Skip to content

Living with illness and self-transcendence: the lived experience of patients with spinal muscular atrophy.

Hsin-Mei Ho, Ying-Hua Tseng, Yu-Mei Hsin, Fan-Hao Chou, Wei-Ting Lin

Journal of Advanced Nursing November 2016 DOI: 10.1111/jan.13042 (opens in new tab)

Read Full Text
Relevant Not relevant

Study at a glance

AI-extracted from the abstract
Characteristics Qualitative study Peer reviewed
Sample size 9
Population Patients with spinal muscular atrophy recruited from Taiwan spinal muscular atrophy Families
Duration Interviews conducted between November 2010 and August 2011
Topics Philosophy of mind
Keywords Chronic illness Disability Family Lived experience Nursing Qualitative approaches Self-control Self-transcendence Spinal muscular atrophy
Key findings The lived experience of spinal muscular atrophy involved living with illness, transcending the self, and pursuing meaning in life. Participants described adjusting their lifestyles and actively coping with hardships to maintain dignity and self-control. The authors propose these findings can inform healthcare professionals' support of patients and families.

Abstract

The aim of this study was to explore the lived experiences of patients afflicted with spinal muscular atrophy. Existing research studies on spinal muscular atrophy address the physical and psychological effects and complications of the disease; they also provide suggestions for how to improve the current management of this disease. However, information is limited on the disease process and the lived experience of spinal muscular atrophy patients. A phenomenological approach was conducted. Through 18 in-depth interviews recorded by a pen voice recorder, this study collected data obtained from a purposive sample of nine patients from the, 'Taiwan spinal muscular atrophy Families,' between November 2010-August 2011. The audio recordings were transcribed verbatim and data were analysed using Colaizzi's steps. Four themes and eight subthemes were identified: a loss of control (loss of muscular strength and independence), breaking limitations (assistive device use and mobility design), transcending limitations (independence/autonomy and social development) and living with hope (cherishing life and self-control). The results showed that the lived experiences of the spinal muscular atrophy patients involved living with illness, transcending the self and pursuing the meaning of life. Facing a life-threatening illness, these patients made self-adjustments in their lifestyles and exerted themselves to positively cope with hardships and maintain dignity and self-control. These findings could serve as evidence-based practice resources for healthcare professionals in helping individuals and their family members gain an in-depth understanding of spinal muscular atrophy's progression and life course and assist individuals in improving self-integrity to with hope.

Comparable studies

Other qualitative studies on philosophy of mind, most cited first.

Study Year Design Participants
Qualitative thematic analysis of the phenomenology of near-death experiences Cardiac arrest survivors 2018 Qualitative study n = 34
Phenomenology and Sequelae of 3,4-Methylenedioxymethamphetamine Use Psychiatrists who had taken MDMA 1992 Qualitative study n = 20
A phenomenology of meditation-induced light experiences: traditional buddhist and neurobiological perspectives American Buddhist practitioners 2014 Qualitative study
Evoking the ineffable: The phenomenology of extreme sports. Extreme sports participants across three continents, including BASE jumping, big wave... 2017 Qualitative study n = 15
Phenomenology and content of the inhaled N, N-dimethyltryptamine (N, N-DMT) experience. Naturalistic inhaled N,N-DMT experiences posted to the r/DMT Reddit community 2022 Qualitative analysis n = 3,778

Citations in the library

Cited by 6

and 1 more in the library

Cites 2

Related reading

Explore topics

Philosophy of mind