Poor Sleep Quality Experience and Self-Management Strategies in Fibromyalgia: A Qualitative Metasynthesis
Abstract
:1. Introduction
2. Methods
2.1. Aim
2.2. Methodological Approach
2.3. Research Question
2.4. Approach to Searching
2.5. Inclusion Criteria
2.6. Data Sources
2.7. Electronic Search Strategy
2.8. Study Screening Methods and Appraisal of the Methodological Quality
2.9. Analyzing and Synthesizing Qualitative Findings
3. Results
3.1. Metasummary
3.2. Metasynthesis
3.2.1. Experience of Poor Sleep Quality in FM
- (1)
- Evaluation of Poor Sleep Quality
“Sleep, or lack of it, is the worst thing about this condition for me […] It’s just another way my body has betrayed me.”
“I can, initially, go to sleep, but it’s staying asleep that’s very hard. And then, I got to sleep tired and I wake up exhausted, and it’s frustrating.”
“Sleeplessness nights ... can you see the black circles under my eyes, because I wake up at 2 o’clock in the morning, then I wake up and feel right awake...and the next day I feel tired, I just want to sleep on but I have to get up and go to work ... I am extremely physically tired ... I am so tired I just can’t function as a normal person.”
“The fatigue, it’s number one, because I can deal with the pain, at least up to a certain point, but the fatigue there’s nothing you can do besides sleep. There is no way to help that. There’s no pill you can take, there’s no medicine.”
“I could sleep 20 hours and still be tired. That is terrible.”
“I feel constantly in pain, which obviously when I don’t get enough sleep will aggravate that, and then because I’ve aggravated pain I don’t get enough sleep. So I am on a vicious cycle, I can’t sleep properly because of the pain, and I can’t, because I am not sleeping, I then get in more pain.”
“I don’t hardly ever sleep with my husband anymore, because I disturb his sleep so much of the time with my tossing and turning, trying to get comfortable, getting in and out of bed, because I can’t get comfortable.”
“It’s not just the pain and the fatigue...it’s the nonrestorative sleep...it’s a vicious circle because if you don’t get enough sleep you feel pain more acutely...you’re more tired and unable to sleep well.”
“I will be thinking and, and trying to explain stuff to you, but my mind will just go completely blank. That gets worse on certain days, obviously with less sleep, but on other days I can sort of string together.”
“[After a night shift] I slept maybe an hour or hour and a half a day … you know how it is when you don’t sleep practically at all for weeks and months … In fact, I was practically sleepless for years …”
"It’s that sensation of really I have switched off, I am not aware of anything. That you know, those three hours where maybe the following day my husband said to me, “Oh did you hear the thunderstorm last night?” “No,” because it happened on those three hours and I didn’t hear anything. I didn’t hear the thunderstorm, I didn’t notice the light, nothing, and that is for me a proper sleep. When I’m aware of everything else I’m not, and I get up noticing that I have not slept properly.”
- (2)
- Response to Poor Sleep Quality
“The not sleeping and then not being able to function the next day when you need to perform at work …—when you’re being paid and you’re meant to work and you can’t function, it’s horrible, it’s really horrible because you feel like a failure.”
“I don’t feel like I can sleep. ... This is aging me, I can feel it. Sometimes I just hate life.”
“Sleep, or lack of it, is the worst thing about this condition for me. I have christened my bedroom “the torture chamber.”
“If there’s something on my mind, that makes me a bit worried about sleeping, I don’t know what it is but I sort of need to try and get to the bottom of it, but I sort of have this fear of going to bed.”
3.2.2. Poor Sleep Quality Management Strategies in FM
- (1)
- Management Strategies to Favor Sleep
“I am on Amytriptiline to help with my sleep and other tablets … I only take them when it is right for my body. I don’t like to be taken as a guinea pig. I don’t trust staff to deal with me in that way. I am the only person who knows what it feels like to be ill, and what is good for my body, I don’t like other people to tell me and to control me.”
“I know that it’s an absolute crucial thing to get a good night’s sleep; to go to bed at the same time; eating on time... so everything has to be regular. And the more regular it is, the better I feel.”
“I put earplugs in and I find when I put earplugs in I seem to sleep different … although I don’t like things in my ears, if it means I’m going to sleep a bit better, so whether that’s about noise, although it’s very quiet where I live, so I don’t know, I think I’m just looking for answers.”
“Sometimes I think I can get back to sleep, so I wait to see if I can and I think come on and I just lie there and hopefully I can get back to sleep easily again, um, but more often than not, I can’t so after I try for about 15 to 20 minutes and if I can’t get back to sleep after that time then as I say I put the television on and it’ll refocus me and if I fall back to sleep, good.”
3.2.3. Managing the Consequences of a Sleepless Night
“I try to get out of bed every day regardless of how I feel. I’m trying to function, so I take the various medications … in the hopes that while it causes other problems it will at least allow me to continue to have a life.”
“I might have to go to bed for a couple of hours and then I’ll be alright for the evening, because I know they advise you not to go to bed don’t they, but I can’t physically not and I find it makes me feel better actually if I do, so for me it works better, so you I’ve learnt to do what suits me rather than what I’m told to do you know they say you muck up your body clock up if you sleep in the day but for me it doesn’t work that way.”
