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1.
Disabil Rehabil ; : 1-15, 2024 Sep 27.
Article in English | MEDLINE | ID: mdl-39334550

ABSTRACT

PURPOSE: This study aims to overcome the challenges experienced in the regional development and implementation of home-based stroke rehabilitation (HBSR) and to understand the change process needed. MATERIALS AND METHODS: Using participatory action research (PAR), participants and researchers collaboratively produced knowledge and took action to improve the offered HBSR. Different methods for data generation and analysis were used, depending on the aim of the PAR phase and the participants' stages of change. The Consolidated Framework for Implementation Research (CFIR) was used to select implementation strategies and to evaluate the implementation process. RESULTS: Developing and implementing HBSR resulted in multiple products that promoted the implementation of a regional stroke network and affiliated work arrangements. Work arrangements were embodied in a stroke care pathway, follow-up tool, and expertise requirements. Evaluating the PAR process identified participants being able to take the lead, being facilitated by others, and making progress visible, as implementation facilitators. Collaborating within a primary care project can be challenging but is considered essential and has a positive impact on multiple levels. Also, the implementation of HBSR calls for multiple implementation strategies reflecting multiple CFIR constructs. CONCLUSION: This study highlights the complexity and achievements of developing and implementing HBSR using PAR.


When developing home-based stroke rehabilitation, important topics concern: interprofessional collaboration, follow-up care, professional expertise, attention to the social network and "invisible consequences" of stroke, case management, and supporting self-management.When developing a regional stroke network, viewpoints and work arrangements should be documented, for example through a stroke care pathway, and a tool for follow-up care. This can overcome the challenges experienced regarding interprofessional collaboration while delivering home-based stroke rehabilitation.When implementing a complex intervention such as home-based stroke rehabilitation, participatory action research can be used to empower professionals and to facilitate the development of practical solutions to experienced implementation problems in the community.When developing home-based stroke rehabilitation and/or executing participatory action research, facilitation by a person with an overview of the project is important to guide the knowledge transformation process.

2.
Ann Phys Rehabil Med ; 67(7): 101874, 2024 Aug 21.
Article in English | MEDLINE | ID: mdl-39173549

ABSTRACT

BACKGROUND: A Dutch nationwide prospective cohort study was initiated to investigate recovery trajectories of people recovering from coronavirus disease 2019 (COVID-19) and costs of treatment by primary care allied health professionals. OBJECTIVES: The study described recovery trajectories over a period of 12 months and associated baseline characteristics of participants recovering from COVID-19 who visited a primary care allied health professional. It also aimed to provide insight into the associated healthcare and societal costs. METHODS: Participants completed participant-reported standardized outcomes on participation, health-related quality of life, fatigue, physical functioning, and costs at baseline (ie, start of the treatment), 3, 6, 9 and 12 months. RESULTS: A total of 1451 participants (64 % women, 76 % mild/moderate severity) with a mean (SD) age of 49 (12) years were included. Linear mixed models showed significant and clinically relevant improvements over time in all outcome measures between baseline and 12 months. Between 6 and 12 months, we found significant but not clinically relevant improvements in most outcome measures. Having a worse baseline score was the only baseline factor that was consistently associated with greater improvement over time on that outcome. Total allied healthcare costs (mean €1921; SEM €48) made up about 3% of total societal costs (mean €64,584; SEM €3149) for the average participant in the cohort. CONCLUSIONS: The health status of participants recovering from COVID-19 who visited an allied health professional improved significantly over a 12-month follow-up period, but nearly the improvement occurred between baseline and 6 months. Most participants still reported severe impairments in their daily lives, and generated substantial societal costs. These issues, combined with the fact that baseline characteristics explained little of the variance in recovery over time, underscore the importance of continued attention for the management of people recovering from COVID-19. TRIAL REGISTRATION: clinicaltrials.gov (NCT04735744).

