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Muscled by the System: Informal Caregivers’ Experiences of Transitioning an Older Adult into Long-term Care

Published online by Cambridge University Press:  31 October 2018

Christy Konietzny
Affiliation:
School of Nursing, McMaster University
Sharon Kaasalainen
Affiliation:
School of Nursing, McMaster University
Vanina Dal-Bello Haas
Affiliation:
School of Rehabilitation Science, McMaster University
Cristina Merla
Affiliation:
School of Nursing, McMaster University
Alyssa Te
Affiliation:
School of Nursing, McMaster University
Emily Di Sante
Affiliation:
School of Nursing, McMaster University
Luke Kalfleish
Affiliation:
School of Nursing, McMaster University
Thomas Hadjistavropoulos
Affiliation:
Department of Psychology, University of Regina
Corresponding

Abstract

This study explored informal caregivers’ experiences of transitioning an older adult into long-term care (LTC). Qualitative description guided our analysis of semi-structured interviews with 13 informal caregivers of older adults from three LTC homes in southern Ontario. Our findings illustrate that caregivers experience chronic worry and burden before deciding on, or requiring to apply for, LTC. A sense of lack of control was a prominent theme, especially when caregivers were applying for LTC beds. Participants perceived pushing, pressure, and punishment from the health care system and felt relieved and fortunate after they accepted a bed offer. This tumultuous experience stimulated caregivers to anticipate future transitions. It is recommended that caregivers receive preparation and targeted support to manage transition experiences. Improved communication among health professionals is essential. Penalties for declining an offer for a bed in LTC should be re-examined in relation to its negative influence on caregivers’ experiences.

Résumé

Cette étude a exploré les expériences des aidants devant s’occuper de la transition d’une personne âgée vers une institution de soins de longue durée (SLD). Une approche de description qualitative a été utilisée pour l’analyse d’entretiens semi-structurés effectués auprès de 13 aidants de personnes âgées hébergées en centres de soins de longue durée dans le sud de l’Ontario. Nos résultats illustrent que les aidants ressentent des soucis et un lourd fardeau de manière chronique lorsqu’il s’agit de prendre une décision sur l’hébergement ou de faire une demande pour un centre de soins de longue durée. Le sentiment de ne pas avoir le contrôle était un thème récurrent dans les entretiens, particulièrement dans les cas où les aidants requéraient une place en SLD. Les participants se sont sentis bousculés, sous pression et punis à travers le système de santé, mais soulagés et privilégiés après l’acceptation de l’offre de la place en CHSLD. Cette expérience tumultueuse a encouragé les aidants à anticiper les prochaines transitions. Il est recommandé que les aidants aient accès à une préparation et à un soutien ciblé pour mieux gérer les transitions. Une amélioration de la communication entre les professionnels de la santé est essentielle. Les amendes imposées lors du refus d’une place en SLD devraient être réexaminées, considérant l’impact négatif de celles-ci sur les aidants.

Type
Article
Copyright
Copyright © Canadian Association on Gerontology 2018 

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Footnotes

*

The authors thank the participating caregivers for sharing their challenging experiences and for all the care they provide to our older citizens.

This work was supported by a Saskatchewan Health Research Foundation Team Grant (23574, to T.H. and colleagues). This work was also funded by the Canadian Frailty Network (formerly Technology Evaluation in the Elderly Network), which is supported by the Government of Canada through the Networks of Centres of Excellence program.

The authors have no conflict of interest to declare.

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