Philip Dodd

A study of complicated grief symptoms in people with intellectual disabilities

INTRODUCTION Previous studies have shown a significant association between familial bereavement and the onset of challenging behaviours and psychopathology in people with intellectual disabilities (ID). However, little work has been done to accurately describe the specific symptoms of grief, in particular symptoms of complicated grief in this population. Consensus criteria for the diagnosis of complicated grief have been drawn up and tested for validity in the general population. AIMS To examine the occurrence of symptoms of complicated grief, and to explore the relationships between complicated grief and bereavement experience. METHOD A bereavement history questionnaire and a newly developed measure examining for symptoms of complicated grief were administered to a group of carers of people with mild or moderate ID, who had experienced a parental bereavement within the previous 2 years. The questionnaires were also administered to a matched comparison group, who had not been bereaved. RESULTS/CONCLUSIONS This carer-based comparison study has revealed that bereaved individuals with ID experience complicated grief symptoms following the death of a parent, with one-third of the bereaved group experiencing 10 or more clinically apparent symptoms. In addition, complicated grief symptoms were more likely to occur with higher rates of bereavement ritual involvement. These findings have both clinical and research implications.

An exploration of the experience, confidence and attitudes of staff to the provision of palliative care to people with intellectual disabilities.

Research suggests that shortcomings exist in the provision of palliative care to people with intellectual disabilities. This mixed-methods study aimed to describe the experience, confidence and attitudes of staff to the provision of palliative care to people with intellectual disabilities. The sample was drawn from the population of one Health Service Executive area in Ireland. Staff from intellectual disability and palliative care services completed surveys and participated in focus group discussions. Three hundred and eighty-nine questionnaires were distributed and 16 focus groups were held. Fifty-nine per cent of palliative care staff and 67% of intellectual disability services staff had cared for someone with intellectual disability who had died but level of experience was low. Both palliative care and intellectual disability services staff lacked confidence in their ability to provide palliative care. Staff were challenged by perceived ‘differences’ and ‘difficulties’ in the provision of care. They endorsed a partnership approach to care but focus group discussions revealed that a shared desire to cooperate was insufficient to guarantee effective collaboration.

An initial assessment of the psychometric properties of the Complicated Grief Questionnaire for People with Intellectual Disabilities (CGQ-ID)

Given the research evidence that people with intellectual disability (ID) do grieve following bereavement, the present study aimed to describe and gather preliminary psychometric data for a version of the Inventory of Complicated Grief [Prigerson, H. G., Maciejewski, P. K., Reynolds, C. F., Bierhals, A. J., Newsom, J. T., Fasiczka, A., et al. (1995). Inventory of Complicated Grief: A scale to measure maladaptive symptoms of loss. Psychiatry Research, 59, 65-79] adapted for use with this population. Carers completed the Complicated Grief Questionnaire for People with ID (CGQ-ID) for 76 individuals with ID, half of whom had experienced a parental bereavement within the last 2 years. The final scale and subscales (Separation Distress and Traumatic Grief) showed very good internal and inter-rater reliability and distinguished between the two groups. While the findings suggest that the CGQ-ID is suitable for identifying complicated grief-type symptoms among adults with ID, further research must be conducted to ascertain whether the findings can be replicated.

Grief and bereavement in people with intellectual disabilities.

Purpose of review The aim of this article is to present and synthesize recent research on grief and bereavement in people with intellectual disabilities, incorporating relevant studies with the general population. Recent findings Work in the general population is currently focusing on achieving greater clarity in our understanding of typical and atypical reactions to grief. Although much of this research is relevant to people with intellectual disabilities, this group also presents unique challenges. These include variation in understanding of death, a continuum of grief reactions including pathological or complicated grief, and additional demands faced by professional carers and staff working in this area. However, the research activity is somewhat limited in that it has relied on small-scale studies. Summary The possible recognition of prolonged grief disorder as a distinct clinical entity will have a significant impact on research and intervention of people with pathological or complicated grief. To date, no prospective study of grief and bereavement has been conducted among people with intellectual disabilities. This is essential to best understand the course of grief and complicated grief in people with intellectual disabilities and minimize the levels of functional impairment.

An audit of the Irish National Intellectual Disability Database.

This study describes a national data audit of the National Intellectual Disability Database (NIDD). The NIDD is a national information system for intellectual disability (ID) for Ireland. The purpose of this audit was to assess the overall accuracy of information contained on the NIDD, as well as collecting qualitative information to support the improvement in the quality of data contained on the NIDD. A nationally representative sample was generated from the NIDD. Twenty-five auditors were recruited from senior staff within statutory and voluntary intellectual disability services and trained by the authors. They carried out 250 clinical interviews with individuals with ID, their families and/or paid carers, using structured questionnaires. The data collected were analysed using frequency analyses and compared with the existing NIDD data set to assess accuracy. Qualitative information was also collected. Overall, the results from the audit indicate that almost three quarters (72.2%) of all the data recorded on the NIDD are accurate, with 19.3% inaccurate, and 8.5% of the sought audit data not returned. The audit found that the NIDD significantly overestimated the need for enhanced residential care services. The study highlights the need for clinician and service user involvement in specialist service data collection, in order to both conduct valid research and to best plan for ID service development.