3.
Front Psychiatry ; 15: 1387536, 2024.
Article in English | MEDLINE | ID: mdl-38818024

ABSTRACT

Introduction: People with dementia and their carers experience social stigma and often refrain from social participation. Significant improvement might be achieved by creating Dementia Friendly communities (DFCs) for which dementia friendly initiatives (DFIs) are needed. DFIs are developed by a variation of stakeholders. However, people with dementia and their carers are often unrepresented herein. This study aims to get insight into the perspectives of stakeholders (e.g., health- and social care professionals, volunteers, people with dementia and their carers) about the involvement of people with dementia and their carers during the development and sustainment of DFIs. Methods: Descriptive qualitative study, using a co-research design with a carer as co-researcher. Nineteen semi-structured interviews with stakeholders, including people with dementia and their carers, were performed. Inductive content analysis took place using Atlas Ti. Results: Four themes were found: 1) the involvement of people with dementia and their carers is important for both people with dementia and their carers and other stakeholders; 2) personal character traits, life histories, and associated emotions evoke the need for involvement; 3) involvement requires an open, responsive stance and building relationships; and 4) the estimation of one's own and others' capacities influences perspectives on involvement. As such, practice what you preach means actively adopting an open, responsive approach and acknowledging the unique abilities and backgrounds of people with dementia and their carers. It emphasizes the importance of actually living by the values you advocate for. Conclusion: Central to perspectives on involving people with dementia and their carers is the emphasis on working relationally, differing from service-led and pre-structured patient and public involvement (PPI). Working relationally calls for organizational shifts aligned with a rights-based perspective to avoid tokenism, and promotion of user-led organizations with genuine partnerships. Creative methods, problem-solving, and communication skills are essential for the development and sustainment of inclusive, supportive, person-centered DFIs. Future studies should explore the long-term impact of the involvement and working relationally on the well-being of people with dementia and their carers.

4.
BMC Geriatr ; 24(1): 275, 2024 Mar 20.
Article in English | MEDLINE | ID: mdl-38509458

ABSTRACT

BACKGROUND: Older people want to age in place. Despite advancing functional limitations and their desire of aging in place, they are not always faithful to therapy that maintains independence and promotes safety. Occupational therapists can facilitate aging in place. Occupational therapy is defined as the therapeutic use of everyday life occupations with persons, groups, or populations for the purpose of enhancing or enabling participation. AIM: To describe the content a high-adherence-to-therapy and evidence-based occupational therapy intervention to optimize functional performance and social participation of home-based physically frail older adults and wellbeing of their informal caregiver, and the research activities undertaken to design this intervention. METHODS: A roadmap was created to develop the occupational therapy intervention. This roadmap is based on the Medical Research Council (MRC) framework and is supplemented with elements of the Intervention Mapping approach. The TIDieR checklist is applied to describe the intervention in detail. A systematic review and two qualitative studies substantiated the content of the intervention scientifically. RESULTS: The application of the first two phases of the MRC framework resulted in the ProMOTE intervention (Promoting Meaningful activities by Occupational Therapy in Elderly). The ProMOTE intervention is a high-adherence-to-therapy occupational therapy intervention that consists of six steps and describes in detail the evidence-based components that are required to obtain an operational intervention for occupational therapy practice. CONCLUSION: This study transparently reflects on the process of a high-quality occupational therapy intervention to optimize the functional performance and social participation of the home-based physically frail older adult and describes the ProMOTE intervention in detail. The ProMOTE intervention contributes to safely aging in place and to maintaining social participation. The designed intervention goes beyond a description of the 'what'. The added value lies in the interweaving of the 'why' and 'how'. By describing the 'how', our study makes the concept of 'therapeutic use-of-self' operational throughout the six steps of the occupational therapy intervention. A further rigorous study of the effect of the ProMOTE intervention on adherence, functional performance and social participation is recommended based to facilitate the implementation of this intervention on a national level in Belgium.


Subject(s)
Frail Elderly , Occupational Therapy , Humans , Occupational Therapy/methods , Aged , Belgium , Male , Female , Independent Living , Aged, 80 and over , Activities of Daily Living , Social Participation
5.
JMIR Public Health Surveill ; 9: e44155, 2023 Oct 20.
Article in English | MEDLINE | ID: mdl-37862083

