realist review. Scoping reviews aim to provide an overview of the evidence/knowledge or to answer questions regarding the nature and diversity of the evidence/knowledge available. Meta-ethnographies intend to systematically compare data from primary qualitative studies to identify and develop new overarching concepts, theories, and models. Rapid realist reviews aim to provide a knowledge synthesis by looking at complex questions while responding to time-sensitive and emerging issues. It addresses the question, 'what works, for whom, in what circumstances, and how?'We discuss these three designs' context, what, why, when and how. We provide examples of published studies and sources for further reading, including manuals and guidelines for conducting and reporting these studies. Finally, we discuss attention points for the research team concerning the involvement of necessary experts and stakeholders and choices to be made during the research process.

Rationale and development of an e-health application to deliver patient-centered care during treatment for recently diagnosed multiple myeloma patients: pilot study of the MM E-coach.

BACKGROUND: Patients with multiple myeloma (MM) increasingly face complicated treatment regimens. E-health may support patients and healthcare providers in enhancing a patient-centered healthcare approach. Therefore, we aimed to develop a patient-centered multi-modality e-health application, to assess the application for usability and end-user experiences. METHODS: The application was developed following an iterative "action-based" methodology using the design thinking approach. Key end users participated, and relevant stakeholders were consulted in the development process. First, the care pathway was evaluated, the focus of development was determined, and a solution ideated during recurring multidisciplinary meetings. Second, a prototype was tested and improved. Third, a subsequent prototype was evaluated during a pilot study with patients and healthcare professionals on usability, usage, and experiences. RESULTS: The multi-modality application, named the "MM E-coach," consisted of a newly developed medication module, patient-reported outcome (PRO) questionnaire assessments, a messaging service, alerts, information provision, and a personal care plan. The median system usability score was 60 on a scale of 0-100. Patients appreciated the medication overview, healthcare professionals appreciated the outpatient clinic preparation module, and both appreciated the messaging service. Additional recommendations for improvement mostly revolved around the flexibility of functionalities and look and feel of the application. CONCLUSIONS: The MM E-coach has the potential to provide patient-centered care by supporting patients and caregivers during MM treatment and is a promising application to be implemented in the MM care pathway. A randomized clinical trial was initiated to study its clinical effectiveness.

Series: Public engagement with research. Part 1: The fundamentals of public engagement with research.

BACKGROUND: In the first of a four-part series, we describe the fundamentals of public engagement in primary care research. OBJECTIVES: The article's purpose is to encourage, inform and improve the researcher's awareness about public engagement in research. For a growing number of researchers, funders and patient organisations in Europe, public engagement is a moral and ethical imperative for conducting high-quality research. DISCUSSION: Starting with an explanation of the role of public engagement in research, we highlight its diversity and benefits to research, researchers and the public members involved. We summarise principles of good practice and provide valuable resources for researchers to use in their public engagement activities. Finally, we discuss some of the issues encountered when researchers collaborate with members of the public and provide practical steps to address them. Case studies of real-life situations are used to illustrate and aid understanding. CONCLUSION: We hope this article and the other papers in this series will encourage researchers to better consider the role and practice of public engagement and the potential added value to research that collaborating with the public could provide.