• Cancer Experiences in People with Intellectual Disabilities

      Hulbert-Williams, Nick; Hulbert-Williams, Lee; Bramwell, Ros; Flynn, Samantha (University of Chester, 2018-12-20)
      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.
    • Children’s Decisions to Support Victims of Bullying: Friend and Peer Influences and the Effects of a Cross-Age Teaching of Social Issues Intervention

      Boulton, Michael J.; Lloyd, Julian; Rodway, Paul; Marx, Hedda (University of Chester, 2018-12-17)
      Bullying among school children is a social phenomenon that is now recognised as a widespread and serious problem across the globe. While decades of research have generated valuable insights as regards prevalence, main correlates and detrimental health consequences, many questions and gaps remain. For instance, it is unclear why the great majority of peer bystanders not intervene to support victims in a bullying conflict despite holding anti-bullying beliefs. Furthermore, great efforts have been made in the area of peer support and anti-bullying initiatives however there is still no intervention that has shown to be effective long term and cross-culturally. This thesis consists of two empirical studies. To advance knowledge of factors that influence pupils’ victim support behaviour, the first study examined the role of perceived friend and peer consequences in predicting intentions to three types of help: provide emotional support, help to stop the bully and get adult support. Structural equation modelling revealed that perceived friend consequences were significantly associated with each of the victim support behaviours studied. Additionally, perceived peer reactions predicted intentions to get adult help. These findings suggest that friends play a more important role than peers in affecting victim support. Some significant gender effects emerged, showing that the overall pattern of associations held for boys, but not for girls. The findings highlight the concerns children hold with regard to their (dis)approving views related to victim support. Outcomes further suggest that victim defending should not be regarded as a broad homogeneous construct. The second study assessed the effectiveness of a cross-age teaching of social issues intervention (CATS) on enhancing pupils’ knowledge on three victim support behaviours, and their awareness of the value of helping. In small cooperative groups older pupils were invited to step into the tutor role to prepare a lesson and teach it to two years younger tutees. An experimental-control group design was employed to test participants’ performance at three time points over a six to eight week period. CATS tutors significantly improved their knowledge and awareness of the provictim behaviours studied while no positive changes were evident for participants in the control group. Furthermore, children who participated in the project expressed high satisfaction with the intervention. Based on the positive findings it was concluded that CATS is a viable technique for enhancing pupils’ knowledge and awareness on prosocial topics. Helping children to see the value of supporting victims of bullying, in any of the ways studied, could help them avoid anticipating negative reactions from friends and peers, and in turn make it more likely that they would choose to help if the need arose.
    • Choices for childbirth: The role of psychological and social factors in the nature and extent of women's decisions for labour and delivery and their influence on post-natal outcomes

      Hayes, Liane (University of Liverpool, 2014-01)
      Research into birth plans has considered women’s experiences of their usefulness as an aid to communicating preferences for childbirth. It has also evaluated implications for post-natal well-being based on the realisation of expressed preferences in labour and delivery. The current study aimed to identify the psychosocial profile of birth planners and to explore the outcomes for these women as compared with non-planners post-natally. It also compared the psychological constructs measured in the sample with a non-pregnant population to see differences between pregnant, post-natal and non-pregnant women on these dimensions. A sample of 140 women who had not been pregnant in the past year completed a questionnaire measuring: Age, occupational group; ethnic group; general health status, health knowledge, attitudes towards doctors and medicines; locus of control; coping style; perceived social support; and beliefs about pain control. A questionnaire was also given to 120 women in four antenatal clinics across a primary care trust in the North West of England. This questionnaire produced data on all of the variables in the comparison questionnaire, plus: Parity; antenatal education; birth plan use; medical conditions; information seeking; and childbirth self-efficacy. Women also described in text their preferences for birth. At least four weeks after delivery these women completed a further questionnaire consisting of the seven measures used in both the previous two questionnaires, plus: experience of birth; usefulness of birth plan; and post-natal depression. They also described in text their experience of birth. Results showed that birth planners were younger and had lower levels of internal health control than non-birth planners. Birth planners tended to use problem focussed coping styles, perceived less support from their significant other and perceived doctors as more powerful in pain control than non-birth planners. More positive psychological post-natal outcomes were experienced by women who valued their birth plans if they had one but overall birth planners experienced more negative psychological post-natal outcomes than non-birth planners. The non-pregnant sample was comparable in demographic terms to the pregnant sample but differed in most subscales across all measures to the pregnant sample pre-natally and to a lesser extent post-natally. The factors implicated in birth planning and psychological post-natal outcomes are discussed both in terms of the literature and possible implications for the training and practice of midwives.
    • Sport coaching in a community setting: How do community youth sport coaches’ frame their role?