ABSTRACT

BACKGROUND: Patients recovering from COVID-19 often experience persistent problems in their daily activities related to limitations in physical, nutritional, cognitive, and mental functioning. To date, it is unknown what treatment is needed to support patients in their recovery from COVID-19. OBJECTIVE: This study aimed to evaluate the primary allied health care of patients recovering from COVID-19 at 6-month follow-up and to explore which baseline characteristics are associated with changes in the scores of outcomes between baseline and 6-month follow-up. METHODS: This Dutch nationwide prospective cohort study evaluated the recovery of patients receiving primary allied health care (ie, dietitians, exercise therapists, occupational therapists, physical therapists, and speech and language therapists) after COVID-19. All treatments offered by primary allied health professionals in daily practice were part of usual care. Patient-reported outcome measures on participation, health-related quality of life, fatigue, physical functioning, and psychological well-being were assessed at baseline and at 3- and 6-month follow-up. Linear mixed model analyses were used to evaluate recovery over time, and uni- and multivariable linear regression analyses were used to examine the association between baseline characteristics and recovery. RESULTS: A total of 1451 adult patients recovering from COVID-19 and receiving treatment from 1 or more primary allied health professionals were included. For participation (Utrecht Scale for Evaluation of Rehabilitation-Participation range 0-100), estimated mean differences of at least 2.3 points were observed at all time points. For the health-related quality of life (EuroQol Visual Analog Scale, range 0-100), the mean increase was 12.3 (95% CI 11.1-13.6) points at 6 months. Significant improvements were found for fatigue (Fatigue Severity Scale, range 1-7): the mean decrease was -0.7 (95% CI -0.8 to -0.6) points at 6 months. However, severe fatigue was reported by 742/929 (79.9%) patients after 6 months. For physical functioning (Patient-Reported Outcomes Measurement Information System-Physical Function Short Form 10b, range 13.8-61.3), the mean increase was 5.9 (95% CI 5.9-6.4) points at 6 months. Mean differences of -0.8 (95% CI -1.0 to -0.5) points for anxiety (Hospital Anxiety and Depression Scale range 0-21) and -1.6 (95% CI -1.8 to -1.3) points for depression were found after 6 months. A worse baseline score, hospital admission, and male sex were associated with greater improvement between baseline and 6-month follow-up, whereas age, the BMI, comorbidities, and smoking status were not associated with mean changes in any outcome measures. CONCLUSIONS: Patients recovering from COVID-19 who receive primary allied health care make progress in recovery but still experience many limitations in their daily activities after 6 months. Our findings provide reference values to health care providers and health care policy makers regarding what to expect from the recovery of patients who receive health care from 1 or more primary allied health professionals. TRIAL REGISTRATION: ClinicalTrials.gov NCT04735744; https://tinyurl.com/3vf337pn. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2340/jrm.v54.2506.


Subject(s)
COVID-19 , Quality of Life , Adult , Humans , Male , Delivery of Health Care , Fatigue , Prospective Studies , Female
6.
EClinicalMedicine ; 63: 102169, 2023 Sep.
Article in English | MEDLINE | ID: mdl-37680943

ABSTRACT

Background: FindMyApps is a tablet-based eHealth intervention designed to help people learn to use a tablet and find easy-to-use apps. This study evaluated the effectiveness of FindMyApps for supporting social health of people living with dementia, and sense of competence of their informal caregivers. Methods: A single-centre, two-arm, non-blinded randomised controlled trial was conducted (Netherlands Trial Register NL8157). From 1st January 2020 to 31st July 2022, community-dwelling people in the Netherlands with a pre-established diagnosis of mild cognitive impairment (MCI) or dementia (Brief Cognitive Rating Scale 17-32), an informal caregiver and internet connection were allocated by block randomisation to receive FindMyApps or digital care-as-usual. Primary outcomes (measured at baseline and after three months) for people with dementia/MCI were self-management (Adult Social Care Outcomes Toolkit total score) and social participation (Maastricht Social Participation Profile frequency and diversity scores), and for caregivers, sense of competence (Short Sense of Competence Questionnaire total score). Between-group differences were tested by MANCOVA or ANCOVA (alpha = 0.05). Findings: 150 dyads were randomised (FindMyApps n = 76, care-as-usual n = 74). Follow-up data were available for 128 dyads (FindMyApps n = 64, care-as-usual n = 64), who were included in the analysis in the trial arm to which they were assigned. No harms of the intervention were identified. There were no statistically significant differences in outcomes for people with dementia/MCI at group level. Diagnosis and experiencing apathy appeared to be relevant effect modifiers of secondary outcomes (neuropsychiatric symptoms, positive affect, sense of belonging, and pleasurable activities). Caregivers who received FindMyApps had higher sense of competence at three months (F [1,123] = 7.01, p = 0.0092, η2 = 0.054). Interpretation: Overall we found no evidence that the FindMyApps intervention better supported social participation or self-management of people with MCI/dementia than digital care-as-usual. FindMyApps does seem to better support informal caregivers' sense of competence. For people with a diagnosis of mild dementia and older people, better tailored interventions, implementation and outcome measures may be needed. Funding: Marie Sklodowska Curie Actions Innovative Training Network H2020 MSCA ITN, grant agreement number 813196.

7.
BMC Geriatr ; 23(1): 488, 2023 08 11.
Article in English | MEDLINE | ID: mdl-37568088

ABSTRACT

BACKGROUND: This study investigated the perspectives of primary care professionals, in particular general practitioners, registered nurses, physiotherapists and occupational therapists, on inter-professional collaboration, the barriers and the facilitators they perceive in the care of the frail older population. METHODS: We conducted a qualitative study. In-depth interviews with healthcare professionals were performed, using open-ended questions about their perceptions on the care of frail older adults and inter-professional collaboration. Data was analyzed following the Basic Logical Model of Abduction and Creswell's coding method. RESULTS: Healthcare professionals indicated that when they explored problems complementary to the reasons for older people to contact a healthcare professional, these additional problems often seemed to be the main problem. They also stated that there was too little inter-professional collaboration in the care of complex chronic issues and lack of a shared vision on collaboration. Collaboration is still limited too much to contacting established professions. Health information technology can support both, inter-professional collaboration and working on an evidence-based manner. It can also be a facilitator to inform patients. The availability and use of health information technology differs between the professions. Success factors and barriers for sustainable collaboration were identified on several levels, namely innovation, individual, professional, patient, social context, context of the organization, economic and political context. CONCLUSIONS: Our study shed light on the willingness and barriers in collaboration of healthcare professionals in primary care for older adults. There is little inter-professional collaboration, despite the willingness of the healthcare professionals to collaborate.


