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- Factors Influencing Psychosocial Well-Being in Family Caregivers of People with Amyotrophic Lateral Sclerosis
- Hyeon Sik Chu, Young Ran Tak, Seung Hyun Kim
- J Korean Acad Nurs 2018;48(4):454-464. Published online January 15, 2018
- DOI: https://doi.org/10.4040/jkan.2018.48.4.454
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Abstract
PDF Abstract Purpose The purpose of this study was to identify factors influencing psychosocial well-being in family caregivers of patients with amyotrophic lateral sclerosis (ALS).
Methods A descriptive correlational design was used. The transactional model of stress and coping was used to investigate the psychosocial well-being of 137 family caregivers of patients with ALS. Data were collected through self-reported questionnaires from January to November 2016. Data were analyzed using an independent t-test, one-way ANOVA, Pearson's correlation, and hierarchical multiple regression analysis with the SPSS WIN 21.0 program.
Results The regression model had an adjusted R2 of .49, which indicated that meaning-focused coping, social support, ALS patient-family caregiver relationship (especially a spousal relationship), and tracheostomy were significant predictors of caregivers’ psychosocial well-being.
Conclusion Meaning-focused coping and social support significantly influenced caregivers’ psychosocial well-being. Therefore, interventions to improve caregivers’ psychosocial well-being must focus on increasing meaning-focused coping and social support resources.
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Citations
Citations to this article as recorded by
- Educational Intervention for the Management of Nonspecific Lower Back Pain in Nonprofessional Caregivers (TRANSFE Program): A Quasi-Experimental Study
Víctor Ortiz-Mallasén, Eloy Claramonte-Gual, Águeda Cervera-Gasch, Desirée Mena-Tudela, María Jesús Valero-Chillerón, Laura Andreu-Pejó, Irene Llagostera-Reverter, Víctor Manuel González-Chordá
Nursing Reports.2024; 14(3): 1570. CrossRef - Analysing the influencing factors on caregivers’ burden among amyotrophic lateral sclerosis patients in China: a cross-sectional study based on data mining
Ling Lian, Minying Zheng, Ruojie He, Jianing Lin, Weineng Chen, Zhong Pei, Xiaoli Yao
BMJ Open.2022; 12(9): e066402. CrossRef - Evaluación de la efectividad de un programa de intervención en cuidadores no profesionales de personas dependientes en el ámbito de la atención primaria
Víctor Ortiz-Mallasén, Eloy Claramonte-Gual, Águeda Cervera-Gasch, Esther Cabrera-Torres
Atención Primaria.2021; 53(1): 60. CrossRef - Family Caregiver Suffering in Caring for Patients with Amyotrophic Lateral Sclerosis in Korea
Juyeon Oh, Jung-A Kim, Min Sun Chu
International Journal of Environmental Research and Public Health.2021; 18(9): 4937. CrossRef - Psychometric properties of the Korean version of the positive aspects of caregiving scale for family caregivers of people with amyotrophic lateral sclerosis
Hyeon Sik Chu, Young Ran Tak
Palliative and Supportive Care.2020; 18(6): 699. CrossRef - Theme 13 Clinical management and support
Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration.2019; 20(sup1): 327. CrossRef
- Educational Intervention for the Management of Nonspecific Lower Back Pain in Nonprofessional Caregivers (TRANSFE Program): A Quasi-Experimental Study
- 336 View
- 3 Download
- 6 Crossref
- Depression and Caregiving Burden in Families of Patients with Amyotrophic Lateral Sclerosis
- Juyeon Oh, Ji Won An, Ki-Wook Oh, Seong-Il Oh, Jung A Kim, Seung Hyun Kim, Jeong Seop Lee
- J Korean Acad Nurs 2015;45(2):202-210. Published online April 30, 2015
- DOI: https://doi.org/10.4040/jkan.2015.45.2.202
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Abstract
PDF
Purpose The purpose of this study was to describe depression, caregiving burden and the correlation of the two variables in the families of patients with amyotrophic lateral sclerosis (ALS) and to clarify factors predicting caregiving burden.
Methods A descriptive and cross-sectional study was conducted with 139 family members who provided care to patients with ALS. The characteristics of patients and families, Korean-Beck Depression Inventory (K-BDI), Korean version of Zarit Burden Interview (K-ZBI) and Korean-Amyotrophic Lateral Sclerosis Functional Rating Scale - Revised (K-ALSFRS-R) were used as study measures.
Results The mean score for K-BDI was 19.39 out of 63 suggesting sub-clinical depression and 38.2% of the family members exhibited depression. The mean score for K-ZBI was 66.03 out of 88. The predictors for K-ZBI were K-BDI, age of family member, length of time spent per day in caring, relationship to patient and K-ALSFRS-R.
