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Qualitative research
Research
Exploring the patient perspective of fatigue in adults with visual impairment: a qualitative study
  1. Wouter Schakel1,
  2. Christina Bode2,
  3. Hilde P A van der Aa1,
  4. Carel T J Hulshof3,
  5. Judith E Bosmans4,
  6. Gerardus H M B van Rens1,5,
  7. Ruth M A van Nispen1
  1. 1 Department of Ophthalmology, VU University Medical Centre and Amsterdam Public Health Research Institute, Amsterdam, The Netherlands
  2. 2 Department of Psychology, Health & Technology, University of Twente, Enschede, The Netherlands
  3. 3 Coronel Institute of Occupational Health, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands
  4. 4 Department of Health Sciences and Amsterdam Public Health Research Institute, Faculty of Earth and Life Sciences, VU University Amsterdam, Amsterdam, The Netherlands
  5. 5 Department of Ophthalmology, Elkerliek Hospital, Helmond, The Netherlands
  1. Correspondence to Wouter Schakel; w.schakel{at}vumc.nl

Abstract

Objectives Fatigue is an often mentioned symptom by patients with irreversible visual impairment. This study explored the patient perspective of fatigue in visually impaired adults with a focus on symptoms of fatigue, causes, consequences and coping strategies.

Setting Two large Dutch low vision multidisciplinary rehabilitation organisations.

Participants 16 visually impaired adults with severe symptoms of fatigue selected by purposive sampling.

Methods A qualitative study involving semistructured interviews. A total of four first-level codes were top–down predetermined in correspondence with the topics of the research question. Verbatim transcribed interviews were analysed with a combination of a deductive and inductive approach using open and axial coding.

Results Participants often described the symptoms of fatigue as a mental, daily and physical experience. The most often mentioned causes of fatigue were a high cognitive load, the intensity and amount of activities, the high effort necessary to establish visual perception, difficulty with light intensity and negative cognitions. Fatigue had the greatest impact on the ability to carry out social roles and participation, emotional functioning and cognitive functioning. The most common coping strategies were relaxation, external support, socialising and physical exercise and the acceptance of fatigue.

Conclusions Our results indicate that low vision-related fatigue is mainly caused by population specific determinants that seem different from the fatigue experience described in studies with other patient populations. Fatigue may be central to the way patients react, adapt and compensate to the consequences of vision loss. These findings indicate a need for future research aimed at interventions specifically tailored to the unique aspects of fatigue related to vision loss.

  • low vision
  • fatigue
  • patient's perspective
  • quality of life
  • qualitative research

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

https://doi.org/10.1136/bmjopen-2016-015023

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    Footnotes

    • Contributors The executive researcher (WS), project advisors (CB, HPAvA, CTJH and JEB), project leader (GHMBvR) and principal investigator (RMAvN) conceived the study and its design. WS, CB and RMAvN adapted and developed the interview scheme based on a qualitative study about the patient perspective on fatigue in patients with rheumatoid arthritis. Data collection, analysis and interpretation was performed by WS, with support from CB and RMAvN. WS drafted the manuscript, which was revised by the other authors (CB, HPAvdA, CTJH, JEB, GHMBvR and RMAvN). All authors read and approved the final manuscript. GHMBvR is the guarantor.

    • Funding The findings of the qualitative study presented here are part of a larger research project on fatigue among visually impaired adults. Financial support for this research project was provided by ‘ZonMw InZicht’, the Netherlands Organisation for Health Research and Development—InSight Society (Grant Number 60-0063598146), The Hague, The Netherlands.

    • Competing interests None declared.

    • Patient consent Detail has been removed from this case description/these case descriptions to ensure anonymity. The editors and reviewers have seen the detailed information available and are satisfied that the information backs up the case the authors are making.

    • Ethics approval This study was approved by the Medical Ethics Committee of the VU University Medical Centre (Amsterdam, the Netherlands) and has been performed in accordance with the ethical standards laid down in the 1964 Declaration of Helsinki and its later amendments. All patients gave written consent to participate in the present study.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data sharing statement No additional data are available.