Subject(s)
Frail Elderly , Physical Therapists , Humans , Aged , Qualitative Research , Attitude of Health Personnel , Primary Health Care
8.
Aust Occup Ther J ; 70(6): 644-660, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37365675

ABSTRACT

BACKGROUND: Currently, paediatric health care aims to use a child-centred tailor-made approach. In order to design tailored occupational therapy, the implementation of personalised occupation-based measurements that guide and evaluate goal setting and are responsive to change is necessary. PURPOSE: Primarily, this study explored the potential of the Perceive, Recall, Plan, and Perform (PRPP) assessment to measure the change in the performance of children with multiple disabilities. As a secondary evaluation, the feasibility of the PRPP-Intervention in a home-based program to enable activities was described. The overall aim is to show the potential of the PRPP-Assessment as an outcome measure to use as a base for designing tailor-made person-centred care. METHODS: An exploratory longitudinal multiple case series mixed-methods design was used. The PRPP-Assessment, scored by multiple raters, was conducted based on parent-provided videos. The assessed activities were chosen by the child and/or parents. Responsiveness was evaluated by hypotheses formulated a priori and by comparing measured change with change on concurrent measures: Goal Attainment Scaling (GAS) and Canadian Occupational Performance Measure (COPM). Over a 6-week period, children and their parents (or caregivers) participated in an online home-based video coaching program where parents were coached in the implementation of the training, based on the PRPP-Intervention, by paediatric occupational therapists on a weekly basis. The feasibility of the intervention was explored using semi-structured interviews with children, parents, and the treating occupational therapists and was analysed by directed content analysis. RESULTS: Three out of 17 eligible children agreed to participate and completed post-intervention measurement, of which two completed the intervention. Quantitative results showed that eight out of nine activities improved on the PRPP-Assessment and the COPM, and nine improved on the GAS. In total, 13 out of 15 hypotheses for responsiveness were accepted. Participants experienced the intervention as successful and acceptable. Facilitators and concerns over demand, implementation, practicality, integration, and adaptation were shared. CONCLUSION: The PRPP-Assessment showed the potential to measure change in a heterogeneous group of children. The results indicated a positive tendency for the intervention and also provide directions for further development.


Subject(s)
Occupational Therapy , Humans , Child , Occupational Therapy/methods , Canada , Activities of Daily Living , Parents , Outcome Assessment, Health Care
9.
Article in English | MEDLINE | ID: mdl-36901017

ABSTRACT

BACKGROUND: Dementia-friendly communities (DFCs) are seen as key to the inclusion and participation of people with dementia and carers. Dementia-friendly initiatives (DFIs) are important building blocks for the growth of DFCs. The collaboration between different stakeholders is a central aspect in developing and sustaining DFIs. AIM: This study tests and refines an initial theory about collaborating for DFIs with special attention for the involvement of people with dementia and their carers during the collaboration for DFIs. The realist approach is used for deepening contextual aspects, mechanisms, outcomes, and its explanatory power. METHODS: A participatory case study design using qualitative data (focus groups, observations, reflections, minutes from meetings, and exit interviews) was executed in four Dutch municipalities that have ambitions to become dementia- friendly communities. RESULTS: The refined theory on the collaboration for DFIs incorporates contextual aspects such as diversity, shared insights, and clarity. It draws attention to the importance of mechanisms such as the recognition of efforts and progress, informal distributed leadership, interdependency, belonging, significance, and commitment. These mechanisms resonate with feeling useful and feeling collectively powerful in the collaboration. The outcomes of collaboration were activation, getting new ideas, and fun. Our findings address how stakeholders' routines and perspectives impact the involvement of people with dementia and their carers during collaboration. CONCLUSION: This study provides detailed information about collaboration for DFIs. The collaboration for DFIs is largely influenced by feeling useful and collectively powerful. Further research is needed to understand how these mechanisms can be triggered with the involvement of people with dementia and their carers in the heart of the collaboration.


