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Palliative & Supportive Care Palliative & Supportive Care

Article contents

Trajectories of caregiver burden in families of adult cystic fibrosis patients

Published online by Cambridge University Press:  17 October 2017

Ann Wojtaszczyk ,
Myra Glajchen ,
Russell K. Portenoy ,
Maria Berdella ,
Patricia Walker ,
Malcolm Barrett ,
Jack Chen ,
Amy Plachta ,
Julie Balzano  and
Ashley Fresenius
...Show all authors
Ann Wojtaszczyk
Affiliation:
OptumCare Supportive Care, New York, New York
Myra Glajchen
Affiliation:
MJHS Institute for Innovation in Palliative Care, New York, New York Department of Family and Social Medicine, Albert Einstein College of Medicine, Bronx, New York
Russell K. Portenoy
Affiliation:
MJHS Institute for Innovation in Palliative Care, New York, New York Department of Family and Social Medicine, Albert Einstein College of Medicine, Bronx, New York Department of Neurology, Albert Einstein College of Medicine, Bronx, New York
Maria Berdella
Affiliation:
The Cystic Fibrosis Center, Department of Pulmonary Medicine, Mount Sinai Beth Israel, New York, New York Department of Medicine, Pulmonary, Critical Care, and Sleep Medicine, Icahn School of Medicine at Mount Sinai, New York, New York
Patricia Walker
Affiliation:
The Cystic Fibrosis Center, Department of Pulmonary Medicine, Mount Sinai Beth Israel, New York, New York Department of Medicine, Pulmonary, Critical Care, and Sleep Medicine, Icahn School of Medicine at Mount Sinai, New York, New York
Malcolm Barrett
Affiliation:
University of Southern California, Los Angeles, California
Jack Chen
Affiliation:
MJHS Institute for Innovation in Palliative Care, New York, New York
Amy Plachta
Affiliation:
The Cystic Fibrosis Center, Department of Pulmonary Medicine, Mount Sinai Beth Israel, New York, New York
Julie Balzano
Affiliation:
James J. Peters VA Medical Center, Bronx, New York
Ashley Fresenius
Affiliation:
MJHS Institute for Innovation in Palliative Care, New York, New York
Kenya Wilder
Affiliation:
The Cystic Fibrosis Center, Department of Pulmonary Medicine, Mount Sinai Beth Israel, New York, New York
Elinor Langfelder-Schwind
Affiliation:
The Cystic Fibrosis Center, Department of Pulmonary Medicine, Mount Sinai Beth Israel, New York, New York
Lara Dhingra*
Affiliation:
MJHS Institute for Innovation in Palliative Care, New York, New York Department of Family and Social Medicine, Albert Einstein College of Medicine, Bronx, New York
*
Address correspondence and reprint requests to: Lara Dhingra, MJHS Institute for Innovation in Palliative Care, 39 Broadway, 3rd Floor, New York, New York 10006. E-mail: LDhingra@mjhs.org.
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Abstract

Objectives:

Little is known about the experience of family caregivers of adults with cystic fibrosis (CF). This information is important for the identification of caregivers at risk for burden.

Methods:

This was a longitudinal analysis of survey data obtained from caregivers of adult CF patients participating in an early intervention palliative care trial. Caregivers completed the validated Brief Assessment Scale for Caregivers (BASC) repeatedly over a 28-month period. Mixed-effects modeling evaluated multivariate associations with positive and negative caregiver perceptions over time.

Results:

Of the 54 caregivers, 47.9% were spouses. The mean age was 50.9 years (SD = 13.2); 72.2% were women; 75.9% were married; and 63.0% were employed. At baseline, the BASC revealed large variations in positive and negative perceptions of caregiving. Although average scores over time were unchanging, variation was greater across caregivers than within caregivers (0.49 vs. 0.27, respectively). At baseline, the positive impact of caregiving in the sample was higher than the negative impact. Multivariate analysis revealed that patients' baseline pulmonary function and their full-time employment status predicted caregiver burden over time.

Significance of results:

Caregivers of CF patients varied in their positive and negative caregiving experiences, although burden levels in individual caregivers were stable over time. When the disease was advanced, caregivers of CF patients experienced more overall burden but also more positive impact. This suggests that the role of caregivers may become more meaningful as disease severity worsens. In addition, full-time patient employment was associated with lower caregiver burden regardless of disease severity. This suggests that burden in CF caregivers may be predicted by financial strain or benefits conferred by patient employment. These associations require further investigation to determine whether highly burdened caregivers can be identified and assisted using tailored interventions.

Keywords

Cystic fibrosisAdultsCaregiver burdenPositive experiencesCaregiving trajectories
Type
Original Article
Information
Palliative & Supportive Care , Volume 16 , Issue 6 , December 2018 , pp. 732 - 740
Copyright
Copyright © Cambridge University Press 2017 

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