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1.
Child Care Health Dev ; 50(1): e13155, 2024 01.
Article in English | MEDLINE | ID: mdl-37487595

ABSTRACT

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.


Subject(s)
Autism Spectrum Disorder , Social Environment , Humans , Adolescent , Child, Preschool , Child , Cross-Sectional Studies , Switzerland , Social Participation , Parents
3.
Qual Life Res ; 32(6): 1595-1605, 2023 Jun.
Article in English | MEDLINE | ID: mdl-36757571

ABSTRACT

PURPOSE: The added value of measuring patient-reported outcomes (PROs) for delivering patient-centered care and assessment of healthcare quality is increasingly evident. However, healthcare system wide data collection initiatives are hampered by the proliferation of patient-reported outcome measures (PROMs) and conflicting data collection standards. As part of a national initiative of the Dutch Ministry of Health, Welfare and Sport we developed a consensus-based standard set of generic PROs and PROMs to be implemented across Dutch medical specialist care. METHODS: A working group of mandated representatives of umbrella organizations involved in Dutch medical specialist care, together with PROM experts and patient organizations worked through a structured, consensus-driven co-creation process. This included literature reviews, online expert and working group meetings, and feedback from national patient- and umbrella organizations. The 'PROM-cycle' methodology was used to select feasible, valid, and reliable PROMs to obtain domain scores for each of the PROs included in the set. RESULTS: Eight PROs across different domains of health were ultimately endorsed: symptoms (pain & fatigue), functioning (physical, social/participation, mental [anxiety & depression]), and overarching (quality of life & perceived overall health). A limited number of generic PROMs was endorsed. PROMIS short forms were selected as the preferred instruments for all PROs. Several recommendations were formulated to facilitate healthcare system level adoption and implementation of the standard set. CONCLUSIONS: We developed a consensus-based standard set of Generic PROMs and a set of recommendations to facilitate healthcare system wide implementation across Dutch medical specialist care.


Subject(s)
Patient Care , Quality of Life , Humans , Quality of Life/psychology , Patient Reported Outcome Measures , Data Collection , Delivery of Health Care
4.
Health Expect ; 26(1): 132-145, 2023 02.
Article in English | MEDLINE | ID: mdl-36346158

ABSTRACT

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.


Subject(s)
COVID-19 , Humans , Patients , Focus Groups , Health Personnel , Patient Reported Outcome Measures
5.
Clin Psychol Psychother ; 30(2): 357-372, 2023 Mar.
Article in English | MEDLINE | ID: mdl-36347022

ABSTRACT

Satisfying daily life functioning is essential in mental healthcare. Standard assessments focus on symptoms and are designed to detect underlying vulnerabilities. However, they offer insufficient insight into patterns of contextual variability and resilience. Consequently, interventions are planned using incomplete information. The experience-sampling method (ESM) is a structured moment-to-moment diary assessing the individual's affect, thoughts, perception and behaviour in the daily life context. ESM helps to understand variation in mental states (e.g., anxiety or sleeping problems) as adaptational processes in relation to contextual challenges (functional analysis). Although ESM has been extensively studied across psychological disorders, the adoption by mental health professionals and their patients remains limited because the 'how to' is unclear. This paper presents a practical guide for ESM application in routine clinical care. It integrates empirical knowledge with expert experiences and provides real-world examples and recommendations for successful implementation. The guide comprises how to engage and motivate patients and how to customize assessments to the patient's needs. It also includes instructions to interpret results and create an atmosphere of shared decision-making. Experience-sampling technology has merits for patients with various mental health complaints and across healthcare settings, although the exact use and implementation may vary depending on the individual case.


