Women's experiences of increasing subjective well-being in CFS/ME through leisure-based arts and crafts activities: a qualitative study

PURPOSE: To understand the meanings of art-making among a group of women living with the occupational constraints and stigma of CFS/ME. The study explored their initial motives for art-making, and then examined how art-making had subsequently influenced their subjective well-being. METHOD: Ten women with CFS/ME were interviewed; three provided lengthy written accounts to the interview questions. FINDINGS: Illness had resulted in devastating occupational and role loss. Participants took many years to make positive lifestyle changes. Art-making was typically discovered once participants had accepted the long-term nature of CFS/ME, accommodated to illness, and reprioritized occupations. Several factors then attracted participants specifically to art-making. It was perceived as manageable within the constraints of ill-health. Participants also tended to be familiar with craft skills; had family members interested in arts and crafts, and some desired a means to express grief and loss. Once established as a leisure activity, art-making increased subjective well-being mainly through providing increased satisfaction in daily life, positive self-image, hope, and contact with the outside world. Participants recommended provision of occupational/recreational counselling earlier in the illness trajectory. CONCLUSIONS: Creative art-making occurred as part of a broader acceptance and adjustment process to CFS/ME, and allowed some psychological escape from a circumscribed lifeworld.     

Chronic fatigue syndrome: a qualitative investigation of young patient's beliefs and coping strategies

Purpose.?The aim of this pilot study was to explore illness beliefs and coping strategies among adolescent patients with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), applying a qualitative methodology. Recent studies have explored the illness beliefs and coping strategies of adult patients with CFS/ME as possible contributing factors to the disease aetiology. These studies have mainly used quantitative methods, finding that patients often explain their illness as being due to physical causes, deny psychological causes and make use of passive and avoidant coping strategies.

Method.?Semi-structured, in-depth interviews were conducted with nine adolescent patients with CFS/ME, thematic analysis was adapted to the material and the results were interpreted in light of theories of attribution and coping.

Results.?The qualitative method allowed for more complex and nuanced accounts of illness experience. The findings showed that the adolescents differ from what has previously been reported, applying more varied and flexible illness attributions and coping mechanisms than expected.

Conclusions.?The heterogeneity suggested in the results has implications. We suggest three perspectives should be taken into account, both for further research and in clinical practice: (1) individual differences; (2) a developmental perspective and (3) interactive relational focus.     

The relationship among frequency and type of internet use,perceived social support,and sense of well-being in individuals with visual impairments

Purpose.?To determine the relationship among amount and type of internet use and perceived social support and subjective well-being in persons with visual impairments.

Method.?One hundred seventy-five participants were recruited through a letter sent out over 46 national and state listservs for persons with visual impairments and blindness. The mean age of participants was 46.7 years (SD?=?13.3), and 50.9% were women. The participants completed a survey containing a demographic questionnaire, an internet use questionnaire, the personal resources questionnaire – 2000 (PRQ-2000), and the sense of well-being inventory (SWBI).

Results.?Frequency and type of internet use was not significantly related to perceived social support in persons with visual impairments. There was a marginally significant positive association between internet use and overall sense of well-being. Specifically, online chat had a positive association with social support and well-being. Disability-related information seeking and participation in online support groups were negatively associated with well-being.

Conclusions.?Despite the mixed results of this study, the internet has potential practical implications for increasing the independence and social connectedness in persons with visual impairments.     

The affective aspect of subjective well-being among Chinese people with and without spinal cord injuries

Purpose. The purpose of this study was two-fold: (a) To examine differences in affective aspects of subjective well-being between people with and without spinal cord injuries (SCI), and (b) to explore relationships among perceived health, social support, self-efficacy beliefs, and the affective aspect of subjective well-being in these groups.

Method. A cross-sectional survey was conducted in China. A total of 119 out-patients with SCI and 109 college students without a disability participated in the study. Main outcome measures included: (a) The Index of Psychological Well-Being, (b) the Self-Rated Health Status Scale, (c) the Self-Efficacy Scale, and (d) the Social Support Scale.

Results. A multiple analysis of the variance indicated that participants with SCI had lower affective subjective well-being, social support, social self-efficacy beliefs, and poor health compared to participants without SCI [F (5, 211) = 22.37, p < 0.001]. A hierarchical multiple linear regression analysis was conducted separately for each SCI and non-SCI group. Results indicated that the combination of perceived health, social support, and social self-efficacy accounted for 25% of the variance in affective subjective well-being [F (8, 104) = 4.22, p < 0.001] among participants with SCI. For participants without SCI, social support and social self-efficacy were related to the affective subjective well-being [F (7, 97) = 4.77, p < 0.001]. They accounted for 27% of the variance in affective subjective well-being.

