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

Appetitive augmental functions and common physical properties in a pain-tolerance metaphor: An extended replication

Relational frame theory claims that the tacit understanding of metaphorical language rests upon our ability to derive relations based on relevant contextual cues; with metaphor aptness being a function of learning history and the number and nature of contextual cues presented. Recent experimental research has explored whether metaphor aptness plays a role in changing behaviour. Sierra, Ruiz, Flórez, Riaño Hernández, and Luciano (2016) demonstrated that the presence of common physical properties (herein common properties; “cold”) within a perseverance metaphor increased pain tolerance to the cold pressor task. When the metaphor also specified appetitive augmental functions (herein augmentals; “something important to you”), pain tolerance also increased. We tested the replicability of these findings under more stringent conditions, using a stratified (by sex) double-blind randomised-controlled experimental design. Eighty-nine participants completed baseline measures of psychological flexibility, cognitive fusion, generalised pliance, and analogical reasoning ability. Participants were then allocated to a pre-recorded audio-delivered metaphor exercise containing either: (i) common properties; (ii) augmentals; (iii) both; or (iv) neither (control condition). Participants completed the cold pressor task before and after intervention. We found no change in pain tolerance following intervention in any condition. Given potential implications for apt metaphor use for changing behaviour, further work is required to establish why the original study's findings were not replicated, to identify boundary conditions for the putative effect, and test metaphor use in ecologically valid settings

In search of scope: A response to Ruiz et al. (2020)

Deliberate and explicit replication attempts are becoming more common across the behavioral sciences. Whilst replicability has been recognized as a core feature of science for decades (if not centuries), the directness of today’s replication work requires us to consider carefully how we communicate our research and how we conceptualize our theories in light of differing findings. This paper uses a concrete example to make a number of suggestions for how we, as a scientific community, ought to engage with replication attempts. Within Relational Frame Theory (RFT) there is a growing body of applied research on the effective use of metaphors to increase tolerance of aversive states. We conducted a replication of an earlier experimental analogue study (2020, this journal) and failed to find the specified effect. Ruiz et al. (2020, also this journal) have recently published a critical response in which they list a number of differences between our two studies which might account for the negative findings. We will use this series of three papers as our exemplum. We also take the opportunity to acknowledge some points of critique provided by Ruiz et al., and to set the record straight with respect to the differences between the original study and our replication attempt. We hope this discussion might help the CBS community to develop a coherent approach to the very current issue of replication

Contextual behavioural coaching: An evidence-based model for supporting behaviour change

As coaching psychology finds its feet, demands for evidence-based approaches are increasing both from inside and outside of the industry. There is an opportunity in the many evidence-based interventions in other areas of applied psychology that are of direct relevance to coaching psychology. However, there may too be risks associated with unprincipled eclecticism. Existing approaches that are gaining popularity in the coaching field such as Dialectic Behavioural Therapy and Mindfulness enjoy close affiliation with Contextual Behavioral Science (CBS). In this article, we provide a brief overview of CBS as a coherent philosophical, scientific, and practice framework for empirically supported coaching work. We review its evidence base, and its direct applicability to coaching by describing CBS’s most explicitly linked intervention – Acceptance and Commitment Therapy/Training (ACT). We highlight key strengths of ACT including: its great flexibility in regard of the kinds of client change it can support; the variety of materials and exercises available; and, the varied modes of delivery through which it has been shown to work. The article lays out guiding principles and provides a brief illustrative case study of Contextual Behavioural Coaching

Web-Based Psychological Interventions for People Living With and Beyond Cancer:Meta-Review of What Works and What Does Not for Maximizing Recruitment, Engagement, and Efficacy