Subject(s)
Health Personnel , Mental Health , Humans , Ecological Momentary Assessment , Anxiety , Anxiety Disorders
6.
J Autism Dev Disord ; 2022 Dec 20.
Article in English | MEDLINE | ID: mdl-36538129

ABSTRACT

Environments have a modifying effect on the participation of children and adolescents with autism spectrum disorder (ASD) in all areas of life. This cross-sectional study investigated parental perspectives on supportive or hindering environments and the daily contextual strategies parents used to enhance their children's participation. Qualitative and quantitative data gathered from 115 parents from German-speaking Switzerland using the participation and environment measure-child and youth (PEM-CY) were analyzed. Results revealed 45 environmental supports and barriers at home, at school, and in the community. Contextual strategies were identified in combination with people, activities, time, objects, and places. Parental perspectives on participation and their contextual strategies should be considered in environmental-based interventions to support the participation of children and adolescents with ASD.

7.
Article in English | MEDLINE | ID: mdl-34066296

ABSTRACT

Despite the increased use of activity trackers, little is known about how they can be used in healthcare settings. This study aimed to support healthcare professionals and patients with embedding an activity tracker in the daily clinical practice of a specialized mental healthcare center and gaining knowledge about the implementation process. An action research design was used to let healthcare professionals and patients learn about how and when they can use an activity tracker. Data collection was performed in the specialized center with audio recordings of conversations during therapy, reflection sessions with the therapists, and semi-structured interviews with the patients. Analyses were performed by directed content analyses. Twenty-eight conversations during therapy, four reflection sessions, and eleven interviews were recorded. Both healthcare professionals and patients were positive about the use of activity trackers and experienced it as an added value. Therapists formulated exclusion criteria for patients, a flowchart on when to use the activity tracker, defined goals, and guidance on how to discuss (the data of) the activity tracker. The action research approach was helpful to allow therapists to learn and reflect with each other and embed the activity trackers into their clinical practice at a specialized mental healthcare center.


Subject(s)
Fitness Trackers , Health Personnel , Delivery of Health Care , Health Facilities , Humans , Qualitative Research
8.
JMIR Mhealth Uhealth ; 9(6): e19536, 2021 06 01.
Article in English | MEDLINE | ID: mdl-34061036

ABSTRACT

BACKGROUND: A large number of people suffer from psychosocial or physical problems. Adequate strategies to alleviate needs are scarce or lacking. Symptom variation can offer insights into personal profiles of coping and resilience (detailed functional analyses). Hence, diaries are used to report mood and behavior occurring in daily life. To reduce inaccuracies, biases, and noncompliance with paper diaries, a shift to electronic diaries has occurred. Although these diaries are increasingly used in health care, information is lacking about what determines their use. OBJECTIVE: The aim of this study was to map the existing empirical knowledge and gaps concerning factors that influence the use of electronic diaries, defined as repeated recording of psychosocial or physical data lasting at least one week using a smartphone or a computer, in health care. METHODS: A scoping review of the literature published between January 2000 and December 2018 was conducted using queries in PubMed and PsycInfo databases. English or Dutch publications based on empirical data about factors that influence the use of electronic diaries for psychosocial or physical purposes in health care were included. Both databases were screened, and findings were summarized using a directed content analysis organized by the Consolidated Framework for Implementation Research (CFIR). RESULTS: Out of 3170 articles, 22 studies were selected for qualitative synthesis. Eleven themes were determined in the CFIR categories of intervention, user characteristics, and process. No information was found for the CFIR categories inner (eg, organizational resources, innovation climate) and outer (eg, external policies and incentives, pressure from competitors) settings. Reminders, attractive designs, tailored and clear data visualizations (intervention), smartphone experience, and intrinsic motivation to change behavior (user characteristics) could influence the use of electronic diaries. During the implementation process, attention should be paid to both theoretical and practical training. CONCLUSIONS: Design aspects, user characteristics, and training and instructions determine the use of electronic diaries in health care. It is remarkable that there were no empirical data about factors related to embedding electronic diaries in daily clinical practice. More research is needed to better understand influencing factors for optimal electronic diary use.


