Factor analysis of the Zarit Burden Interview in family caregivers of patients with amyotrophic lateral sclerosis

2017 ◽  
Vol 19 (1-2) ◽  
pp. 50-56 ◽  
Author(s):  
Juyeon Oh ◽  
Jung A. Kim
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Factor Analysis ◽  
Family Caregivers ◽  
Zarit Burden Interview ◽  
Lateral Sclerosis

Psychometric properties of the Korean version of the positive aspects of caregiving scale for family caregivers of people with amyotrophic lateral sclerosis

2020 ◽  
Vol 18 (6) ◽  
pp. 699-706
Author(s):  
Hyeon Sik Chu ◽  
Young Ran Tak
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Factor Analysis ◽  
Family Caregivers ◽  
Convergent Validity ◽  
Reliability And Validity ◽  
Secondary Data ◽  
Primary Study ◽  
Korean Version ◽  
Positive Aspects Of Caregiving ◽  
Lateral Sclerosis

AbstractObjectiveMany caregivers report finding positive meanings in their caregiving roles and activities. The positive aspects of caregiving (PAC) scale was designed to measure positive appraisals of caregiving. This study assessed the reliability and validity of the Korean version of the PAC for family caregivers of people with amyotrophic lateral sclerosis (ALS).MethodThe instrument's content and semantic equivalence were established using translation and back translation of the PAC. A convenience sample of 127 family caregivers of patients with ALS in Korea was recruited. Content, construct, and convergent validity of the Korean PAC were evaluated. Cronbach's α was used to assess reliability. This study used secondary data; the primary study received approval from the Institutional Review Board of H Hospital, from where data were collected. The consent forms did not mention the future use of data. Therefore, we have applied for approval regarding this study's protocol and exemption from informed consent.ResultsThe Cronbach's α was 0.92, and internal consistency was acceptable. Exploratory factor analysis supported the construct validity with a two-factor solution explaining 74.73% of the total variance. Regarding convergent validity, the Korean PAC score negatively correlated with caregiver burden and depression and positively with self-rated health status. We were unable to evaluate the suitability of the suggested structural dimensionality through confirmatory factor analysis. Furthermore, as we used secondary data, we could not assess retest reliability for the evaluation of the scale's stability.Significance of resultsThe Korean PAC was found to be an applicable instrument with satisfactory reliability and validity and suitable for further use as a measure for positive appraisals of caregiving for family caregivers of people with ALS. It may be effective for measuring caregivers’ psychological resources.

Psychometric Evaluation of the Turkish Version of the Zarit Burden Interview in Family Caregivers of Inpatients in Medical and Surgical Clinics

2012 ◽  
Vol 23 (1) ◽  
pp. 65-71 ◽  
Author(s):  
Nadiye Özer ◽  
Afife Yurttaş ◽  
Rahşan Çevik Akyıl
Keyword(s):  
Factor Analysis ◽  
Construct Validity ◽  
Family Caregivers ◽  
Content Validity ◽  
Psychometric Testing ◽  
Psychometric Evaluation ◽  
Validity And Reliability ◽  
Turkish Version ◽  
Zarit Burden Interview ◽  
Convenience Sampling

The aim of this study was to adapt the Zarit Burden Interview (ZBI) to family caregivers of inpatients in medical and surgical clinics to assess the validity and reliability of the Turkish version. The study design was descriptive and methodological. A total of 223 family caregivers providing care to patients for at least 1 week in clinics were selected through convenience sampling. Data were collected using the Turkish translation of the ZBI. The psychometric testing of the adapted instrument was carried out to establish internal consistency, interitem correlation, and construct validity. The content validity procedure resulted in a final scale comprising 18 items. Cronbach’s alpha was .82. Factor analysis yielded one factor. The Turkish version of the ZBI adapted to the clinics can be used as a one-factor tool.

‘This is your golden time. You enjoy it and you’ve plenty time for crying after’: How dysphagia impacts family caregivers of people with amyotrophic lateral sclerosis – A qualitative study

2020 ◽  
Vol 34 (8) ◽  
pp. 1097-1107
Author(s):  
Dominika Lisiecka ◽  
Helen Kelly ◽  
Jeanne Jackson
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Qualitative Study ◽  
Family Caregivers ◽  
Interpretative Phenomenological Analysis ◽  
Phenomenological Analysis ◽  
Unique Contribution ◽  
Individual Interviews ◽  
South West ◽  
The Impact ◽  
Lateral Sclerosis

Background: Dysphagia (swallowing impairments) is a well-recognised symptom of amyotrophic lateral sclerosis. Caring for a person with amyotrophic lateral sclerosis has been recognised as a complex and demanding task. No study to date investigated the impact of dysphagia on the lives of caregivers of people with amyotrophic lateral sclerosis. Aim: To investigate the experiences of dysphagia from the perspective of family caregivers of people diagnosed with amyotrophic lateral sclerosis. Design: Interpretative phenomenological analysis was employed. Individual interviews (n = 15) plus observations of mealtime preparation were conducted, where possible (seven or n). Setting/participants: Participants comprised family caregivers of people with amyotrophic lateral sclerosis and dysphagia living in the South West of Ireland ( n = 10). Findings: Dysphagia transformed the mealtime experiences of the caregivers and changed their approaches to food. Frustration related to the inability to stabilise the weight of the person with amyotrophic lateral sclerosis and the fear of choking emerged strongly. The caregivers strived to ensure the safety of people with amyotrophic lateral sclerosis during meals by providing constant supervision. Despite the challenges precipitated by dysphagia and amyotrophic lateral sclerosis, the caregivers wished to maintain normality for as long as they perceived it to be possible. Conclusion: This study provides a unique contribution in advancing our understanding of the impact of dysphagia on the caregivers of people with amyotrophic lateral sclerosis. Professionals must explore and recognise the needs of the caregivers and provide them with appropriate support, especially how to manage choking.