Subject(s)
Dementia , Humans , Caregivers , Focus Groups , Emotions , Research Design
10.
BMC Public Health ; 23(1): 296, 2023 02 09.
Article in English | MEDLINE | ID: mdl-36759811

ABSTRACT

BACKGROUND: Dementia friendly communities (DFCs) are seen as key to participation of people with dementia and carers. Dementia-friendly initiatives (DFI) are important building blocks for the growth of DFCs. Therefore, it is essential to understand how DFIs are developed and sustained to secure the growth of DFCs. This study identifies contextual factors and mechanisms that influence the development and sustainment of Dutch DFIs. It also explains how these contextual factors and mechanisms are interrelated and the outcomes to which they lead. METHODS: Mixed methods, namely interviews, observations, documentation and focus groups, were used for this realist multiple case study. Participants were professionals (n = 46), volunteers (n = 20), people with dementia (n = 1) and carers (n = 2) who were involved in development and sustainment of DFIs in four Dutch DFCs. RESULTS: This study revealed three middle-range program theories as final outcomes: development of a support base, collaboration, and participation in DFIs by people with dementia and carers. These theories address institutional, organisational, interpersonal and individual levels in the community that are essential in development and sustainment of DFIs. CONCLUSIONS: The development and sustainment of DFIs requires the development of a support base, collaboration, and participation in DFIs by people with dementia and their carers.


Subject(s)
Dementia , Humans , Dementia/therapy , Caregivers , Focus Groups
11.
Gerontology ; 69(7): 866-874, 2023.
Article in English | MEDLINE | ID: mdl-36754032

ABSTRACT

The concept of resilience, i.e., the capacity of a system to bounce back after a stressor, is gaining interest across many fields of science, policy, and practice. To date, resilience research in people with cognitive decline has predominantly addressed the early stages of decline. We propose that: (1) resilience is a relevant concept in all stages of cognitive decline; and (2) a socio-ecological, multisystem perspective on resilience is required to advance understanding of, and care and support for people with cognitive decline and their support networks. We substantiate our position with literature and examples. Resilience helps understand differences in response to risk factors of (further) cognitive decline and informs personalised prevention. In a curative context, interventions to strengthen resilience aim to boost recovery from cognitive decline. In care for people with dementia, resilience-focused interventions can strengthen coping mechanisms to maintain functioning and well-being of the individual and their support network. A good example of improving resilience in the social and policy context is the introduction of age-friendly cities and dementia-friendly communities. Good care for people with cognitive decline requires a health and social care system that can adapt to changes in demand. Given the interdependency of resilience at micro-, meso- and macro-levels, an integrative socio-ecological perspective is required. Applying the concept of resilience in the field of cognitive decline opens new horizons for research to improve understanding, predicting, intervening on health and social care needs for the increasing population with cognitive decline.


Subject(s)
Cognitive Dysfunction , Dementia , Humans , Aged , Cognitive Dysfunction/therapy , Cognitive Dysfunction/psychology , Social Support , Adaptation, Psychological , Dementia/psychology
12.
J Neurol Neurosurg Psychiatry ; 94(6): 474-481, 2023 06.
Article in English | MEDLINE | ID: mdl-36697215

ABSTRACT

BACKGROUND: Neuralgic amyotrophy (NA) is an acute inflammation of nerves within the brachial plexus territory leading to severe pain and multifocal paresis resulting in >60% of patients having residual complaints and functional limitations correlated with scapular dyskinesia. Our primary aim was to compare the effects of multidisciplinary rehabilitation (MR), focused on motor relearning to improve scapular dyskinesia and self-management strategies for reducing pain and fatigue, with usual care (UC) on shoulder, arm and hand functional capability in patients with NA. METHODS: In a non-blinded randomised controlled trial (RCT), patients with NA (aged≥18 years, scapular dyskinesia, >8 weeks after onset) were randomised to either an MR or an UC group. MR consisted of a diagnostic multidisciplinary consultation and eight sessions of physical and occupational therapy. Primary outcome was functional capability of the shoulder, arm and hand assessed with the Shoulder Rating Questionnaire-Dutch Language Version (SRQ-DLV). RESULTS: We included 47 patients with NA; due to drop-out, there were 22 participants in MR and 15 in UC for primary analysis. The mean group difference adjusted for sex, age and SRQ-DLV baseline score was 8.60 (95%CI: 0.26 to 16.94, p=0.044). The proportion attaining a minimal clinically relevant SRQ-DLV improvement (≥12) was larger for the MR group (59%) than the UC group (33%) with a number needed to treat of 4. CONCLUSION: This RCT shows that an MR programme focused on motor relearning to improve scapular dyskinesia, combined with self-management strategies for reducing pain and fatigue, shows more beneficial effects on shoulder, arm and hand functional capability than UC in patients with NA. TRIAL REGISTRATION NUMBER: NCT03441347.


