Julia Shearn

Family Dilemmas and Secrets: Parents' disclosure of information to their adult offspring with learning disabilities

This paper describes the role parents play in providing knowledge of learning disability to their adult offspring with learning disabilities. Data were derived from an in-depth qualitative study of the nature of parent-adult-offspring co-residence. The findings reveal that while parents recognised and had to deal with the stigma learning disability exerted in their own lives, they had taken steps to prevent their adult offspring from having to deal with similar difficulties. It is argued that it remains the case that learning disability is treated as a stigmatised identity and as such is rendered invisible through the strategic control of information. However, findings point towards the conclusion that there has been a cultural reversal in how this process is managed.

Careers in caring: the changing situations of parents caring for an offspring with learning difficulties

Drawing on information from a survey sample of individuals with learning difficulties aged ≥5 years in 4 districts in Wales, data are presented on the ages of parents and offspring, household composition, the level of dependency of offspring, expectations of progress towards independence and the levels of service and informal support received by individuals or families. Most people with learning difficulties living in the family home were adults, although the proportion decreased with age. Transition from the family home was particularly related to certain age groups and to the presence of a single parent rather than two. Primary carers were predominantly mothers. Parental ages ranged from 75 years, on average differing from that of the offspring with learning difficulties by about 30 years. Single parent households became more common with increasing age, although these were also relatively frequent among the youngest age group, and there was a steady movement out of the home of siblings. Individuals tended to increase skills with time and the adults in family homes were significantly less dependent than the children. However, parents of children had greater optimism for continued progress in areas where offspring were not fully independent than did those of adults. Service support was more available to families of younger than older adults and the level of service planning for individuals aged 2S years or over was severely deficient. The results illustrate the variability in circumstance of family members as they grow older. A much more close understanding is required of how families age, how the relationships between members change and how the needs and ambitions of the family evolve, both individually and collectively, for service support to be matched to family circumstance.

The Depression in Visual Impairment Trial (DEPVIT): trial design and protocol

BackgroundThe prevalence of depression in people with a visual disability is high but screening for depression and referral for treatment is not yet an integral part of visual rehabilitation service provision. One reason for this may be that there is no good evidence about the effectiveness of treatments in this patient group. This study is the first to evaluate the effect of depression treatments on people with a visual impairment and co morbid depression.Methods /designThe study is an exploratory, multicentre, individually randomised waiting list controlled trial. Participants will be randomised to receive Problem Solving Therapy (PST), a ‘referral to the GP’ requesting treatment according to the NICE’s ‘stepped care’ recommendations or the waiting list arm of the trial. The primary outcome measure is change (from randomisation) in depressive symptoms as measured by the Beck’s Depression Inventory (BDI-II) at 6 months. Secondary outcomes include change in depressive symptoms at 3 months, change in visual function as measured with the near vision subscale of the VFQ-48 and 7 item NEI-VFQ at 3 and 6 months, change in generic health related quality of life (EQ5D), the costs associated with PST, estimates of incremental cost effectiveness, and recruitment rate estimation.DiscussionDepression is prevalent in people with disabling visual impairment. This exploratory study will establish depression screening and referral for treatment in visual rehabilitation clinics in the UK. It will be the first to explore the efficacy of PST and the effectiveness of NICE’s ‘stepped care’ approach to the treatment of depression in people with a visual impairment.Trial registrationISRCTN46824140

High Prevalence of Untreated Depression in Patients Accessing Low-Vision Services

