Can a disability studies-medical sociology rapprochement help re-value the work disabled people do within their rehabilitation?

This paper draws attention to the health-related work that disabled people do when engaging with rehabilitation services. Medical sociology has a rich history of looking at the 'illness work' that patients do, while disability studies scholars have explored the cultural value placed upon paid work and the effects on social status of being unable to work. Yet, a longstanding froideur between these two disciplines, which have fundamentally opposed ontologies of illness and disability, means that neither discipline has attended closely to the rehabilitation-related work that disabled people do. The concept of 'adjusting' to illness highlights seemingly irreconcilable disciplinary differences. Yet this article argues that the notion of 'adjustment work' can elucidate the socio-political character of the work disabled people do in their rehabilitation, which could create a more substantial and sustainable dialogue on this subject between disability studies and medical sociology. To make this case, we discuss interview data from the Rights-based Rehabilitation project, which sought to explore disabled people's lived experiences of rehabilitation.

Assessment of oral health-related quality of life (OHRQoL) in children with molar incisor hypomineralization (MIH) - A systematic review and meta-analysis of observational studies.

Background: Molar Incisor Hypomineralization (MIH) affects about 14% of the population. MIH may lead to enamel breakdown, early tooth decay and is known to cause sensitivity, pain, discomfort, etc., Despite several studies reporting impacts of MIH on oral health-related quality of life (OHRQoL) in children; no systematic review has been reported till date. Objectives: Our study aimed at assessing the impact of MIH on OHRQoL. Search Methods: Two researchers, Ashwin Muralidhar Jawdekar and Shamika Ramchandra Kamath, independently searched articles using appropriate keyword combinations in three search engines - PubMed, Cochrane Library, and Google Scholar and conflicts, if any were resolved by Swati Jagannath Kale. Studies either reported in English or complete translations available in English were selected. Selection Criteria: Observational studies on otherwise healthy 6-18-year-old children were considered. Interventional studies were included only to collect the baseline (observational) data. Data Collection and Analysis: From 52 studies, a total of 13 studies could be included in the systematic review and 8 in meta-analysis. Total scores of OHRQoL measures reported in the child perceptions questionnaire (CPQ) 8-10, CPQ 11-14, and parental-caregiver perception questionnaire (P-CPQ) scales were used as variables. Main Results: Five studies (2112 subjects) showed an impact on OHRQoL (CPQ); the pooled risk ratio (RR) confidence interval (CI) were 24.70 (13.93-35.47), showing statistically significant value (P < 0.001). The Three studies (811 participants) showed an impact on OHRQoL (P-CPQ); the pooled RR (CI) was 16.992 (5.119, 28.865) showing statistically significant value (P < 0.001). Heterogeneity (I2) was high (99.6% and 99.2%); hence, random effect model was used. Sensitivity analysis of two studies (310 subjects) showed impact on OHRQoL (P-CPQ); the pooled RR (CI) was 22.124 (20.382, 23.866) showing statistically significant value (P < 0.001); the heterogeneity was low (I2 = 0.0). The risk of bias across studies assessed using the appraisal tool for cross sectional studies tool was found to be moderate. The reporting bias assessed using the dispersion on the funnel plot was found to be minimal. Authors' Conclusions: Children with MIH are about 17-25 times more likely to have impacts on the OHRQoL compared to children with no MIH. Evidence is of low quality due to high heterogeneity. The risk of bias was moderate and publication bias was low.

Social support needs for equity in health and social care: a thematic analysis of experiences of people with chronic fatigue syndrome/myalgic encephalomyelitis.

BACKGROUND: Needs-based resource allocation is fundamental to equitable care provision, which can meet the often-complex, fluctuating needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). This has posed challenges both for those providing and those seeking support providers, in building shared understanding of the condition and of actions to address it. This qualitative study reports on needs for equity in health and social care expressed by adults living with CFS/ME. METHODS: The participants were 35 adults with CFS/ME in England, purposively selected to provide variation in clinical presentations, social backgrounds and illness experiences. Accounts of experienced needs and needs-related encounters with health and social services were obtained through a focus group (n = 6) and semi-structured interviews (n = 35). These were transcribed and needs related topics identified through data-led thematic analysis. FINDINGS: Participants emphasised needs for personalised, timely and sustained support to alleviate CFS/ME impacts and regain life control, in three thematic areas: (1) Illness symptoms, functional limitations and illness management; (2) practical support and social care; (3) financial support. Access of people with CFS/ME to support from health and social services was seen to be constrained by barriers stemming from social, cultural, organisational and professional norms and practices, further heightened for disadvantaged groups including some ethnic minorities. These reduced opportunities for their illness to be explained or associated functional limitations and social disadvantages to be addressed through social support. Participants sought more understanding of bio-psycho-social aspects of CFS/ME, of felt needs of people with CFS/ME and of human rights and disability rights, for providing person-centred, equitable care. CONCLUSIONS: Changes in attitudes of health practitioners, policy makers and general public and more flexibly organised health and social care provision are needed to address equity issues in support needs expressed by people with CFS/ME, to be underpinned by research-based knowledge and communication, for public and professional education. Policy development should include shared decision-making and coordinated action across organizations working for people with CFS/ME, human rights and disadvantaged groups. Experiences of people with CFS/ME can usefully inform an understanding of equity in their health and social care.

Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in adults: a qualitative study of perspectives from professional practice.

BACKGROUND: Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) can cause profound and prolonged illness and disability, and poses significant problems of uncertainty for healthcare professionals in its diagnosis and management. The aim of this qualitative study was to explore the nature of professional 'best practice' in working with people with CFS/ME. METHODS: The views and experiences of health care practitioners (HCPs) were sought, who had been judged by people with CFS/ME themselves to have been particularly helpful and effective. Qualitative semi-structured interviews following a topic guide were carried out with six health care practitioners. Interviews were audio-recorded, transcribed and subject to thematic analysis. RESULTS: Five main themes were developed: 1) Diagnosis; 2) Professional perspectives on living with CFS/ME; 3) Interventions for treatment and management; 4) Professional values and support for people with CFS/ME and their families; 5) Health professional roles and working practices. Key findings related to: the diagnostic process, especially the degree of uncertainty which may be shared by primary care physicians and patients alike; the continued denial in some quarters of the existence of CFS/ME as a condition; the variability, complexity, and serious impact of the condition on life and living; the onus on the person with CFS/ME to manage their condition, supported by HCPs; the wealth of often conflicting and confusing information on the condition and options for treatment; and the vital role of extended listening and trustful relationships with patients. CONCLUSIONS: While professional frustrations were clearly expressed about the variability of services both in primary and specialist care and continuing equivocal attitudes to CFS/ME as a condition, there were also strong positive messages for people with CFS/ME where the right services are in place. Many of the findings from these practitioners seen by their patients as helping them more effectively, accord with the existing literature identifying the particular importance of listening skills, respect and trust for establishing a therapeutic relationship which recognises key features of the patient trajectory and promotes effective person-centred management of this complex condition. These findings indicate the need to build such skills and knowledge more systematically into professional training informed by the experience of specialist services and those living with the condition.

Power grip, pinch grip, manual muscle testing or thenar atrophy - which should be assessed as a motor outcome after carpal tunnel decompression? A systematic review.

BACKGROUND: Objective assessment of motor function is frequently used to evaluate outcome after surgical treatment of carpal tunnel syndrome (CTS). However a range of outcome measures are used and there appears to be no consensus on which measure of motor function effectively captures change. The purpose of this systematic review was to identify the methods used to assess motor function in randomized controlled trials of surgical interventions for CTS. A secondary aim was to evaluate which instruments reflect clinical change and are psychometrically robust. METHODS: The bibliographic databases Medline, AMED and CINAHL were searched for randomized controlled trials of surgical interventions for CTS. Data on instruments used, methods of assessment and results of tests of motor function was extracted by two independent reviewers. RESULTS: Twenty-two studies were retrieved which included performance based assessments of motor function. Nineteen studies assessed power grip dynamometry, fourteen studies used both power and pinch grip dynamometry, eight used manual muscle testing and five assessed the presence or absence of thenar atrophy. Several studies used multiple tests of motor function. Two studies included both power and pinch strength and reported descriptive statistics enabling calculation of effect sizes to compare the relative responsiveness of grip and pinch strength within study samples. The study findings suggest that tip pinch is more responsive than lateral pinch or power grip up to 12 weeks following surgery for CTS. CONCLUSION: Although used most frequently and known to be reliable, power and key pinch dynamometry are not the most valid or responsive tools for assessing motor outcome up to 12 weeks following surgery for CTS. Tip pinch dynamometry more specifically targets the thenar musculature and appears to be more responsive. Manual muscle testing, which in theory is most specific to the thenar musculature, may be more sensitive if assessed using a hand held dynamometer - the Rotterdam Intrinsic Handheld Myometer. However further research is needed to evaluate its reliability and responsiveness and establish the most efficient and psychometrically robust method of evaluating motor function following surgery for CTS.