Training Genetic Counsellors to Deliver an Innovative Therapeutic Intervention: their Views and Experience of Facilitating Multi-Family Discussion Groups.

Innovations in clinical genetics have increased diagnosis, treatment and prognosis of inherited genetic conditions (IGCs). This has led to an increased number of families seeking genetic testing and / or genetic counselling and increased the clinical load for genetic counsellors (GCs). Keeping pace with biomedical discoveries, interventions are required to support families to understand, communicate and cope with their Inherited Genetic Condition. The Socio-Psychological Research in Genomics (SPRinG) collaborative have developed a new intervention, based on multi-family discussion groups (MFDGs), to support families affected by IGCs and train GCs in its delivery. A potential challenge to implementing the intervention was whether GCs were willing and able to undergo the training to deliver the MFDG. In analysing three multi-perspective interviews with GCs, this paper evaluates the training received. Findings suggests that MFDGs are a potential valuable resource in supporting families to communicate genetic risk information and can enhance family function and emotional well-being. Furthermore, we demonstrate that it is feasible to train GCs in the delivery of the intervention and that it has the potential to be integrated into clinical practice. Its longer term implementation into routine clinical practice however relies on changes in both organisation of clinical genetics services and genetic counsellors' professional development.

Visual impairment following stroke: do stroke patients require vision assessment?

BACKGROUND: the types of visual impairment followings stroke are wide ranging and encompass low vision, eye movement and visual field abnormalities, and visual perceptual difficulties. OBJECTIVE: the purpose of this paper is to present a 1-year data set and identify the types of visual impairment occurring following stroke and their prevalence. METHODS: a multi-centre prospective observation study was undertaken in 14 acute trust hospitals. Stroke survivors with a suspected visual difficulty were recruited. Standardised screening/referral and investigation forms were employed to document data on visual impairment specifically assessment of visual acuity, ocular pathology, eye alignment and movement, visual perception (including inattention) and visual field defects. RESULTS: three hundred and twenty-three patients were recruited with a mean age of 69 years [standard deviation (SD) 15]. Sixty-eight per cent had eye alignment/movement impairment, 49% had visual field impairment, 26.5% had low vision and 20.5% had perceptual difficulties. CONCLUSIONS: of patients referred with a suspected visual difficulty, only 8% had normal vision status confirmed on examination. Ninety-two per cent had visual impairment of some form confirmed which is considerably higher than previous publications and probably relates to the prospective, standardised investigation offered by specialist orthoptists. However, under-ascertainment of visual problems cannot be ruled out.

The use of assessment rubrics to enhance feedback in higher education: An integrative literature review.

OBJECTIVE: To explore the literature relating to the use of rubrics in Higher Education. DESIGN: A systematic search using three databases was undertaken, the question used to guide the search strategy was: What are the benefits and challenges of using rubrics as part of the assessment process in Higher Education? DATA SOURCES: Three electronic databases were searched: British Education Index, Education Resources Information Centre and the Cumulative Index to Nursing and Allied Health Literature. REVIEW METHODS: The review utilised an integrative approach to the retrieval and appraisal of the research. As the papers retrieved used different methodologies to explore the use of rubrics they were analysed using either thematic analysis or narrative synthesis. RESULTS: Fifteen papers were identified that met the inclusion and exclusion criteria for the review, these spanned a range of disciplines including education, medicine and design. Four main themes related to the use of rubrics were identified: the reliability and validity of the rubric, student performance, students' perceptions of the rubric and the implementation of the rubric. CONCLUSIONS: Student self-assessment, self-regulation and understanding of assessment criteria were all found to be enhanced by the use of rubrics. However students also reported that rubrics could be restrictive and student stress related to assessments could be increased. Student involvement in the design and implementation of a rubric was identified as being critical to their success. Rubrics were judged favourably by the studies reviewed in this paper, however they were found to be most effective when used as part of an overall assessment strategy that was co-created with students.

Developing an intervention to facilitate family communication about inherited genetic conditions, and training genetic counsellors in its delivery.

Many families experience difficulty in talking about an inherited genetic condition that affects one or more of them. There have now been a number of studies identifying the issues in detail, however few have developed interventions to assist families. The SPRinG collaborative have used the UK Medical Research Council's guidance on Developing and Evaluating Complex Interventions, to work with families and genetic counsellors (GCs) to co-design a psycho-educational intervention to facilitate family communication and promote better coping and adaptation to living with an inherited genetic condition for parents and their children (<18 years). The intervention is modelled on multi-family discussion groups (MFDGs) used in psychiatric settings. The MFDG was developed and tested over three phases. First focus groups with parents, young people, children and health professionals discussed whether MFDG was acceptable and proposed a suitable design. Using evidence and focus group data, the intervention and a training manual were developed and three GCs were trained in its delivery. Finally, a prototype MFDG was led by a family therapist and co-facilitated by the three GCs. Data analysis showed that families attending the focus groups and intervention thought MFDG highly beneficial, and the pilot sessions had a significant impact on their family' functioning. We also demonstrated that it is possible to train GCs to deliver the MFDG intervention. Further studies are now required to test the feasibility of undertaking a definitive randomised controlled trial to evaluate its effectiveness in improving family outcomes before implementing into genetic counselling practice.