End-of-life care after the legal introduction of advance directives: A qualitative study involving healthcare professionals and family caregivers of patients with amyotrophic lateral sclerosis

2020 ◽  
pp. 026921632096728
Author(s):  
Sabrina Cipolletta ◽  
Margherita Reggiani
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
End Of Life ◽  
Family Caregivers ◽  
Advance Directives ◽  
Health Professionals ◽  
End Of Life Care ◽  
Healthcare Services ◽  
Life Care ◽  
Advance Care ◽  
Lateral Sclerosis

Background: Advance care planning and advance directives play a key role in the care of life-threatening illnesses such as amyotrophic lateral sclerosis. Aim: The aim of the present study is to explore how the introduction of these features by law improves the experience of end-of-life care. Design: Five focus groups were conducted in Italy 1 year after the new law on advance directives was introduced. Setting/Participants: Purposive sampling was used to recruit 24 health professionals and 23 family caregivers of patients with amyotrophic lateral sclerosis, for a total of 47 participants. Results: The thematic analysis, conducted through the use of ATLAS.ti software, identified four thematic areas: best practices, managing difficulties, care relationships and proposals. The results indicated a lack of organization, collaboration and continuity on the part of healthcare services and professionals, a lack of information on palliative care, advance care planning, and advance directives. End-of-life care is often left to the good will of the individual professional. Difficulties can also derive from ethical dilemmas concerning end-of-life decision-making and from a lack of communication and relationships between health professionals, patients and their families. Conclusion: The introduction of advance directives by law has not been sufficient to improve end-of-life care. In order to make legal regulation effective, the organization of healthcare services needs to be improved and clearer procedures have to be implemented and shared with patients and families.

scholarly journals Existential transformations in the process of facing amyotrophic lateral sclerosis by the family caregiver

2021 ◽  
Vol 42 ◽  
Author(s):  
Lays Pedrosa dos Santos Costa ◽  
Isabel Comassetto ◽  
Regina Maria dos Santos ◽  
Amuzza Aylla Pereira dos Santos ◽  
Guilherme Oliveira de Albuquerque Malta ◽  
...  
Keyword(s):  
Decision Making ◽  
Amyotrophic Lateral Sclerosis ◽  
Qualitative Study ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Transformation Process ◽  
Existential Phenomenology ◽  
The Family ◽  
Philosophical Framework ◽  
Lateral Sclerosis

ABSTRACT Objective To understand the existential transformations of the family caregiver of a person living with Amyotrophic Lateral Sclerosis. Method Qualitative study based on assumptions of Martin Heidegger Existential Phenomenology, with 12 family caregivers of the person with Amyotrophic Lateral Sclerosis, in Alagoas. The testimonies were obtained from June 2019 to March 2020 and analyzed, categorized, and discussed based on the theoretical-philosophical framework adopted and thematic literature. Results Phenomenological sense of the existential transformations of the family caregiver of a person living with Amyotrophic Lateral Sclerosis, unveiled with the categories: Being the caregiver of the person living with ALS; Being responsible for decision making; Resignifying the existence in view of the possibility of loss; Spirituality influencing the transformation process. Conclusions The family caregiver has an appropriate life due to the inherent vicissitudes of the disease, which provides moving moments that lead him to rethink his existence and to value life.

scholarly journals Engaging Specialist Palliative Care in the Management of Amyotrophic Lateral Sclerosis: A Patient-, Family-, and Provider-Based Approach

2020 ◽  
pp. 082585971989582
Author(s):  
Karla T. Washington ◽  
Klaudia Kukulka ◽  
Raghav Govindarjan ◽  
David R. Mehr
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Amyotrophic Lateral Sclerosis ◽  
Family Caregivers ◽  
Health Care Providers ◽  
Care Providers ◽  
Specialist Palliative Care ◽  
Early Integration ◽  
Key Stakeholders ◽  
Lateral Sclerosis

Purpose: To describe key stakeholders’ perspectives on specialist palliative care and its integration into the management of amyotrophic lateral sclerosis (ALS). Methods: The study conducted was a qualitative, noninterventional, descriptive study. Data were collected via individual interviews of 42 stakeholders (n = 14 patients, n = 16 family caregivers, and n = 12 health-care providers). Transcribed interviews were analyzed using inductive thematic analysis techniques. Results: Stakeholders’ general impressions of specialist palliative care were highly variable. Many expressed limited or inaccurate understandings of palliative care’s definition and purpose. Perceptions of palliative care as hospice were common. Stakeholders generally supported the integration of specialist palliative care into ALS management, and many recognized the value of early integration of palliative services in both the community and the clinical setting. Conclusion: Key stakeholders readily identified a meaningful role for specialist palliative care in ALS management. Integration of specialist palliative care into existing systems of support would be facilitated by a more comprehensive understanding of the service among patients, family caregivers, and health-care providers.

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