Aimee Aubeeluck

The Huntington’s Disease quality of life battery for carers: reliability and validity

Research into the experience of the Huntington Disease (HD) spousal carer has established that carers experience several unique obstacles within their care‐giving role. However, there is still a need to establish methodically the factors that impact on the HD spousal carers’ situation and ultimately their quality of life. The aim of this pilot study, which was a result of three previous exploratory studies, was to validate a HD‐specific quality‐of‐life (QoL) measure, the Huntington disease quality‐of‐life battery for carers (HDQoL‐C) for use (initially) with spousal carers of HD patients. Eighty‐seven HD spousal carers took part in the piloting of the HDQoL‐C to assess its reliability and validity as a tool for use within QoL research. Results established the HDQoL‐C as a multidimensional and psychometrically sound disease‐specific and subjective QoL assessment tool that incorporates the individual’s physical health, psychological state, level of independence, social relationships and personal beliefs. The HDQoL‐C demonstrates good internal consistency, test–re‐test reliability and congruent validity.

Perspectives of staff providing care at the end of life for people with progressive long-term neurological conditions

OBJECTIVE This article examines the views and opinions of staff from a larger study exploring the palliative and end-of-life care needs of patients with progressive long-term neurological conditions (PLTNC). METHOD Eighty staff, in a range of professions from three types of care services provided to people with PLTNC in England, took part in 14 focus groups and 3 individual interviews. Sites included six long-term residential neurological care centers, an inpatient service at an urban hospice, and a multi-disciplinary outpatient service for people with Huntingtons disease. RESULTS Findings show a concordance between the views of staff from across the three types of participating services. Staff placed particular emphasis on teamwork, support from community-based resources, and developing rapport with patients in order to provide high quality palliative and end-of-life care. All staff perceived that identifying the dying phase was a particular challenge, sometimes resulting in patients being admitted to hospital at the end of life in contravention of their expressed advance wishes for place of death. SIGNIFICANCE OF RESULTS This article adds to a small body of literature that seeks staff views and opinions about the rewards and challenges of providing palliative and end-of-life care to people with complex needs arising from long-term conditions. Although this article focuses primarily on the challenges of caring for people with neurological conditions, many issues reported are of wider relevance for the delivery of palliative and end-of-life care in other conditions.

The Menstrual Joy Questionnaire Items Alone Can Positively Prime Reporting of Menstrual Attitudes and Symptoms

Chrisler, Johnston, Champagne, and Preston (1994) reported that the title of the Menstrual Joy Questionnaire (MJQ) could prime participants to report positive changes on the Menstrual Distress Questionnaire (MDQ) and greater endorsement of “menstruation as a natural event” on the Menstrual Attitudes Questionnaire (MAQ). This study is a partial replication in which the questionnaire titles were removed in order to see if the MJQ items alone could replicate these priming effects. One hundred women participated: half completed the MJQ and the MAQ in the first week followed by the MDQ and the MAQ the second. The other half completed the MDQ and MAQ first followed by the MJQ and MAQ. Those who completed the MJQ first scored significantly higher on the “menstruation as a natural event” subscale of the MAQ. They also scored higher on the arousal subscale of the MDQ, although this trend did not quite reach significance. These findings suggest that the MJQ items alone are sufficient to produce positive priming of menstrual symptom reporting.

Caregiving in multiple sclerosis and quality of life: A meta-synthesis of qualitative research.

Objective: The lack of adequate conceptualisation and operationalisation of quality of life (QoL) limits the ability to have a consistent body of evidence to improve QoL research and practice in informal caregiving for people with multiple sclerosis (MS). Thus, we conducted a meta-synthesis of qualitative research to improve the conceptual understanding of the experiences of MS carers and to identify factors that affect carers’ QoL. Design: Systematic searches of five electronic databases yielded 17 qualitative studies which were synthesised using the principles of meta-ethnography. Results: The synthesis resulted in nine inter-linking themes: Changes and losses; challenges revolving around MS; caregiving demands; burden of care; future concerns; external stressors; experiences of support; strategies used in managing the caregiving role; and motivating factors. Our findings suggest that MS carers can have both positive and negative experiences which may bring challenges and rewards to the carers. Conclusion: We present a proposed QoL model for MS caregiving which can be used to inform the development of interventions for MS carers to improve their QoL. However, further empirical research is needed to examine the utility of this model and to explore the concept of QoL in MS carers in more detail.