4. Discussion
4.1. Rigour
4.2. Limitations of the Study
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Conflicts of Interest
Appendix A. Search Strategy for PubMed
References
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Authors and Year of Publication | Country | Sample Characteristics | Method of Approach | CASP Checklist n. of Items Fulfilled/n. of Items |
---|---|---|---|---|
Ramlee et al. [40] | England | n = 6 (3♀/3♂) Mean age = 49 years | Personal semi-structured interviews | 10/10 |
Russell et al. [41] | North Ireland | n = 14 (12♀/2♂) | Focus groups | 10/10 |
Vincent et al. [42] | USA | n = 44 (34♀/10♂) Mean age: 45 years | Open-ended interview administered electronically | 10/10 |
Kleinman et al. [43] | n = 34 (30♀/4♂) Mean age = 47.8 years | Focus groups | 9/10 | |
Traska et al. [44] | USA | n = 8♀ Mean age = 61 years | Interview group | 9/10 |
Sallinen et al. [45] | Finland | n = 20♀ Mean age = 54 years | Narrative interview | 9/10 |
Humphrey et al. [46] | USA Germany France | n = 40 Mean age = 48.7 years | Open-ended interviews | 10/10 |
Theadom et al. [17] | England | n = 16 (14♀/2♂) Mean age (50.95 years) | Semi-structured interviews | 9/10 |
Martin et al. [47] | USA | n = 20 (16♀/4♂) Mean age = 50.3 years | Personal structured interviews | 9/10 |
Lempp et al. [48] | England | n = 12 (11♀/1♂) Mean age = 49 years | Personal semi-structured interviews | 9/10 |
Arnold et al. [49] | USA | n = 48♀ Mean age = 51 years | Focus groups | 9/10 |
Crooks [50] | Canada | n = 55♀ | Personal semi-structured interviews | 9/10 |
Cunningham et al. [51] | Canada | n = 8 (7♀/1♂) Age range 30-70 | Personal in-depth interviews | 9/10 |
Söderberg et al. [52] | Sweden | n = 25♀ Mean age = 46.8 years | Personal narrative interviews | 9/10 |
Cudney et al. [53] | USA | n = 10♀ | Unstructured, online support group | 9/10 |
Sturge-Jacobs [54] | Canada | n = 9♀ Age range 20-57 years | Personal unstructured interviews | 10/10 |
Raymond and Brown [55] | Canada | n = 7 (6♀/1♂) | Personal in-depth semi-structured interviews | 9/10 |
Overarching Theme | Experience of Poor Sleep Quality in FM | Poor Sleep Quality Management Strategies in FM | Intrastudy Intensity Effect Sizes | ||
---|---|---|---|---|---|
Sub-Themes | Evaluation of Poor Sleep Quality | Response to Poor Sleep Quality | Management Strategies to Favor Sleep | Managing the Consequences of a Sleepless Night | Individual Studies’ Contributions to Sub-Themes |
Ramlee et al. [40] | ● | 0.7% | |||
Russell et al. [41] | ● | 0.1% | |||
Vincent et al. [42] | ● | 0.1% | |||
Kleinman et al. [43] | ● | ● | 10.5% | ||
Traska et al. [44] | ● | 0.1% | |||
Sallinen et al. [45] | ● | ● | 0.2% | ||
Humphrey et al. [46] | ● | 0.3% | |||
Theadom et al. [17] | ● | ● | ● | ● | 29% |
Martin et al. [47]) | ● | 0.1% | |||
Lempp et al. [48] | ● | ● | 0.2% | ||
Arnold et al. [49] | ● | ● | 0.2% | ||
Crooks [50] | ● | ● | 0.2% | ||
Cunningham et al. [51] | ● | ● | 0.3% | ||
Söderberg et al. [52] | ● | ● | 0.3% | ||
Cudney et al. [53] | ● | ● | ● | ● | 16.3% |
Sturge-Jacobs [54] | ● | ● | ● | 0.3% | |
Raymond and Brown [55] | ● | 0.1% | |||
Interstudy Frequency Effect Sizes | |||||
Representation of sub-themes in individual studies | 76% | 29% | 41.6% | 41% |
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Climent-Sanz, C.; Morera-Amenós, G.; Bellon, F.; Pastells-Peiró, R.; Blanco-Blanco, J.; Valenzuela-Pascual, F.; Gea-Sánchez, M. Poor Sleep Quality Experience and Self-Management Strategies in Fibromyalgia: A Qualitative Metasynthesis. J. Clin. Med. 2020, 9, 4000. https://doi.org/10.3390/jcm9124000
Climent-Sanz C, Morera-Amenós G, Bellon F, Pastells-Peiró R, Blanco-Blanco J, Valenzuela-Pascual F, Gea-Sánchez M. Poor Sleep Quality Experience and Self-Management Strategies in Fibromyalgia: A Qualitative Metasynthesis. Journal of Clinical Medicine. 2020; 9(12):4000. https://doi.org/10.3390/jcm9124000
Chicago/Turabian StyleCliment-Sanz, Carolina, Genís Morera-Amenós, Filip Bellon, Roland Pastells-Peiró, Joan Blanco-Blanco, Fran Valenzuela-Pascual, and Montserrat Gea-Sánchez. 2020. "Poor Sleep Quality Experience and Self-Management Strategies in Fibromyalgia: A Qualitative Metasynthesis" Journal of Clinical Medicine 9, no. 12: 4000. https://doi.org/10.3390/jcm9124000
APA StyleCliment-Sanz, C., Morera-Amenós, G., Bellon, F., Pastells-Peiró, R., Blanco-Blanco, J., Valenzuela-Pascual, F., & Gea-Sánchez, M. (2020). Poor Sleep Quality Experience and Self-Management Strategies in Fibromyalgia: A Qualitative Metasynthesis. Journal of Clinical Medicine, 9(12), 4000. https://doi.org/10.3390/jcm9124000