Conclusions. People with SCI may have lower affective subjective well-being than those without SCI, and the perceptions of one's health, social skills, and social support may play important roles in achieving affective subjective well-being in people with SCI.     

CFS/ME and mental health diagnoses: A qualitative approach to assessing the experiences of women who have now recovered

Despite much research in recent years there still remains much doubt as to what causes CFS, and the role that mental health disorders play in its aetiology and perpetuation. The purpose of this study was to assess the illness experiences of a cohort of women who had recovered from Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME) in order to examine the extent to which the diagnoses they were given took a mental health perspective, and whether or not it was accepted that they were suffering a genuine illness. This was a qualitative study using Grounded Theory, with a sample of 14 female participants who had previously had CFS but considered themselves to be substantially or totally recovered from this illness. It was found that the participants experienced substantial problems with regard to diagnosis, with health care professionals often ignoring their physical symptoms. Similarly they encountered problems of acceptance and belief in terms of having a genuine illness. The findings are further discussed in terms of concomitant stigma and bias towards mental health diagnoses for women generally.     

Complete mental health in adult siblings of those with a chronic illness or disability

Introduction: Sibling relationships have lifelong significance and childhood chronic illness and disability can have considerable impacts on healthy siblings, influencing development into adulthood. Research has not yet assessed well-being in this population using measures of both mental health and mental illness. Thus, this study assessed well-being in a comprehensive manner using the complete mental health (CMH) model.

Method: Participants (N?=?144) included both adult siblings of those with chronic illness or disability and adults with healthy siblings. Measures of positive social, psychological and emotional well-being were used to assess mental health and a measure of depression, anxiety, and stress was used to assess mental illness.

Results: A high proportion of participants, both with and without siblings with a chronic illness or disability, were experiencing symptoms of mental illness, accompanied by high wellbeing. This indicates that many participants fit into the struggling category of the CMH model.

Discussion: The present research highlights the need for early intervention services to ensure that siblings of those with a chronic illness or disability are well supported in developing strengths, as well as managing difficulties. Results also indicate that targeting students in mental health promotion is important to encourage participation in services.

• Implications for rehabilitation

• Siblings of those with a chronic illness or disability need to be included in assessments in order to understand the experience of the family unit.

• It is important for families and clinicians to be aware of the needs of healthy siblings and encourage them to interact with support services in order to maximise and maintain well-being.

• Skills-based support could be beneficial, particularly for providing caregivers with strategies to meet the needs of both their child with a chronic illness or disability and their healthy children.

     

'A lifestyle coat-hanger': a phenomenological study of the meanings of artwork for women coping with chronic illness and disability

Purpose: The purpose of this phenomenological enquiry was to explore the meanings and functions of art for a group of women living with disabling chronic illness. Participants were recruited on the basis that they considered artwork as central to their current well-being.

Method: Thirty women were interviewed and five submitted written narratives. Interpretative phenomenological analysis was carried out.

Results: About half of the participants had taken up their preferred artistic occupation since the onset of illness. Participants described their artwork as contributing to their health and well-being in many diverse ways. Art filled occupational voids, distracted thoughts away from illness, promoted the experience of flow and spontaneity, enabled the expression of grief, maintained a positive identity, and extended social networks. Its value was conceptualised by one participant as a 'lifestyle coat-hanger' organising numerous further roles and activities that gave purpose to life. Art was more than cathartic. It offered a versatile means of overcoming the restrictions imposed by illness on self and lifestyle, in many cases creating a more enriched lifestyle than before.

Conclusion: The findings may encourage professionals working in health and rehabilitation settings to assist clients in identifying meaningful, creative occupations that are feasible within the limits imposed by illness or injury.     

