A day at a time: caregiving on the edge in advanced COPD.

International Journal of Chronic Obstructive Pulmonary Disease
A C SimpsonG M Rocker

Abstract

The human cost of advanced chronic obstructive pulmonary disease (COPD) for informal caregivers in Canada is mostly unknown. Formal care is episodic, and informal caregivers provide the bulk of care between exacerbations. While patients fear becoming burdensome to family, we lack relevant data against which to assess the validity of this fear. The purpose of our qualitative study was to better understand the extent and nature of 'burden' experienced by informal caregivers in advanced COPD. The analysis of 14 informal caregivers interviews yielded the global theme 'a day at a time,' reflecting caregivers' approach to the process of adjusting/coping. Subthemes were: loss of intimate relationship/identity, disease-related demands, and coping-related factors. Caregivers experiencing most distress described greater negative impact on relational dynamics and identity, effects they associated with increasing illness demands especially care recipients' difficult, emotionally controlling attitudes/behaviors. Our findings reflect substantial caregiver vulnerability in terms of an imbalance between burden and coping capacity. Informal caregivers provide necessary, cost-effective care for those living with COPD and/or other chronic illness...Continue Reading

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Citations

Jan 16, 2013·Journal of Palliative Medicine·Robert HortonTasnim Sinuff
Apr 25, 2012·CMAJ : Canadian Medical Association Journal = Journal De L'Association Medicale Canadienne·Graeme RockerCatherine Simpson
Feb 5, 2015·Scandinavian Journal of Caring Sciences·Nienke NakkenDaisy J A Janssen
May 31, 2011·Journal of the American Medical Directors Association·Daisy J A JanssenJos M G A Schols
Aug 6, 2013·Journal of Clinical Nursing·Daniela FigueiredoAlda Marques
Oct 16, 2015·Scandinavian Journal of Caring Sciences·Daniela FigueiredoAlda Marques
May 18, 2016·The Lancet. Respiratory Medicine·MeiLan K HanMark T Dransfield
Oct 27, 2015·Health & Social Care in the Community·Joana CruzDaniela Figueiredo
Oct 28, 2019·Scandinavian Journal of Caring Sciences·Semiha Kar, Neriman Zengin

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