Dataset Information

Recruitment of Adolescent Young Carers to a Psychosocial Support Intervention Study in Six European Countries: Lessons Learned from the ME-WE Project.

ABSTRACT: Young carers provide a substantial amount of care to family members and support to friends, yet their situation has not been actively addressed in research and policy in many European countries or indeed globally. Awareness of their situation by professionals and among children and young carers themselves remains low overall. Thus, young carers remain a largely hidden group within society. This study reports and analyses the recruitment process in a multi-centre intervention study offering psychosocial support to adolescent young carers (AYCs) aged 15-17 years. A cluster-randomised controlled trial was designed, with recruitment taking place in Italy, the Netherlands, Slovenia, Sweden, Switzerland and the United Kingdom exploiting various channels, including partnerships with schools, health and social services and carers organisations. In total, 478 AYCs were recruited and, after screening failures, withdrawals and initial dropouts, 217 were enrolled and started the intervention. Challenges encountered in reaching, recruiting and retaining AYCs included low levels of awareness among AYCs, a low willingness to participate in study activities, uncertainty about the prevalence of AYCs, a limited school capacity to support the recruitment; COVID-19 spreading in 2020-2021 and related restrictions. Based on this experience, recommendations are put forward for how to better engage AYCs in research.

SUBMITTER: Barbabella F

PROVIDER: S-EPMC10049644 | biostudies-literature | 2023 Mar

REPOSITORIES: biostudies-literature

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Recruitment of Adolescent Young Carers to a Psychosocial Support Intervention Study in Six European Countries: Lessons Learned from the ME-WE Project.

Barbabella Francesco F Magnusson Lennart L Boccaletti Licia L Casu Giulia G Hlebec Valentina V Bolko Irena I Lewis Feylyn F Hoefman Renske R Brolin Rosita R Santini Sara S Socci Marco M D'Amen Barbara B de Jong Yvonne Y Bouwman Tamara T de Jong Nynke N Leu Agnes A Phelps Daniel D Guggiari Elena E Wirth Alexandra A Morgan Vicky V Becker Saul S Hanson Elizabeth E

International journal of environmental research and public health 20230314 6

Young carers provide a substantial amount of care to family members and support to friends, yet their situation has not been actively addressed in research and policy in many European countries or indeed globally. Awareness of their situation by professionals and among children and young carers themselves remains low overall. Thus, young carers remain a largely hidden group within society. This study reports and analyses the recruitment process in a multi-centre intervention study offering psych ...[more]

PMID: 36981983

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Project description:BackgroundClinical trials management can be studied using project management theory. The CYCLE pilot randomized controlled trial (RCT) was conducted to determine the feasibility of a future rehabilitation trial of early in-bed cycling in the intensive care unit (ICU). In-bed cycling is a novel intervention, not typically available in ICUs. Implementation of this intervention requires personnel with specialized clinical expertise caring for critically ill patients and use of the in-bed cycle. Our objective was to describe the implementation and conduct of our pilot RCT using a project management approach.MethodsWe retrospectively reviewed activities, timelines, and personnel involved in the trial. We organized activities into four project management phases: initiation, planning, execution, and monitoring and controlling. Data sources included Methods Centre documents used for trial coordination and conduct, and the trial data set. We report descriptive statistics as counts and proportions and also medians and quartiles, and we summarize the lessons learned.ResultsSeven ICUs in Canada participated in the trial. Time from research ethics board and contracts submission to first enrolment was a median (first quartile, third quartile) of 185 (146, 209) and 162 (114, 181) days, respectively. We trained 128 personnel on the CYCLE pilot RCT protocol, and 80 (63%) completed trial-related activities. Four sites required additional training after start-up due to staff turnover and leaves of absence. Over 15 months, we screened 864 patients: 256 were eligible and 66 were enrolled. Despite an 85% consent rate, 74% (190/256) of eligible patients were not randomized, largely (80% [152/190]) due to physiotherapist availability. Thirteen percent of recruitment weeks were lost due to physiotherapist staffing shortages. We highlight five key lessons learned: (1) prepare and anticipate site needs; (2) communicate regularly; (3) proactively analyse and act on process measure data; (4) develop contingency plans; (5) express appreciation to participating sites.ConclusionsOur analysis highlights the scope of relevant activities, rigorous training and monitoring, number and types of required personnel, and time required to conduct a multicentre ICU rehabilitation intervention trial. Our lessons learned can help others interested in implementing complex intervention trials, such as rehabilitation.Trial registrationClinicalTrials.gov, NCT02377830 . Registered prospectively on 4 March 2015.

Project description:An important innovation in healthcare is the value-based healthcare (VBHC) framework, a way to solve health services' sustainability problems and ensure continuous improvement of healthcare quality. The Quality and Safety Unit at the Hospital Universitario 12 de Octubre has been since May 2018 coordinating the implementation of several healthcare innovation projects within the paradigm of VBHC. Implementing innovations in a complex institution, such as a tertiary hospital, is a challenge; we present here the lessons learned in the last 4 years of work. We detail exclusively the aspects related to continuous improvement and value addition to the process. In summary, for any VBHC project implementation, we found that there are five main issues: (1) adequate data quality; (2) development of data recording and visualization tools; (3) minimizing healthcare professional's effort to record data; (4) centralize governance, coordination, and transparency policies; (5) managerial's implication and follow-up. We described six steps key to ensure a successful implementation which are the following: testing the feasibility and complexities of the entry process; establishing leadership and coordination of the project; developing patient-reported outcomes and experience measurements; developing and adapting the data recording and data analysis tools; piloting in one or more medical conditions and evaluating the results and project management. The implementation duration can vary depending on the complexity of the Medical Condition Clinical Process and Patient Pathways. However, we estimate that the implementing phase will last a minimum of 18 and a maximum of 24 months. During this period, the institution should be capable of designing and implementing the proposed innovations. The implementation costs vary as well depending on the complexity, ranging from 90,000 euros to 250,000 euros. Implementation problems included the resistance to change of institutions and professionals. To date, there are few successful, published implementations of value-based healthcare. Our quality of care and patient safety methodological approach to the implementation has provided a particular advantage.

Dataset Information

Recruitment of Adolescent Young Carers to a Psychosocial Support Intervention Study in Six European Countries: Lessons Learned from the ME-WE Project.

Publications

Recruitment of Adolescent Young Carers to a Psychosocial Support Intervention Study in Six European Countries: Lessons Learned from the ME-WE Project.

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