Understanding support systems for Parkinson's disease management in community settings: A cross-national qualitative study

Background: Health and social care systems face difficulties in managing multimorbidity, disease burden and complex needs in long-term conditions such as Parkinson's disease. Objective: This study aimed to develop a European understanding of how health and social care professionals can collaborate with stakeholders from different organizations and sectors to enhance the management of Parkinson's disease in a community setting by identifying the existing gaps in this process and how people with Parkinson's disease and their family carers could benefit from these partnerships. Methods: A mixed-methods sequential study was conducted in Denmark, Norway, Spain and the United Kingdom. The findings from the qualitative phase are presented. Individual semistructured interviews were analysed using Braun's and Clarke's thematic analysis. A meta-ethnography approach was used to analyse and synthesize cross-national findings. Results: A total of 41 healthcare professionals and 39 stakeholders from different disciplines and sectors were interviewed in the four countries. The participants acknowledged a lack of awareness of available resources and poor communication between the different support systems in the management of Parkinson's disease. To promote multiagency collaborations, the participants highlighted the need to organize services along the Parkinson's disease journey, patient involvement and strategic involvement of carers in organizing resources and Parkinson's disease care pathways. According to the participants, the benefits from multiagency partnerships could lead to an enhanced continuity of care and specialized knowledge, mobilization of resources in the community, personalized support and improved access to services. Conclusions: Policymakers are called upon to create formal structures that facilitate multisectoral collaborations to promote an integrated system of care for the management of Parkinson's disease in the community. To address this challenge, we propose five strategies showing how organizations can work together to optimize the use of resources and enhance the management of Parkinson's disease throughout the illness trajectory. Patient or public contribution: Patient and Public Involvement groups made up of stakeholders, healthcare professionals, patients with Parkinson's disease and family carers participated in the design of the study, the development of the interview guides and the validation of the findings.This work was supported by the EU Joint Programme-Neurodegenerative Disease Research (JPND). In Norway, the work was funded by the Research Council of Norway (grant number: 299762) and the DAM Foundation (project number FO296567). In Denmark, the work was funded by the Innovation Fund Denmark. In the United Kingdom, the work was funded by the Alzheimer's Society (grant number: 470). The Autonomous Universityof Madrid and the Ministry of Universities of the Spanish Government (Recovery, Transformation and Resilience Plan) were the financing entities of the researcher M. V. Navarta‐Sánchez (Grant number: CA2/RSUE/2021‐00854)S

Early warning scores and trigger recommendations must be used with care in older home nursing care patients: Results from an observational study

Abstract Aims To explore modified early warning scores (MEWSs) and deviating vital signs among older home nursing care patients to determine whether the MEWS trigger recommendations were adhered to in cases of where registered nurses (RNs) suspected acute functional decline. Design Prospective observational study with a descriptive, explorative design. Methods Participants were included from April 2018 to February 2019. Demographic, health‐related and clinical data were collected over a 3‐month period. Results In all, 135 older patients participated. Median MEWS (n = 444) was 1 (interquartile range (IQR) 1–2). Frequently deviating vital signs were respiratory (88.8%) and heart rate (15.3%). Median habitual MEWS (n = 51) was 1 (IQR 0–1). Deviating vital signs were respiratory (72.5%) and heart rate (19.6%). A significant difference between habitual MEWS and MEWS recorded in cases of suspected functional decline was found (p = 0.002). MEWS' trigger recommendations were adhered to in 68.9% of all MEWS measurements

Introducing standardised care plans as a new recording tool in municipal health care

Aims and Objectives To explore how nurses use standardised care plans as a new recording tool in municipal health care, and to identify their thoughts and opinions. Background In spite of being an important information source for nurses, care plans have repeatedly been found unsatisfactory. Structuring and coding information through standardised care plans is expected to raise the quality of recorded information, improve overviews, support evidence‐based practice and facilitate data aggregation. Previous research on this topic has mostly focused on the hospital setting. There is a lack of knowledge on how standardised care plans are used as a recording tool in the municipal healthcare setting. Design An exploratory design with a qualitative approach using three qualitative methods of data collection. The study complied with the Consolidated Criteria for Reporting Qualitative Research. Methods Empirical data were collected in three Norwegian municipalities through participant observation and individual interviews with 17 registered nurses. In addition, we collected nursing records from 20 electronic patient records. Results Use of standardised care plans was influenced by the nurses' consideration of their benefits. Partial implementation created an opportunity for nonuse. There was no consensus regarding how much information to include, and the standardised care plans could become both short and generic, and long and comprehensive. The themes “balancing between the old and the new care planning system,” “considering the usefulness of standardised care plans as a source of information” and “balancing between overview and detail” reflect these findings. Conclusions Nurses' use of standardised care plans was influenced by the plans' partial implementation, their views on usefulness and their personal views on the detail required in a care plan. Relevance to Clinical Practice The structuring of nursing records is a fast‐growing trend in health care. This study gives valuable information for those attempting to implement such structures in municipal health care