BACKGROUND: Despite high levels of psychological distress experienced by many patients with cancer, previous research has identified several barriers to accessing traditional face-to-face psychological support. Web-based psychosocial interventions have emerged as a promising alternative. OBJECTIVE: This meta-review aimed to synthesize evidence on recruitment challenges and enablers, factors that promote engagement and adherence to web-based intervention content, and factors that promote the efficacy of web-based psychosocial interventions for patients with cancer and cancer survivors. METHODS: We conducted a systematic search of previous reviews that investigated the recruitment, engagement, and efficacy of web-based and app-based psychosocial interventions in adult patients with cancer and cancer survivors. We searched PubMed, CINAHL, PsycINFO, and the Cochrane Library database for relevant literature. The search terms focused on a combination of topics pertaining to neoplasms and telemedicine. Two independent authors conducted abstract screening, full text screening, and data extraction for each identified article. RESULTS: A total of 20 articles met eligibility criteria. There was inconsistency in the reporting of uptake and engagement data; however, anxiety about technology and perceived time burden were identified as 2 key barriers. Web-based psychosocial oncology interventions demonstrated efficacy in reducing depression and stress but reported weak to mixed findings for distress, anxiety, quality of life, and well-being. Although no factors consistently moderated intervention efficacy, preliminary evidence indicated that multicomponent interventions and greater communication with a health care professional were preferred by participants and were associated with superior effects. CONCLUSIONS: Several consistently cited barriers to intervention uptake and recruitment have emerged, which we recommend future intervention studies address. Preliminary evidence also supports the superior efficacy of multicomponent interventions and interventions that facilitate communication with a health care professional. However, a greater number of appropriately powered clinical trials, including randomized trials with head-to-head comparisons, are needed to enable more confident conclusions regarding which web-based psychosocial oncology interventions work best and for whom. TRIAL REGISTRATION: PROSPERO CRD42020202633; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=20263

Recruiting cancer survivors into research studies using online methods: a secondary analysis from an international cancer survivorship cohort study.

Recruiting participants into cancer survivorship research remains a significant challenge. Few studies have tested and compared the relative use of non-clinical online recruitment methods, especially in samples of adult cancer survivors. This paper reports on the feasibility of recruiting a representative cohort of cancer survivors using online social media. Two-hundred participants with a cancer diagnosis within the past 12 months were recruited via social media (Facebook, Twitter, Reddit) into a longitudinal questionnaire study. Different methods of online recruitment proved to be more effective than others over time. Paid Facebook boosting, Reddit posts, and Twitter adverts placed by existing cancer charities proved most helpful in reaching our recruitment target (contributing 27%, 22% and 32% respectively). Recruiting online achieved a more demographically and clinically representative sample for our study: our sample was younger, less heteronormative, including those with a range of clinical diagnoses, primary and recurrence illness, and patients who had both completed and were still receiving treatment. This was certainly not a quick method of sample recruitment but that could have been optimised by focussing only on the three most effective methods describe earlier. Whilst we found that online recruitment is significantly lower cost than traditional recruitment methods, and can reduce some biases, there still remains the potential for some biases (e.g. excluding much older participants) and ethical/methodological issues (e.g. excluding those without access to the internet). We outline our recruitment strategy, retention rates, and a cost breakdown in order to guide other researchers considering such methods for future research in cancer survivorship

Evaluating process and effectiveness of a low-intensity CBT intervention for women with gynaecological cancer (the EPELIT Trial)

This document is the Accepted Manuscript version of a published work that appeared in final form in AMRC Open Research. To access the final edited and published work see https://doi.org/10.12688/amrcopenres.12971.1Background: Improving survival from gynaecological cancers is creating an increasing clinical challenge for long-term distress management. Psychologist-led interventions for cancer survivors can be beneficial, but are often costly. The rise of the Psychological Wellbeing Practitioner (PWP) workforce in the UK might offer a cheaper, but equally effective, intervention delivery method that is more sustainable and accessible. We aimed to test the effectiveness of a PWP co-facilitated intervention for reducing depression and anxiety, quality of life and unmet needs. Methods: We planned this trial using a pragmatic, non-randomised controlled design, recruiting a comparator sample from a second clinical site. The intervention was delivered over six-weekly sessions; data were collected from participants at baseline, weekly during the intervention, and at one-week and three-month follow-up. Logistical challenges meant that we only recruited 8 participants to the intervention group, and 26 participants to the control group. Results: We did not find significant, between-group differences for depression, quality of life or unmet needs, though some differences at follow-up were found for anxiety (p<.001). Analysis of potential intervention mediator processes indicated the potential importance of self-management self-efficacy. Low uptake into the psychological intervention raises questions about (a) patient- driven needs for group-based support, and (b) the sustainability of this intervention programme. Conclusions: This study failed to recruit to target; the under-powered analysis likely explains the lack of significant effects reported, though some trends in the data are of interest. Retention in the intervention group, and low attrition in the control group indicate acceptability of the intervention content and trial design; however a small baseline population rendered this trial infeasible in its current design. Further work is required to answer our research questions, but also, importantly, to address low uptake for psychological interventions in this group of cancer survivors