      Wheeler, Timothy J.; Lafferty, Moira E.; Ryrie, Angus (University of Chester, 2016-12)
      Community youth sport coaching is identified as a coaching domain tasked with delivering complex social outcomes. When coaching in this context, individuals can be expected to operate in multiple settings, as well as engage with, and support numerous participant types. To meet participant needs coaches are required to have a wide range of skills and competencies. Current research suggests how coaching roles emerge and competencies develop are not always clear. Therefore, to understand coach identity fully; there is a requirement to explore the meanings, values and importance placed upon coach roles. Past research illustrates that the manner in which coaches’ frame their role is instrumental to how they prioritise and organise critical moments of practice that warrant further reflection; thus allowing individuals to “construct the reality in which they function". This thesis intends to extend current knowledge on how sport coaches’ define, shape and “frame” their role in community youth sport settings. The research objectives are to: (a) examine the environmental conditions and personal views coaches’ hold with regard to community youth sport in the UK and, (b) evaluate elements that influence their role and individual approach towards coaching. In essence, (c) evaluate how community youth sport coaches’ shape and frame their role.
    • The Unmet Psychosocial Needs of Haematological Cancer Patients and their Impact upon Psychological Wellbeing

      Swash, Brooke (University of Chester, 2015-01)
      Unmet psychosocial needs indicate a desire for additional support in cancer patients, having a direct clinical utility in directing the provision of supportive care. There is evidence in wider cancer groups that unmet needs relate to psychological wellbeing but this relationship has yet to be fully explored and factors that may explain or moderate this relationship yet to be examined. There has been little investigation of type or prevalence of unmet need in haematological cancer patients, however, haematological cancers are noteworthy for their high levels of associated distress. Understanding causality of distress is key to the effective implementation of supportive care services. This thesis aimed to highlight the unmet needs most relevant to haematological cancer patients and to explore their impact upon psychological wellbeing. This thesis comprises four interconnected research studies: a systematic review exploring existing knowledge of unmet needs; a qualitative exploration of patient experiences of unmet needs and their impact; a quantitative questionnaire study of unmet need and psychological wellbeing in newly diagnosed haematological cancer patients, placing a special emphasis on the difference between active treatment and watch and wait regimes; and, a second quantitative questionnaire study that explores unmet need, psychological wellbeing, and psychological flexibility as a potential moderator in their relationship in a sample of haematological cancer survivors. This thesis demonstrates a relationship between unmet need and psychological wellbeing in haematological cancer patients. Fear of recurrence, concerns about loved ones, being able to do the things you used to, and a need for information were all found to be of relevance. The qualitative study highlighted that patients feel that, as haematology patients, they are distinct from other cancer patients which impacts upon the perceived acceptability of support services and specific barriers to the accessing of support services are presented. Significant correlations between unmet need and key psychological outcomes such as anxiety, depression and quality of life were observed in both quantitative studies. In addition, the concept of psychological flexibility was found to moderate the relationship between unmet need and psychological wellbeing in haematological cancer survivors. This work has clear implications for both future research and clinical practice. Unmet needs assessment has the potential to be used as a screening tool for overall psychological wellbeing, a way to stratify and understand the specific causes of distress and poor quality of life for this patient group. In the UK, on-going support for cancer patients diminishes at the end of treatment, these findings suggest that further support is needed in order to meet the psychological needs of cancer survivors. Further research is needed to further explore the role of psychological flexibility in cancer-related distress: interventions that target psychological flexibility have the potential to improve both unmet need and distress.