Subject(s)
Delivery of Health Care , Motivation , Electronics , Health Facilities , Humans
9.
Cancer Nurs ; 44(6): 489-498, 2021.
Article in English | MEDLINE | ID: mdl-32604137

ABSTRACT

BACKGROUND: Survivors of lymphoma experience multiple challenges after treatment. However, a lack of knowledge of in-depth experiences of lymphoma survivors in early aftercare persists. OBJECTIVE: To gain an in-depth understanding of the experiences of lymphoma survivors in early aftercare who have received an aftercare consultation based on evidence-based guideline recommendations, with an advanced practice nurse. METHODS: This study used a narrative design. We recruited lymphoma survivors after a best-practice aftercare consultation with an advanced practice nurse. A total of 22 lymphoma survivors and 9 partners participated. Data were collected through narrative interviews and analyzed according to thematic narrative analysis. RESULTS: Six themes emerged: living and dealing with health consequences, coping with work and financial challenges, having a positive outlook and dealing with uncertainty, deriving strength from and experiencing tensions in relationships, getting through tough times in life, and receiving support from healthcare professionals. CONCLUSIONS: The stories of lymphoma survivors in early aftercare revealed their experiences of how they coped with a range of challenges in their personal lives. Choosing an aftercare trajectory based on an aftercare consultation that encourages patients to think about their issues, goals, and possible aftercare options may be useful for their transition from treatment to survivorship. IMPLICATIONS FOR PRACTICE: Survivors' social support and self-management capabilities are important aspects to be addressed in cancer care. An aftercare consultation involving shared goal setting and care planning may help nurses provide personalized aftercare.


Subject(s)
Aftercare , Lymphoma , Humans , Lymphoma/therapy , Social Support , Survivors , Survivorship
10.
Gerontol Geriatr Med ; 6: 2333721420951732, 2020.
Article in English | MEDLINE | ID: mdl-33088850

ABSTRACT

PURPOSE: The purpose of this study was to validate optimized algorithm parameter settings for step count and physical behavior for a pocket worn activity tracker in older adults during ADL. Secondly, for a more relevant interpretation of the results, the performance of the optimized algorithm was compared to three reference applications. METHODS: In a cross-sectional validation study, 20 older adults performed an activity protocol based on ADL with MOXMissActivity versus MOXAnnegarn, activPAL, and Fitbit. The protocol was video recorded and analyzed for step count and dynamic, standing, and sedentary time. Validity was assessed by percentage error (PE), absolute percentage error (APE), Bland-Altman plots and correlation coefficients. RESULTS: For step count, the optimized algorithm had a mean APE of 9.3% and a correlation coefficient of 0.88. The mean APE values of dynamic, standing, and sedentary time were 15.9%, 19.9%, and 9.6%, respectively. The correlation coefficients were 0.55, 0.91, and 0.92, respectively. Three reference applications showed higher errors and lower correlations for all outcome variables. CONCLUSION: This study showed that the optimized algorithm parameter settings can more validly estimate step count and physical behavior in older adults wearing an activity tracker in the trouser pocket during ADL compared to reference applications.

11.
PLoS One ; 15(10): e0240543, 2020.
Article in English | MEDLINE | ID: mdl-33045033

ABSTRACT

Active participation of stakeholders in health research practice is important to generate societal impact of outcomes, as innovations will more likely be implemented and disseminated in clinical practice. To foster a co-creative process, numerous frameworks and tools are available. As they originate from different professions, it is not evident that health researchers are aware of these tools, or able to select and use them in a meaningful way. This article describes the bottom-up development process of a compass and presents the final outcome. This Co-creation Impact Compass combines a well-known business model with tools from design thinking that promote active participation by all relevant stakeholders. It aims to support healthcare researchers to select helpful and valid co-creation tools for the right purpose and at the right moment. Using the Co-creation Impact Compass might increase the researchers' understanding of the value of co-creation, and it provides help to engage stakeholders in all phases of a research project.


