The Factors affecting Burdens and Quality of Life of the Family Caregivers of Patients with Rare and Incurable Diseases Using Home Ventilators

Moon Sook Hwang; Mi Kyoung Lee; Jeong Rye Song

doi:10.7475/kjan.2014.26.2.191

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Hwang, Lee, and Song: The Factors affecting Burdens and Quality of Life of the Family Caregivers of Patients with Rare and Incurable Diseases Using Home Ventilators

Original Article

Korean Journal of Adult Nursing 2014; 26(2): 191-202.

Published online: 30 April 2014

DOI: https://doi.org/10.7475/kjan.2014.26.2.191

The Factors affecting Burdens and Quality of Life of the Family Caregivers of Patients with Rare and Incurable Diseases Using Home Ventilators

Moon Sook Hwang¹, Mi Kyoung Lee², Jeong Rye Song³

¹Department of Nursing Science, School of Oriental Medicine in WooSuk University, Wanju, Korea.

²Department of Clinical Nursing Science, Samsung Medical Center · School of Medicine, Sungkyunkwan University, Seoul, Korea.

³Department of Home Care Nursing, Aju University Hospital, Suwon, Korea.

Corresponding author: Hwang, Moon Sook. Department of Nursing Science, School of Oriental Medicine, WooSuk University, 443, Samnye-ro, Wanju 565-701, Korea. Tel: +82-63-291-1989, Fax: +82-63-291-1547, msyellow45@hanmail.net

Received 7 October 2013 Revised 31 March 2014 Accepted 7 April 2014

Abstract

Purpose

This study was aimed to survey the actual caregiving conditions of family caregivers who are caring patients with rare and incurable diseases using home ventilators at home, and to clarify any factors affecting their burdens and quality of life.

Methods

A questionnaire survey was performed by the 159 subjects, and the questionnaires contained the actual conditions of caregiving activities, and caregiver's burdens and quality of life. The collected data was analyzed by ANOVA, Pearson's correlation, and stepwise linear regressions.

Results

The mean of burden scores was 3.55 out of 5, and influencing variables included the relationships with patient (spouse), respite (moderate), health status, and diagnosis (non ALS), with the explanatory power of 30.0%. The mean of the quality of life was 2.58 point, and the influencing variables included burdens, health status, and respite (enough), with the explanatory power of 39.0%.

Conclusion

In order to improve the quality of life among family caregivers caring for patients with using a home ventilator, it is required to develop strategies for reducing caregiving burdens as well as to introduce family respite welfare systems to family caregivers.

Keywords: Rare disease, Ventilator, Caregiver, Burden, Quality of life

Figures and Tables

Table 1

General Characteristics and Actual Conditions of Familial Caregiver and its Differences on Burden and QOL of the Familial Caregivers (N=159)

Note. Non respondent excluded; QOL=quality of life.

^†Multiple respondent.

Table 2

General Characteristics of Patients and its Difference on Burden and QOL of Familial Caregivers (N=159)

Note. Non respondent excluded; QOL=quality of life; ALS=amyotriphic lateral sclerosis; SMA=spinal muscle atrophy; MD=muscular disease; IV=invasive ventilator; NH=national health, MA=medical aid.

^†Included student.

Table 3

Burden and QOL of the Familial Caregivers (N=159)

QOL=quality of life

Table 4

Factors Affecting Burden and QOL of the Familial Caregivers

QOL=quality of life.

Notes

This work was financially supported by the research fund of Korean Research Foundation.

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