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.

‘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.

scholarly journals Spiritual needs experienced by the patient's family caregiver under Oncology palliative care

2018 ◽  
Vol 71 (suppl 6) ◽  
pp. 2635-2642 ◽  
Author(s):  
Renata Carla Nencetti Pereira Rocha ◽  
Eliane Ramos Pereira ◽  
Rose Mary Costa Rosa Andrade Silva ◽  
Angelica Yolanda Bueno Bejarano Vale de Medeiros ◽  
Sueli Maria Refrande ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Family Caregivers ◽  
Coping Strategy ◽  
Family Caregiver ◽  
Spiritual Needs ◽  
Phenomenology Of Perception ◽  
The Family ◽  
The Moment ◽  
Phenomenological Interview

ABSTRACT Objective: To understand the spiritual needs of the patients' family caregiver under Oncology palliative care. Method: A descriptive, qualitative study with 20 family caregivers of patients hospitalized in an Oncology palliative unit. The data were collected through a phenomenological interview, and analyzed by the method of Amadeo Giorgi supported in the Merleau-Ponty's Phenomenology of Perception. Results: The categories were unveiled: "Spirituality as a foundation for life"; "Spiritual needs sublimated by the family caregiver"; and "Care expected by the nurse". Conclusion: Family caregivers appropriate spirituality as a coping strategy and meeting the purpose and meaning of the moment experienced. It is profitable for the nurse to contemplate the spiritual needs of the caregiver in order to provide a guided assistance in the humanization of care and comprehensive care. Therefore, there is a need for new studies that address this dimension to the family caregiver in the field of Oncology, since this care is incipient by the nurse.

scholarly journals Family caregiver emotional distress in advanced cancer: the DME-C scale psychometric properties

2020 ◽  
pp. bmjspcare-2020-002608
Author(s):  
Joaquín T Limonero ◽  
Jorge Maté-Méndez ◽  
María José Gómez-Romero ◽  
Dolors Mateo-Ortega ◽  
Jesús González-Barboteo ◽  
...  
Keyword(s):  
Psychometric Properties ◽  
End Of Life ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Emotional Distress ◽  
Family Caregiver ◽  
Screening Tools ◽  
Anxiety And Depression ◽  
The Family ◽  
End Stage

BackgroundFamily caregivers of patients with advanced illness at end of life often report high levels of emotional distress. To address this emotional distress is necessary to have adequate and reliable screening tools.AimThis study analyses the psychometric properties and clinical utility of the Family Caregiver Emotional Detection Scale for caregivers of patients with end-stage cancer (DME-C, Spanish acronym) who are receiving palliative care (PC).DesignMulticentre, cross-sectional study.Settings/participantsFamily caregivers of patients with advanced cancer at end of life receiving palliative treatment were interviewed to explore their emotional distress through the DME-C scale and other instruments measuring anxiety and depression (Hospital Anxiety and Depression Scale (HADS)), distress thermometer (DT) and overload (B), as well as a clinical psychological assessment (CPA).Results138 family caregivers, 85 (61.6%) female and 53 (38.4%) male, with an average age of 59.69±13.3 participated in the study. The reliability of the scale, as measured by Cronbach’s alpha, was 0.76, and its stability over time was 0.734. Positive, significant correlations were found between the DME-C and the scores for anxiety and depression registered on the HADS scale, as well as with the total result of this latter scale and the results for B, the DT and the CPA. A statistical analysis of the receiver-operating characteristic curves showed that the scale has a sensitivity and specificity of 75%, and that the cut-off point for the detection of emotional distress was a score ≥11. Fifty-four per cent of the caregivers displayed emotional distress according to this scale.ConclusionsThe DME-C displays good psychometric properties. It is simple, short, reliable and easy to administer. We believe that the instrument is useful for the detection of emotional distress in the family caregivers of hospitalised patients suffering from end-stage illnesses and receiving PC.

scholarly journals Critical Review of Complementary and Alternative Medicine Use in Amyotrophic Lateral Sclerosis: Prevalence and Users’ Profile, Decision-Making, Information Seeking, and Disclosure in the Face of a Lack of Efficacy

2018 ◽  
Vol 18 (4) ◽  
pp. 225-232 ◽  
Author(s):  
Jon Adams ◽  
Michael Lee ◽  
Wenbo Peng
Keyword(s):  
Decision Making ◽  
Amyotrophic Lateral Sclerosis ◽  
Alternative Medicine ◽  
Complementary And Alternative Medicine ◽  
Information Seeking ◽  
Disease Process ◽  
Cam Use ◽  
Als Patients ◽  
Lateral Sclerosis ◽  
Complementary And Alternative

