Jessica de Wit1, Carin D Schröder1, Julia El Mecky2, Anita Beelen3, Leonard H van den Berg4, Johanna M A Visser-Meily1. 1. Center of Excellence in Rehabilitation Medicine,Brain Center Rudolf Magnus,University Medical Center Utrecht, andDe Hoogstraat Rehabilitation,Utrecht,The Netherlands. 2. Department of Clinical Genetics,University Medical Center Groningen,Groningen,The Netherlands. 3. Department of Rehabilitation,Academic Medical Center,University of Amsterdam,Amsterdam,The Netherlands. 4. Department of Neurology,Brain Center Rudolf Magnus,University Medical Center Utrecht,Utrecht,The Netherlands.
Abstract
OBJECTIVE: The aim of this study was to explore the support needs of Dutch informal caregivers of patients with amyotrophic lateral sclerosis (ALS). METHOD: Individual semi-structured interviews were conducted with 21 caregivers of ALS patients. Audio-taped interviews were transcribed and data were analyzed thematically. Result A total of four global support needs emerged: "more personal time", "assistance in applying for resources", "counseling", and "peer contact". Despite their needs, caregivers are reluctant to apply for and accept support. They saw their own needs as secondary to the needs of the patients. Significance of results ALS seems to lead to an intensive caregiving situation with multiple needs emerging in a short period. This study offers targets for the development of supportive interventions. A proactive approach seems essential, acknowledging the importance of the role of the caregivers in the care process at an early stage, informing them about the risk of burden, monitoring their wellbeing, and repeatedly offering support opportunities. Using e-health may help tailor interventions to the caregivers' support needs.
OBJECTIVE: The aim of this study was to explore the support needs of Dutch informal caregivers of patients with amyotrophic lateral sclerosis (ALS). METHOD: Individual semi-structured interviews were conducted with 21 caregivers of ALS patients. Audio-taped interviews were transcribed and data were analyzed thematically. Result A total of four global support needs emerged: "more personal time", "assistance in applying for resources", "counseling", and "peer contact". Despite their needs, caregivers are reluctant to apply for and accept support. They saw their own needs as secondary to the needs of the patients. Significance of results ALS seems to lead to an intensive caregiving situation with multiple needs emerging in a short period. This study offers targets for the development of supportive interventions. A proactive approach seems essential, acknowledging the importance of the role of the caregivers in the care process at an early stage, informing them about the risk of burden, monitoring their wellbeing, and repeatedly offering support opportunities. Using e-health may help tailor interventions to the caregivers' support needs.
Authors: Eline W M Scholten; Maria E H Tromp; Chantal F Hillebregt; Sonja de Groot; Marjolijn Ketelaar; Johanna M A Visser-Meily; Marcel W M Post Journal: Spinal Cord Date: 2018-01-16 Impact factor: 2.772
Authors: Julia M Wu; Mallorie T Tam; Kirsten Buch; Fouziah Khairati; Laurissa Wilson; Elizabeth Bannerman; Alexandra Guerrero; Andrew Eisen; Wendy Toyer; Travis Stevenson; Julie M Robillard Journal: BMC Palliat Care Date: 2022-02-28 Impact factor: 3.234
Authors: Jessica de Wit; Anita Beelen; Constance H C Drossaert; Ruud Kolijn; Leonard H van den Berg; Johanna M A Visser-Meily; Carin D Schröder Journal: BMC Psychol Date: 2018-05-02