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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: [email protected].
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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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References

REFERENCES

Adelman, R.D., Tmanova, L.L., Delgado, D., et al. (2014). Caregiver burden: A clinical review. The Journal of the American Medical Association, 311(10), 1052–1060.Google Scholar
Balzano, J., Fresenius, A., Walker, P., et al. (2016). Web-based symptom screening in cystic fibrosis patients: A feasibility study. Journal of Cystic Fibrosis, 15(1), 102–108.Google Scholar
Besier, T., Born, A., Henrich, G., et al. (2011). Anxiety, depression, and life satisfaction in parents caring for children with cystic fibrosis. Pediatric Pulmonology. 46(7), 672–682.Google Scholar
Burton, A.M., Sautter, J.M., Tulsky, J.A., et al. (2012). Burden and well-being among a diverse sample of cancer, congestive heart failure, and chronic obstructive pulmonary disease caregivers. Journal of Pain and Symptom Management, 44(3), 410–420.Google Scholar
Cystic Fibrosis Foundation (2016). About Cystic Fibrosis. Available from https://www.cff.org/What-is-CF/About-Cystic-Fibrosis/.Google Scholar
Davies, J.C. & Alton, E. (2009). Monitoring respiratory disease severity in cystic fibrosis. Respiratory Care, 54(5), 606–615.Google Scholar
Dellon, E.P., Shores, M.D., Nelson, K.I., et al. (2010). Caregiver perspectives on discussions about the use of intensive treatments in cystic fibrosis. Journal of Pain and Symptom Management. 40(6), 821–828.Google Scholar
Etters, L., Goodall, D. & Harrison, B.E. (2008). Caregiver burden among dementia patient caregivers: A review of the literature. Journal of the American Academy of Nurse Practitioners, 20(8), 423–428.Google Scholar
Freedman, V.A., Cornman, J.C. & Carr, D. (2014). Is spousal caregiving associated with enhanced well-being? New evidence from the panel study of income dynamics. The Journals of Gerontology. Series B. Psychological Sciences and Social Sciences, 69(6), 861–869.Google Scholar
Gallicchio, L., Siddiqi, N., Langenberg, P., et al. (2002). Gender differences in burden and depression among informal caregivers of demented elders in the community. International Journal of Geriatric Psychiatry, 17(2), 154–163.Google Scholar
Glajchen, M., Kornblith, A., Homel, P., et al. (2005). Development of a brief assessment scale for caregivers of the medically ill. Journal of Pain and Symptom Management, 29(3), 245–254.Google Scholar
Habib, A.R., Manji, J., Wilcox, P.G., et al. (2015). A systematic review of factors associated with health-related quality of life in adolescents and adults with cystic fibrosis. Annals of the American Thoracic Society. 12(3), 420–428.Google Scholar
Hosmer, D.W., Lemeshow, S. & Sturdivant, R.X. (2013). Applied Logistic Regression. Hoboken, NJ: Wiley.Google Scholar
IBM Corp (2013). IBM SPSS Statistics for Windows (v. 22.0). Chicago: SPSS Inc.Google Scholar
Li, Q. & Loke, A.Y. (2013). The positive aspects of caregiving for cancer patients: A critical review of the literature and directions for future research. Psycho-Oncology. 22(11), 2399–2407.Google Scholar
Oldenkamp, M., Hagedoorn, M., Slaets, J., et al. (2016). Subjective burden among spousal and adult–child informal caregivers of older adults: Results from a longitudinal cohort study. BMC Geriatrics, 16(1), 208.Google Scholar
Quittner, A.L., Goldbeck, L., Abbott, J., et al. (2014). Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: Results of the International Depression Epidemiological Study across nine countries. Thorax, 69(12), 1090–1097.Google Scholar
Quittner, A.L., Saez-Flores, E. & Barton, J.D. (2016). The psychological burden of cystic fibrosis. Current Opinion in Pulmonary Medicine, 22(2), 187–191.Google Scholar
Ratjen, F., Bell, S.C., Rowe, S.M., et al. (2015). Cystic fibrosis. Nature Reviews. Disease Primers, 1, 15010.Google Scholar
R Core Team (2016). R: A Language and Environment for Statistical Computing (v. 3.3.1). Vienna: R Foundation for Statistical Computing.Google Scholar
Sawicki, G.S. & Tiddens, H. (2012). Managing treatment complexity in cystic fibrosis: Challenges and opportunities. Pediatric Pulmonology. 47(6), 523–533.Google Scholar
Sawicki, G.S., Sellers, D.E. & Robinson, W.M. (2008). Self-reported physical and psychological symptom burden in adults with cystic fibrosis. Journal of Pain and Symptom Management, 35(4), 372–380.Google Scholar
Sawicki, G.S., Sellers, D.E. & Robinson, W.M. (2009). High treatment burden in adults with cystic fibrosis: Challenges to disease self-management. Journal of Cystic Fibrosis, 8(2), 91–96.Google Scholar
StataCorp (2015). Stata Statistical Software: Release 14. College Station, TX: StataCorp LP.Google Scholar
Vincent, C., Desrosiers, J., Landreville, P., et al. (2009). Burden of caregivers of people with stroke: Evolution and predictors. Cerebrovascular Diseases, 27(5), 456–464.Google Scholar