The experiences of support persons of people newly diagnosed with Multiple Sclerosis

An interpretative phenomenological study

Karen STRICKLAND, Allison Worth, Catriona Kennedy

Research output: Contribution to journalArticle

7 Citations (Scopus)

Abstract

Aim: This study explores the experience of the diagnosis of Multiple Sclerosis for
the support person and identifies the impact on their lives. Background: At the time of diagnosis, the support person may not be readily identified in a traditional caring role; however, the diagnosis itself brings with it the possibility of changes to the roles in the relationship and possible consequences for biographical construction. Design: A hermeneutic phenomenological study.
Methods: A convenience sample of nine support persons was interviewed
between December 2008 - March 2010. The data were analysed using
interpretative phenomenological analysis. Findings: The participants in this study were often not readily identifiable as ‘carers’; however, the diagnosis of Multiple Sclerosis implied a shift towards a caring role at some point in the future. The uncertainty surrounding the nature and progression of the condition left this identity hanging, incomplete and as such contributed to a liminal way of being.
Conclusions: This paper reveals that biographical disruption is not limited to the
person diagnosed with Multiple Sclerosis but that the support person also
undergoes a transition to their sense of self to that of ‘anticipatory carer’. The
findings provide insight into the biographical and emotional impact of Multiple
Sclerosis on the support persons early in the development of the condition.
Original languageEnglish
Pages (from-to)2811-2821
Number of pages11
JournalJournal of Advanced Nursing
Volume71
Issue number12
DOIs
Publication statusPublished - 2015
Externally publishedYes

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Multiple Sclerosis
Caregivers
Ego
Uncertainty

Cite this

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title = "The experiences of support persons of people newly diagnosed with Multiple Sclerosis: An interpretative phenomenological study",
abstract = "Aim: This study explores the experience of the diagnosis of Multiple Sclerosis forthe support person and identifies the impact on their lives. Background: At the time of diagnosis, the support person may not be readily identified in a traditional caring role; however, the diagnosis itself brings with it the possibility of changes to the roles in the relationship and possible consequences for biographical construction. Design: A hermeneutic phenomenological study.Methods: A convenience sample of nine support persons was interviewedbetween December 2008 - March 2010. The data were analysed usinginterpretative phenomenological analysis. Findings: The participants in this study were often not readily identifiable as ‘carers’; however, the diagnosis of Multiple Sclerosis implied a shift towards a caring role at some point in the future. The uncertainty surrounding the nature and progression of the condition left this identity hanging, incomplete and as such contributed to a liminal way of being.Conclusions: This paper reveals that biographical disruption is not limited to theperson diagnosed with Multiple Sclerosis but that the support person alsoundergoes a transition to their sense of self to that of ‘anticipatory carer’. Thefindings provide insight into the biographical and emotional impact of MultipleSclerosis on the support persons early in the development of the condition.",
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The experiences of support persons of people newly diagnosed with Multiple Sclerosis : An interpretative phenomenological study. / STRICKLAND, Karen; Worth, Allison; Kennedy, Catriona.

In: Journal of Advanced Nursing, Vol. 71, No. 12, 2015, p. 2811-2821.

Research output: Contribution to journalArticle

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T2 - An interpretative phenomenological study

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AU - Worth, Allison

AU - Kennedy, Catriona

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AB - Aim: This study explores the experience of the diagnosis of Multiple Sclerosis forthe support person and identifies the impact on their lives. Background: At the time of diagnosis, the support person may not be readily identified in a traditional caring role; however, the diagnosis itself brings with it the possibility of changes to the roles in the relationship and possible consequences for biographical construction. Design: A hermeneutic phenomenological study.Methods: A convenience sample of nine support persons was interviewedbetween December 2008 - March 2010. The data were analysed usinginterpretative phenomenological analysis. Findings: The participants in this study were often not readily identifiable as ‘carers’; however, the diagnosis of Multiple Sclerosis implied a shift towards a caring role at some point in the future. The uncertainty surrounding the nature and progression of the condition left this identity hanging, incomplete and as such contributed to a liminal way of being.Conclusions: This paper reveals that biographical disruption is not limited to theperson diagnosed with Multiple Sclerosis but that the support person alsoundergoes a transition to their sense of self to that of ‘anticipatory carer’. Thefindings provide insight into the biographical and emotional impact of MultipleSclerosis on the support persons early in the development of the condition.

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