Gaining and maintaining consent when capacity can be an issue: a research study with people with Huntington's disease

This paper recognizes the complexity of the debate on informed consent and discusses the importance of the ongoing process of consent for people affected by Huntingtons disease (HD). Although written information may not be the most appropriate form of obtaining informed consent in qualitative research, it remains an important part of the ethical approval process for health research in the UK. This paper draws on a study in which the information sheet and consent form were specifically designed to help obtain consent from people who may be impaired by the cognitive and physical effects of HD. The forms were developed by drawing on expert opinion and relevant literature and fall in line with recommendations from the Mental Capacity Act 2005 to encourage people to make their own decisions. The paper describes the feasibility of a method for obtaining consent as an ongoing process with patients affected by HD using information sheets and consent forms specifically designed for people with potential cognitive and/or physical impairments. In conclusion, this paper adds a pragmatic approach to the debate on informed consent by describing the development of a written information sheet and consent form being used in a current social research study. Particular emphasis is placed on the importance of written information being adapted according to the needs of potential participants.

A Different Drum An Arts-Based Educational Program

The authors in this article describe the background and development of a drama-based educational initiative for student nurses in the United Kingdom (UK) Forty-five student nurses from Adult and Mental-Health fields of study took part in a one-day experience where they worked alongside individuals with learning disabilities to produce art, dance, and drama sketches. The workshop was evaluated using a validated questionnaire to explore the experience from the students’ perspectives. Students felt challenged as they were pushed beyond the comfort zone of a regular classroom environment. Moreover, a greater understanding of core concepts such as empathy, dignity, stigma, and social exclusion were identified as key outcomes of the experience. The focus for future work in this field is to explore the ways in which arts-based learning and teaching initiatives can be developed within mainstream curricula.

Do student nurses experience Imposter Phenomenon? An international comparison of Final Year Undergraduate Nursing Students readiness for registration.

BACKGROUND The transition shock or Imposter Phenomena sometimes associated with moving from student to Registered Nurse can lead to feelings of self-doubt and insecurity especially with the increased expectations and responsibilities that registration brings. AIM The aim of this study was to examine the extent at which imposter phenomenon is evident in four final year nursing student cohorts in Australia, New Zealand and the UK. DESIGN A survey design. SETTINGS The study took place at four higher education institutes - two metropolitan campuses and two regional campuses between October 2014 - February 2015 in Australia, New Zealand and the UK. A sample of 223 final year nursing students undertaking nationally accredited nursing programmes were approached. RESULTS Each cohort exhibited mild to moderate feelings of Imposter Phenomena. A positive weak correlation between imposter phenomena and preparedness for practice was found. The New Zealand cohort scored higher than both the Australian and UK cohorts on both feelings of imposterism and preparedness for practice. CONCLUSIONS Nursing students possess internalized feelings which suggest their performance and competence once qualified could be compromised. There is some speculation that the respective curriculums may have some bearing on preparing students for registration and beyond. It is recommended that educational programmes designed for this student cohort should be mindful of this internal conflict and potential external hostility.

Further evidence of reliability and validity of the Huntington’s disease quality of life battery for carers: Italian and French translations

BackgroundExisting research suggests that family caregivers of persons with Huntington’s disease (HD) face a distinct series of problems, linked to the complex nature of the disease. Aubeeluck and Buchanan (Clin Genet, 71(5):434–445, 2007) developed and validated a disease-specific measure used to explore caregivers quality of life and assess the efficacy of therapeutic interventions. This current study builds on this research through the validation of French and Italian translations of the Huntington’s disease quality of life battery for carers (HDQoL-C).MethodA total of 301 family carers completed the HDQoL-C. Participants were recruited through the “Euro-HDB” study which is measuring the burden in HD across Europe and the USA.ResultsFactor analysis demonstrated good internal consistency, reliability and congruent validity. Carers who cared for patients with less clinically severe symptoms reported significantly better QoL than carers of patients with more clinically severe symptoms.DiscussionFindings indicate the HDQoL-C is multi-lingual, multi-cultural and easily applicable in other languages.

In search of critical thinking in psychology: an exploration of student and lecturer understandings in higher education

This qualitative study of understandings of critical thinking in higher education aimed to identify themes that could help to demystify critical thinking and inform its more explicit incorporation in the psychology curriculum. Data collected from focus groups with 26 undergraduate psychology students and individual semistructured interviews with 4 psychology lecturers were examined using thematic analysis. The same key themes were identified from both student and lecturer data: ‘vague beginnings’, ‘conceptualizations’, ‘development and transitions’, and ‘learning strategies’. Both students and lecturers described critical thinking as implicit knowledge that develops through social interactions. The findings indicate the importance of explicit discussion about critical thinking, and could be used to inform the design and delivery of instructional methods to promote critical thinking.

Development of Reading Proficiency in English by Bilingual Children and Their Monolingual Peers

The semantic, syntactic, and graphophonic cueing techniques employed by 55 bilingual children and 39 monolingual peers when reading aloud in English were identified through miscue analysis. In contrast to earlier research in 1999 by Cline and Cozens no significant differences were found between the two groups on any of the techniques. Both bilingual and monolingual readers consistently used more graphophonic cues than syntactic or semantic cues but not significantly so. The authors discuss possible extraneous variables which may account in part for this unexpected result.