Development of the Thalassaemia Adult Life Index (ThALI).

BACKGROUND: Beta Thalassaemia Major (ßTM) is a chronic genetic illness whereby the challenges faced by patients exposes them to increased risk of psychosocial issues. Despite this, a disease-specific tool to measure the impact of this illness on adult patients has yet to be developed. METHODS: In collaboration with ßTM adult patients, this study aimed to develop a comprehensive, disease-specific, easy to use psychometrically sound tool to measure the impact of chelation and transfusion dependent ßTM in a cross-cultural patient group in England.The Thalassaemia Life Index (ThALI) was developed in two stages - item generation and pre-testing and item reduction - in collaboration with service users. Recruited adult patients shaped the design of the instrument including its statements and subscales. Standard item reduction techniques were used to develop the instrument. RESULTS: The final version of the ThALI encompasses 35 statements and five sub-scales - general physical health, coping, body image, appearance and confidence, social relationships and autonomy. This endorses the multidimensionality of quality of life (QoL). The factor structure of the ThALI is highly stable and its internal consistency is high (alpha = 0.87 for the overall scale; 0.83-0.94 for its subscales). The ThALI has sound scaling assumptions, acceptability and score variability. Content validity was confirmed by experts and service user interviewees. The loadings for the items retained were adequate and the item discriminant validity sound. CONCLUSIONS: The ThALI covers the impact of ßTM in adult patients. Preliminary testing shows its multidimensionality to be reliable and valid. The national authentication of the tool with patients treated in Centres of Excellence will aim to provide further evidence regarding the ThALI's psychometric properties. Once authenticated, the ThALI may be utilised in research and in clinical settings to assess the effects of new therapies and/or interventions from the patients' perspective to inform practice and/or to identify areas of concern.

Training healthcare assistants working in adult acute inpatient wards in Psychological First Aid: An implementation and evaluation study.

WHAT IS KNOWN ON THE SUBJECT: Healthcare assistants are untrained and unregistered frontline staff but are expected to be proactive in preventing and responding to 'untoward' incidents quickly and efficiently when working within adult acute inpatient psychiatric settings. Healthcare assistants should be trained to provide enhanced care to service users residing in acute psychiatric settings. To date, a training programme in Psychological First Aid has not been expended in such a setting with nonregistered staff. WHAT THE PAPER ADDS TO EXISTING KNOWLEDGE: The study demonstrates that training healthcare assistants in Psychological First Aid is useful in improving their confidence in caring for service users, therapeutic engagement with service users and ward culture in general. WHAT ARE THE IMPLICATIONS FOR PRACTICE: A training programme in Psychological First Aid for healthcare assistants to enhance ward culture can be implemented in different practice environments. Psychological First Aid is harmonious with nursing values and provides healthcare assistants with a relevant, useful and easily understood toolkit to apply in acute psychiatric settings. ABSTRACT: Introduction Healthcare assistants working within adult acute inpatient psychiatric settings are untrained and unregistered, however, they can contribute to quality service if they receive some training. Psychological First Aid training has never been expended in these settings, so this study intends to fill this gap in the existing evidence with this category of healthcare personnel. Aim The aim of this study was to introduce and evaluate first aid training for healthcare assistants. Method A pre/post design was adopted to gather data using questionnaires and interviews. The groups of participants included 16 healthcare assistants trained in Psychological First Aid, a sample of service users and four ward managers. Results Post-training, (a) healthcare assistants and service users ranked the therapeutic milieu of the ward more favourably, (b) the self-efficacy of the healthcare assistants increased, and the number of 'untoward' incidents decreased, and (c) health care assistants' confidence in their skills was high. The ward manager interviews post-training revealed four themes: (a) staff utilization of new skills and renewed enthusiasm, (b) calmer atmosphere on the ward and staff togetherness, (c) confidence and reflection on practice and (d) therapeutic engagement. Discussion Training healthcare assistants is useful in improving staff confidence, therapeutic engagement with service users and ward culture in general. Implications for practice Techniques and skills learnt are relevant and useful to healthcare assistants and provide an easily understood toolkit that is harmonious with nursing values. If executed correctly, the training can enhance practice and care outcomes and the overall service user experience.

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

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.

Understanding therapeutic approaches to anxiety in vestibular rehabilitation: a qualitative study of specialist physiotherapists in the UK.

