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Original Article

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
Korean Journal of Adult Nursing 2014;26(2):191-202.
Published online: April 30, 2014

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: October 7, 2013   • Revised: March 31, 2014   • Accepted: April 7, 2014

© 2014 Korean Society of Adult Nursing

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  • 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.
  • Key Words: Rare disease; Ventilator; Caregiver; Burden; Quality of life

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

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Table 1

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

kjan-26-191-i001.jpg

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)

kjan-26-191-i002.jpg

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)

kjan-26-191-i003.jpg

QOL=quality of life

Table 4

Factors Affecting Burden and QOL of the Familial Caregivers

kjan-26-191-i004.jpg

QOL=quality of life.

Figure & Data

References

    Citations

    Citations to this article as recorded by  
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    The Factors affecting Burdens and Quality of Life of the Family Caregivers of Patients with Rare and Incurable Diseases Using Home Ventilators
    Korean J Adult Nurs. 2014;26(2):191-202.   Published online April 30, 2014
    DOI: https://doi.org/10.7475/kjan.2014.26.2.191
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    The Factors affecting Burdens and Quality of Life of the Family Caregivers of Patients with Rare and Incurable Diseases Using Home Ventilators
    Korean J Adult Nurs. 2014;26(2):191-202.   Published online April 30, 2014
    DOI: https://doi.org/10.7475/kjan.2014.26.2.191
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    The Factors affecting Burdens and Quality of Life of the Family Caregivers of Patients with Rare and Incurable Diseases Using Home Ventilators
    The Factors affecting Burdens and Quality of Life of the Family Caregivers of Patients with Rare and Incurable Diseases Using Home Ventilators

    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.

    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.

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

    QOL=quality of life

    Factors Affecting Burden and QOL of the Familial Caregivers

    QOL=quality of life.
    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.

    Table 1

    Table 2

    Table 3

    Table 4

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