Cancer Experiences in People with Intellectual Disabilities

People with intellectual disabilities are increasingly being diagnosed with cancer due, in part, to increases in life expectancy for this population. Despite the growing number of people with cancer and intellectual disabilities, the cancer-related experiences of people with intellectual disabilities are under-researched. Person-centred approaches to research are needed to better understand the needs and psychosocial outcomes of people with cancer and intellectual disabilities. This thesis aims to better understand the cancer-related experiences of people with intellectual disabilities, and the impact on the people who support them. The thesis comprises four related studies: (1) a systematic review of psychosocial experiences of cancer in people with intellectual disabilities; (2) a qualitative study of cancer experiences in people with intellectual disabilities using thematic analysis informed by grounded theory; (3) a survey of UK oncology nurses’ attitudes and care perceptions towards people with intellectual disabilities; and (4) a feasibility study of an intervention to improve healthcare professionals’ perceptions of communicating with people with cancer and intellectual disabilities. Five themes emerged from the ten papers included in the systematic review: delayed diagnosis; information, communication, and understanding; negative psychological consequences; negative physical consequences; and social support. Six of the ten papers included data from the same ethnographic study of 13 people, highlighting a paucity of empirical research regarding the psychosocial cancer experiences of people with intellectual disabilities. The qualitative study indicated that people with intellectual disabilities were often excluded from conversations about their diagnosis, treatment, and ongoing care, and expressed confusion and anxiety about their cancer. Attempts to protect them from distress inhibited communication, but where additional support was offered, participants engaged more meaningfully in their experience and this should, therefore, be encouraged. In the qualitative study, oncology nurses were reported to be important figures in the care of patients with intellectual disabilities. The survey of oncology nurses highlighted that caring for cancer patients with intellectual disabilities may intensify their already difficult role; however, previous experience may ameliorate negative consequences. This sample identified their need for training about communicating with people with intellectual disabilities. The first three studies informed the development of a novel, brief, online, video-based intervention for healthcare professionals working with people with intellectual disabilities and cancer. The feasibility trial of this intervention indicated that there were problems with recruitment, high attrition, and intervention adherence. These problems were, most likely due to participants finding the content and delivery method to be unacceptable. It is clear that the intervention is not feasible in its current format, and that further theoretical and modelling work is needed before the intervention is feasibility tested again ahead of a definitive trial. This body of work has demonstrated that people with intellectual disabilities and cancer face multiple barriers to accessing cancer care, including informative and understandable communication with healthcare professionals. With appropriate support, psychological and physical outcomes can be improved for people with intellectual disabilities and cancer, but caring for people with cancer and intellectual disabilities can be challenging for paid and informal carers, and oncology staff. Difficulties with communication are bi-directional, and improving communication might be an appropriate first step to improving cancer experiences for this population, but developing effective interventions presents numerous feasibility challenges

Health and social care access for adults with learning disabilities across the UK during the COVID-19 pandemic in 2020

Purpose: This paper presents data about access to health and social care services during the COVID-19 pandemic for adults with learning disabilities across England, Northern Ireland, Scotland and Wales. Methodology: Data were collected directly from 621 adults with learning disabilities and through separate proxy reports by family carers and paid support staff of another 378 adults with learning disabilities. The data were collected between December 2020 and February 2021, and concerned the use of health and social care services since the start of the first COVID-19 national lockdown in March 2020. Findings: Access to and use of health and social care services significantly reduced for adults with learning disabilities across the UK during the COVID-19 pandemic between March 2020 and February 2021, with many people not receiving any services at all during that period. Similar patterns were seen across England, Northern Ireland, Scotland and Wales. However, data suggest some variations between countries for some services. Implications: Future pandemic planning must ensure that access to these essential services is not completely lost for adults with learning disabilities and their family carers, as it was in some cases during the COVID-19 pandemic in 2020. Originality: This is the largest study about the impact of the COVID-19 pandemic on health and social care services for adults with learning disabilities in the UK. We primarily collected data directly from adults with learning disabilities, and worked with partner organisations of people with learning disabilities throughout the study

Psychosocial experiences of chronic illness in individuals with an intellectual disability: A systematic review of the literature

This is an author-produced version of an article accepted for publication in the Journal of Intellectual Disabilities and appeared online on 7/1/2015© 2015Background: Increased life expectancy has led to an increase in diagnoses of chronic illness in people with an intellectual disability; despite this increase, research about the psychological impact is rare. This review explored the psychosocial experiences of chronic illness in adults with an intellectual disability, revealing potential predictors and moderators of these experiences. Methods: Online databases were systematically searched to identify relevant literature, using predefined inclusion criteria. Of the 25,058 titles initially identified, 4 were included, that is, those collecting data on people with an intellectual disability and diagnosed with cancer (n = 2), chronic pain (n = 1) and diabetes (n = 1). Results: Narrative synthesis of the data identified six themes, namely, delayed diagnosis, information, communication and understanding, negative psychological consequences, negative physical consequences, social perception and social support. Conclusions: There are unmet needs within this population, including a lack of assistance in understanding their illness. A substantial gap in the literature should be addressed through further empirical work

Effectiveness of active support for adults with intellectual disability in residential settings : systematic review and meta-analysis