Conclusion The results of this study suggest that levels of depression and caregiving burden are high among family members caring for patients with ALS. As depression is associated with caregiving burden, screening and emotional supports should be provided to reduce the burden of care for these family. Support programs to alleviate the care burden are also needed, considering family demographics, time per day in caring giving and K-ALSFRS-R.
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Citations
Citations to this article as recorded by- Effectiveness of the Mindfulness-Based Interventions for Caregivers of Patients with Amyotrophic Lateral Sclerosis: A Scoping Review
Lutfiye İpek, Gokce Yagmur Gunes Gencer, Pınar Kısacık, Sibel Bozgeyik
Journal of Nursology.2025; 28(1): 89. CrossRef - Caring for people living with ALS in Korea: challenges and possible paths forward
Crystal Jing Jing Yeo, Zachary Simmons
Muscle & Nerve.2024; 70(5): 881. CrossRef - The quality of life and depression in primary caregivers of patients with amyotrophic lateral sclerosis is affected by patient-related and culture-specific conditions
Anna Maksymowicz-Śliwińska, Dorothée Lulé, Krzysztof NieporĘcki, Katarzyna Ciećwierska, Albert C. Ludolph, Magdalena Kuźma-Kozakiewicz
Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration.2023; 24(3-4): 317. CrossRef - The experiences of patients with amyotrophic lateral sclerosis of their decision‐making processes to invasive home mechanical ventilation—A qualitative study
Tina Thorborg, Jeanette Finderup, Dorte Skriver Winther, Charlotte Kirkegaard Lorenzen, Pia Dreyer
Nursing Open.2023; 10(8): 5139. CrossRef - Psychological Support for Family Caregivers of Patients With Amyotrophic Lateral Sclerosis at the Time of the Coronavirus Disease 2019 Pandemic: A Pilot Study Using a Telemedicine Approach
Minoo Sharbafshaaer, Daniela Buonanno, Carla Passaniti, Manuela De Stefano, Sabrina Esposito, Fabrizio Canale, Giulia D’Alvano, Marcello Silvestro, Antonio Russo, Gioacchino Tedeschi, Mattia Siciliano, Francesca Trojsi
Frontiers in Psychiatry.2022;[Epub] CrossRef - Factors associated with caring behaviors of family caregivers for patients receiving home mechanical ventilation with tracheostomy: A cross-sectional study
Hyang Sook Kim, Chung Eun Lee, Yong Sook Yang, Tai-Heng Chen
PLOS ONE.2021; 16(7): e0254987. CrossRef - Family Caregiver Suffering in Caring for Patients with Amyotrophic Lateral Sclerosis in Korea
Juyeon Oh, Jung-A Kim, Min Sun Chu
International Journal of Environmental Research and Public Health.2021; 18(9): 4937. CrossRef - Everyday life experiences of close relatives of people with amyotrophic lateral sclerosis receiving home mechanical ventilation—A qualitative study
Dorte Winther, Charlotte Kirkegaard Lorenzen, Pia Dreyer
Journal of Clinical Nursing.2020; 29(13-14): 2306. CrossRef - Unmet supportive care needs mediate the relationship between functional status and quality of life in patients with amyotrophic lateral sclerosis
Juyeon Oh, Seung Hyun Kim, Jung A Kim
Palliative and Supportive Care.2019; 17(6): 650. CrossRef - The Impact of Cognitive and Behavioral Symptoms on ALS Patients and Their Caregivers
Jashelle Caga, Sharpley Hsieh, Patricia Lillo, Kaitlin Dudley, Eneida Mioshi
Frontiers in Neurology.2019;[Epub] CrossRef - Validity and Utility of the Center for Epidemiological Studies Depression Scale for Detecting Depression in Family Caregivers of Persons with Dementia
Jiangbo Ying, Philip Yap, Mihir Gandhi, Tau Ming Liew
Dementia and Geriatric Cognitive Disorders.2019; 47(4-6): 323. CrossRef - Caregiving burden and depression in paid caregivers of hospitalized patients: a pilot study in China
