Mothering and intellectual disability:partnership rhetoric?

This paper is about mothering an intellectually disabled child identified with special educational needs. It specifically looks at the parent partnership rhetoric that has dominated UK government policy and directives for nearly three decades and yet research suggests parents and more often mothers have to battle to be recognised as legitimate experts. This paper engages with sociological analysis as it highlights via qualitative narratives that mothers are weighed down by the sheer number of professionals involved in their day-to-day life. Moreover, mothers whose children are not identified in the early years are often blamed in the first instance for playing a part in their child’s difficult behaviour. This research ultimately suggests that partnership work is important and necessary for practice within health, education and social work professions, not least of all because the emotional roller-coaster that mothers experience during the assessment and statementing process is disabling.

Intellectual disability and being human:a care ethics model

This pioneering book, in considering intellectually disabled people's lives, sets out a care ethics model of disability that outlines the emotional caring sphere, where love and care are psycho-socially questioned, the practical caring sphere, where day-to-day care is carried out, and the socio-political caring sphere, where social intolerance and aversion to difficult differences are addressed. This book draws from an understanding of how intellectual disability is represented in all forms of media, a feminist ethics of care, and capabilities, as well as other theories, to provide a critique and alternative to the social model of disability.

Inclusive education and intellectual disability:a sociological engagement with Martha Nussbaum

As a result of exclusionary tactics, social, cultural or economic disadvantage or disability, vast numbers of pupils have poor educational experiences and are either marginalised or demonised due to 'difficult differences'. In the context of Martha Nussbaum's capabilities approach, where she suggests that we ought to be who we want to be, this paper addresses intellectual disability, inclusion and inclusive education. It proposes that care, compassion, creativity and ethics are critical in understanding the education for all children and young people, rather than necessarily pedagogical process. In addition, it suggests that learning should take place within and through relationships and that these relationships are important in developing a healthy sense of self. Therefore politically, rather than following a path of blame whether it is the dysfunctional family, the deficit child or the economically deprived nation, this paper says that we require socially just practices, compassion and care as fundamental to human development, social inclusion and inclusive education. Ultimately, education is failing a large sum of children and young people and therefore needs to be radically reconsidered.

Set-up and maintenance of syringe drivers for subcutaneous drug administration in palliative care

Focal points: Details of syringe driver use were collected from 11 inpatient hospice units in the West Midlands and compared with predetermined standards set by a multidisciplinary group We recorded 294 syringe driver events which complied with standards for the choice of administration site, protection of the syringe driver from light and the reason for initiation of the infusion Issues of nurse training, variability in prescribing practices, provision of written information for patients, labelling and documentation of the diluent used were all identified as areas in which compliance with standards could be improved

Co-constructed caring research and intellectual disability:an exploration of friendship, intimacy and being human

For this paper, emotional and socio-political questions lie at the heart of relationships in understanding intellectual disability and what it is to be a human. While the sexual and intimate is more often than not based on a private and personal relationship with the self and (an)other, the sexual and intimate life of intellectually disabled people is more often a ‘public’ affair governed by parents and/or carers, destabilizing what we might consider ethical and caring practices. In the socio-political sphere, as an all-encompassing ‘care space’, social intolerance and aversion to difficult differences are played out, impacting upon the intimate lives of intellectually disabled people. As co-researchers (one intellectually disabled and one ‘non-disabled’), we discuss narratives from a small scale research project and our personal reflections. In sociological research and more specifically within disability research it is clear that we need to keep sex and intimacy on the agenda, yet also find ways of doing research in a meaningful, caring and co-constructed way.

The use of anticholinergic agents to treat excessive oropharyngeal and tracheal secretions in palliative care

Palliative care involves a multi-professional team approach to the provision of active, holistic care for patients and their families when the patient's disease is no longer responsive to curative treatment. Patient care encompasses medical and pharmacological intervention for symptom control, together with psychological, spiritual and social support for patients and families. Care is provided by teams in hospice, hospital or community environments. Although traditionally associated with providing care for cancer patients, palliative care services are increasingly providing for patients with non-malignant disease. Symptoms commonly associated with terminal phase of disease include pain, nausea, agitation, respiratory symptoms and general fatigue. During the last few days of life, patients may become weak, resulting in difficulty taking oral medication and have periods of unconsciousness. Some patients may require drug administration via subcutaneous infusion. A proportion of patients may develop difficulty clearing respiratory secretions causing a characteristic ‘death rattle’, which although not generally considered to be distressing for the patient, is often treated with a variety of anticholinergic drugs in an attempt to reduce the ‘noisy breathing’ for the benefit of relatives and others who may be closely associated with the patient.This study examined treatment of death rattle in two Hospices focusing on objective and subjective outcome measures in order to determine the efficacy of anticholinergic regimens in current use. Qualitative methods were employed to elicit attitudes of professionals and carers working closely with the patient. The number of patients recruited and monitored were small, many confounding factors were identified which questioned firstly the clinical rationale for administering anticholinergic drugs routinely to treat death rattle and secondly, the ethics of administering drug regimens to patients to treat death rattle with the primary aim of relieving distress for others. Ethnical issues, including those of consent are discussed in relation to their impact on the methodology of end of life studies in medicines management in palliative care.