Subject(s)
Health Services Research/methods , Research Design , Humans , Research Personnel
12.
Disabil Rehabil ; 42(23): 3284-3292, 2020 11.
Article in English | MEDLINE | ID: mdl-30973026

ABSTRACT

Aim: The aim of this study was to describe the experience with commercially available activity trackers embedded in the physiotherapy treatment of patients with a chronic disease.Methods: In a qualitative study, 29 participants with a chronic disease participated. They wore an activity tracker for two to eight weeks. Data were collected using 23 interviews and discussion with 6 participants. A framework analysis was used to analyze the data.Results: The framework analysis resulted in seven categories: purchase, instruction, characteristics, correct functioning, sharing data, privacy, use, and interest in feedback. The standard goal of the activity trackers was experienced as too high, however the tracker still motivated them to be more active. Participants would have liked more guidance from their physiotherapists because they experienced the trackers as complex. Participants experienced some technical failures, are willing to share data with their physiotherapist and, want to spend a maximum of €50,-.Conclusion: The developed framework gives insight into all important concepts from the experiences reported by patients with a chronic disease and can be used to guide further research and practice. Patients with a chronic disease were positive regarding activity trackers in general. When embedded in physiotherapy, more attention should be paid to the integration in treatment.Implications for rehabilitationActivity trackers are perceived by patients with a chronic disease, as motivating them to be more physically active and to reach daily activity goals.The standard goal of 10.000 steps of the activity trackers is often perceived as too high, patients with a chronic disease would like to make a personal activity goal together with their physiotherapist.Patients with a chronic disease experience commercially available activity trackers often as too complex for their technical skills, they would like more guidance from their physiotherapist about the use and interpretation of an activity tracker.


Subject(s)
Fitness Trackers , Motivation , Chronic Disease , Humans , Physical Therapy Modalities , Qualitative Research
13.
J Adv Nurs ; 76(1): 264-274, 2020 Jan.
Article in English | MEDLINE | ID: mdl-31612489

ABSTRACT

AIM: To explore and understand the views of clients and formal and informal caregivers about the experienced quality of home care for older people. DESIGN: A descriptive qualitative study was conducted using individual interviews. METHODS: Six home care clients, four formal and six informal caregivers were recruited from two Dutch home care organizations. Individual, semi-structured interviews took place between April - November 2018. The INDividually EXperienced QUAlity of Long-term care framework was used to guide data collection and content analyses. RESULTS: The analyses revealed several important attributes contributing to experienced quality of home care such as a preferred small number of caregivers, perceived sufficient time for care provision and a caring atmosphere facilitating open communication and humour. Participants indicated that care routines fitting with the care receiver's former way of living were important. A more 'close' personal care relationship related to trust, openness and empathy was preferred over a more 'detached' professional care relationship. CONCLUSION: This study identified a wide range of attributes related to experienced quality of care from the perspectives of clients and formal and informal caregivers in home care. IMPACT: Care providers are being challenged to structurally assess individual experienced quality of home care. This study underlines the importance of incorporating care preferences and experiences throughout the care process from a relationship-centred care approach. Relevant care measures and outcomes should be determined to gain insight and further improve individual care provision.


Subject(s)
Caregivers/psychology , Home Care Services/standards , Patients/psychology , Humans , Interviews as Topic , Netherlands , Patient Satisfaction , Qualitative Research
14.
Eur J Ageing ; 16(3): 387-394, 2019 Sep.
Article in English | MEDLINE | ID: mdl-31543731

