Cancer information needs of people with intellectual disability: A review of the literature

The lifespan of people with an intellectual disability has increased significantly in recent years; however, this has resulted in a rising incidence of age-related illnesses including cancer. The World Health Organisation has expressed concern as evidence suggests prevalence rates for cancer are increasing for this group. The needs of people with a cancer diagnosis and an intellectual disability are beginning to be highlighted; however, there appears to be a substantial dearth of services including appropriate cancer information. This presents alarming obstacles and barriers to high-quality cancer care impacting on treatment, management and overall survival rates for this client group. Furthermore, a number of policy and research reports directed at the health needs of people with an intellectual disability have continually highlighted the need for accessible information and effective communication. Having access to cancer information should be considered a crucial part of providing optimum holistic care for this client group. Cancer professionals should assess the unique information needs of people with an intellectual disability as mainstream information does not meet their requirements. Furthermore, health professionals working in intellectual disability settings must also address their knowledge and information deficits in this regard. This paper presents a review of the literature with a specific focus on the cancer information needs of people with an intellectual disability.     

Effectiveness of multidisciplinary interventions to improve the quality of life for people with Parkinson's disease: A systematic review

Aims

To conduct a systematic review and critically evaluate the literature on the effectiveness of multidisciplinary interventions to improve quality of life for people with Parkinson's disease.

Methods

An electronic search of the following publication databases was performed for records from 1995 to 2011: CINAHL PLUS (EBSCO), Joanna Briggs Institute, Pubmed, Web of Science (ISI), psycINFO, Scopus and Cochrane library. The keywords used were Parkinson's disease, nursing, allied health, doctor, intervention, quality of life, rehabilitation, multidisciplinary team and their various combinations. Key terms were matched to MeSH subject headings and exploded where relevant to include all subheadings and related terms to each key term used. 1808 articles were initially identified based on our selection criteria and the reference list of these articles was hand searched. Nine studies were included after this sifting process and critiqued by two reviewers.

Results

Three randomised controlled trials and 6 non-randomised cohort studies were included. For these studies the level of evidence ranged from the Scottish Intercollegiate Network (SIGN) level of 1- to 2-. The outcome measures assessed were heterogeneous, including measures of disability of disease, stage of disease and various quality of life measures.

Conclusion

The evidence quantifying positive and sustained effects of multidisciplinary interventions to improve quality of life for people with Parkinson's disease is inconclusive. There has been relative lack of controlled experimentation to quantify therapy outcomes. The studies reviewed were varied and lacked long-term follow-up to quantify retention of the intervention. It is recommended that interventions to improve quality of life are tested in randomised controlled trials using standardised outcome measures, adequately powered samples and longer follow-up periods to assess intervention sustainability.     

Medical Certificates of Cause of Death for people with intellectual disabilities: A systematic literature review

Background

Mortality studies can help reduce health inequalities by informing public policy through a better understanding of causes of death and comorbidities. Mortality studies often rely on Medical Certificates of Cause of Death (MCCD) for data.

Method

A systematic review was undertaken to identify the extent and nature of issues in recording causes of death for people with intellectual disability on MCCD.

Results

Fifteen of the 25 articles included in the literature review raised concerns about the accuracy of MCCD in identifying the cause(s) of death of people with intellectual disability. The most frequent issues were the under‐reporting of intellectual disability on MCCD, and listing intellectual disability or an associated condition as an underlying cause of death.

Conclusions

Concerns about the accuracy and reliability of MCCD for people with intellectual disability raise questions about mortality data based on MCCD. Clear guidance is required from WHO for those completing MCCD for people with intellectual disability.     

Effect of aromatherapy on sleep quality of adults and elderly people: A systematic literature review and meta-analysis

PurposeThe purpose of this study was to characterize studies on aromatherapy and sleep quality and to identify the measurable effects of aromatherapy on the sleep quality of adults and elderly people.MethodsWe searched eight electronic databases for relevant studies published between January 2011 and December 2019 using the medical subheadings, “adult or elderly,” “aromatherapy or aroma intervention,” and “sleep quality or sleep satisfaction.” Statistical analyses of the combined effect sizes, homogeneity, heterogeneity, and trim-and-fill method were performed using MIX 2.0 Pro.ResultsBased on the combined results of the 30 included studies, the overall effect size of sleep quality was 0.74, which was statistically significant. A subgroup analysis was performed to assess the overall improvement in sleep quality based on country, study design, and type of intervention: the effect size of aromatherapy in East Asia, quasi-experimental studies, and aroma massage therapy studies was 1.02, 1.24, and 1.30, respectively, with higher sleep quality in each subgroup. The effect size was 0.86 and 0.80 for ≤12 interventions and for an intervention period of ≤4 weeks, respectively. Aromatherapy interventions lasting >20 min per session had an effect size of 1.28, with no significant difference in sleep quality. Quality evaluation revealed that the sleep quality after aromatherapy was significantly high in studies with methodological quality scores >8, with an effect size of 0.93. Moreover, significant combined effects of aromatherapy were observed with other variables such as stress, pain, anxiety, depression, and fatigue.ConclusionAromatherapy improves sleep quality and reduces stress, pain, anxiety, depression, and fatigue in adults and elderly people.     