The occupational and quality of life consequences of chronic fatigue syndrome/myalgic encephalomyelitis in young people

INTRODUCTION: Chronic fatigue syndrome, termed myalgic encephalomyelitis in the United Kingdom (CFS/ME), is a debilitating condition involving severe exhaustion, cognitive difficulties, educational and vocational losses, and disruption of social activities and relationships. CFS/ME may affect volition (that is, value, interest and sense of competence). PURPOSE: To test Model of Human Occupation (MOHO) concepts by comparing young people with and without CFS/ME in terms of occupational participation, volition and health-related quality of life during infection and over time. METHOD: Three hundred and one people (12-18 years old) diagnosed with glandular fever were evaluated at the time of acute infection (baseline). Six months following diagnosis, 39 of them met the criteria for CFS/ME. A further 39 who recovered were randomly selected and matched to CFS/ME participants. Both groups were re-evaluated at 12 months and 24 months. The Occupational Self Assessment and the Child General Health Questionnaire were used to compare occupational participation. RESULTS: Those with CFS/ME reported lower levels of perceived competency, more difficulties with physical functioning and poorer general health status than those who recovered. CONCLUSION: Those with CFS/ME report lower perceived competency, and compromises in physical functioning, school performance, social activities, emotional functioning and general health. This supports the MOHO assertion that impairments affect volition and quality of life.     

Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document

Purpose: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating condition characterized by a number of symptoms which typically worsen following minimal exertion. Various strategies to manage the limited energy levels have been proposed. Of these, pacing has been consistently rated as one of the most helpful in surveys conducted by patient groups. This review is a response to the paucity of the information on pacing in the scientific literature. Method: We describe the principle of pacing and how this can be adapted to meet individual abilities and preferences. A critical evaluation of the research was conducted to ascertain the benefits and limitations of this strategy. Results: Based on various studies, it is proposed that pacing can help to stabilize the condition and avoid post-exertional malaise. Conclusion: Pacing offers practitioners an additional therapeutic option which is acceptable to the majority of patients and can reduce the severity of the exertion-related symptoms of ME/CFS.

Implications for Rehabilitation

• Pacing is a strategy which helps patients with ME/CFS limit exertion-related increases in symptomatology.

• Pacing is appropriate for those who operating near or at their maximum level of functioning, and for individuals with neurological and immunological abnormalities.

• Pacing may be offered as part of an individualized, multi-component management programme.

     

Measuring substantial reductions in functioning in patients with chronic fatigue syndrome

Purpose.?All the major current case definitions for chronic fatigue syndrome (CFS) specify substantial reductions in previous levels of occupational, educational, social, or personal activities to meet criteria. Difficulties have been encountered in operationalizing ‘substantial reductions.’ For example, the Medical Outcomes Study Short Form-36 Health Survey (SF-36) has been used to determine whether individuals met the CFS disability criterion. However, previous methods of using the SF-36 have been prone to including people without substantial reductions in key areas of physical functioning when diagnosing CFS. This study sought to empirically identify the most appropriate SF-36 subscales for measuring substantial reductions in patients with CFS.

Method.?The SF-36 was administered to two samples of patients with CFS: one recruited from tertiary care and the other a community-based sample; as well as a non-fatigued control group. Receiver operating characteristics were used to determine the optimal cutoff scores for identifying patients with CFS.

Results.?The SF-36 Role-Emotional subscale had the worst sensitivity and specificity, whereas the Vitality, Role-Physical, and Social Functioning subscales had the best sensitivity and specificity.

Conclusion.?Based on the evidence from this study, the potential criteria for defining substantial reductions in functioning and diagnosing CFS is provided.     

Myocardial infarction risk factors and well-being among 50-year-old women before and after the menopause: The population study “50-year-old people in Kungsör”

Objective - To examine whether early menopause has a negative influence on the traditional ischaemic heart disease (IHD) risk factor pattern and on well-being.

Design - Cross-sectional population study.

Setting - Kungsör, a semirural community in mid-Sweden.

Participants - All 155 women in Kungsör who became 50 years old in 1984–7.

Main outcome measures - Traditional IHD risk factors and self assessed well-being measures.

Results - Women who smoked had an earlier menopause than others. Postmenopausal women had significantly higher serum cholesterol levels (and haemoglobin levels), and more sleep disturbances than premenopausal women. There were no significant differences in other self-rated well-being, but home and family situation, patience, anxiety, and sleep disturbances tended to become worse with time from menopause.

Conclusions - These findings may be interpreted as evidence indicating that the menopause affects the HID risk factor profile and well-being negatively.     

Urinary incontinence in a community sample of older adults: prevalence and impact on quality of life

Purpose.?To measure the prevalence of urinary incontinence (UI) in a community-dwelling sample and the impact of self-reported UI on well-being and activity in older men and women.

Method.?Participants were older adults aged ≥65 years. Measures included the frequency of urgency incontinence, depression, positive and negative affect and social activity, independence in activities of daily living (IADL) and self-rated health. The data were collected by face to face interview (1994) and computer assisted telephone interviews (1996).

