End -of -life planning and decision -making: Implications for adults with mental retardation

This research focused on the topic of end-of-life planning and decision-making for adults affected by mental retardation. Adults with mental retardation have unique challenges in this regard, including difficulty communicating their wishes without assistance and diminished decision-making skills. The primary research objective was to identify factors that can affect opportunities for adults with mental retardation in community-based services settings (and their advocates) to be involved in planning and deciding about their own end-of-life experience. ^ A descriptive qualitative inquiry was designed to explore issues related to death and dying, and the notion of end-of-life planning, from the perspective of adults with mental retardation who receive publicly-funded community services ("clients") and family members of individuals who receive such services. Study participants were recruited from a single mental retardation service provider in a large urban setting (the "Agency"). Sixteen clients and 14 families of Agency clients took part. Client data collection was accomplished through face-to-face interviews, focus group meetings, and record reviews; family members were involved in a face-to-face interview only. ^ An initial coding scheme was developed based upon literature and policy reviews, and themes related to the research questions. Analysis involved extracting data from transcripts and records and placing it into appropriate thematic categories, building support for each theme with the accumulated data. Coding themes were modified to accommodate new data when it challenged existing themes. ^ Findings suggest that adults with mental retardation do have the requisite knowledge, interest, and ability to participate in decisions about their end-of-life experience and handling of affairs. Siblings are overwhelmingly the chosen future surrogates and they (or their children) will likely be the end-of-life advocates for their brothers and sisters affected by mental retardation. Findings further point to a need for increased awareness, accurate information, and improved communication about end-of-life issues, both in general and particular to adults affected by mental retardation. Also suggested by the findings is a need to focus on creating accommodations and adaptations that can best uncover a person's authentic views on life and death and related end-of-life preferences. Practical implications and suggestions for further research are also discussed. ^

Assessment of behavior problems in persons with mental retardation living in the community : report on a workshop, September 9, 1988 /

Mode of access: Internet.

Mental retardation : plans for the future : public awareness, prevention, family and community service, systems simplification, full citizenship, international activities.

"15th annual report of the President's Committee on Mental Retardation."--T.P. verso.

Mental retardation : prevention strategies that work /

"Twelfth annual report"--Prelim. p.

Assessment of the national effort to combat mental retardation from biomedical causes : conference proceedings, November 14-16, 1983, Washington, D.C.

Item 529-B-8

Challenges faced by general practitioners and allied mental health services in providing mental health services in rural Queensland

Objective: To examine the views of rural practitioners concerning issues and challenges in mental health service delivery and possible solutions. Design: A qualitative study using individual semi-structured interviews. Setting: Eight general practices from eight rural Queensland towns, three rural mental health services and two non-government organisations, with interviews being conducted before recent changes in government-subsidised access to allied health practitioners. Participants: A sample of 37 GPs, 19 Queensland Health mental health staff and 18 participants from community organisations. Main outcome measures: Analysis of qualitative themes from questions about the key mental health issues facing the town, bow they might be addressed and what challenges would be faced in addressing them. Results: There was substantial consensus that there are significant problems with inter-service communication and liaison, and that improved collaboration and shared care will form a critical part of any effective solution. Differences between groups reflected differing organisational contexts and priorities, and limitations to the understanding each had of the challenges that other groups were facing. C onclusions: Improvements to mental health staffing and to access to allied health might increase the ability of GPs to meet the needs of less complex patients, but specific strategies to promote better integrated services are required to address the needs of rural and regional patients with complex mental health problems. The current study provides a baseline against which effects of recent initiatives to improve mental health care can be assessed.

Challenges in implementing evidence-based practice into mental health services

This paper highlights challenges in implementing mental health policy at a service delivery level. It describes an attempt to foster greater application of recovery-orientated principles and practices within mental health services. Notwithstanding a highly supportive policy environment, strong support from service administrators, and an enthusiastic staff response to training, application of the training and support tools was weaker than anticipated. This paper evaluates the dissemination trial against key elements to promote sustained adoption of innovations. Organisational and procedural changes are required before mental health policies are systematically implemented in practice.