The experience of a good day: a phenomenological study to explain a good day as experienced by a newly qualified RN.

The main aim of this study was to provide an explanation of the newly qualified nurse's experience and description of a good day. Secondly it sought to provide an explanation of how a good day made them feel about nursing. By identifying the main components of a good day and what positively effects the experience of a working day for a newly qualified nurse, it may be possible to move towards an increase in the occurrence of the components and emulation of a good day. While there is evidence to suggest that positive experiences within nursing increase job satisfaction and aid retention to the profession, the experience of a good day and what constitutes a good day for a newly qualified nurse has not been explored. The main components of a good day have not been identified and no work has been carried out to ascertain how these days make nurses feel about their chosen career. The aims of the study lent themselves to a phenomenological descriptive approach to research, the objective of which is identification of the essence of behaviour. Eight newly qualified nurses agreed to take part in the research. Each participant was interviewed twice, and in addition one group interview was arranged to clarify themes. The interviews, which were audio taped, were informal allowing the participants to answer in an open and unstructured manner. Once completed, all the tapes were transcribed and immersion and analysis of the data led to 5 themes naturally emerging as the components of a good day. The identified themes were, doing something well, good relationships with patients, feeling that you've achieved something, getting the work done and you need team work. In addition, although not a theme of a good day but of great importance was the description of 'that wonderful feeling at the end of a good day'. These themes contributed to feelings of job satisfaction and the pleasure of nursing. More specifically the concept of knowing the patient both from a personal level and knowing about their care and condition has been identified as a main component of a good day. This knowing the patient had a knock on effect in that when this was part of the day it was easier to prioritise and get the work done. These nurses were striving to develop a level of care and competency and, unlike expert nurses, did not have vast experience and knowledge to underpin their actions. They need to ensure that all levels of knowledge are addressed before they can carry out care. Additionally the team dynamics and the way the team work together had a significant effect on the day.

The experience of a good day: a phenomenological study to explain a good day as experienced by a newly qualified RN.

The main aim of this study was to provide an explanation of the newly qualified nurse's experience and description of a good day. Secondly, it sought to provide an explanation of how a good day made them feel about nursing. By identifying the main components of a good day and what positively effects the experience of a working day for a newly qualified nurse, it may be possible to move towards an increase in the occurrence of the components and emulation of a good day. While there is evidence to suggest that positive experiences within nursing increase job satisfaction and aid retention to the profession, the experience of a good day and what constitutes a good day for a newly qualified nurse has not been explored. The main components of a good day have not been identified and no work has been carried out to ascertain how these days make nurses feel about their chosen career. The aims of the study lent themselves to a phenomenological descriptive approach to research, the objective of which is identification of the essence of behaviour. Eight newly qualified nurses agreed to take part in the research. Each participant was interviewed twice, and in addition one group interview was arranged to clarify themes. The interviews, which were audio taped, were informal allowing the participants to answer in an open and unstructured manner. Once completed, all the tapes were transcribed and immersion and analysis of the data led to 5 themes naturally emerging as the components of a good day. The identified themes were, doing something well, good relationships with patients, feeling that you've achieved something, getting the work done and you need team work. In addition, although not a theme of a good day but of great importance was the description of 'that wonderful feeling at the end of a good day'. These themes contributed to feelings of job satisfaction and the pleasure of nursing. More specifically the concept of knowing the patient both from a personal level and knowing about their care and condition has been identified as a main component of a good day. This knowing the patient had a knock on effect in that when this was part of the day it was easier to prioritize and get the work done. These nurses were striving to develop a level of care and competency and, unlike expert nurses, did not have vast experience and knowledge to underpin their actions. They need to ensure that all levels of knowledge are addressed before they can carry out care. Additionally, the team dynamics and the way the team work together had a significant effect on the day.

Infection prevention as "a show": a qualitative study of nurses' infection prevention behaviours.

BACKGROUND: Control of infection and prevention of healthcare associated infections is an ongoing issue worldwide. Yet despite initiatives and strategies to reduce the burden that these infections cause, healthcare workers' practice is still reported as suboptimal and these infections persist. Much of the research to date has primarily focused on predicting infection prevention behaviours and factors associated with guideline compliance. While this has given valuable insight, an investigation aiming to understand and explain behaviours that occur in everyday practice from the perspective of the actors themselves may hold the key to the challenges of effecting behaviour change. This study questioned "How can nurses' infection prevention behaviour be explained?" This paper presents one of three identified themes 'Rationalising dirt-related behaviour'. DESIGN: This interpretative qualitative study uses vignettes, developed from nurses' accounts of practice, to explore nurses' reported infection prevention behaviours. PARTICIPANTS: Registered nurses working in an acute hospital setting and had been qualified for over a year. They were recruited while studying part-time at a London University. METHODS: Twenty semi-structured interviews were undertaken using a topic guide and vignettes. Interviews were transcribed verbatim and analysed using the framework method. RESULTS: The findings demonstrate that participants were keen to give a good impression and present themselves as knowledgeable practitioners, although it was evident that they did not always follow procedure and policy. They rationalised their own behaviour and logically justified any deviations from policy. Deviations in others were criticised as irrational and explained as superficial and part of a 'show' or display. However, participants also gave a presentation of themselves: a show or display that was influenced by the desire to protect self and satisfy patient scrutiny. CONCLUSIONS: This study contributes to the identification and explanation of nurses' infection prevention behaviours which are considered inappropriate or harmful. Behaviour is multifaceted and complex, stemming from a response to factors that are outside a purely 'scientific' understanding of infection and not simply understood as a deficit in knowledge. This calls for educational interventions that consider beliefs, values and social understanding of dirt and infection.