Results.?Of the 796 participants, 28%% experienced urgency incontinence and 21%% reported stress incontinence occasionally or often, with higher rates among women. The threshold for the impact on depression, negative affect and IADL was with occasional occurrence of urinary urgency incontinence. For positive affect and self-rated health, the threshold was experiencing urinary urgency incontinence often. The presence of urinary stress incontinence was associated with depression, IADL dependence, self-rated health and positive affect. Overall, women with incontinence had higher negative affect scores, but men with stress incontinence had higher scores than those without.

Conclusions.?The impact of incontinence highlights the need for more effective management of the condition. The threshold for the effects of urinary urgency incontinence on mental health and functionality is lower than for the effects on general health. There is a need to consider how older people judge the impact of UI in the design of targeted health promotion programmes.     

Older Adults’ Experiences of Community Mobility in an Indian Metropolis: A Qualitative Study

Abstract

Aims: This study aimed to explore and understand how older adults experience community mobility within an urban Indian context, using a phenomenological approach. Methods: Ten older adults residing in Chennai city participated in this study. The investigator conducted individual, in-depth interviews of 60–75?minutes each. Results: Participants placed high value on community mobility, which contributed to their occupational participation and well-being. Participants identified numerous physical, social and attitudinal barriers to community mobility in their environment, leading to fear and restrictions in community mobility. Conclusion: The study findings underscore the need for the development of age-friendly communities within Indian society to promote occupational justice for older adults. Occupational therapists in India can intervene at the government, community, family and individual levels to enable older adults’ community mobility and occupational participation. Future research to investigate context-specific interventions to facilitate older adults’ community mobility is recommended.     

A Pilot Study Comparing of Two Therapy Regimens Following Carpometacarpal Joint Arthroplasty

ABSTRACT

Purpose. The purpose of this pilot study was to compare two occupational therapy regimens following arthroplasty: thumb splint plus home program and thumb splint plus occupational therapy. Methods. Nine participants who underwent a ligament reconstruction and tendon interposition surgery of the carpometacarpal (CMC) joint of the thumb were randomly assigned to either receive a splint and occupational therapy intervention or receive a splint and a home exercise program. Participants were assessed preoperatively and 6 months postoperatively using standardized assessments of joint motion, hand function, strength, and self-reports of pain and functional ability. Results. In each group, participants improved on all measures after surgery but there were no significant differences between the groups. Conclusion. The results suggest that either occupational therapy regimen postsurgery is effective but because of the small sample size, the results should be interpreted with caution.     

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management

Despite myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) affecting millions of people worldwide, many clinicians lack the knowledge to appropriately diagnose or manage ME/CFS. Unfortunately, clinical guidance has been scarce, obsolete, or potentially harmful. Consequently, up to 91% of patients in the United States remain undiagnosed, and those diagnosed often receive inappropriate treatment. These problems are of increasing importance because after acute COVID-19, a significant percentage of people remain ill for many months with an illness similar to ME/CFS. In 2015, the US National Academy of Medicine published new evidence-based clinical diagnostic criteria that have been adopted by the US Centers for Disease Control and Prevention. Furthermore, the United States and other governments as well as major health care organizations have recently withdrawn graded exercise and cognitive-behavioral therapy as the treatment of choice for patients with ME/CFS. Recently, 21 clinicians specializing in ME/CFS convened to discuss best clinical practices for adults affected by ME/CFS. This article summarizes their top recommendations for generalist and specialist health care providers based on recent scientific progress and decades of clinical experience. There are many steps that clinicians can take to improve the health, function, and quality of life of those with ME/CFS, including those in whom ME/CFS develops after COVID-19. Patients with a lingering illness that follows acute COVID-19 who do not fully meet criteria for ME/CFS may also benefit from these approaches.     

