The development and validation of a patient based health outcome measure for adults with beta thalassaemia major (BTM)

This thesis was submitted for the degree of Doctor of Philosophy and awarded by Brunel University.For the astract, please see the PDF fil

Parental attitudes toward disclosure of the mode of conception to their child conceived by in vitro fertilization

OBJECTIVES: To survey the level of disclosure of conception method within families of children conceived using conventional IVF or ICSI and to examine the factors that may influence parental attitudes and plans for disclosure. DESIGN: An in-depth questionnaire. SETTING: Participants recruited through UK fertility clinics. PATIENTS: Parents of IVF/ICSI children aged 5-6 years (n=181, 51%). INTERVENTION: Mothers and fathers of IVF/ICSI children were sent questionnaires to complete and return in a reply paid envelope. MAIN OUTCOME MEASURES: Completion of the questionnaire. RESULTS: Most parents had told somebody about their child’s method of conception, mostly close friends and family. Fewer (26% mothers/17% fathers) had already discussed the child’s mode of conception with their child. 58% mothers/57% fathers intended to tell their child at some point. 16% mothers/21% fathers were undecided. 4% fathers never wanted to discuss the subject with their child. Children were more likely to be told if conception was ICSI, rather than conventional IVF, and if an only child. 29% undecided fathers and 36% undecided mothers stated that they would tell their child if appropriate child-friendly explanatory literature was available. CONCLUSIONS: The majority of parents wish to tell their child at some point but are unsure about the most appropriate timing and method of disclosure. Fertility clinics may have a role in providing the necessary support. Child-friendly literature may be helpful

The Therapeutic Engagement Questionnaire (TEQ) : a service user-focused mental health nursing outcome metric

Abstract: Background: Therapeutic engagement (TE) has been described as the crux of mental health nursing but despite its perceived importance, to date, there is no measurement tool that captures it. As a result, there is no way of determining the contribution of mental health nursing interaction to service user recovery, in acute inpatient mental health settings or the wider care quality agenda. Methods: To develop and validate a TE measurement tool in partnership with Service Users (SUs) and Registered Mental Health Nurses (RMHNs). The TEQ was developed in 3 stages: 1) item generation (and pre-testing), 2) item reduction using Principal Component Analysis (PCA), and 3) validation across Mental Health Trusts in England. Results: The final questionnaire has two versions, (SU and RMHN version), each scored within two contexts (1–1 SU-RMHN interactions and overall environment and atmosphere of the ward) and includes 20 items with two sub-scales (care interactions and care delivery). Psychometric evaluation of the TEQ shows high inter-scale correlations (0.66–0.95 SU; 0.57–0.90 RMHN), sound sub-scale internal consistency (> 0.95), concurrent validity (> 0.60) and adequate score variability for both versions of the TEQ. In summary, the TEQ behaves well as a measurement tool. Conclusions: The TEQ can determine the collaborative and empathic nature of RMHN-SU interactions, capture if SUs are treated with dignity and respect and recognise that the principles of the recovery approach are being respected. The TEQ can also provide robust monitoring of nursing activity, offer opportunity for transparency of activity, feed into healthcare organizations’ key performance indicators and provide reassurance about the nature and quality of nurses’ work

Exploring views on satisfaction with life in young children with chronic illness: an innovative approach to the collection of self-report data from children under 11

The objective of this study was to explore young children’s views on the impact of chronic illness on their life in order to inform future development of a patient-based self-report health outcome measure. We describe an approach to facilitating self-report views from young children with chronic illness. A board game was designed in order to obtain qualitative data from 39 children with a range of chronic illness conditions and 38 healthy controls ranging in age from 3 to 11 years. The format was effective in engaging young children in a self-report process of determining satisfaction with life and identified nine domains. The board game enabled children aged 5–11 years with chronic illness to describe the effects of living with illness on home, family, friends, school and life in general. It generated direct, non-interpreted material from children who, because of their age, may have been considered unable or limited their ability to discuss and describe how they feel. Obtaining this information for children aged 4 and under continues to be a challenge

The feelings and thoughts of mental health nurses concerning the management of distressed and disturbed in-patients: A comparative qualitative European study

High levels of distress and disturbance amongst those experiencing acute mental illness can be a major problem for mental health nurses. The feelings experienced by these nurses when caring for and supporting disturbed and/or distressed patients along with their concurrent thoughts is not well described in the literature. To date, this complex issue has not been explored within a comparative European context. The objective of this qualitative study was to explore the feelings and thoughts of mental health nurses when supporting and caring for distressed and/or disturbed patients in 6 European countries. Methods: Focus groups were used to collect data from 130 mental health nurses working in acute inpatient psychiatric settings. Results: Data were analysed using content analysis. Findings highlighted 6 broad themes: (1) Mixed emotions: expressive and responsive (2) Procedure for caring for and supporting disturbed and/or distressed patients, (3) Use of guidelines for caring and supporting disturbed and/or distressed patients, (4) Team and organisational support, (5) Ethical concerns: cogntive dissonance and (6) Education and training. Commonalities and differences were found across all themes. Approaches to care, nurses\u2019 role and education, clinical guidelines and/or standards vary from country to country therefore the care, treatment and management of distressed and/or disturbed patients\u2019 varies. As a result mental health nurses have different experiences, various emotional quandaries concurrent with cognitive dissonance and different coping strategies when caring for and supporting distressed and disturbed patients. Conclusions: More emphasis needs to be given to the emotional quandaries and concurrent cognitive dissonance experienced by mental health nurses caring for distressed and/or disturbed inpatients in acute psychiatric settings. Increased access to education and training with particular attention to interpersonal communication and relationship building within clinical teams needs to be a priority given the experiences described by mental health nurses