Tag: support

Support amid uncertainty: Long COVID illness experiences and the role of online communities

Abstract:

Long COVID is characterized by persistent and debilitating long-term symptoms from COVID-19. Many persons with Long COVID began gathering in online communities during the early phases of the pandemic to share their illness experiences. This qualitative interview study explored the subjective experiences of 20 persons with Long COVID recruited from five online communities. Their understandings of illness and associated implications for social relationships with family and friends, healthcare professionals, and online community members were explored.

Three themes were identified from our analysis, including (1) complex and unpredictable illness experienced amid an evolving understanding of the pandemic; (2) frustration, dismissal, and gaslighting in healthcare interactions; and (3) validation and support from online communities. These findings highlight the significant uncertainty that persons with Long COVID navigated, the features of their often dismaying healthcare experiences, and the ways in which online communities aided them in understanding their illness.

Source: Russell D, Spence NJ, Chase JD, Schwartz T, Tumminello CM, Bouldin E. Support amid uncertainty: Long COVID illness experiences and the role of online communities. SSM Qual Res Health. 2022 Dec;2:100177. doi: 10.1016/j.ssmqr.2022.100177. Epub 2022 Oct 4. PMID: 36212783; PMCID: PMC9531408. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9531408/ (Full text)

Understanding the experiences of caring for a partner with myalgic encephalopathy: a qualitative study of men in Norway

Abstract:

Background: Informal caring is expanding in many countries as populations age. There is a lot of research on how to care responsibilities are experienced by next of kin, but there is little research on men, which is the focus of this study. This specific focus is Myalgic Encephalopathy (ME), which is a condition that often affects women. This means that it is men who often find themselves in a caring role.

Aim: This project aims to explore what it was like for Norwegian men to have a caring role toward a partner with ME and how it affects everyday life.

Method: A qualitative approach was used. Ten semi-structured interviews were conducted, and the participants were recruited from different places in Norway. All were between the ages of 30 to 60 years old and were caring for a partner for several years. To analyze the data, thematic analysis was used, to find different patterns in the data.

Results: A data emerged two main themes and seven under the themes “experiencing the impact of caring for a partner with ME on everyday life “and providing different kinds of support. The experience around the role of caring was influenced by several factors, such as changes in finances and family dynamics as well as accessing formal support. Overall, the mean men felt that being in a caring role meant that life was being put on hold.

Conclusion: Findings from this study help to strengthen previous research. Having a caring role for a sick partner with ME was demanding and greatly affects everyday life. Men found the role of care challenging and it could negatively affect the person psychologically. For most people in a caring role, there was potential for better support both emotionally and financially.

Source: Elise Torp. Understanding the experiences of caring for a partner with myalgic encephalopathy: a qualitative study of men in Norway. M.Sc. Thesis. https://brage.inn.no/inn-xmlui/handle/11250/3019314?locale-attribute=en

“it’s a medical condition … you need to support as much as possible”: a qualitative analysis of teachers’ experiences of chronic fatigue syndrome / myalgic encephalomyelitis (CFS/ME)

Editor’s note: Both CBT and graded exercise are recommended in this study.

Abstract:

Background: An increasing number of children with complex health needs are being educated in mainstream classes. CFS/ME is a complex and disabling condition, and there is little guidance on how primary school teachers can support younger children with this condition. To improve care, it is important to understand what these children need in the school setting, and the barriers and facilitators to teachers providing this support. The aims for this qualitative study were to explore teachers’ views about CFS/ME, their experiences of supporting a pupil with CFS/ME and their perspectives on the barriers and facilitators to providing support.

Methods: We recruited families from an NHS specialist paediatric CFS/ME service and families were eligible if the child was aged between 5 and 11 years and had a diagnosis of CFS/ME. We gained written consent/assent from families to invite the child’s teacher to participate in a qualitative interview. We contacted these teachers, gained written consent and then carried out semi-structured qualitative interviews. Interviews were audio-recorded, transcribed, anonymised and analysed thematically. Interviews took place between July 2018 and December 2018.

Results: We interviewed 11 teachers; their pupil’s age ranged from 5 to 11 years and school attendance ranged from 0 to 80%. Theme 1: Most teachers provided rich descriptions of their pupil’s CFS/ME; they consistently described cognitive dysfunction and significant fatigue, but beyond this the symptoms varied from one account to the next (from mobility problems, to aches and pains, digestive problems, headaches, nausea and hypersensitivity). These teachers noted the ripple effects on their pupil’s social, emotional and academic functioning. Two of the eleven teachers said that they did not observe symptoms of CFS/ME, expressing a degree of scepticism about the diagnosis. Theme 2: Teachers described a close relationship with their pupil. They said they understood the individual needs of the child and portrayed positive and proactive attitudes towards providing support. The type of support provided included facilitating rest breaks and limiting strenuous activities; using practical strategies to address cognitive, physical, social and emotional difficulties; maintaining a connection with the child during their absences from school; and encouraging the child to talk about their health and wellbeing. Teachers noted that receiving formal confirmation of the child’s diagnosis enabled them to put this support in place. Theme 3: The adaptations they described were often intuitive, rather than being based on a knowledge of CFS/ME. Teachers wanted more resources to increase their understanding of the condition and its management.

