Rose Thompson1, Mike Kerr2, Mike Glynn3, Christine Linehan4. 1. Unit for Social and Community Psychiatry, WHO Collaborative Centre for Mental Health Services Development, Barts and the London School of Medicine, Queen Mary University of London, Newham Centre for Mental Health, United Kingdom. 2. Institute of Psychological Medicine and Clinical Neurosciences, Cardiff University, Cardiff, United Kingdom. 3. Epilepsy Ireland, Dublin, Ireland. 4. School of Psychology, University College Dublin, Ireland; Tizard Centre, University of Kent, Canterbury, Kent, United Kingdom; School of Social Work and Social Policy, Trinity College Dublin, Ireland. Electronic address: christine.linehan@ucd.ie.
Abstract
PURPOSE: To examine the caregiving impact of those who support a family member with intellectual disability and epilepsy. METHODS: An online, qualitative international survey was conducted via the auspices of the International Bureau of Epilepsy with various stakeholders who support individuals who have intellectual disability and epilepsy. Qualitative comments were analyzed from respondents who identified themselves as family members (n=48; 36%) who referred specifically to the impact of supporting a family member with these combined disabilities. RESULTS: Four main domains, which were comprised of ten themes, were derived from the qualitative data using Braun and Clarke's qualitative framework. These domains comprised (1) practical concerns, (2) disrupted family dynamics, (3) emotional burden and (4) positive experiences. In combination these themes illustrate the pervasive impact on family life for those supporting an individual with complex needs. Financial concerns, coordination and responsibility of care, diverted attention from other family members and social isolation all contributed a significant burden of care for family members. Positive aspects were, however, also cited including the closeness of the family unit and a fostering of altruistic behavior. CONCLUSION: The study provides an insight into an under-researched area. The burden of caring for a family member across the lifespan has a largely negative and pervasive impact. Targeted service provision could contribute to an amelioration of the challenges faced by these families.
PURPOSE: To examine the caregiving impact of those who support a family member with intellectual disability and epilepsy. METHODS: An online, qualitative international survey was conducted via the auspices of the International Bureau of Epilepsy with various stakeholders who support individuals who have intellectual disability and epilepsy. Qualitative comments were analyzed from respondents who identified themselves as family members (n=48; 36%) who referred specifically to the impact of supporting a family member with these combined disabilities. RESULTS: Four main domains, which were comprised of ten themes, were derived from the qualitative data using Braun and Clarke's qualitative framework. These domains comprised (1) practical concerns, (2) disrupted family dynamics, (3) emotional burden and (4) positive experiences. In combination these themes illustrate the pervasive impact on family life for those supporting an individual with complex needs. Financial concerns, coordination and responsibility of care, diverted attention from other family members and social isolation all contributed a significant burden of care for family members. Positive aspects were, however, also cited including the closeness of the family unit and a fostering of altruistic behavior. CONCLUSION: The study provides an insight into an under-researched area. The burden of caring for a family member across the lifespan has a largely negative and pervasive impact. Targeted service provision could contribute to an amelioration of the challenges faced by these families.
Authors: Gemma Rogers; Gisela Perez-Olivas; Biza Stenfert Kroese; Varsha Patel; Glynis Murphy; John Rose; Vivien Cooper; Peter E Langdon; Steve Hiles; Clair Clifford; Paul Willner Journal: J Appl Res Intellect Disabil Date: 2021-03-23
Authors: Silvana E Mengoni; Bob Gates; Georgina Parkes; David Wellsted; Garry Barton; Howard Ring; Mary Ellen Khoo; Deela Monji-Patel; Karin Friedli; Asif Zia; Marie-Anne Durand Journal: Epilepsy Behav Date: 2016-10-11 Impact factor: 2.937
Authors: María Inmaculada Fernández-Ávalos; María Nieves Pérez-Marfil; Rosario Ferrer-Cascales; Francisco Cruz-Quintana; Violeta Clement-Carbonell; Manuel Fernández-Alcántara Journal: Int J Environ Res Public Health Date: 2020-11-23 Impact factor: 3.390