The HELD research group
Health in Everyday Life among people with neurological Disorders (HELD)
HELD's research program targets knowledge gaps identified in the health care sector and in issues concerning the everyday lives among people with long-term neurological disorders. The research includes and utilizes the perspectives of the persons/ clients/patients and their families/significant others, and the professionals.
HELD's research aims to specifically consider the lived experiences in different contexts when performing explorative studies of phenomena in the everyday lives of people with neurological disorders. HELD's research preferences include conducting pragmatic studies of interventions which involve the actual place where the intervention will most likely be delivered in the future and collaborating with clinicians to support the implementation of study results.
The all encompassing aim of the HELD research group is to build knowledge to inform the development and implementation of interventions aiming to enable participation and health in everyday life among persons living with neurological disorders and their families.
The research group is presently involved in the following ongoing projects:
Long-term goals of HELD research group
- Develop and implement a global model for client-centered interventions after stroke
- Develop models and implement knowledge to enable participation and well-being in everyday life among people living with neurological disorders
- Develop and implement evidence based health promoting programs among people with neurological disorders.
- Engage people with neurological disorders throughout the research process
The HELD research group has performed extensive explorative research in phenomenological qualitative studies of the lived experience linked to core phenomena in rehabilitation of persons with neurological disabilities e.g., the meaning of: awareness of disability, neglect, recapturing of self-care, fall self-efficacy, eating difficulties, memory problems, belonging, and occupational gaps. Qualitative studies have also been performed to illuminate contextual aspects in rehabilitation e.g., the meaning of context in recapturing self-care, work, the meaning of rehabilitation in the home environment, and of place integration. In some qualitative studies complementary and /or contrasting perspectives have been elucidated such as the perspectives of clients/patients and the therapists. Furthermore, time and change after acquired chronic disabilities have been the specific focus in some qualitative studies e.g., couples approaches to changes during the first year after stroke.
The HELD research group has performed explorative longitudinal observational studies of variations in functioning and disabilities, self reported needs of rehabilitation and support, use of, and satisfaction with, health services in cohorts of people with chronic conditions using a patient/client perspective including the family and significant others.
The knowledge gained from qualitative and quantitative studies has informed the development of complex interventions to improve health services for specific target groups of people with long term chronic neurological disorders and the development, validation and modification of instruments, e.g., the Assessment of Awareness of Disability, the Occupational Gaps Questionnaire, the Fatigue Severity Scale, the Swedish Occupational Fatigue Inventory and the Free Recall and Recognition Test.
Thereafter the interventions that have been developed have been tested in pilot studies to inform the planning of a full scale randomized controlled trial, the ongoing LAS-II. The LAS-II is a multi-center randomized controlled trial of a client-centered ADL intervention to improve participation in everyday life after stroke. (ClinicalTrials.gov NCT01417585)
Flow of knowledge development/building in the HELD research group at KI