Yao-Dan Liang, Ya-Li Wang, Zhi Li, Li He, Ying Xu, Qing Zhang, Gui-Ying You, Xu-Hua Mi
BMC Public Health.2018;[Epub] CrossRef - The amyotrophic lateral sclerosis supportive care needs assessment instrument: Development and psychometric evaluation
Juyeon Oh, Seong-il Oh, Jung A Kim
Palliative and Supportive Care.2018; 16(6): 692. CrossRef - Factors Influencing Psychosocial Well-Being in Family Caregivers of People with Amyotrophic Lateral Sclerosis
Hyeon Sik Chu, Young Ran Tak, Seung Hyun Kim
Journal of Korean Academy of Nursing.2018; 48(4): 454. CrossRef - Factor analysis of the Zarit Burden Interview in family caregivers of patients with amyotrophic lateral sclerosis
Juyeon Oh, Jung A. Kim
Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration.2018; 19(1-2): 50. CrossRef - An exploration into caring for a stroke-survivor in Lima, Peru: Emotional impact, stress factors, coping mechanisms and unmet needs of informal caregivers
M. Amalia Pesantes, Lena R. Brandt, Alessandra Ipince, J. Jaime Miranda, Francisco Diez-Canseco
eNeurologicalSci.2017; 6: 33. CrossRef - Information-seeking Behavior and Information Needs in Patients With Amyotrophic Lateral Sclerosis
Juyeon Oh, Jung A Kim
CIN: Computers, Informatics, Nursing.2017; 35(7): 345. CrossRef - Supportive care needs of patients with amyotrophic lateral sclerosis/motor neuron disease and their caregivers: A scoping review
Juyeon Oh, Jung A Kim
Journal of Clinical Nursing.2017; 26(23-24): 4129. CrossRef - Convergence Study on Burden in Families Caregivers of Patients with Burn
Gye-Hyun Jung, Hyun-Ju Na
Journal of the Korea Convergence Society.2016; 7(6): 275. CrossRef
- Effectiveness of the Mindfulness-Based Interventions for Caregivers of Patients with Amyotrophic Lateral Sclerosis: A Scoping Review
- 267 View
- 6 Download
- 19 Crossref
- Correlation between Severe ALS Patient-Caregiver Couples' Characteristics and Caregivers' Health Related Quality of Life
- Myoung Soo Kim, Hyung-Ik Shin, Yusun Min, Jung Yoon Kim, Jung Soon Kim
- J Korean Acad Nurs 2011;41(3):354-363. Published online June 13, 2011
- DOI: https://doi.org/10.4040/jkan.2011.41.3.354
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Abstract
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Purpose The purpose of this cross-sectional study was to examine the relationship between characteristics of severe ALS patient-caregiver couples and health related quality of life (HRQoL) in family caregivers.
Methods The participants in this study were 89 pairs of ALS patients using ventilators and a family caregiver. The characteristics of the ALS patients and caregivers, Korean-Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised, Zarit Burden Interview and SF-36 were measured in this study. The data were collected from August 2008 to April 2009. Descriptive statistics, Pearson correlation coefficients, and canonical correlation were used for data analysis.
Results The physical component summary and mental component summary of the HRQoL score for family caregivers were 147.49±31.63 and 129.09±35.83, respectively. HRQoL for caregivers was related to characteristics of the ALS patient-caregiver couples, such as patient's gender, caregiver's age, gender, marital status, daily time spent in caregiving and burden with one significant canonical variable. The significant variate showed that the lower the age, the time spent in caregiving and the burden of caregivers, the higher the HRQoL of caregivers.
Conclusion The support systems for caregivers considering caregiver characteristics such as demographics and burden should be implemented to improve the HRQoL of caregivers.