A systematic review of personality disorder amongst people with intellectual disability with implications for the mental health nurse practitioner

Aims and objectives. This paper reviews and summarises the literature on assessment, diagnosis and management of personality disorder in people with intellectual disability. It will proceed to argue the implications of a mental health nurse practitioner in clinical practice. Background. Personality disorder is a potentially severe and disabling condition causing significant distress as well as presenting considerable challenges for service providers. Diagnosis in people with intellectual disability is controversial. However, it is considered that this population is at greater risk of these disorders. There is, however, little research on which to base clinical interventions or service planning. Design. Systematic review. Methods. A literature search of electronic data was undertaken in April 2007 using CINAHL, AMED, Medline, PsycINFO, EMBASE and Cochrane Library. Other sources included Google Scholar, hand searching of reference lists and texts and search of relevant websites. Results. The literature on personality disorder in intellectual disability is notable for its paucity. The limited evidence available suggests that this population is at greater risk of personality disorder and that assessment and diagnosis is complex and often overshadowed by the intellectual disability. Few papers address treatment, there are no trial‐based studies and it has not been established whether results can be extrapolated from research in the general population. Conclusions. The issue of personality disorder in people with intellectual disability is shrouded in controversy with a dearth of robust evidence to inform assessment or therapeutic care. Personality disorder does, however, provide a basis for decisions on type and intensity of support required for this population who have significant levels of unmet need. Relevance to clinical practice. Some people with an intellectual disability and personality disorder can live in the community with specialist support. The mental health nurse practitioner has the potential to provide people with dual diagnostic support needed to enhance the capacity of the service system to meet the needs of this complex and difficult population.     

Self-controlled technologies to support skill attainment in persons with an autism spectrum disorder and/or an intellectual disability: a systematic literature review

Persons with an autism spectrum disorder and/or intellectual disability have difficulties in processing information, which impedes the learning of daily living skills and cognitive concepts. Technological aids support learning, and if used temporarily and in a self-controlled manner, they may contribute to independent societal participation. This systematic review examines the studies that applied self-controlled technologies. The 28 relevant studies showed that skills and concepts are learned through prompting, interaction with devices, and practicing in (realistic) virtual environments. For attaining cognitive concepts, advanced technologies such as virtual reality are effective. Five studies focussed on cognitive concepts and two on emotion concepts. More research is necessary to examine the generalization of results and effect of using technology for learning cognitive and emotional concepts.

• Implications for Rehabilitation

• Persons with a moderate to mild intellectual disability and/or with autism can use self-controlled technology to learn new activities of daily living and cognitive concepts (e.g. time perception and imagination).

• Specific kinds of technologies can be used to learn specific kinds of skills (e.g. videos on computers or handheld devices for daily living skills; Virtual Reality for time perception and emotions of others).

• For learning new cognitive concepts it is advisable to use more advanced technologies as they have the potential to offer more features to support learning.

     

A systematic review of photovoice research methods with people with intellectual disabilities

Background

Photovoice is an arts-based participatory action research methodology that is growing in popularity. Our aim was to systematically review photovoice research with people with intellectual disabilities to describe the current ‘state of the art’ and identify areas for further methodological consideration.

Methods

We searched five databases using search terms relating to photovoice and intellectual disabilities. Thirty one studies met inclusion criteria. We used thematic analysis to identify common themes.

Findings

The themes identified—adaptations to the photovoice method, collaboration, participation and power, impact and outcomes—explored how far the ‘voice’ and agency of participants with intellectual disabilities taking part in photovoice research were supported and whether photovoice lived up to its promise as ‘action’ research.

Conclusion

Photovoice creates opportunities for self-representation of people with intellectual disabilities through photography. Participants could be further supported to engage with researchers in critical reflection on findings and collaborate on tangible outcomes.