Annemarie P M Stiekema1,2,3, Ieke Winkens2,4, Rudolf Ponds1,2,3,5, Marjolein E De Vugt1,3, Caroline M Van Heugten1,2,4. 1. Department of Psychiatry and Neuropsychology, School of Mental Health and Neuroscience, Maastricht University, Maastricht, The Netherlands. 2. Limburg Brain Injury Center, Maastricht University, Maastricht, The Netherlands. 3. Alzheimer Center Limburg, Maastricht University, Maastricht, The Netherlands. 4. Department of Neuropsychology and Psychopharmacology, Faculty of Psychology and Neuroscience, Maastricht University, Maastricht, The Netherlands. 5. Department of Brain Injury, Adelante Rehabilitation Centre, Hoensbroek, The Netherlands.
Abstract
Objective: Although the long-term consequences of acquired brain injury are frequent and diverse, care and support over the longer term is an under-addressed issue. This study aims to identify the perceived needs of people with acquired brain injury and their partners. Methods: Interviews with four focus groups of people with brain injury (n = 17) and three partner groups (n = 19) were audio- and videotaped, transcribed verbatim and analyzed using inductive content analysis. Results: Needs were perceived on the intrapersonal, social, healthcare and societal levels, focusing on three themes: 1) Adaptation to changes, including awareness of consequences, acceptance, role changes and dealing with these; 2) Understanding from relatives/friends, professionals, institutions and society; 3) Timely, individualized care, involving information, transition to home, searching for support, peer support and support for partner/family.Discussion: The variety and complexity of needs show that people with brain injury and their partners need to find a new balance in order to live a fulfilling life despite the consequences of brain injury. The overarching need for continuity of care from the transition to home onwards provides important implications for supporting the process of learning how to live well with brain injury.
Objective: Although the long-term consequences of acquired brain injury are frequent and diverse, care and support over the longer term is an under-addressed issue. This study aims to identify the perceived needs of people with acquired brain injury and their partners. Methods: Interviews with four focus groups of people with brain injury (n = 17) and three partner groups (n = 19) were audio- and videotaped, transcribed verbatim and analyzed using inductive content analysis. Results: Needs were perceived on the intrapersonal, social, healthcare and societal levels, focusing on three themes: 1) Adaptation to changes, including awareness of consequences, acceptance, role changes and dealing with these; 2) Understanding from relatives/friends, professionals, institutions and society; 3) Timely, individualized care, involving information, transition to home, searching for support, peer support and support for partner/family.Discussion: The variety and complexity of needs show that people with brain injury and their partners need to find a new balance in order to live a fulfilling life despite the consequences of brain injury. The overarching need for continuity of care from the transition to home onwards provides important implications for supporting the process of learning how to live well with brain injury.
Authors: Anne-Fleur Domensino; Jolanda C M van Haastregt; Ieke Winkens; Coen A M van Bennekom; Caroline M van Heugten Journal: PLoS One Date: 2020-06-22 Impact factor: 3.240
Authors: Marta Pérez-Rodríguez; Saleky García-Gómez; Javier Coterón; Juan José García-Hernández; Javier Pérez-Tejero Journal: Medicina (Kaunas) Date: 2021-01-29 Impact factor: 2.430
Authors: Annemarie P M Stiekema; Christine Resch; Mireille Donkervoort; Natska Jansen; Kitty H M Jurrius; Judith M Zadoks; Caroline M van Heugten Journal: Trials Date: 2020-11-17 Impact factor: 2.279
Authors: Marta Pérez-Rodríguez; Andrea Gutiérrez-Suárez; Ruben Barakat; Javier Pérez-Tejero Journal: Medicine (Baltimore) Date: 2022-02-04 Impact factor: 1.889