Background: Despite a lack of evidence of clinical efficacy for complementary and alternative medicine (CAM) use in amyotrophic lateral sclerosis (ALS), these medicines remain popular around the world. Objective: To examine the prevalence and cost of CAM use in ALS and CAM users’ profile, decision-making, information seeking, and disclosure among ALS patients. Methods: A comprehensive literature search was conducted of MEDLINE, CINAHL/SCOPUS, and AMED databases from their inception to April 2018. This review followed PRISMA guidelines and employed a quality scoring system to assess the included papers. Results: Seven papers met the inclusion criteria and were thematically analysed. ALS patients utilized a range of CAM therapies and/or products, with acupuncture and vitamins being the most frequently reported. CAM modalities were often employed concurrently with conventional medications throughout the disease process. Although some ALS patients reported positive experience regarding CAM use, many were reluctant to disclose their CAM use to their clinicians. Research focusing on CAM use in ALS remains ad hoc and restricted to only a few countries. The rigour and quality of this research field to date has been varied, predominantly drawing upon regional/localized data and failing to report CAM users’ characteristics. Conclusion: A proportion of ALS patients report utilizing CAM concurrently with conventional treatments. Such use, set amidst a dearth of evidence for the efficacy of CAM in ALS, poses potential direct and indirect risks to patient care, and medical providers should be mindful of and enquire about CAM use when treating ALS patients.

Care without sufficient knowledge of people with home enteral tube feeding: a qualitative study

2021 ◽  
Vol 19 (10) ◽  
pp. 26-34
Author(s):  
Mehri Doosti-Irani ◽  
Farangis Heidari Goojani ◽  
Leila Rafiee Vardanjani ◽  
Kobra Noorian
Keyword(s):  
Qualitative Study ◽  
Family Caregivers ◽  
Health Professionals ◽  
Tube Feeding ◽  
Interview Data ◽  
Negative Consequences ◽  
Correct Position ◽  
Face To Face ◽  
Enteral Tube Feeding ◽  
The Family

Aim: This study aimed to explore family caregivers' experiences with tube feeding at home in Iran. Methods: This qualitative study was conducted with purposefully selected family caregivers who participated in an in-depth, semi-structured, face-to-face interview. Data analysis was performed through content analysis and rigor was investigated. Results: In total, 20 caregivers were interviewed. Two main categories were found in the interview data: ‘abandoned training’ and ‘lack of knowledge of nutrition’. Participants felt abandoned and unsupported by health professionals. Participants also reported feeling that health professionals passed the training responsibility to other health professionals who did not give training. This resulted in participants feeling obligated to learn from their peers. Participants lacked knowledge about nutrition, as well as how to prepare home-made formula for feeding, the correct position for feeding and feeding times. Conclusion: Despite having a heavy and vital responsibility, participants felt that they had not been adequately trained and thus faced making errors, resulting in negative consequences for the patient and the family. Therefore, appropriate plans must be made to promote preparation for home care.

Respite Tourism for Family Caregivers

2015 ◽  
pp. 218-231
Author(s):  
Robert Holda
Keyword(s):  
Family Member ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Medical Tourism ◽  
Target Market ◽  
Loved One ◽  
Specific Target ◽  
Personal Time ◽  
The Family ◽  
Effects Of Stress

One of the most misunderstood and unappreciated segments of society in relation to medical tourism is the family caregiver; those caring for a loved one who sacrifice their own employment schedule, their personal time for relaxing and recreation, and often and importantly their own health. The purpose of this chapter is to raise awareness of the plight of family caregivers as an issue for medical tourism, the effects of stress and burnout, and the essential need for respite of body, mind, and spirit for these central assistants in the matter of healthcare for patients. Though healthcare and its subset, medical tourism, are frequently perceived as focused on a “patient”, they also encompass many other individuals and organizations. As addressed here, the focus is on the family member caring for a loved one. The intent is to link the concept of medical tourism as an avenue for relaxation and respite to enhance the wellness of this specific target market.

scholarly journals The neural network basis of altered decision‐making in patients with amyotrophic lateral sclerosis

2020 ◽  
Vol 7 (11) ◽  
pp. 2115-2126
Author(s):  
Kazunori Imai ◽  
Michihito Masuda ◽  
Hirohisa Watanabe ◽  
Aya Ogura ◽  
Reiko Ohdake ◽  
...  
Keyword(s):  
Neural Network ◽  
Decision Making ◽  
Amyotrophic Lateral Sclerosis ◽  
The Neural Network ◽  
Lateral Sclerosis
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