Subject(s)
Brachial Plexus Neuritis , Occupational Therapy , Humans , Outpatients , Pain , Fatigue , Quality of Life
13.
Disabil Rehabil ; 45(14): 2354-2367, 2023 07.
Article in English | MEDLINE | ID: mdl-35722883

ABSTRACT

PURPOSE: To investigate the reliability and validity of the Perceive, Recall, Plan and Perform System of Task Analysis (PRPP-Assessment) by parent-provided videos of children with mitochondrial disorders. METHODS: Videos of 13 children performing 3-7 activities each were the subject of study, resulting in 65 activities. These were scored using the PRPP-Assessment by 11 raters. Internal consistency was calculated with Cronbach's alpha. Intra-rater reliability was evaluated by Bland-Altman Plots on 44 PRPP-Assessment scores. Inter-rater reliability was calculated with ICCAgreement on 128 PRPP-Assessment scores. Construct validity was assessed by comparing the PRPP-Assessment scores to the Canadian Occupational Performance Measure using Cohen's Kappa. PRPP-Assessments scores were evaluated with a multi-faceted Rasch Analysis. RESULTS: Internal consistency was high (0.92). Intra-rater reliability was sufficient to be good (92-96% within the 95%-Limits of the Agreement). The ICCAgreement for stage 1 Mastery Score showed acceptable inter-rater reliability (0.646). Stage 2 of the PRPP-Assessment showed low ICCs due to a lack of variability within the sample. Four out of six hypotheses on validity were accepted. Rasch's analysis demonstrated sound goodness-of-fit, and supported the validity of the PRPP-Assessment. CONCLUSION: The PRPP-Assessment by parent-provided videos in this heterogenic group showed sufficient to good psychometric properties. In practice, careful task selection and formulating criterion is recommended.Implications for RehabilitationPRPP-Assessment by parent-provided videos is reliable and valid in the complex, heterogenous group of children with mitochondrial disordersThe PRPP-Assessment is suitable for children with mitochondrial disorders as it showed to contain familiar, functional and meaningful tasks and activities that fit with their level of functioningProfessionals should be aware that parents might not be used to the criterium-based frame of reference of the PRPP-AssessmentWhen applying the PRPP-Assessment, it is recommended to be careful in task selection and formulating the criterion.


Subject(s)
Mitochondrial Diseases , Humans , Child , Reproducibility of Results , Observer Variation , Canada , Psychometrics , Mitochondrial Diseases/diagnosis
14.
Phys Occup Ther Pediatr ; 43(1): 74-92, 2023.
Article in English | MEDLINE | ID: mdl-35695004

ABSTRACT

AIMS: Performing the Perceive, Recall, Plan and Perform (PRPP)-Assessment, using video material of everyday life, seems sensible to lower the patient burden, enhance ecological validity, and provide care at a distance. However, receipt of adequate video material is not self-evident and assessing videos can be challenging. Therefore, this study aims to optimize the process of gaining video material and to optimize the PRPP-Assessment based on parent-provided videos. METHODS: An action design research method was used, focusing on implementation of the PRPP-Assessment based on parent-provided videos within the care of children with a mitochondrial disorder or similar symptoms. RESULTS: Five cycles were conducted. To receive input, the cycles used videos of nine children performing activities, written feedback, and semi-structured interviews and focus groups comprising parents (n = 13), a teacher (n = 1), occupational therapists (n = 16), and other professionals (n = 2) . This led to successful implementation of the PRPP-Assessment. General lessons were learned on (1) instructing parents; (2) handling video material; (3) PRPP-Assessment based on parent-provided videos; and (4) PRPP-Assessment of children (with limited functional abilities). CONCLUSIONS: Lessons learned should be implemented in practice and are incorporated into a manual to guide the implementation of video-based observations with PRPP-Assessment in practice.


Subject(s)
Mitochondrial Diseases , Parents , Child , Humans , Activities of Daily Living
15.
Disabil Rehabil Assist Technol ; 18(3): 253-265, 2023 04.
Article in English | MEDLINE | ID: mdl-33245000