Conclusions: Primary school teachers want to provide effective support for children with CFS/ME. Clinical services should consider working in collaboration with teachers to equip them with evidence-based strategies for CFS/ME management in the primary school setting.

Source: Brigden A, Shaw A, Crawley E. “it’s a medical condition … you need to support as much as possible”: a qualitative analysis of teachers’ experiences of chronic fatigue syndrome / myalgic encephalomyelitis (CFS/ME). BMC Pediatr. 2021 Jan 4;21(1):6. doi: 10.1186/s12887-020-02461-7. PMID: 33397331; PMCID: PMC7780629. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7780629/ (Full text)

A relational analysis of an invisible illness: A meta-ethnography of people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their support needs

Abstract:

Chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) is indicated by prolonged, medically unexplained fatigue (amongst other symptoms), not alleviated by rest, and causing substantial disability. There are limited treatments on offer, which may not be effective and/or acceptable for all people, and treatment views are polarised. We, thus, aimed to take a step back from this debate, to explore more broadly preferences for formal and informal support among people with CFS/ME. We used a meta-ethnography approach to examine the substantial qualitative literature available. Using the process outlined by Noblit and Hare, and guided by patient involvement throughout, 47 studies were analysed.

Our synthesis suggested that to understand people with CFS/ME (such as their invisibility, loss of self, and fraught clinical encounters), it was useful to shift focus to a ‘relational goods’ framework. Emotions and tensions encountered in CFS/ME care and support only emerge via ‘sui generis’ real life interactions, influenced by how social networks and health consultations unfold, as well as structures like disability support. This relational paradigm reveals the hidden forces at work producing the specific problems of CFS/ME, and offers a ‘no blame’ framework going forward.

Source: Pilkington K, Ridge DT, Igwesi-Chidobe CN, Chew-Graham CA, Little P, Babatunde O, Corp N, McDermott C, Cheshire A. A relational analysis of an invisible illness: A meta-ethnography of people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their support needs. Soc Sci Med. 2020 Sep 16;265:113369. doi: 10.1016/j.socscimed.2020.113369. Epub ahead of print. PMID: 33039734. https://pubmed.ncbi.nlm.nih.gov/33039734/

Chronic fatigue syndrome: sufferers’ evaluation of medical support

Abstract:

In response to reports of negative cooperation between sufferers of chronic fatigue syndrome (CFS) and their doctors, semi-structured interviews were conducted with sufferers from two different patient samples.

Satisfaction with support received and with medical professionals in general was low. Sufferers complained about insufficient informational as well as emotional support from their doctors, and as a consequence most opted for alternative or complementary forms of treatment.

In addition, disagreements over illness aetiology and treatment precluded effective cooperation. If satisfaction and compliance are to improve, sufferers will need more information about CFS and more support.

 

Source: Ax S, Gregg VH, Jones D. Chronic fatigue syndrome: sufferers’ evaluation of medical support. J R Soc Med. 1997 May;90(5):250-4. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1296257/ (Full article)

 

A national assessment of the service, support, and housing preferences by persons with chronic fatigue syndrome. Toward a comprehensive rehabilitation program

Abstract:

Persons with Chronic Fatigue Syndrome (PWCs) completed and returned by mail a brief survey of open- and closed-ended items designed to assess their utilization and preferences for a variety of services. A total of 984 middle-aged adults diagnosed with Chronic Fatique Syndrome (CFS) from across North America returned the survey. During the past 12 months, many of these PWCs reported utilization of a primary care physician, gynecologist, CFS specialist, and self-help group to assist in their recovery from CFS. Most PWCs believed it was important to educate both health-care practitioners and the general public about CFS. In terms of their desire for specific recovery needs, factor analysis of responses indicated that these PWCs preferred self-help/social support services and general advocacy services in the treatment of their illness. The implications of these results for developing rehabilitation programs for PWCs are discussed.

 

Source: Jason LA, Ferrari JR, Taylor RR, Slavich SP, Stenzel CL. A national assessment of the service, support, and housing preferences by persons with chronic fatigue syndrome. Toward a comprehensive rehabilitation program. Eval Health Prof. 1996 Jun;19(2):194-207. http://www.ncbi.nlm.nih.gov/pubmed/10186910

 

Chronic fatigue syndrome. Self help groups give valuable support

Editor,-Tony Delamothe’s article on myalgic encephalomyelitis was refreshingly objective,’ but this cannot be said of S M Lawrie and A J Pelosi’s editorial.2 Delamothe questions whether “medical journals keep doctors in the dark.”‘ We believe that the editorial was not even handed.

Within two weeks of publication of the article and editorial our paper on self help groups was published.3 Lawrie and Pelosi’s editorial stated, “if an illness is attributed entirely to external sources there will be little scope for self help.”2 Our results were quite different. The Moray Firth myalgic encephalomyelitis self help group has existed for the past seven years and has had one coordinator (AG). A representative sample of members was surveyed by questionnaire in 1988, 1989, and 1992; response rates were 44/53 (83%), 19/34 (56%), and 42/49 (86%) respectively. The results (table) contradict the statement in the editorial.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2540186/pdf/bmj00440-0054c.pdf

 

Source: Ho-Yen DO, Grant A. Chronic fatigue syndrome. Self help groups give valuable support. BMJ. 1994 May 14;308(6939):1298-9. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2540186/