Evaluating the impact of COVID‐19 on supportive care needs, psychological distress and quality of life in UK cancer survivors and their support network

From Wiley via Jisc Publications RouterHistory: received 2020-10-30, rev-recd 2021-02-12, accepted 2021-03-03, pub-electronic 2021-03-25, pub-print 2021-09Article version: VoRPublication status: PublishedAbstract: Objectives: The COVID‐19 pandemic is having considerable impact on cancer care, including restricted access to hospital‐based care, treatment and psychosocial support. We investigated the impact on unmet needs and psychosocial well‐being. Methods: One hundred and forty four participants (77% female), including people with cancer and their support networks, were recruited. The most prevalent diagnosis was breast cancer. Forty‐one participants recruited pre‐pandemic were compared with 103 participants recruited during the COVID‐19 pandemic. We measured participants' unmet supportive care needs, psychological distress and quality of life. Results: Half of our patient respondents reported unexpected changes to treatment following pandemic onset, with widespread confusion about their longer‐term consequences. Although overall need levels have not increased, specific needs have changed in prominence. People with cancer reported significantly reduced anxiety (p = 0.049) and improved quality of life (p = 0.032) following pandemic onset, but support network participants reported reduced quality of life (p = 0.009), and non‐significantly elevated anxiety, stress and depression. Conclusion: Psychological well‐being of people with cancer has not been detrimentally affected by pandemic onset. Reliance on home‐based support to compensate for the lost availability of structured healthcare pathways may, however, explain significant and detrimental effects on the well‐being and quality of life of people in their support and informal care networks

Using Drug Development Methodology to Improve Survivorship and Supportive Care Intervention Trials.

This is the peer reviewed version of the following article: Howells, L., Hulbert-Williams, N. J. & Blagden, S. P. (2019). Using drug development methodology to improve survivorship and supportive care intervention trials (Invited Editorial). Psycho-Oncology, 28(7), which has been published in final form at https://doi.org/10.1002/pon.5100. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-ArchivingN/

Psychological support for patients with cancer: evidence review and suggestions for future directions

This is a non-final version of an article published in final form in Hulbert-Williams, N. J., Beatty, L., & Dhillon. H. (2018). Psychological support for patients with cancer: evidence review and suggestions for future research. Current Opinion in Supportive & Palliative Care, 12(3), 276-292.Purpose of the review. Psychological distress and mental health comorbidity are common in cancer. Various therapeutic frameworks have been used for interventions to improve psychological wellbeing and quality of life in cancer patients with mixed results. This paper reviews contributions to that literature published since January 2017. Recent findings. The majority of new psychological intervention research in cancer has used Cognitive Behavioural Therapy or Mindfulness-Based Interventions. Cognitive behavioural Therapy has been considered a gold-standard intervention and recent evidence justifies continuation of this. Recent reviews call into question the validity of evidence for Mindfulness- Based Interventions. A smaller number of trials using Acceptance and Commitment Therapy, Meta-Cognitive Therapy, Dignity Therapy and Coaching have emerged, and whilst findings are promising, additional fully-powered trials are required. Weaker evidence exists for counselling, support-based, and Narrative Therapy interventions. Summary. Efficacious, timely and acceptable psychological interventions are a necessary component of comprehensive cancer care. There is some way to go before the evidence conclusively points towards which interventions work for which cancer groups and for which specific outcomes. Methodological limitations must be addressed in future trials; at the forefront remains the need for fully-powered, head-to-head comparison trials