ABSTRACT

PURPOSE: FindMyApps is a web-based selection-tool and errorless learning training program to help people with mild dementia/Mild Cognitive Impairment (MCI) and caregivers find user-friendly apps. In preparation of a definitive trial, the impact and feasibility of the FindMyApps intervention on self-management and engagement in meaningful activities, including social participation, was explored. MATERIALS AND METHODS: An exploratory pilot randomised controlled trial (trial registration approval number: NL7210) with pre/post measurements was conducted with community-dwelling people with mild dementia/MCI and their caregivers (n = 59) in the Netherlands. Dyads in the experimental group (n = 28) received training to use the tablet and FindMyApps, and the errorless learning method was taught to their caregivers. Control group dyads (n = 31) received a tablet (without FindMyApps), instructions on tablet-use and links to dementia-friendly apps. Validated instruments were used to assess person with dementia's self-management, meaningful activities and social participation, caregiver's sense of competence and both their quality of life. RESULTS AND CONCLUSIONS: No statistical significant group differences on the outcomes were found. Small to moderate effect-sizes in favour of the FindMyApps group were found for self-management and social participation. Caregivers tended to have more positive care experiences. Subgroup analyses showed that people older than 70 benefitted more from FindMyApps regarding self-management and higher educated people benefitted more regarding social participation. FindMyApps is feasible for the target group and may have potential to improve self-management and social participation. For a future definitive effectiveness trial a larger sample size is recommended, as well as taking into account the possible impact of education and age.IMPLICATIONS FOR REHABILITATIONThe FindMyApps program is feasible for people with dementia/MCI and may have potential to improve their self-management and social participation.Informal caregivers may develop a more positive care experience when utilizing FindMyApps to find suitable apps for self-management and social participation for the person with dementia/MCI.


Subject(s)
Cognitive Dysfunction , Dementia , Humans , Caregivers/psychology , Quality of Life/psychology , Pilot Projects
16.
Aging Clin Exp Res ; 35(1): 53-60, 2023 Jan.
Article in English | MEDLINE | ID: mdl-36255690

ABSTRACT

BACKGROUND: Community Occupational Therapy in Dementia in Italy (COTID-IT) is a feasible and effective treatment that aims improving the quality of life and well-being of people with dementia and caregivers. The implementation of the program in the national context has not been studied yet. AIM: The objective of this study is to identify barriers and facilitators in the Italian implementation of the program. METHODS: We designed a quantitative cross-sectional survey. A questionnaire was developed to collect descriptive data regarding the respondents, the perceived barriers and facilitators regarding the application of COTiD and possible actions to promote the implementation process. RESULTS: The questionnaire was sent to all 90 Italian OTs trained in the use of COTiD-IT from 2013 to 2020. 50 people responded (61%). Barriers to the implementation of the COTID-IT included lack of knowledge about Occupational Therapy and the COTID-IT program by other health professionals. In addition, the scarcity of economic funds invested in home rehabilitation is experienced as another significant barrier. Facilitators were found to be the presence of an interprofessional team interested in the COTID-IT program and occupational therapy and the fact that COTID-IT is supported by scientific evidence. The creation of national and regional inter professional education and support groups, the availability of online resources are seen as opportunities to better implement the COTID-IT program. CONCLUSIONS: Implementation of psychosocial interventions is complex. OTs in Italy should be increasingly included within health policies and care programs of people with dementia to promote the use of COTID-IT. Further studies are needed to detail the policy and methodological actions that OTs should take in the future to disseminate and consolidate this intervention.


Subject(s)
Dementia , Occupational Therapy , Humans , Quality of Life , Cross-Sectional Studies , Surveys and Questionnaires , Italy , Dementia/therapy , Dementia/psychology
17.
Aust Occup Ther J ; 70(2): 175-189, 2023 04.
Article in English | MEDLINE | ID: mdl-36149673

ABSTRACT

INTRODUCTION: Uncovering the perspective of children with multiple disabilities is important in health care to enable person-centred health care. For occupational therapists, uncovering the child perspective on meaningful activities is necessary to set appropriate goals for treatment. It is not always evident that children with multiple disabilities can express themselves in an interview. The interviewer should adapt his communication to the child. In literature, alternative communication is widely studied, but a clear algorithm for deciding what to use to successfully gain insight into the child perspective is missing. This study aims to identify helpful interview techniques and interviewer skills and how they can be used to effectively uncover the perspective of children. METHODS: Videos of nine interviews with children with a mitochondrial disorder, conducted by an occupational therapist, were analysed by five researchers. The interviews were analysed to see how well the interviewee had obtained the child's perspectives followed by observation of communicative abilities of the child and the types of questions the interviewer asked. A qualitative directed content analysis of the semi-structured interviews followed. FINDINGS: An interview pattern was observed in the children's communication leading to six successful interviews. Children communicated verbally on four different levels and also used non-verbal communication. The interviewer used five types of questions, which varied between and within the children. The content analysis resulted in two themes: parental influences and interviewer skills. CONCLUSION: Results show the importance of matching the type of questions to the verbal communication level of the child and revealed several interviewer skills and techniques. An overview to guide tailor-made interviewing is presented. The interviewer has a major role in successful interviewing and thus in enabling the inclusion of the child perspective in research and care.