PURPOSE: People with vestibular disorders are typically treated by physiotherapists in vestibular rehabilitation. Anxiety is strongly associated with vestibular disorders; however, there is a lack of understanding about how physiotherapists respond to people presenting with anxiety within vestibular rehabilitation. This study aimed to explore physiotherapists' current practice in assessing and treating patients with anxiety in vestibular rehabilitation. MATERIALS AND METHODS: A qualitative study using semi-structured interviews with 10 specialist physiotherapists in vestibular rehabilitation in three university teaching hospitals in England. Data were analyzed using thematic analysis. RESULTS: Four themes were identified: (i) The therapeutic relationship, (ii) Adapting assessment and treatment, (iii) Psychological intervention and support, and (iv) Physiotherapists' education and training. Physiotherapists reported using a range of behavioral and cognitive techniques and adapting their therapeutic approach by placing greater emphasis on education, building trust and pacing treatment. Physiotherapists highlighted the need for more specialist psychological support for patients during vestibular rehabilitation and tailored training and guidance on addressing anxiety within vestibular rehabilitation. CONCLUSIONS: Physiotherapists working in vestibular rehabilitation consider managing aspects of anxiety within their scope of practice and describe taking a psychosocial therapeutic approach. There is limited access to expert psychological support for patients with anxiety within vestibular rehabilitation. Implications for rehabilitation Anxiety is strongly associated with vestibular disorders and it is common for these patients to be managed by physiotherapists in vestibular rehabilitation. Vestibular rehabilitation services could improve access to psychological expertise through dedicated psychological input, more effective signposting and referral pathways, and better access to inter-professional support from psychologists and/or CBT practitioners in managing more complex patients. Physiotherapists requested tailored training and guidance to enhance their ability to manage patients with anxiety more effectively in vestibular rehabilitation.

Service user involvement in the coproduction of a mental health nursing metric: The Therapeutic Engagement Questionnaire.

Service users' involvement in mental health service research is increasingly acknowledged as important, yet, whilst involving users of mental health services as research participants is commonplace, seeking out their experience and indeed their "expertise" to facilitate the development of tools to be used within mental health services is in its infancy. This article describes the involvement and views of service users in the development of a nursing metric-the Therapeutic Engagement Questionnaire. It presents their role in the three stages of development: generation, statement reduction and authentication.

The experiences of detained mental health service users: issues of dignity in care.

BACKGROUND: When mental health service users are detained under a Section of the Mental Health Act (MHA), they must remain in hospital for a specific time period. This is often against their will, as they are considered a danger to themselves and/or others. By virtue of being detained, service users are assumed to have lost control of an element of their behaviour and as a result their dignity could be compromised. Caring for detained service users has particular challenges for healthcare professionals. Respecting the dignity of others is a key element of the code of conduct for health professionals. Often from the service user perspective this is ignored. METHODS: This paper reports on the experiences of 19 adult service users who were, at the time of interview, detained under a Section of the MHA. These service users had experienced coercive interventions and they gave their account of how they considered their dignity to be protected (or not), and their sense of self respected (or not). RESULTS: The service users considered their dignity and respect compromised by 1) not being 'heard' by staff members, 2) a lack of involvement in decision-making regarding their care, 3) a lack of information about their treatment plans particularly medication, 4) lack of access to more talking therapies and therapeutic engagement, and 5) the physical setting/environment and lack of daily activities to alleviate their boredom. CONCLUSIONS: Dignity and respect are important values in recovery and practitioners need time to engage with service user narratives and to reflect on the ethics of their practice.

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.

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

OBJECTIVE: To survey the level of disclosure of conception method within families of children conceived by conventional in vitro fertilization (IVF) or intracytoplasmic sperm injection (ICSI) and to examine the factors that might influence parental attitudes and plans for disclosure. DESIGN: In-depth questionnaire. SETTING: Participants recruited through fertility clinics in the United Kingdom. PATIENT(S): Parents of children aged 5 to 6 years conceived by IVF/ICSI (n = 181; 51% survey response rate). INTERVENTION(S): Mothers and fathers of IVF/ICSI-conceived children were sent questionnaires to complete and return in a postage-paid envelope. MAIN OUTCOME MEASURE(S): Responses to the questionnaire. RESULT(S): Most parents had told somebody about their child's method of conception, mostly close friends and family. Fewer (26% of mothers, 17% of fathers) had already discussed the child's mode of conception with their child. Fifty-eight percent of mothers and 57% of fathers intended to tell their child at some point. Sixteen percent of mothers and 21% of fathers were undecided. Four percent of 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. Twenty-nine percent of undecided fathers and 36% of undecided mothers stated that they would tell their child if appropriate, child-friendly explanatory literature were available. CONCLUSION(S): The majority of parents wish to tell their child about their conception by IVF/ICSI at some point but are unsure as to the most appropriate timing and method of disclosure. Fertility clinics might have a role to play in providing the necessary support. Child-friendly literature might be helpful.