Problems of adults with mitochondrial disease - the patient's perspective: focus on loss
Problems of adults with mitochondrial disease - the patient's perspective: focus on loss
Objective: This study aimed to identify problems as experienced by adults with a mitochondrial disease. We chose to describe these problems from the patients' perspective as we thought this would give optimal input for care improvement.
Design: A qualitative design using the grounded theory approach, involving single individual open interviews with 16 adults with a mitochondrial disease.
Results: This study revealed "loss" as the main concept, where one loss often preceded other losses. Respondents mentioned loss of energy as the most basic loss in having a mitochondrial disease, leading to multiple varied losses in all areas of daily life. Looking back, they mentioned psychosocial-spiritual problems and dealing with actual and expected future losses as most prominent and difficult. In our study, we determined seven comprehensive themes: "loss of energy", "loss of independence and autonomy", "loss of social participation", "loss of personal identity", "loss of dreams and future" as well as "lack of health care" and "coping and adjustment".
Conclusions: In this first study on this theme, we developed a theory about patient's losses related to mitochondrial disease. They experience a variety of problems in the physical, psychological, social and spiritual human domain. Patients experience a lack of health care and professional support as well. They use various strategies to manage their multiple losses and experience circumstances in which it is difficult to manage them effectively. The results can be used as a guide for improving health care, education and research and might result in an improved quality of life.
85-94
Noorda, Greet
aede71e3-4982-4ee6-8eab-29c5171e8a1f
Van Achterberg, Theo
eb49404e-62c6-427d-bb94-580254177a30
Van der Hooft, Truus
fa8ebd04-70d9-41fd-a181-c48dce733c5c
Smeitink, Jan
78cd1dd2-3e5c-4a47-88bd-a8b3fd1e146d
Schoonhoven, Lisette
46a2705b-c657-409b-b9da-329d5b1b02de
Van Engelen, Baziel
159e0f8d-2db5-4d79-a4ed-00e8e8a8a97a
2012
Noorda, Greet
aede71e3-4982-4ee6-8eab-29c5171e8a1f
Van Achterberg, Theo
eb49404e-62c6-427d-bb94-580254177a30
Van der Hooft, Truus
fa8ebd04-70d9-41fd-a181-c48dce733c5c
Smeitink, Jan
78cd1dd2-3e5c-4a47-88bd-a8b3fd1e146d
Schoonhoven, Lisette
46a2705b-c657-409b-b9da-329d5b1b02de
Van Engelen, Baziel
159e0f8d-2db5-4d79-a4ed-00e8e8a8a97a
Noorda, Greet, Van Achterberg, Theo, Van der Hooft, Truus, Smeitink, Jan, Schoonhoven, Lisette and Van Engelen, Baziel
(2012)
Problems of adults with mitochondrial disease - the patient's perspective: focus on loss.
JIMD Reports, 6, .
(doi:10.1007/8904_2011_121).
(PMID:23430944)
Abstract
Objective: This study aimed to identify problems as experienced by adults with a mitochondrial disease. We chose to describe these problems from the patients' perspective as we thought this would give optimal input for care improvement.
Design: A qualitative design using the grounded theory approach, involving single individual open interviews with 16 adults with a mitochondrial disease.
Results: This study revealed "loss" as the main concept, where one loss often preceded other losses. Respondents mentioned loss of energy as the most basic loss in having a mitochondrial disease, leading to multiple varied losses in all areas of daily life. Looking back, they mentioned psychosocial-spiritual problems and dealing with actual and expected future losses as most prominent and difficult. In our study, we determined seven comprehensive themes: "loss of energy", "loss of independence and autonomy", "loss of social participation", "loss of personal identity", "loss of dreams and future" as well as "lack of health care" and "coping and adjustment".
Conclusions: In this first study on this theme, we developed a theory about patient's losses related to mitochondrial disease. They experience a variety of problems in the physical, psychological, social and spiritual human domain. Patients experience a lack of health care and professional support as well. They use various strategies to manage their multiple losses and experience circumstances in which it is difficult to manage them effectively. The results can be used as a guide for improving health care, education and research and might result in an improved quality of life.
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e-pub ahead of print date: 24 February 2012
Published date: 2012
Organisations:
Faculty of Health Sciences
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Local EPrints ID: 350344
URI: http://eprints.soton.ac.uk/id/eprint/350344
ISSN: 2192-8304
PURE UUID: 4f517a62-833a-4151-b893-48feecd4e0f8
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Date deposited: 22 Mar 2013 10:50
Last modified: 15 Mar 2024 03:41
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Author:
Greet Noorda
Author:
Theo Van Achterberg
Author:
Truus Van der Hooft
Author:
Jan Smeitink
Author:
Baziel Van Engelen
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