A systematic review of suicidality in people with intellectual disabilities

BackgroundSuicidality in people with intellectual disability has not been extensively researched. AimTo identify the nature of the research that has actually been conducted on this topic. MethodA search of research databases was conducted according to predefined criteria. Key information was extracted and rated for methodological merit. ResultsTwenty-four studies met the inclusion criteria for this systematic review. The aspects of suicidality investigated, which varied among studies, included suicidal attempts, behavior, ideation, and completed suicide. Thirteen studies highlighted risk factors for suicidality in this population. The most frequently noted risk factors were a concurrent mental health difficulty and the level of intellectual disability. Eight studies referred to people with intellectual disabilities’ understanding of the concept of death or suicide. Various methodological issues were identified in the studies included. ConclusionsIn what we believe to be first systematic review of suicidality in people with intellectual disabilities, it was apparent that well-designed, standardized research studies on the topic are scarce. There is consequently limited evidence to guide prevention and intervention strategies for suicidality in this population.

Complicated grief: Knowledge, attitudes, skills and training of mental health professionals: A systematic review

OBJECTIVE A systematic review and qualitative synthesis was undertaken to deduce the knowledge, attitudes, skills and training of mental health professionals regarding complicated grief (CG). METHODS PsychInfo, Embase, Medline, CINAHL, PBSC, Web of Science and ERIC databases were used to identify relevant literature. Searches were executed from inception to September 2014. RESULTS The electronic search yielded 305 results. Forty-one papers were selected for full text review, 20 were included for analysis. 6 examined primary data, the remaining 14 being reviews, opinion or guideline pieces. CONCLUSIONS Despite the lack of consensus on terminology, criteria and diagnosis, it appears that there is more than sufficient agreement within the CG research community regarding the knowledge and skills required to assist someone presenting with CG. A palpable fear of medicalising grief exists, but this would seem to be based on a conflation of normal grief and CG. This review highlights the mainly unidirectional nature of current research, the voice of the practitioner being largely unheard. A need for and an interest in training in CG was expressed. PRACTICE IMPLICATIONS There is an urgent need to translate research findings into clinical practice. Training must take account of attitudinal barriers to implementation, balancing evidence and stories.

Comparing Traditional-Residential, Personalised Residential and Personalised Non-Residential respite services: Quality of life findings from an Irish population with mild-moderate intellectual disabilities

Background: Respite care is an essential support for people with intellectual disabilities and their families; however, there is limited evidence examining different models of respite care. The present research examined quality of life among adults with intellectual disabilities using three different models of respite services in Ireland. Method: A quasi-experimental research method was adopted, which sought to determine differences in quality of life across the three respite care groups using two measures, 1) a self-reported quality of life scale and 2) a quality of life questionnaire filled out by a keyworker. Participants were people with mild/moderate intellectual disabilities (n = 82) and their keyworkers (n = 81). Results: Three distinct models of respite services were assessed: (a) TraditionalResidential respite; (b) Personalised Residential respite, and (c) Personalised NonResidential respite. No differences emerged between the groups on selfreported quality of life; however, the groups differed on a proxy measure of quality of life with respect to Rights, emotional wellbeing, personal development and interpersonal

The challenges of diagnosis and treatment of dementia in Down’s syndrome

OBJECTIVES People with Down syndrome (DS) are at high risk for developing dementia and early diagnosis is vital in enhancing quality of life. Our aim was to compare our practice to consensus recommendations on evaluation, diagnosis and pharmacological treatment of individuals with DS who develop dementia. We also aimed to establish the average time taken to make a diagnosis of dementia and to commence pharmacotherapy, and to assess tolerability to acetylcholinesterase inhibitors. METHODS Retrospective chart review in an exhaustive sample containing all current service users attending our service with DS and a diagnosis of dementia (n=20). RESULTS The sample was 75% female and 70% had a moderate intellectual disability. The average age at diagnosis of dementia was 52.42 years old. The average time to diagnosis from first symptom was 1.13 years and the average time to commence pharmacotherapy was 0.23 years. A total of 17 patients commenced on acetylcholinesterase inhibitors, and of these seven discontinued medication due to side-effects or lack of efficacy. CONCLUSIONS The results on anticholinesterases add to the limited pool of data on treatment of dementia in DS. There was an identified need to improve the rates of medical, vision and hearing assessments, and prospective screening. Deficiencies in screening and diagnosis may be addressed by implementing a standardised dementia assessment pathway to include prospective screening and longitudinal assessment using easily administered scales. We highlight the importance of improving the diagnostic process, as a vital window of opportunity to commence a comprehensive care plan may be lost.

Assessing metabolic syndrome in people with ID (intellectual disabilities) on antipsychotic medication

Aims To identify whether clinical information routinely collected and recorded on clinical files is available for the identification of metabolic syndrome and to assess the prevalence of risk factors for the syndrome in a sample of people with intellectual disabilities (ID) and mental illness treated with antipsychotic medication. METHODS A retrospective analysis was performed for 76 adults with ID and comorbid mental illness, for whom treatment with antipsychotic medication was established. Statistical analysis was performed using SPSS 16.0. The Student t-test for parametric data and χ 2-test for non-parametrical data were used. RESULTS Five of the six criteria for metabolic syndrome were available in all or a high proportion of the files, however no measurement for waist circumference was recorded in any of the files. Aripiprazole appears to be the least risky antipsychotic for metabolic syndrome. CONCLUSION It is important to develop a systematic protocol to record diagnostic variables for metabolic syndrome in at risk populations such as those with ID and mental illness treated with regular antipsychotics.