• Cancer experiences in individuals with an intellectual disability: Results from a grounded theory study

      Flynn, Samantha; Hulbert-Williams, Nicholas J.; Hulbert-Williams, Lee; Bramwell, Ros; University of Chester (Wiley, 2015-04-28)
      Increasing numbers of people with an intellectual disability (ID) are diagnosed with cancer, partly due to increased life expectancy. However, there is a paucity of research exploring their cancer experiences.
    • Caring for cancer patients with an intellectual disability: Attitudes and care perceptions of UK oncology nurses

      Flynn, Samantha; Hulbert-Williams, Lee; Bramwell, Ros; Stevens-Gill, Debbie; Hulbert-Williams, Nicholas J.; University of Chester and Institute of Psychology, Faculty of Education, Health and Wellbeing, University of Wolverhampton (Elsevier, 2015-05-08)
      Background: Caring for people with cancer or an intellectual disability (ID) is stressful: little is known about the combined impact of caring for cancer patients with an ID, though this is expected to be especially challenging. Method: Eighty-three nurses, working in oncology or a related field (i.e. palliative care) were recruited. Perceptions of caring for patients with and without an ID were measured, alongside potentially confounding information about participant demographic characteristics and perceived stress. Results: Participants felt less comfortable communicating with patients with an ID about their illness (F(1,82) = 59.52, p <0.001), more reliant on a caregiver for communication (F(1,82) = 26.29, p < 0.001), and less confident that the patient's needs would be identified (F(1,82) = 42.03, p < 0.001) and met (F(1,81) = 62.90, p < 0.001). Participants also believed that caring for this patient group would induce more stress, compared with patients without an ID (F(1,81) = 31.592, p < 0.001). Previous experience working with ID patient groups appears to mitigate some perceptions about providing care to this population. Conclusions: Caring for cancer patients with an ID may intensify this, already difficult, role. Through training and knowledge exchange, oncology nurse's confidence in communication, providing appropriate care, and positivity towards this patient group may be improved.
    • Examining the relationship between autism traits and sleep duration as predictors of suicidality

      Hochard, Kevin D.; Pendrous, Rosina; Mari, Tyler; Flynn, Samantha; University of Chester; University of Warwick
      Short sleep duration is a known risk factor for suicidality in the general population, yet it is unclear how short sleep interacts with autism traits in predicting suicidality. In this cross-sectional online study, a general population sample (N = 650) completed measures assessing autism traits, suicidal ideation, and sleep duration. Moderated hierarchical regressions demonstrated that higher autism traits and shorter sleep were independent predictors of increased suicide ideation. However, sleep duration did not significantly moderate the autism trait to suicide ideation relationship. Future work should explore this relationship longitudinally using objective measures before intervention work to increase sleep duration in those with elevated autism traits be consider.
    • Psychosocial experiences of chronic illness in individuals with an intellectual disability: A systematic review of the literature

      Flynn, Samantha; Hulbert-Williams, Nicholas J.; Hulbert-Williams, Lee; Bramwell, Ros; University of Chester (SAGE, 2015)
      Background: 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.
    • Universal BRCA1/BRCA2 testing for ovarian cancer patients is welcomed, but with care: How women and staff contextualise experiences of expanded access

      Shipman, Hannah; Flynn, Samantha; MacDonald-Smith, Carey; Brenton, James; Crawford, Robin; Tischkowitz, Marc; Hulbert-Williams, Nicholas J. (2017-05-24)
      Decreasing costs of genetic testing and advances in treatment for women with cancer with germline BRCA1/BRCA2 mutations have heralded more inclusive genetic testing programs. The Genetic Testing in Epithelial Ovarian Cancer (GTEOC) Study, investigates the feasibility and acceptability of offering genetic testing to all women recently diagnosed with epithelial ovarian cancer (universal genetic testing or UGT). Study participants and staff were interviewed to: (i) assess the impact of UGT (ii) integrate patients’ and staff perspectives in the development of new UGT programs. Semi-structured interviews were conducted with twelve GTEOC Study participants and five members of staff involved in recruiting them. The transcripts were transcribed verbatim and analyzed using Interpretative Phenomenological Analysis. There are two super-ordinate themes: motivations and influences around offers of genetic testing and impacts of genetic testing in ovarian cancer patients. A major finding is that genetic testing is contextualized within the broader experiences of the women; the impact of UGT was minimized in comparison with the ovarian cancer diagnosis. Women who consent to UGT are motivated by altruism and by their relatives’ influence, whilst those who decline are often considered overwhelmed or fearful. Those without a genetic mutation are usually reassured by this result, whilst those with a genetic mutation must negotiate new uncertainties and responsibilities towards their families. Our findings suggest that UGT in this context is generally acceptable to women. However, the period shortly after diagnosis is a sensitive time and some women are emotionally overburdened. UGT is considered a ‘family affair’ and staff must acknowledge this.
    • “You don’t know what’s wrong with you”: An exploration of cancer-related experiences in people with an intellectual disability

      Flynn, Samantha; Hulbert-Williams, Nicholas J.; Hulbert-Williams, Lee; Bramwell, Ros; University of Chester (Wiley, 2016-08-02)
      Objective: Few empirical studies have explored cancer-related experiences of people with an intellectual disability (ID), despite rising cancer incidence in this population. The present research aims to better understand the experiences of this population from multiple perspectives, generating theory and further research questions. Methods: Six people with ID and cancer, alongside twelve participants from their supportive network (including: family, social and healthcare professionals), were interviewed; transcripts were analysed using grounded theory. Results: People with ID were often overlooked within cancer consultations, excluded from conversations about their care and treatment-related decisions. Caregivers (family and paid) were relied upon to facilitate communication, understanding and supplement healthcare professional knowledge. Caregivers’ attempts to protect the patient from distress harmed communication further; our interviewees suggest that increased involvement and empowerment mediated cancer-related distress. Where healthcare professionals possessed good patient-centred skills, and additional support was offered, people with ID were more likely to engage meaningfully in their cancer-related experience. Conclusions: Interestingly, emergent concepts were consistent with general psycho-oncology literature, however incidence and severity of difficulty was substantially greater in this sample. This disparity warrants further exploration, with a need for intervention research to develop effective ways of supporting healthcare professionals in enhancing patient-centred skills with this population. In the clinical setting, patient involvement in healthcare decisions (despite problems associated with co-morbidity) is imperative to optimise engagement.