ABSTRACT

The aim of this study was to assess the predictive ability of the frailty phenotype (FP), Groningen Frailty Indicator (GFI), Tilburg Frailty Indicator (TFI) and frailty index (FI) for the outcomes mortality, hospitalization and increase in dependency in (instrumental) activities of daily living ((I)ADL) among older persons. This prospective cohort study with 2-year follow-up included 2420 Dutch community-dwelling older people (65+, mean age 76.3 ± 6.6 years, 39.5% male) who were pre-frail or frail according to the FP. Mortality data were obtained from Statistics Netherlands. All other data were self-reported. Area under the receiver operating characteristic curves (AUC) was calculated for each frailty instrument and outcome measure. The prevalence of frailty, sensitivity and specificity were calculated using cutoff values proposed by the developers and cutoff values one above and one below the proposed ones (0.05 for FI). All frailty instruments poorly predicted mortality, hospitalization and (I)ADL dependency (AUCs between 0.62-0.65, 0.59-0.63 and 0.60-0.64, respectively). Prevalence estimates of frailty in this population varied between 22.2% (FP) and 64.8% (TFI). The FP and FI showed higher levels of specificity, whereas sensitivity was higher for the GFI and TFI. Using a different cutoff point considerably changed the prevalence, sensitivity and specificity. In conclusion, the predictive ability of the FP, GFI, TFI and FI was poor for all outcomes in a population of pre-frail and frail community-dwelling older people. The FP and the FI showed higher values of specificity, whereas sensitivity was higher for the GFI and TFI.

15.
Front Psychol ; 10: 2782, 2019.
Article in English | MEDLINE | ID: mdl-31920830

ABSTRACT

BACKGROUND: A paradigm shift in health care from illness to wellbeing requires new assessment technologies and intervention strategies. Self-monitoring tools based on the Experience Sampling Method (ESM) might provide a solution. They enable patients to monitor both vulnerability and resilience in daily life. Although ESM solutions are extensively used in research, a translation from science into daily clinical practice is needed. OBJECTIVE: To investigate the redesign process of an existing platform for ESM data collection for detailed functional analysis and disease management used by psychological assistants to the general practitioner (PAGPs) in family medicine. METHODS: The experience-sampling platform was reconceptualized according to the design thinking framework in three phases. PAGPs were closely involved in co-creation sessions. In the 'understand' phase, knowledge about end-users' characteristics and current eHealth use was collected (nominal group technique - 2 sessions with N = 15). In the 'explore' phase, the key needs concerning the platform content and functionalities were evaluated and prioritized (empathy mapping - 1 session with N = 5, moderated user testing - 1 session with N = 4). In the 'materialize' phase, the adjusted version of the platform was tested in daily clinical practice (4 months with N = 4). The whole process was extensively logged, analyzed using content analysis, and discussed with an interprofessional project group. RESULTS: In the 'understand' phase, PAGPs emphasized the variability in symptoms reported by patients. Therefore, moment-to-moment assessment of mood and behavior in a daily life context could be valuable. In the 'explore' phase, (motivational) functionalities, technological performance and instructions turned out to be important user requirements and could be improved. In the 'materialize' phase, PAGPs encountered barriers to implement the experience-sampling platform. They were insufficiently facilitated by the regional primary care group and general practitioners. CONCLUSION: The redesign process in co-creation yielded meaningful insights into the needs, desires and daily routines in family medicine. Severe barriers were encountered related to the use and uptake of the experience-sampling platform in settings where health care professionals lack the time, knowledge and skills. Future research should focus on the applicability of this platform in family medicine and incorporate patient experiences.

16.
Clin Rehabil ; 33(4): 619-630, 2019 Apr.
Article in English | MEDLINE | ID: mdl-30537847

ABSTRACT

OBJECTIVES:: To investigate immediate changes in walking performance associated with three implicit motor learning strategies and to explore patient experiences of each strategy. DESIGN:: Participants were randomly allocated to one of three implicit motor learning strategies. Within-group comparisons of spatiotemporal parameters at baseline and post strategy were performed. SETTING:: Laboratory setting. SUBJECTS:: A total of 56 community-dwelling post-stroke individuals. INTERVENTIONS:: Implicit learning strategies were analogy instructions, environmental constraints and action observation. Different analogy instructions and environmental constraints were used to facilitate specific gait parameters. Within action observation, only videotaped gait was shown. MAIN MEASURES:: Spatiotemporal measures (speed, step length, step width, step height) were recorded using Vicon 3D motion analysis. Patient experiences were assessed by questionnaire. RESULTS:: At a group level, three of the four analogy instructions ( n = 19) led to small but significant changes in speed ( d = 0.088 m/s), step height (affected side d = 0.006 m) and step width ( d = -0.019 m), and one environmental constraint ( n = 17) led to significant changes in step width ( d = -0.040 m). At an individual level, results showed wide variation in the magnitude of changes. Within action observation ( n = 20), no significant changes were found. Overall, participants found it easy to use the different strategies and experienced some changes in their walking performance. CONCLUSION:: Analogy instructions and environmental constraints can lead to specific, immediate changes in the walking performance and were in general experienced as feasible by the participants. However, the response of an individual patient may vary quite considerably.


