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                            Philadelphia College of Osteopathic Medicine
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The Experience of Grief and Loss in Persons Affected by Long QT Syndrome
	David Haynes-Weller
		Recommended Citation
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Philadelphia College of Osteopathic Medicine
[email protected]

PCOM Psychology Dissertations Student Dissertations, Theses and Papers


The Experience of Grief and Loss in Persons
Affected by Long QT Syndrome
David Haynes-Weller
Philadelphia College of Osteopathic Medicine, [email protected]

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Part of the Clinical Psychology Commons, and the Health Psychology Commons

This Dissertation is brought to you for free and open access by the Student Dissertations, Theses and Papers at [email protected] It has been
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Recommended Citation
Haynes-Weller, David, "The Experience of Grief and Loss in Persons Affected by Long QT Syndrome" (2011). PCOM Psychology
Dissertations. Paper 187.
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Page 2


Philadelphia College of Osteopathic Medicine

Department of Psychology



By David Haynes-Weller

Submitted in Partial Fulfillment of the Requirements of the Degree of

Doctor of Psychology

April 2011

Page 62


Chapter 5


Living with the Loss

In this section, themes related to perceived losses encountered by individuals living with

or caring for children affected by LQTS will be reported. The two major themes expressed on the

message board relate to the loss of a “normal” life and the loss of physical activity. These

individuals were faced with the reality of dramatic changes in their families‟ lives due to the

initial diagnosis or to ongoing adjustments in their lifestyles precipitated by the disorder.

Although most of the individuals had adjusted to their own personal lifestyle changes, several

individuals expressed the desire that their child would be able to live a normal life again. One

parent placed limitations on her child‟s activities for the child‟s safety and she struggled with the

implications of this limitation and what these might mean for her child‟s ability to live a normal

life in the future. Other individuals grappled with the imposed limitations on their physical

activity as a result of LQTS.

Loss of a Normal Life

Jennie’s story. Jennie‟s school-aged son, Paul, was diagnosed with LQTS and the family

was starting to adjust the diagnosis.

The decision was made to allow Paul to continue in all of

Please note that certain characteristics of the user group participants and their family members were changed to

mask their identities. For example, all participants were de-identified at the outset of the study. All name of

individuals identified in the body of the messages were given pseudonyms. Some descriptions of geographical

locations were altered to protect identities. Finally, the gender of some children was changed.

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