Subject(s)
Activities of Daily Living , Disabled Children , Interviews as Topic , Child , Humans , Occupational Therapy , Communication
18.
BMC Prim Care ; 23(1): 285, 2022 11 17.
Article in English | MEDLINE | ID: mdl-36397003

ABSTRACT

BACKGROUND: People post-stroke are at risk of not being able to participate in valued activities. It is important that rehabilitation professionals prepare people post-stroke for the transition home and provide needed support when they live at home. Several authors have suggested that members of the broad social network should play an active role in rehabilitation. This includes informing them about the importance of activity (re)engagement post-stroke and learning strategies to provide support. It is not clear when and how the broad social network can best be equipped to provide adequate activity support. This study aimed to explore stroke professionals' perspectives on strategies that establish a social network that supports activity (re)engagement of people post-stroke, when strategies are best implemented, and the factors that influence the implementation of these strategies. METHODS: Two focus groups were executed. Content analysis was used to analyze the transcripts of the recorded conversations. RESULTS: Eighteen professionals with various professional backgrounds and roles in treating people post-stroke participated. Strategies to establish a supportive social network included identifying, expanding, informing, and actively engaging network members. Working with the network in the immediate post-stroke phase was regarded as important for improving long-term activity outcomes. Participants expressed that most strategies to equip the social network to support people post-stroke need to take place within community care. However, the participants experienced difficulties in implementing network strategies. Perceived barriers included interprofessional collaboration, professional knowledge, self-efficacy, and financial structures. CONCLUSIONS: Strategies to involve the social network of people post-stroke are not fully implemented. Although identifying members of a social network should begin during inpatient rehabilitation, the main part of actively engaging the network will have to take place when the people post-stroke return home. Implementing social network strategies requires a systematic process focusing on collaboration, knowledge, attitude, and skill development.


Subject(s)
Stroke Rehabilitation , Stroke , Humans , Focus Groups , Social Networking
19.
Dementia (London) ; 21(8): 2517-2535, 2022 Nov.
Article in English | MEDLINE | ID: mdl-36063815

ABSTRACT

OBJECTIVES: This article describes the development and feasibility evaluation of an empowerment program for people living with dementia in nursing homes. METHODS: Development and feasibility evaluation of the empowerment program was guided by the British Medical Research Council's (MRC) framework. In the developmental phase, we used intervention mapping to develop the theory- and evidence-based intervention. During the feasibility phase, two care teams utilised the program from September to December 2020. We evaluated the feasibility in terms of demand, acceptability, implementation, practicality, integration and limited efficacy. FINDINGS: This study showed that, according to healthcare professionals, the program was feasible for promoting empowerment for people living with dementia in a nursing home. Healthcare professionals mentioned an increased awareness regarding the four themes of empowerment (sense of identity, usefulness, control and self-worth), and greater focus on the small things that matter to residents. Healthcare professionals experienced challenges in involving family caregivers. CONCLUSION: An important step is to take into account the implementation prerequisites that follow from our findings, and to further investigate feasibility, as the use of the program and data collection was hindered by the COVID-19 pandemic. Subsequent research could investigate the effects of the empowerment program.


Subject(s)
COVID-19 , Dementia , Humans , Aged , Homes for the Aged , Feasibility Studies , Pandemics , Nursing Homes , Caregivers , Quality of Life
20.
J Adv Nurs ; 78(12): 4104-4112, 2022 Dec.
Article in English | MEDLINE | ID: mdl-35867338

ABSTRACT

AIMS: We aim to identify existing empowerment interventions for people living with dementia and to explore which used interventions and projects are considered empowering and why. DESIGN: This was an online survey. METHODS: We conducted an online survey between May 2018 and July 2018 amongst professionals interested in dementia care in Europe. Interventions were clustered within the ecological model for health promotion. Reasons from respondents as to why they considered interventions to be empowering were analysed and structured according to a recently developed conceptual framework of empowerment for people living with dementia. RESULTS: Seventy-three respondents from 23 countries together mentioned 98 interventions or projects, of which 90 were unique. Interventions focused on the (inter)personal (n = 54), organizational (n = 15), communal (n = 6) and societal (n = 15) levels. A broad range of interventions were considered empowering, but no interventions were specifically developed for, nor aimed at, empowerment. Reasons as to why respondents considered these interventions as empowering fitted the framework's domains. CONCLUSION: This European survey provides insights into interventions considered empowering for people living with dementia. An important step that needs to be taken is to develop and test interventions that specifically aim to promote empowerment for people living with dementia. IMPACT: Empowerment may encourage people with dementia to live the life they choose, and focus on what is possible, instead of what is no longer possible. Many interventions are considered as empowering for people living with dementia, however no interventions could be identified that were specifically developed for or aimed at empowerment. This study shows that for promoting empowerment, it is necessary to develop and test interventions that specifically aim for empowerment, do this in collaboration with relevant stakeholders, and in this way support people living with dementia to live according to their competencies, talents and wishes.


Subject(s)
Dementia , Health Promotion , Humans , Surveys and Questionnaires , Power, Psychological , Europe
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