The General Health Questionnaire-28 (GHQ-28) as an outcome measurement in a randomized controlled trial in a Norwegian stroke population

Background Several studies have documented the variety of post-stroke psychosocial challenges, which are complex, multifaceted, and affect a patient’s rehabilitation and recovery. Due to the consequences of these challenges, psychosocial well-being should be considered an important outcome of the stroke rehabilitation. Thus, a valid and reliable instrument that is appropriate for the stroke population is required. The factor structure of the Norwegian version of GHQ-28 has not previously been examined when applied to a stroke population. The purpose of this study was to explore the psychometric properties of the GHQ-28 when applied in the stroke population included in the randomized controlled trial; “Psychosocial well-being following stroke”, by evaluating the internal consistency, exploring the factor structure, construct validity and measurement invariance. Methods Data were obtained from 322 individuals with a stroke onset within the past month. The Kaiser-Meyer-Olkin (KMO) test was used to test the sampling adequacy for exploratory factor analysis, and the Bartlett’s test of sphericity was used to test equal variances. Internal consistency was analysed using Cronbach’s alpha. The factor structure of the GHQ-28 was evaluated by exploratory factor analysis (EFA), and a confirmatory factor analysis (CFA) was used to determine the goodness of fit to the original structure of the outcome measurement. Measurement invariance for two time points was evaluated by configural, metric and scalar invariance. Results The results from the EFA supported the four-factor dimensionality, but some of the items were loaded on different factors compared to those of the original structure. The differences resulted in a reduced goodness of fit in the CFA. Measurement invariance at two time points was confirmed. Conclusions The change in mean score from one to six months on the GHQ-28 and the factor composition are assumed to be affected by characteristics in the stroke population. The results, when applying the GHQ-28 in a stroke population, and sub-factor analysis based on the original factor structure should be interpreted with caution. Trial registration ClinicalTrials.gov, NCT02338869 , registered 10/04/2014

Process evaluation of a complex intervention evaluating the effectiveness of home-based rehabilitation in the chronic phase of traumatic brain injury

To perform a process evaluation of a randomized controlled trial (RCT) evaluating a manualized intervention aiming to ameliorate long-term symptoms of traumatic brain injury (TBI) by assessing implementation fidelity, delivery context and acceptability of the intervention. Data from 60 participants were collected during recruitment, intervention delivery and outcome data collection in the RCT. Enrollment records, logs and checklists documented the delivery of the intervention (implementation fidelity) and the collaboration with family members and outside collaborators (delivery context). Attendance-rate, self-reported acceptability and willingness to participate in future studies were used to assess the acceptability of the intervention. The main elements and dose of the intervention were delivered as intended with an excellent adherence to the manual items. Family members co-participated in the intervention for 39 (65%) of the participants. Outside collaborators were contacted for 32 (53%) of the participants. Acceptability scores were high for participants, family members and therapists. The intervention was successfully delivered with high acceptability. This process evaluation informs researchers, clinicians and stakeholders about important factors influencing the outcomes of the intervention that should be considered in clinical implementation of rehabilitation interventions. Pre-registered 4th of June 2018 at clinicaltrials.gov (NCT03545594).</p

Understanding support systems for Parkinson's disease management in community settings: a cross‐national qualitative study

Background: health and social care systems face difficulties in managing multimorbidity, disease burden and complex needs in long-term conditions such as Parkinson's disease.Objective: this study aimed to develop a European understanding of how health and social care professionals can collaborate with stakeholders from different organizations and sectors to enhance the management of Parkinson's disease in a community setting by identifying the existing gaps in this process and how people with Parkinson's disease and their family carers could benefit from these partnerships.Methods: a mixed-methods sequential study was conducted in Denmark, Norway, Spain and the United Kingdom. The findings from the qualitative phase are presented. Individual semistructured interviews were analysed using Braun's and Clarke's thematic analysis. A meta-ethnography approach was used to analyse and synthesize cross-national findings.Results: a total of 41 healthcare professionals and 39 stakeholders from different disciplines and sectors were interviewed in the four countries. The participants acknowledged a lack of awareness of available resources and poor communication between the different support systems in the management of Parkinson's disease. To promote multiagency collaborations, the participants highlighted the need to organize services along the Parkinson's disease journey, patient involvement and strategic involvement of carers in organizing resources and Parkinson's disease care pathways. According to the participants, the benefits from multiagency partnerships could lead to an enhanced continuity of care and specialized knowledge, mobilization of resources in the community, personalized support and improved access to services.Conclusions: policymakers are called upon to create formal structures that facilitate multisectoral collaborations to promote an integrated system of care for the management of Parkinson's disease in the community. To address this challenge, we propose five strategies showing how organizations can work together to optimize the use of resources and enhance the management of Parkinson's disease throughout the illness trajectory.Patient or Public ContributionPatient and Public Involvement groups made up of stakeholders, healthcare professionals, patients with Parkinson's disease and family carers participated in the design of the study, the development of the interview guides and the validation of the findings