News about untreatable sight loss is devastating. Clinicians have an important role to play in determining when and how information is provided, gauging how effectively patients are likely to cope, and recognizing when someone needs to access treatment for their psychological distress. It is true that some resilient individuals are able to adjust, eventually, to their new situation, but many others find the myriad of practical problems associated with sight loss and worry about the future overwhelming, their psychological wellbeing suffers, and many sink into chronic depression. Depression is common in those with a visual impairment and particularly so in those seeking help at low vision rehabilitation clinics, but just how prevalent is it and are people getting the help they need? Large-scale epidemiologic studies indicate that about 13% of people with a visual impairment have significant depressive symptoms, about 3 times greater than in the general population. In those accessing low vision rehabilitation clinics the prevalence is known to be higher at about 30%. However, these estimates should be treated with caution. Small sample sizes and volunteers rather than consecutive attendees may underestimate the scale of the problem because people with depression are less likely to volunteer. The data in this report are from the Depression in Visual Impairment Trial (DEPVIT), a multicenter, randomized controlled trial that screened >1000 consecutive attendees at low vision rehabilitation clinics in Britain (ISRCTN46824140). Two important aims of the study were to estimate the prevalence of significant depressive symptoms in consecutive attendees at National Health Service (NHS) funded low vision rehabilitation services in Britain and to identify the proportion currently accessing treatments for depression. Participants were consecutive adult patients attending 1 of 16 low vision rehabilitation services in Britain between November 2011 and March 2014. Fourteen of the services were provided in a primary care setting in Wales and the others were hospital-based services in London. All of the clinics gave a routine preassessment survey to all patients before their clinic visit. The survey included the Geriatric Depression Scale (GDS-15) to quantify depressive symptoms, a short version of the National Eye Institute Visual Function Questionnaire (7-item NEI-VFQ) and a single question from the Short Form Health Survey to assess overall health. To ensure that data collection was standardized across centers, clinicians attended a 1-day training event to improve their understanding of depression and all study procedures. For those who consented, information on date of birth, gender, ethnicity, medical illness, time since vision loss first identified, primary ocular diagnosis, corrected Early Treatment Diabetic Retinopathy Study logarithm of the minimum angle of resolution acuity and threshold reading ability (Bailey-Lovie Word Reading Chart) was recorded at the clinic. In line with the large-scale Medical Research Council assessment of older adults study, we adopted the relatively conservative cutoff score of !6 on the GDS-15 to identify those with significant depressive symptoms. People who screened positive for depressive symptoms were also asked if they were receiving treatment for their low mood. Data were analyzed on STATA Ver 12. The prevalence of depressive symptoms together with 95% CIs was computed by the exact binomial method. Ethical approval was obtained from the NHS National Research Ethics Service (11/WA/0014). During the 30-month recruitment period, a total of 1323 consecutive adult patients attended the low vision rehabilitation clinics. Of these, consenting patients 1008 (76.2%) provided complete datasets. The mean (SD) age of consenting patients was 74.4 (16.1) years, 61.7% were women, and 52.8% had a diagnosis of age-related macular degeneration. Overall, the prevalence of significant depressive symptoms, as measured by a GDS-15 score of!6, was 43% (95% CI, 40%e46%). And, of those who screened positive for significant depressive symptoms, 74.8% (95% CI, 79.2%e70.7%) were not being treated for their depression. Table 1 (available at www.aaojournal.org) describes the prevalence of significant depressive symptoms according to study location and patient characteristics. Interestingly, a regression analysis indicated that the prevalence of significant depressive symptoms was not related to visual acuity or to the time since sight loss was first identified. Figure 1 describes the prevalence of significant depressive symptoms as a function of time since the onset of sight loss and it seems that depression does not resolve over time. However, because this was a cross-sectional study, we cannot rule out the possible effects of time. The prevalence of clinically significant depressive symptoms in 43% of those seeking help for sight loss in Britain is striking. To put the findings into perspective, 45% of those with a diagnosis of cancer who are about to undergo chemotherapy have clinically significant depressive features. Clearly, people seeking help for their visual problems are a high-risk group for depression, but the fact that three-quarters of those who screened positive were not receiving any form of treatment suggests that depression is being routinely overlooked in this vulnerable group. We are only aware of 2 low vision services in Britain that screen people regularly for depression. People are not getting the help they need. Addressing a patient’s needs should include more than improving their acuity or other aspect of visual function. Depression is a major cause of disability in its own right; it reduces the effectiveness of low vision rehabilitation interventions, quality of life, and even life expectancy. Depression is a medical condition, treatments can be effective, and screening is relatively straightforward. In Britain, the National Institute for Health and Clinical Excellence (NICE) recommend screening high risk groups by Ophthalmology Volume 123, Number 2, February 2016

Depression in Visual Impairment Trial (DEPVIT): A Randomized Clinical Trial of Depression Treatments in People With Low Vision

PURPOSE The purpose of this study was to compare two interventions for depression, problem solving treatment (PST) and referral to the patients physician, with a waiting-list control group in people with sight loss and depressive symptoms. METHODS This was an assessor-masked, exploratory, multicenter, randomized clinical trial, with concurrent economic analysis. Of 1008 consecutive attendees at 14 low-vision rehabilitation centers in Britain, 43% (n = 430) screened positive for depressive symptoms on the Geriatric Depression Scale and 85 of these attendees participated in the trial. Eligible participants were randomized in the ratio 1:1:1 to PST, referral to their physician, or a waiting-list control arm. PST is a manualized talking intervention delivered by a trained therapist who teaches people over six to eight sessions to implement a seven-step method for solving their problems. Referral to the physician involved sending a referral letter to the persons physician, encouraging him or her to consider treatment according to the stepped care protocol recommended by the U.K.s National Institute of Health and Care Excellence. The primary outcome was change in depressive symptoms (6 months after baseline) as determined by the Beck Depression Inventory. RESULTS At 6 months, Beck Depression Inventory scores reduced by 1.05 (SD 8.85), 2.11 (SD 7.60), and 2.68 (SD 7.93) in the waiting-list control, referral, and PST arms, respectively. The cost per patient of the PST intervention was £1176 in Wales and £1296 in London. CONCLUSIONS Depressive symptoms improved most in the PST group and least in the control group. However, the change was small and the uncertainty of the measurements relatively large.

Nursing care at end of life: a UK-based survey of the deaths of people living in care settings for people with intellectual disability:

Background People with intellectual disability are believed to be at risk of receiving poor end-of-life care. Nurses, given their advocacy role and duty to provide compassionate end-of-life care, have the potential to change this situation but research regarding this aspect of their role is limited. Aims This paper thus seeks to answer the question ‘How and when are nurses involved in providing care at end of life for people with intellectual disability?’ Methods A total of 38 intellectual disability care providers in the UK providing support to 13,568 people with intellectual disability were surveyed. Data regarding 247 deaths within this population were gathered in two stages and subsequently entered into SPSSX for analysis. Results Findings revealed that the majority of deaths occurred between the ages of 50 and 69 years, the most commonly reported cause of death being respiratory problems. Both community and hospital-based nurses were involved in supporting individuals during their final 3 months of life, and sometimes more than one type of nurse provided support to individuals. Generally nursing care was rated positively, although room for improvement was also identified. Conclusions Nurses are involved in supporting people with intellectual disability at end of life and appropriate education is required to undertake this role. This may require change in curricula and subsequent research to determine the impact of such change on nursing support to this population.