A prospective profile of visual field loss following stroke: prevalence, type, rehabilitation, and outcome.

AIMS: To profile site of stroke/cerebrovascular accident, type and extent of field loss, treatment options, and outcome. METHODS: Prospective multicentre cohort trial. Standardised referral and investigation protocol of visual parameters. RESULTS: 915 patients were recruited with a mean age of 69 years (SD 14). 479 patients (52%) had visual field loss. 51 patients (10%) had no visual symptoms. Almost half of symptomatic patients (n = 226) complained only of visual field loss: almost half (n = 226) also had reading difficulty, blurred vision, diplopia, and perceptual difficulties. 31% (n = 151) had visual field loss as their only visual impairment: 69% (n = 328) had low vision, eye movement deficits, or visual perceptual difficulties. Occipital and parietal lobe strokes most commonly caused visual field loss. Treatment options included visual search training, visual awareness, typoscopes, substitutive prisms, low vision aids, refraction, and occlusive patches. At followup 15 patients (7.5%) had full recovery, 78 (39%) had improvement, and 104 (52%) had no recovery. Two patients (1%) had further decline of visual field. Patients with visual field loss had lower quality of life scores than stroke patients without visual impairment. CONCLUSIONS: Stroke survivors with visual field loss require assessment to accurately define type and extent of loss, diagnose coexistent visual impairments, and offer targeted treatment.

Profile of Gaze Dysfunction following Cerebrovascular Accident.

Aim. To evaluate the profile of ocular gaze abnormalities occurring following stroke. Methods. Prospective multicentre cohort trial. Standardised referral and investigation protocol including assessment of visual acuity, ocular alignment and motility, visual field, and visual perception. Results. 915 patients recruited: mean age 69.18 years (SD 14.19). 498 patients (54%) were diagnosed with ocular motility abnormalities. 207 patients had gaze abnormalities including impaired gaze holding (46), complete gaze palsy (23), horizontal gaze palsy (16), vertical gaze palsy (17), Parinaud's syndrome (8), INO (20), one and half syndrome (3), saccadic palsy (28), and smooth pursuit palsy (46). These were isolated impairments in 50% of cases and in association with other ocular abnormalities in 50% including impaired convergence, nystagmus, and lid or pupil abnormalities. Areas of brain stroke were frequently the cerebellum, brainstem, and diencephalic areas. Strokes causing gaze dysfunction also involved cortical areas including occipital, parietal, and temporal lobes. Symptoms of diplopia and blurred vision were present in 35%. 37 patients were discharged, 29 referred, and 141 offered review appointments. 107 reviewed patients showed full recovery (4%), partial improvement (66%), and static gaze dysfunction (30%). Conclusions. Gaze dysfunction is common following stroke. Approximately one-third of patients complain of visual symptoms, two thirds show some improvement in ocular motility.

Reading difficulty after stroke: ocular and non ocular causes.

BACKGROUND: Ocular causes of reading impairment following stroke include visual field loss, eye movement impairment and poor central vision. Non ocular causes may include cognitive errors or language impairment. AIM: The purpose of this study was to identify all patients referred with suspected visual impairment who had reported reading difficulty to establish the prevalence of ocular and non ocular causes. METHODS: Prospective, multicentre, observation study with standardised referral and assessment forms across 21 sites. Visual assessment included visual acuity measurement, visual field assessment, ocular alignment, and movement and visual inattention assessment. Multicentre ethical approval and informed patient consent were obtained. RESULTS: A total of 915 patients were recruited, with a mean age of 69·18 years (standard deviation 14·19). Reading difficulties were reported by 177 patients (19·3%), with reading difficulty as the only symptom in 39 patients. Fifteen patients had normal visual assessment but with a diagnosis of expressive or receptive aphasia. Eight patients had alexia. One hundred and nine patients had visual field loss, 85 with eye movement abnormality, 27 with low vision and 39 patients with visual perceptual impairment. Eighty-seven patients had multiple ocular diagnoses with combined visual field, eye movement, low vision or inattention problems. All patients with visual impairment were given targeted treatment and/or advice including prisms, occlusion, refraction, low vision aids and scanning exercises. CONCLUSIONS: Patients complaining of reading difficulty were mostly found to have visual impairment relating to low vision, eye movement or visual field loss. A small number were found to have non ocular causes of reading difficulty. Treatment or advice was possible for all patients with visual impairment.