The Large Allen Cognitive Level Screen as an indicator for medication adherence among adults accessing community mental health services

Background: Medication remains the cornerstone treatment for mental illness. Cognition is one of the strongest predictors of non-adherence. The aim of this preliminary investigation was to examine the association between the Large Allen Cognitive Level Screen (LACLS) and medication adherence among a small sample of mental health service users to determine whether the LACLS has potential as a screening tool for capacity to manage medication regimens. Method: Demographic and clinical information was collected from a small sample of people who had recently accessed community mental health services. Participants then completed the LACLS and the Medication Adherence Rating Scale (MARS) at a single time point. The strength of association between the LACLS and MARS was examined using Spearman rank-order correlation. Results: A strong positive correlation between the LACLS and medication adherence (r = 0.71, p = 0.01) was evident. No participants reported the use of medication aids despite evidence of impaired cognitive functioning. Conclusion: This investigation has provided the first empirical evidence indicating that the LACLS may have utility as a screening instrument for capacity to manage medication adherence among this population. While promising, this finding should be interpreted with caveats given its preliminary nature.

Implementing cognitive remediation therapy : lessons from two public mental health services

Objective: Neurocognitive deficits are a core symptom domain of schizophrenia, occurring in 75 -90 % of people with this diagnosis and influencing long term functional outcomes. This article aims to describe the pilot implementation of cognitive remediation therapy (CRT) in two large public mental health services and detail changes made to the delivery of this therapy after this trial. Conclusions: CRT provides an evidence based approach to targeting cognitive deficits but the translation of this therapy from a research setting to clinical practice has not been well evaluated.

The reduced expression of the HADH2 protein causes X-linked mental retardation, choreoathetosis, and abnormal behavior

Recently, we defined a new syndromic form of X-linked mental retardation in a 4-generation family with a unique clinical phenotype characterized by mild mental retardation, choreoathetosis, and abnormal behavior (MRXS10). Linkage analysis in this family revealed a candidate region of 13.4 Mb between markers DXS1201 and DXS991 on Xp11; therefore, mutation analysis was performed by direct sequencing in most of the 135 annotated genes located in the region. The gene (HADH2) encoding L-3-hydroxyacyl-CoA dehydrogenase II displayed a sequence alteration (c.574 C-->A; p.R192R) in all patients and carrier females that was absent in unaffected male family members and could not be found in 2,500 control X chromosomes, including in those of 500 healthy males. The silent C-->A substitution is located in exon 5 and was shown by western blot to reduce the amount of HADH2 protein by 60%-70% in the patient. Quantitative in vivo and in vitro expression studies revealed a ratio of splicing transcript amounts different from those normally seen in controls. Apparently, the reduced expression of the wild-type fragment, which results in the decreased protein expression, rather than the increased amount of aberrant splicing fragments of the HADH2 gene, is pathogenic. Our data therefore strongly suggest that reduced expression of the HADH2 protein causes MRXS10, a phenotype different from that caused by 2-methyl-3-hydroxybutyryl-CoA dehydrogenase deficiency, which is a neurodegenerative disorder caused by missense mutations in this multifunctional protein.

Addressing barriers to help-seeking behaviour through M-mental health services : a social marketing perspective

Although seeking help for mental ill-health is beneficial, the majority of persons afflicted do not access available help services. Young adults (16-24 years old) in particular have the highest prevalence of mental health problems and the lowest rate of help-seeking behaviour. Key barriers to help-seeking for young adults, including cost, privacy concerns, inconvenience, access to health professionals and interpersonal interaction, appear to derive from the face-to-face method of service delivery traditionally used to distribute mental health services. Social marketing employs the principle of value exchange, whereby consumers will choose a behaviour in exchange for receiving valued benefits and/or a reduction in key barriers, to achieve behavioural goals for social good. The appropriation of mobile digital technology to deliver self-help mental health services may reduce the current barriers to help seeking, however, extant literature offers no empirical support for this proposition. Our research addresses this gap by examining the perceptions of young adults regarding M-mental health services. Depth interviews were undertaken with 15 young adults (18-24 years old), who had self-reported mild-moderate stress, anxiety or depression. The data were thematically analysed with the assistance of Nvivo. The findings reveal M-mental health services reduce the barriers to accessing face-to-face help services to a large extent. However, they also present their own barriers to help-seeking that must be considered by social marketers, including negligible cost expectations and service efficacy concerns. Overall, this study highlights the potential of M-mental health services to encourage early intervention and help-seeking behaviour as part of a social marketing strategy to address mental illness in young adults.