The illness experience for people with amyotrophic lateral sclerosis: A qualitative study

Yuan, Mengmei; Peng, Xi; Zeng, Tieying; Wu, Meiliyang; Chen, Ye; Zhang, Ke; Wang, Xuejun

doi:10.1111/jocn.15697

Cited by 8 publications

(14 citation statements)

References 36 publications

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“… 18 Data were analysed using the seven steps of Colaizzi’s Method publication details method to improve the reliability of the results. 19 The writing of the full text was guided by the Standards for Reporting Qualitative Research to ensure completeness and accuracy.…”

Section: Methodsmentioning

confidence: 99%

Adverse experiences of social adaptation in children with leukaemia: a qualitative study from China

Tang

Liu

et al. 2022

BMJ Open

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Aim and objectiveThis study aimed to build an indepth and comprehensive understanding of the social maladaptation experience of Chinese children with leukaemia of different ages.MethodsThe purposive sampling method was adopted to conduct semistructured interviews with 20 Chinese children with leukaemia or their main caregivers and Colaizzi’s method for qualitative research was used to organise and analyse the data. The study followed the guiding principles of the Standards for Reporting Qualitative Research.ResultsThe existing social adaptation problems of children with leukaemia of different ages were assessed. In terms of psychological maladjustment, children with leukaemia aged 2–7 years showed fear and excessive attachment, while children aged 8–18 years were characterised by impatience, irritability and anxiety. In terms of behavioural maladjustment, children aged 2–7 years presented less independent behaviour and dependence on electronics, while children aged 8–18 years showed learning obstruction and indulgence in mobile games.ConclusionsTargeted intervention strategies should be developed based on the physical and mental characteristics of children with leukaemia of different ages to improve existing social adaptation problems.Relevance to clinical practiceEarly intervention for social adaptation of children with leukaemia should be considered. Children’s social adaptation should be improved to prevent more adaptation problems so that they can return to their families and to the society without difficulty and improve their quality of life in the long term.

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Section: Methodsmentioning

confidence: 99%

Adverse experiences of social adaptation in children with leukaemia: a qualitative study from China

Tang

Liu

et al. 2022

BMJ Open

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“…Table 1 presents the summary information of the final studies analyzed, including authors, year, country, study aim, type of study, and population and characteristics. Most of the identified studies were qualitative (n = 14) (Akiyama et al 2006;Cipolletta and Amicucci 2015;Dos Santos Costa et al 2021;Fanos et al 2008;Foley et al 2007;Hamama-Raz et al 2021;Locock et al 2009;Madsen et al 2018;O'Brien and Preston 2015;Ozanne et al 2013Ozanne et al , 2015Rosengren et al 2015;Warrier et al 2020;Yuan et al 2021) and used semi-structured interviews for data collection except 2 studies: one used biographies selected through a search by keyword (Rosengren et al 2015) and the other used internet and print-published narratives written by people with ALS/MND (O'Brien and Preston 2015). Three were identified as quantitative (Bentley et al 2014;Fegg et al 2010;Murphy et al 2009): 1 was a cross-sectional study that utilized a single treatment group (Bentley et al 2014) and the other 2 were cross-sectional studies with the application of scales (Fegg et al 2010;Murphy et al 2009).…”

Section: Characterization Of the Studiesmentioning

confidence: 99%

“…Other perspectives included gratitude for past experiences, appreciation of residual time and function, living in the present, appreciation of the natural world, and the importance of getting things done (Foley et al 2007;Ozanne et al 2013). Others hoped that the disease would stop or at least not become much worse and survive over a particular time (Hamama-Raz et al 2021;Ozanne et al 2013;Yuan et al 2021). Many kept their mind occupied by focusing on daily activities or hobbies like continuing to work while still able to do.…”

Section: Patientsmentioning

confidence: 99%

“…Many kept their mind occupied by focusing on daily activities or hobbies like continuing to work while still able to do. However, some chose to stop work to concentrate on other more valued aspects of their lives, make holiday trips as a distraction, as an assertion that life was not yet over and was there to be enjoyed, writing to reflect on their lives, and meditation to help in their search for giving meaning to their situation (Fanos et al 2008;Locock et al 2009;Yuan et al 2021).…”

Section: Patientsmentioning

confidence: 99%

“…A sense of community that supported the internal relationships between PALS and their relatives occurred, building up a sense of fighting ALS together (Madsen et al 2018;Yuan et al 2021). This sense of community was reported as meaningful in different studies, where the process of sharing the experience of living with ALS among patients and caregivers was very important and selfdescribed by patients as "openness, understanding, joy of life, and humor. "…”

Section: Patientsmentioning

confidence: 99%

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The role of spirituality in people with amyotrophic lateral sclerosis and their caregivers: Scoping review

2022

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Background There are few studies evaluating the role of spirituality and the role of spiritually integrated interventions in people with amyotrophic lateral sclerosis (PALS) and their caregivers. Objectives A scoping review was conducted to examine the nature and breadth of peer-reviewed literature on the role of spirituality, interventions integrating spirituality, and outcomes for PALS and their caregivers. Methods A literature review was performed, following the methods from the Joanna Briggs Institute Reviewers, based on all articles published between January 2006 and April 2022, identified in the CINAHL Complete, MEDLINE Complete, MedicLatina, Psychology and Behavioral Sciences Collection, and SPORTDiscus with full-text databases using key terms. Extracted data included research aims, study design, population and characteristics, theme description, and measures or type of intervention. Results A total of 18 articles were included in this study: 14 qualitative, 3 quantitative, and 1 protocol of a quantitative study. Eight studies were based in Europe. The search identified different main themes related to spirituality for caregivers and patients, 2 spiritual measure scales, and one intervention. However, many studies were limited in sample size, generalizability, and transferability and used less sophisticated research designs. Significance of the results This scoping review illustrates the importance given to spirituality by caregivers and PALS and reveals a very heterogeneous response. Thus, experimental studies in the area of spirituality are needed to systematically explore the impact of spiritual interventions, and the results of these studies could advance practice and policy by enhancing the quality of life for PALS and their caregivers.

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The experiences of patients with amyotrophic lateral sclerosis of their decision‐making processes to invasive home mechanical ventilation—A qualitative study

et al. 2023

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Amyotrophic lateral sclerosis (ALS) is a disease being rapidly progressive affecting patients' whole-body function and has an impact on them psychologically. Therefore, patients at an early disease stage have to be well informed about their future treatment opportunities: home mechanical ventilation (HMV) which is either non-invasive or invasive or palliative care. It is important that they are able to make an informed decision before it becomes too late and they end up with invasive home mechanical ventilation (IHMV) without wanting it. Therefore, it is important to uncover aspects that may ease the patients' decision-making process.

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The illness experience for people with amyotrophic lateral sclerosis: A qualitative study

Abstract: This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.

Cited by 8 publications

References 36 publications

Adverse experiences of social adaptation in children with leukaemia: a qualitative study from China

Adverse experiences of social adaptation in children with leukaemia: a qualitative study from China

The role of spirituality in people with amyotrophic lateral sclerosis and their caregivers: Scoping review

The experiences of patients with amyotrophic lateral sclerosis of their decision‐making processes to invasive home mechanical ventilation—A qualitative study

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