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Citations
Citations to this article as recorded by- Health-Related Quality of Life in Spinal Muscular Atrophy Patients and Their Caregivers—A Prospective, Cross-Sectional, Multi-Center Analysis
Camilla Wohnrade, Ann-Kathrin Velling, Lucas Mix, Claudia D. Wurster, Isabell Cordts, Benjamin Stolte, Daniel Zeller, Zeljko Uzelac, Sophia Platen, Tim Hagenacker, Marcus Deschauer, Paul Lingor, Albert C. Ludolph, Dorothée Lulé, Susanne Petri, Alma Osmano
Brain Sciences.2023; 13(1): 110. CrossRef - Analysing the influencing factors on caregivers’ burden among amyotrophic lateral sclerosis patients in China: a cross-sectional study based on data mining
Ling Lian, Minying Zheng, Ruojie He, Jianing Lin, Weineng Chen, Zhong Pei, Xiaoli Yao
BMJ Open.2022; 12(9): e066402. CrossRef - Intensity of care and perceived burden among informal caregivers to persons with chronic medical conditions: a systematic review and meta-analysis
Andrea Carboni-Jiménez, Danielle B. Rice, Brooke Levis, Mara Cañedo-Ayala, Mahrukh Imran, Matthew Chiovitti, Andrea Benedetti, Brett D. Thombs
Disability and Rehabilitation.2022; 44(21): 6230. CrossRef - Information Needs and Preferences of Family Caregivers of Patients With Amyotrophic Lateral Sclerosis
Hyeon Sik Chu, Juyeon Oh
Journal of Neuroscience Nursing.2020; 52(5): 207. CrossRef - Association of physical and psychological health status between chronic obstructive pulmonary disease patients and their family caregivers
Hyun-Hye Chu, Kyeong-Soo Lee, Kwan Ho Lee, Jin Hong Chung, Kyeong-Cheol Shin, Tae-Yoon Hwang
Health Care for Women International.2019; 40(10): 1019. CrossRef - Factors Influencing Psychosocial Well-Being in Family Caregivers of People with Amyotrophic Lateral Sclerosis
Hyeon Sik Chu, Young Ran Tak, Seung Hyun Kim
Journal of Korean Academy of Nursing.2018; 48(4): 454. CrossRef - Information-seeking Behavior and Information Needs in Patients With Amyotrophic Lateral Sclerosis
Juyeon Oh, Jung A Kim
CIN: Computers, Informatics, Nursing.2017; 35(7): 345. CrossRef - Patients’ self‐perceived burden, caregivers’ burden and quality of life for amyotrophic lateral sclerosis patients: a cross‐sectional study
Dan Geng, RuWei Ou, XiaoHui Miao, LiHong Zhao, QianQian Wei, XuePing Chen, Yan Liang, HuiFang Shang, Rong Yang
Journal of Clinical Nursing.2017; 26(19-20): 3188. CrossRef - Socioeconomic costs of amyotrophic lateral sclerosis according to staging system
Juyeon Oh, Ji Won An, Seong-Il Oh, Ki Wook Oh, Jung A Kim, Jeong Seop Lee, Seung Hyun Kim
Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration.2015; 16(3-4): 202. CrossRef - Depression and Caregiving Burden in Families of Patients with Amyotrophic Lateral Sclerosis
Juyeon Oh, Ji Won An, Ki-Wook Oh, Seong-Il Oh, Jung A Kim, Seung Hyun Kim, Jeong Seop Lee
Journal of Korean Academy of Nursing.2015; 45(2): 202. CrossRef - 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
Korean Journal of Adult Nursing.2014; 26(2): 191. CrossRef
- Health-Related Quality of Life in Spinal Muscular Atrophy Patients and Their Caregivers—A Prospective, Cross-Sectional, Multi-Center Analysis
- 198 View
- 2 Download
- 11 Crossref
- The Lived Experience of Struggling against Illness for Patients with Amyotrophic Lateral Sclerosis
- Sung Ye Kang
- J Korean Acad Nurs 2008;38(6):802-812. Published online December 31, 2008
- DOI: https://doi.org/10.4040/jkan.2008.38.6.802
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Abstract
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Purpose The purpose of this study was to identify and describe phenomenological structures of the lived experience of struggling against an illness for patients with Amyotrophic Lateral Sclerosis (ALS).
Methods The participants were 7 patients with ALS recruited by snowball sampling who agreed to participate in this research and could verbally communicated with the researcher. Data were collected by long term-repeated interviews with participants in their own homes. Data were analyzed using Colaizzi's method of phenomenology.
Results Four categories were extracted as follows: 'Being seized with fear of death', 'Living a marginal life', 'Accepting hard fate', and 'Clinging to faint life'. Seven theme clusters were identified as: 'Wandering to find a healing method with ominous signs in the body', 'Having a diagnosis of ALS is like a bolt from the blue and struggling against illness with faint hope', 'Being forced out to the edge of life with anguish', 'Filling one's heart with hatred and longing toward becoming estranged from the world', 'Living with stigma as a stumbling block with bitter grief in one's heart', 'Accepting every things as one's fate with self controlled fear of death', and 'Attaching to desire to live'.
Conclusion The results of this study can be used to develop the programs to support patients with ALS and their family.
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Citations
Citations to this article as recorded by- The Stigma Scale for Chronic Illnesses 8-Item Version (SSCI-8): Development, Validation and Use Across Neurological Conditions
Yamile Molina, Seung W. Choi, David Cella, Deepa Rao
International Journal of Behavioral Medicine.2013; 20(3): 450. CrossRef - Joys and Sorrows in Mothers of Children with Mucopolysaccharidosis
Hye-Sook Park, Kwuy-Bun Kim
Journal of Korean Academy of Child Health Nursing.2011; 17(1): 58. CrossRef
- The Stigma Scale for Chronic Illnesses 8-Item Version (SSCI-8): Development, Validation and Use Across Neurological Conditions
- 172 View
- 7 Download
- 2 Crossref
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