Subject(s)
Gait Disorders, Neurologic/rehabilitation , Learning , Motor Skills , Stroke Rehabilitation/methods , Aged , Female , Humans , Male , Middle Aged , Walking Speed
17.
JMIR Mhealth Uhealth ; 6(4): e70, 2018 Apr 02.
Article in English | MEDLINE | ID: mdl-29610110

ABSTRACT

BACKGROUND: Measuring physical activity with commercially available activity trackers is gaining popularity. People with a chronic disease can especially benefit from knowledge about their physical activity pattern in everyday life since sufficient physical activity can contribute to wellbeing and quality of life. However, no validity data are available for this population during activities of daily living. OBJECTIVE: The aim of this study was to investigate the validity of 9 commercially available activity trackers for measuring step count during activities of daily living in people with a chronic disease receiving physiotherapy. METHODS: The selected activity trackers were Accupedo (Corusen LLC), Activ8 (Remedy Distribution Ltd), Digi-Walker CW-700 (Yamax), Fitbit Flex (Fitbit inc), Lumoback (Lumo Bodytech), Moves (ProtoGeo Oy), Fitbit One (Fitbit inc), UP24 (Jawbone), and Walking Style X (Omron Healthcare Europe BV). In total, 130 persons with chronic diseases performed standardized activity protocols based on activities of daily living that were recorded on video camera and analyzed for step count (gold standard). The validity of the trackers' step count was assessed by correlation coefficients, t tests, scatterplots, and Bland-Altman plots. RESULTS: The correlations between the number of steps counted by the activity trackers and the gold standard were low (range: -.02 to .33). For all activity trackers except for Fitbit One, a significant systematic difference with the gold standard was found for step count. Plots showed a wide range in scores for all activity trackers; Activ8 showed an average overestimation and the other 8 trackers showed underestimations. CONCLUSIONS: This study showed that the validity of 9 commercially available activity trackers is low measuring steps while individuals with chronic diseases receiving physiotherapy engage in activities of daily living.

18.
Health Expect ; 21(5): 848-857, 2018 10.
Article in English | MEDLINE | ID: mdl-29671920

ABSTRACT

OBJECTIVE: To gain insight into how communication vulnerable people and health-care professionals experience the communication in dialogue conversations, and how they adjust their conversation using augmentative and alternative communication (AAC) or other communication strategies. METHODS: Communication vulnerable clients and health-care professionals in a long-term care institution were observed during a dialogue conversation (n = 11) and subsequently interviewed (n = 22) about their experiences with the conversation. The clients had various communication difficulties due to different underlying aetiologies, such as acquired brain injury or learning disorder. Results from the observations and interviews were analysed using conventional content analysis. RESULTS: Seven key themes emerged regarding the experiences of clients and professionals: clients blame themselves for miscommunications; the relevance of both parties preparing the conversation; a quiet and familiar environment benefitting communication; giving clients enough time; the importance and complexity of nonverbal communication; the need to tailor communication to the client; prejudices and inexperience regarding AAC. The observations showed that some professionals had difficulties using appropriate communication strategies and all professionals relied mostly on verbal or nonverbal communication strategies. CONCLUSION: Professionals were aware of the importance of preparation, sufficient time, a suitable environment and considering nonverbal communication in dialogue conversations. However, they struggled with adequate use of communication strategies, such as verbal communication and AAC. There is a lack of knowledge about AAC, and professionals and clients need to be informed about the potential of AAC and how this can help them achieve equal participation in dialogue conversations in addition to other communication strategies.


