When one is sick and two need help: Caregivers’ perspectives on the negative consequences of caring

Informal or family caregivers contribute significantly to individual care, and to the Canadian healthcare system, yet receive limited support from governments, institutions, and healthcare professionals in recognition of their role, or in response to their health and social care needs – often due to...

Descripción completa

Guardado en:
Detalles Bibliográficos
Autores principales: Ilja Ormel, Susan Law, Courtney Abbott, Mark Yaffe, Marc Saint-Cyr, Kerry Kuluski, Debbie Josephson, Ann Macaulay
Formato: article
Lenguaje:EN
Publicado: The Beryl Institute 2017
Materias:
Acceso en línea:https://doaj.org/article/8d113c349c81449fba9280a90449a6a2
Etiquetas: Agregar Etiqueta
Sin Etiquetas, Sea el primero en etiquetar este registro!
Descripción
Sumario:Informal or family caregivers contribute significantly to individual care, and to the Canadian healthcare system, yet receive limited support from governments, institutions, and healthcare professionals in recognition of their role, or in response to their health and social care needs – often due to the negative consequences of caregiving. Learning about the diversity of others’ experiences can positively influence personal decision-making, reduce feelings of isolation, as well as promote adjustment to a personal situation. For caregivers, however, few resources exist that provide reliable information on others’ experiences. We collected the narratives of caregivers’ experiences of caring for someone with a chronic physical illness and produced an evidence-based web resource. Through purposive variation sampling, 42 caregivers were recruited across Canada for interviews in their homes or alternate location using video/audio recording. Qualitative data analysis followed a constant comparison approach. 29 thematic pages were developed for the web site (<a href="http://www.healthexperiences.ca/"><strong>www.healthexperiences.ca</strong></a>) featuring the diversity of lived experiences, and presenting topics important to the caregivers with illustrative video/audio clips, along with other sources of information. Key themes related to caregivers’ perspectives on the negative consequences of caregiving included: the impact upon personal health; challenging interactions with professionals; inconsistent information, limited support from family and friends, and unhelpful societal views. These results contribute to existing evidence of caregiver burden, but uniquely in the voices of caregivers themselves – with constructive insights for understanding the causes of ill health related to caregiving burden and for informing policy and practice.