Background The review examined the effectiveness of Active Support (RQ1) and stakeholders’ experiences of the model (RQ2). Method Data were meta-analysed (RQ1; Studies=14) and synthesised narratively (RQ2; Studies=10). Results By follow-up (six-months post-training), effect sizes (RQ1) for resident total activity engagement were significant and ranged from small (d=0.33, 95% CIs: 0.10, 0.50) to large (Tau-U=0.95, 95% CIs: 0.64, 1.25) depending on study design. Follow-up changes in staff assistance were moderate (d=0.56, 95% CIs: 0.23, 0.89; Tau-U 0.63, 95% CIs: 0.32 to 0.93) and large for quality of support (d=1.03, 95% CIs: 0.61, 1.44). Other outcomes did not change. Conclusions Active Support was more effective following complete staff training, in larger settings, at lower staff-to-resident ratios, and with less experienced staff. Active Support training and outcomes were valued by staff and residents (RQ2), and staff experienced increased job satisfaction. Lower staff turnover and organisational readiness appear crucial for maintaining implementation

Online mindfulness stress intervention for family carers of children and adults with intellectual disabilities : feasibility randomized controlled trial

Objectives: Family carers of people with intellectual disabilities (ID) are twice as likely as other carers to experience stress and mental ill-health, but research exploring interventions is sparse. Online mindfulness may provide an accessible, cost-effective resource. The addition of guided telephone support could help to tailor an existing intervention for this population. A feasibility randomized controlled trial (RCT) was conducted to inform the development of a definitive RCT. Methods: Sixty participants were randomized to complete Be Mindful (a brief online mindfulness intervention) either with or without additional Peer Mentor support. Feasibility of recruitment, retention, intervention adherence, and acceptability of study design were examined. Preliminary analyses were undertaken on participant-reported outcomes pre- and post-intervention. Eighteen semi-structured interviews were conducted as a process evaluation. Results: Feasibility outcomes indicate that it would be possible to recruit and retain (88%) participants to a definitive RCT, and that the study design and intervention are acceptable. The addition of guided telephone support was not burdensome; indeed, it was additionally motivating. Telephone support can be delivered with high fidelity, but this is inconsistent and requires further piloting. Preliminary comparison data indicate small, but non-significant, improvements for participants receiving guided telephone support relative to those who did not over time. Conclusions: It is feasible to deliver online mindfulness with additional telephone guided support to family carers of people with ID, and this may lead to small benefits over receiving online mindfulness alone. A definitive RCT can be planned to examine the effectiveness and cost-effectiveness of this intervention

Who’s challenging who? : a co-produced approach for training staff in learning disability services about challenging behaviour

Purpose The purpose of this paper is to outline the development, piloting and evaluation of the Who’s Challenging Who? (WCW) training intervention for social care staff to improve their empathy and attitudes towards people with learning disabilities (LD) and challenging behaviour (CB). Design/methodology/approach A phased approach was taken to the development and testing of the intervention. Initially, the existing literature was reviewed, the theoretical background of the intervention was developed, and then the intervention was designed. A pilot study was undertaken, followed by further development, and a large-scale randomised controlled trial (RCT). Findings WCW had a small positive effect on staff empathy 20 weeks after the intervention, and small to moderate effects for other staff reported outcomes (e.g. positive empowerment attitudes and positive work motivation). Being trained by people with LD and CB encouraged staff to reflect on the impact they have on the people they support. The trainers with LD valued their role, and saw benefits beyond this (e.g. friendships). Research limitations/implications It is possible to carry out high-quality RCT evaluations of social care practice, and research should continue to generate evidence in this way, as in healthcare settings. However, there were difficulties in retaining participants. Practical implications People with LD can be actively involved in the co-production and delivery of social care training. Social implications Employment and a fair wage can increase the confidence and empowerment of people with LD. Originality/value This is the first large-scale RCT of an intervention that aimed to improve empathy/change attitudes in social care staff who work with people with LD and CB

Evaluation of IL-1 Blockade as an Adjunct to Linezolid Therapy for Tuberculosis in Mice and Macaques

In 2017 over 550,000 estimated new cases of multi-drug/rifampicin resistant tuberculosis (MDR/RR-TB) occurred, emphasizing a need for new treatment strategies. Linezolid (LZD) is a potent antibiotic for drug-resistant Gram-positive infections and is an effective treatment for TB. However, extended LZD use can lead to LZD-associated host toxicities, most commonly bone marrow suppression. LZD toxicities may be mediated by IL-1, an inflammatory pathway important for early immunity during M. tuberculosis infection. However, IL-1 can contribute to pathology and disease severity late in TB progression. Since IL-1 may contribute to LZD toxicity and does influence TB pathology, we targeted this pathway with a potential host-directed therapy (HDT). We hypothesized LZD efficacy could be enhanced by modulation of IL-1 pathway to reduce bone marrow toxicity and TB associated-inflammation. We used two animal models of TB to test our hypothesis, a TB-susceptible mouse model and clinically relevant cynomolgus macaques. Antagonizing IL-1 in mice with established infection reduced lung neutrophil numbers and partially restored the erythroid progenitor populations that are depleted by LZD. In macaques, we found no conclusive evidence of bone marrow suppression associated with LZD, indicating our treatment time may have been short enough to avoid the toxicities observed in humans. Though treatment was only 4 weeks (the FDA approved regimen at the time of study), we observed sterilization of the majority of granulomas regardless of co-administration of the FDA-approved IL-1 receptor antagonist (IL-1Rn), also known as Anakinra. However, total lung inflammation was significantly reduced in macaques treated with IL-1Rn and LZD compared to LZD alone. Importantly, IL-1Rn administration did not impair the host response against Mtb or LZD efficacy in either animal model. Together, our data support that inhibition of IL-1 in combination with LZD has potential to be an effective HDT for TB and the need for further research in this area