Subject(s)
Communication Barriers , Health Personnel , Professional-Patient Relations , Vulnerable Populations , Adult , Aged , Awareness , Female , Humans , Interviews as Topic , Male , Middle Aged , Qualitative Research
19.
Arch Gerontol Geriatr ; 75: 91-95, 2018.
Article in English | MEDLINE | ID: mdl-29202326

ABSTRACT

OBJECTIVE: To identify self-report questions that can substitute Fried's performance-based frailty measures for use in large-scale studies and daily practice. METHODS: A cross-sectional study was conducted among community dwelling older people (65+). Based on a literature search and interviews with older people and experts, 11 questions concerning walk time and 10 on handgrip strength were selected. All participants completed these sets of self-report questions as well as the original Fried criteria (including performance-based tests). Regression analyses were performed to find the questions that best substituted the performance-based tests. RESULTS: In total, 135 individuals (mean age 73.8±7.0, 58.5% female) in different stages of frailty (non-frail 38.5%, pre-frail 40.7%, frail 20.7%) were included. Regression analyses revealed four questions for walk time and two for handgrip strength. Cut-off values of three for walk time (range 0-5) and one for handgrip strength (range 0-3) seem most optimal. This resulted in a sensitivity of 69.2%, 86.1% specificity and 79.4% agreement for walk time and a sensitivity of 73.2%, 71.3% specificity and 71.9% agreement for handgrip strength. The comparison of frailty stages using frailty criteria including the performance-based measures and scores based solely on self-report questions, resulted in an observed agreement of 71.1% (kappa value=0.55). CONCLUSIONS: Considering the agreement between the questions and the performance-based tests, these two sets of questions might be used in settings where the performance-based tests of walk time and handgrip strength are unfeasible, such as in daily practice and large-scale research.


Subject(s)
Frail Elderly , Frailty/diagnosis , Geriatric Assessment/methods , Hand Strength/physiology , Independent Living , Self Report , Walking/physiology , Aged , Aged, 80 and over , Cross-Sectional Studies , Female , Frailty/physiopathology , Humans , Male
20.
Article in English | MEDLINE | ID: mdl-29204293

ABSTRACT

BACKGROUND: For older people and people with a chronic disease, physical activity provides health benefits. Patients and healthcare professionals can use commercially available activity trackers to objectively monitor (alterations in) activity levels and patterns and to support physical activity. However, insight in the validity, reliability, and feasibility of these trackers in people with a chronic disease is needed. In this article, a study protocol is described in which the validity, reliability (part A), and feasibility from a patient and therapist's point of view (part B) of commercially available activity trackers in daily life and health care is investigated. METHODS: In part A, a quantitative cross-sectional study, an activity protocol that simulates everyday life activities will be used to determine the validity and reliability of nine commercially available activity trackers. Video recordings will act as the gold standard. In part B, a qualitative participatory action research study will be performed to gain insight in the use of activity trackers in peoples' daily life and therapy settings. Objective feasibility of the activity trackers will be measured with questionnaires, and subjective feasibility (experiences) will be explored in a community of practice. Physical therapists (n = 8) will regularly meet during 6 months to learn from each other regarding the actual use of activity trackers in therapy. Therapists and patients (n = 48) will decide together which tracker will be used in therapy and for which purpose (e.g., monitoring, goal setting). Data from the therapist' and patients' experiences will be collected by interviews (individual and focus groups) and analyzed by a directed content analysis. At the time of submission, selection of activity trackers, development of the activity protocol, and the ethical approval process are finished. Data collection and data processing are ongoing. DISCUSSION: The relevance of the study as well as the advantages and disadvantages of several aspects of the chosen design are discussed. The results acquired from both study parts can be used to create decision aids that may assist therapists and people with a chronic disease in choosing a suitable activity tracker, and to facilitate use of these activity trackers in health care settings. TRIAL REGISTRATION: Ethical approval has been obtained from two medical-ethical committees (nr. 15-N-109, 15-N-48 and MEC-15-07).

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