Hidden lives and deaths: the last months of life of people with intellectual disabilities living in long-term, generic care settings in the UK.

Rationale: This paper concerns mortality and needs for end-of-life care in a population of adults with ID living in generic care homes.

Methods: Various sampling strategies were used to identify a difficult to find a population of people with ID in generic care homes. Demographic and health data were obtained for 132 people with ID.

Expecting the unexpected: measures, outcomes and dying trajectories for expected and unexpected death in adults with intellectual disabilities in social care settings in the UK.

Background: Considerable attention is rightly paid to preventable deaths in adults with intellectual disabilities. The pattern of these deaths and the implications for services have been less considered.

Method: This paper forms part of a larger cross-sectional study of deaths in a defined population of adults with intellectual disabilities.

"They just get it" an exploration of father's experiences and perceptions of a support group for men caring for children with disabilities and/or developmental delay.

Background: Support groups available to parents/carers of children with a disability or developmental delay (DDD) are predominately attended by women. Limited data exists reporting experiences of the few male-only support groups. This paper examines experiences of fathers of children with DDD attending a male-only support group from South Wales.

Last months of life of people with intellectual disabilities: A UK population-based study of death and dying in intellectual disability community services.

Background: Population-based data are presented on the nature of dying in intellectual disability services.

Methods: A retrospective survey was conducted over 18 months with a sample of UK-based intellectual disability service providers that supported over 12,000. Core data were obtained for 222 deaths within this population.

Place of death of people with intellectual disabilities: An exploratory study of death and dying within community disability service settings.

This article describes an exploratory study of deaths of people with intellectual disabilities (IDs) that had occurred in group homes managed by an ID service provider in Australasia. Such settings are increasingly recognised as places for both living and dying. Little is known about the extent to which they encounter the death of a person with ID and with what outcomes.

End-of-life care in intellectual disability: a retrospective cross-sectional study.

Background: Adults with intellectual disability (ID) experience inequality in access to healthcare that is considered to extend to end-of-life care. Their experiences of healthcare at the end of life and how these compare with the general population are unknown.

Aim: To describe the end-of-life care outcomes for adults with ID living in residential care in the UK using the VOICES-SF questionnaire and compare these with the general population.

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.

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 patient's 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.

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

Background: The 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.