Brainstem perfusion is impaired in chronic fatigue syndrome

We looked for brain perfusion abnormalities in patients withmyalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).An initial pilot study revealed widespread reduction of regionalbrain perfusion in 24 ME/CFS patients, compared with 24 normalvolunteers. Hypoperfusion ofthe brainstem (0.72±0.05vs. 0.80±0.04, p<0.0001) was marked and constant.We then tested whether perfusion to the brainstem in ME/CFSpatients differs from thatin normals, patients with major depression,and others with epilepsy. Data from a total of 146 subjectswere included in the present study: 40 normal volunteers, 67patients with ME/CFS(24 in the pilot study, 16 with no psychiatricdisorders, 13 with ME/CFS and depression, 14 with ME/CFS andother psychiatric disorders), 10 epileptics, 20 young depressedpatientsand 9 elderly depressed individuals. Brain perfusionratios were calculated using ⁹⁹Tc^m-hexamethylpropylene amineoxime (⁹⁹Tc^m- HMPAO) and single-photon emission tomography (SPET)with a dedicated three-detector gamma camera computer/system(GE Neurocam). Brainstem hypoperfusion was confirmed in allME/CFS patients. Furthermore, the 16 ME/CFS patients with nopsychiatric disorders and the initial 24 patients inthe pilotstudy showed significantly lower brainstem perfusion (0.71$0.03)than did depressed patients (0.77$0.03; ANOVA, p<0.0001).Patients with ME/CFS have a generalized reduction of brain perfusion,with a particular pattern of hypoperfusion of the brainstem.     

Treatment Avenues in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Split-gender Pharmacogenomic Study of Gene-expression Modules

PurposeMyalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating multisymptom illness impacting up to 1 million people in the United States. As the pathogenesis and etiology of this complex condition are unclear, prospective treatments are limited. Identifying US Food and Drug Administration–approved drugs that may be repositioned as treatments for ME/CFS may offer a rapid and cost-effective solution.MethodsHere we used gene-expression data from 33 patients with Fukuda-defined ME/CFS (23 females, 10 males) and 21 healthy demographically comparable controls (15 females, 6 males) to identify differential expression of predefined gene-module sets based on nonparametric statistics. Differentially expressed gene modules were then annotated via over-representation analysis using the Consensus Pathway database. Differentially expressed modules were then regressed onto measures of fatigue and cross-referenced with drug atlas and pharmacogenomics databases to identify putative treatment agents.FindingsThe top 1% of modules identified in males indicated small effect sizes in modules associated with immune regulation and mitochondrial dysfunction. In females, modules identified included those related to immune factors and cardiac/blood factors, returning effect sizes ranging from very small to intermediate (0.147 < Cohen δ < 0.532). Regression analysis indicated that B-cell receptors, T-cell receptors, tumor necrosis factor α, transforming growth factor β, and metabolic and cardiac modules were strongly correlated with multiple composite measures of fatigue. Cross-referencing identified genes with pharmacogenomics data indicated immunosuppressants as potential treatments of ME/CFS symptoms.ImplicationsThe findings from our analysis suggest that ME/CFS symptoms are perpetuated by immune dysregulation that may be approached via immune modulation–based treatment strategies.     

State anxiety,psychological stress and positive well-being responses to yoga and aerobic exercise in people with schizophrenia: a pilot study

Purpose.?Worsening of schizophrenia symptoms is related to stress and anxiety. People with schizophrenia often experience difficulties in coping with stress and possess a limited repertoire of coping strategies. A randomised comparative trial was undertaken in patients with schizophrenia to evaluate changes in state anxiety, psychological stress and subjective well-being after single sessions of yoga and aerobic exercise compared with a control condition.

Method.?Forty participants performed a single 30-min yoga session, 20-min of aerobic exercise on a bicycle ergometre at self-selected intensity and a 20-min no exercise control condition in random order.

Results.?After single sessions of yoga and aerobic exercise individuals with schizophrenia or schizoaffective disorder showed significantly decreased state anxiety (p?<?0.0001), decreased psychological stress (p?<?0.0001) and increased subjective well-being (p?<?0.0001) compared to a no exercise control condition. Effect sizes ranged from 0.82 for psychological stress after aerobic exercise to 1.01 for state anxiety after yoga. The magnitude of the changes did not differ significantly between yoga and aerobic exercise.

Conclusion.?People with schizophrenia and physiotherapists can choose either yoga or aerobic exercise in reducing acute stress and anxiety taking into account the personal preference of each individual.     

Practice Nurses' views of their role in the management of Chronic Fatigue Syndrome/Myalagic Encephalitis: a qualitative study

Background  

NICE guidelines suggest that patients with Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME) should be managed in Primary Care. Practice Nurses are increasingly being involved in the management of long-term conditions, so are likely to also have a growing role in managing CFS/ME. However their attitudes to, and experiences of patients with CFS/ME and its management must be explored to understand what barriers may exist in developing their role for this group of patients. The aim of this study was to explore Practice Nurses' understanding and beliefs about CFS/ME and its management.