Anticholinergic burden in older adults with intellectual disability; relationships with multimorbidity and adverse effects

Background: Anticholinergic medications may be associated with adverse clinical outcomes, including acute impairments in cognition and anticholinergic side effects, the risk of adverse outcomes increasing with increasing anticholinergic exposure. Older people with intellectual disability may be at increased risk of exposure to anticholinergic medicines due to their higher prevalence of comorbidities. We sought to determine anticholinergic burden in ageing people with intellectual disability. Methods: Medication data (self-report/proxy-report) was drawn from Wave 1 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA), a study on the ageing of 753nationally representative people with an IDC40 years randomly selected from the National Intellectual Disability Database. Each individual’s cumulative exposure to anticholinergic medications was calculated using the Anticholinergic Cognitive Burden Scale (ACB) amended by a multi-disciplinary group with independent advice to account for the range of medicines in use in this population. Results: Overall, 70.1 % (527) reported taking medications with possible or definite anticholinergic properties (ACBC1), with a mean (±SD) ACB score of 4.5 (±3.0) (maximum 16). Of those reporting anticholinergic exposure (n=527), 41.3 % (217) reported an ACB score o fC5. Antipsychotics accounted for 36.4 % of the total cumulative ACB score followed by anticholinergics (16 %) and antidepressants (10.8 %). The most frequently reported medicine with anticholinergic activity was carbamazepine 16.8 % (127). The most frequently reported medicine with high anticholinergic activity (ACB 3) was olanzapine13.4 % (101). There was a significant association between higher anti-cholinergic exposure and multimorbidity, particularly mental health morbidity, and some anticholinergic adverse effects such as constipation and day-time drowsiness but not self-rated health. Conclusion: Using simple cumulative measures proved an effective means to capture total burden and helped establish that anticholinergic exposure in the study population was high. The finding highlights the need for comprehensive reviews of medications.

Factors associated with high anticholinergic burden in aging adults with intellectual disabilities:a cross-sectional study

Background: Anticholinergic (AC) medications are associated with cognitive and functional decline in older people, with risk of adverse outcomes increasing with increasing AC exposure. Older people with intellectual disabilities are at increased risk of high AC exposure owing to higher prevalence of multimorbidity, particularly psychiatric morbidities. Objectives: The aims of this study were to determine individual’s AC exposure using the AC cognitive burden (ACB) scale, identify therapeutic classes contributing to burden and determine clinical and demographic factors associated with two levels of AC exposure (ACB score 1–4, ACB 5+). Methods: Cross-sectional (self-report/proxy report)medication data were drawn from Wave 1 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing, a study on ageing of 753nationally representative people with ID aged over40 randomly selected from the National Intellectual Disability Database. Medication data were available for 736 (98%). Each individual’s cumulative AC exposure was calculated using the ACB. Multinomiallogistic regression was performed identifying clinical and demographic factors associated with ACB score1–4, and ACB 5+. Results: In the eligible population of 736 participants(mean (±SD) age 54.1 (±8.8) years,55% female), 522(70.9%) were exposed to an ACB medicine (ACB 1+); 214 (29%) had an ACB score of 5+; mean total ACB score= 4.5 (±3.0). Antipsychotics accounted for35.6% of the cumulative ACB score. Age over 65yearswas associated with increased likelihood of both levels of AC exposure (ACB 1–4—adjusted OR 3.28; 95%CI 1.49–7.25, ACB 5+—adjusted OR 3.08; 95%CI1.21–7.63) and having a mental health condition(ACB 1–4—adjusted OR 9.79; 95%CI 5.63–17.02, ACB 5+—adjusted OR 23.74; 95%CI 12.29–45.83). Conclusions: Using a simple cumulative measure proved an effective means to capture total burden and established that AC exposure was high and associated with older age and mental health morbidity. This highlights need for comprehensive medication reviews for older people with intellectual disabilities.