Introducing standardised care plans as a new recording tool in municipal health care

Aims and Objectives To explore how nurses use standardised care plans as a new recording tool in municipal health care, and to identify their thoughts and opinions. Background In spite of being an important information source for nurses, care plans have repeatedly been found unsatisfactory. Structuring and coding information through standardised care plans is expected to raise the quality of recorded information, improve overviews, support evidence‐based practice and facilitate data aggregation. Previous research on this topic has mostly focused on the hospital setting. There is a lack of knowledge on how standardised care plans are used as a recording tool in the municipal healthcare setting. Design An exploratory design with a qualitative approach using three qualitative methods of data collection. The study complied with the Consolidated Criteria for Reporting Qualitative Research. Methods Empirical data were collected in three Norwegian municipalities through participant observation and individual interviews with 17 registered nurses. In addition, we collected nursing records from 20 electronic patient records. Results Use of standardised care plans was influenced by the nurses' consideration of their benefits. Partial implementation created an opportunity for nonuse. There was no consensus regarding how much information to include, and the standardised care plans could become both short and generic, and long and comprehensive. The themes “balancing between the old and the new care planning system,” “considering the usefulness of standardised care plans as a source of information” and “balancing between overview and detail” reflect these findings. Conclusions Nurses' use of standardised care plans was influenced by the plans' partial implementation, their views on usefulness and their personal views on the detail required in a care plan. Relevance to Clinical Practice The structuring of nursing records is a fast‐growing trend in health care. This study gives valuable information for those attempting to implement such structures in municipal health care

Rehabilitation for children with chronic acquired brain injury in the Child in Context Intervention (CICI) study: study protocol for a randomized controlled trial

Background Pediatric acquired brain injury (pABI) is associated with long-term cognitive, behavioral, social, and emotional problems, which may affect the quality of life, school, and family functioning. Yet, there is a lack of evidence-based community-centered rehabilitation programs for chronic pABI and these children do not systematically receive comprehensive rehabilitation. The Child In Context Intervention (CICI) study is a pragmatic randomized controlled trial (RCT) for children with chronic pABI, which aims to evaluate the effectiveness of an individualized and goal-oriented intervention targeting everyday functioning of the child and family. Methods Children aged 6–16 years with MRI/CT-verified intracranial abnormalities will be included in the CICI study if they have persistent self- or parent-reported cognitive, emotional, and/or behavioral challenges 1 year or more after insult and attend school regularly. A total of 70 families will be randomized 1:1 to an intervention or a control group. The intervention consists of seven family sessions, one parent seminar, and four school sessions delivered over approximately 6 months. The parent seminar will be held in person, and the other sessions will mainly be video based. The children’s and families’ self-reported major challenges in everyday life will be targeted using SMART goals. Evidence-based strategies, when available, will be applied to achieve the goals, combined with psychoeducation. Goal attainment scaling (GAS) will be used to evaluate goal attainment. Data is collected at baseline and after approximately 6 and 9 months. External assessors are blinded to group allocation. Primary outcomes are parent-reported brain injury symptoms in children and parenting self-efficacy at 9 months of follow-up. Secondary outcomes include child-reported brain injury symptoms, quality of life, executive functioning in daily life, parent emotional symptoms, family functioning, and unmet family health care needs. A process evaluation will be conducted. Discussion The current study provides an innovative approach to rehabilitation for children in the chronic phase of ABI and their families. This complex intervention may contribute to the development of evidence-based, high-quality rehabilitation for a large patient group, which is underrepresented in clinical research. It may also improve collaboration between specialized rehabilitation facilities, schools, and local health care services. Inclusion for the trial started in April 2021. Trial registration ClinicalTrials.gov NCT04798859 . Registered on March 15, 202