The development and validation of a scale to measure the impact of Huntington's Disease on the quality of life of spousal carers.

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Social support in cyberspace: A content analysis of communication within a Huntington’s Disease online support group

Objective: Huntington’s Disease (HD) is an inherited disorder, characterised by a progressive degeneration of the brain. Due to the nature of the symptoms, the genetic element of the disease and the fact that there is no cure, HD patients and those in their support network often experience considerable stress and anxiety. With an expansion in Internet access, individuals affected by HD have new opportunities for information retrieval and social support. The aim of this study is to examine the provision of social support in messages posted to a HD online support group bulletin board. Methods: In total, 1313 messages were content analysed using a modified version of the Social Support Behaviour Code developed by Cutrona & Suhr (1992). Results: The analysis indicates that group members most frequently offered informational (56.2%) and emotional support (51.9%) followed by network support (48.4%) with esteem support (21.7%) and tangible assistance (9.8%) least frequently offered. Conclusion: This study suggests that exchanging informational and emotional support represents a key function of this online group. Practice implications: Online support groups provide a unique opportunity for health professionals to learn about the experiences and views of individuals affected by HD and explore where and why gaps may exist between evidence-based medicine and consumer behaviour and expectations

Ageing and quality of life in family carers of people with dementia being cared for at home: a literature review

Background: Despite the increasing older population providing care for family members with dementia at home, there is no consensus in the literature in terms of how caring impacts on their quality of life (QoL) and the association of the family carer's age with QoL outcomes. Aims: To explore the available literature investigating the QoL of older family carers (family carers aged > 60) and the association of family carers' age and QoL outcomes in a dementia context. Methods: A review of the literature to December 2013 was conducted using Embase-O VID, CINAL, Medline-OVID, Psyc INFO-OVID, Grey literature and the references of the included studies. Cross-sectional or prospective longitudinal studies published in English were eligible. The selection and appraisal processes were performed by two reviewers independently and the methodological quality was assessed by STROBE statement. Results: From the 12 selected studies, 4 were carried out with older family carers' samples and 8 associated the variable 'age' with QoL outcomes. Eight different instruments were used to assess family carers' QoL, however none were designed specifically for older people or older family carers. The mean age of the carers' samples ranged from 55.2 to 76.0 years old. Older family carers showed low levels of QoL and were often below the age-matched standard population. Carers' age was negatively correlated with QoL outcomes in most of the studies. Conclusion: Older people are increasingly involved with dementia care and family carer's advanced age was shown to be associated with low levels of QoL. Future research should investigate the QoL of older family carers separately and use QoL instruments containing older family carers' specific needs and perspectives of QoL. In planning care and support, primary health care practitioners should consider family carer's age group and their specific needs

Factor and reliability analysis of a brief scale to measure motivation to change lifestyle for dementia risk reduction in the UK: the MOCHAD-10.

Background: Modifying lifestyle risk factors for dementia is a public health priority. Motivation for change is integral to the modification of health-related risk behaviours. This study investigates the psychometric properties of the previously validated tool entitled ‘Motivation to Change Lifestyle and Health Behaviours for Dementia Risk Reduction Scale’ (MCLHB-DRR) for use in the UK. Methods: A sample of 3,948 individuals aged 50 and over completed the 27-item MCLHB-DRR online. The psychometric properties of the scale were explored via Exploratory Principal Axis Factoring (PAF) with Oblimin rotation. Confirmatory Factor Analysis (CFA) was used to confirm the factor structure using chi-square (χ2), the goodness-of-fit index (GFI), the comparative fit index (CFI), the root mean square error of approximation (RMSEA) and Root Mean Square Residual (RMR) as fit indices to evaluate the model fit. Internal consistency (Cronbach α) was measured for the final scale version. Results: Exploratory Factor Analysis (EFA) resulted in a parsimonious 10-item, two-factor structure (5 items each, factor loadings > 0.3) that explained 52.83% of total variance. Based on the Pattern Matrix, Factor 1 was labelled “Positive Cues to Action” and Factor 2 was labelled “Negative Cues to Action”. After addressing some errors in covariances, CFA showed a good fit where all fit indices were larger than 0.90 (GFI = 0.968, CFI = 0.938) and smaller than 0.08 (RMSEA = 0.072, RMR = 0.041). The standardized coefficients of Factor 1 and Factor 2 ranged from 0.30 to 0.73 and were all statistically significant (p < 0.001). The final scale showed moderate to high reliability scores (Factor 1 α = 0.809; Factor 2 α = 0.701; Overall α = 0.785). Conclusions: The new MOCHAD-10 (Motivation to Change Behaviour for Dementia Risk Reduction Scale) is a short, reliable and robust two-factor, 10-item clinical tool for use in preventative health care and research to evaluate motivation to change lifestyle for dementia risk reduction.Alzheimer’s Research UK (Midland) - Nottingham University

An electronic clinical decision support system for the assessment and management of suicidality in primary care

Background: Suicide is a global public health concern, but it is preventable. Increased contact with primary care before the suicide or attempted suicide raises opportunities for intervention and prevention. However, suicide assessment and management is an area that many General Practitioners (GPs) find particularly challenging. Previous research has indicated significant variability in how GPs understand, operationalise and assess suicide risk which subsequently has an impact on clinical decision making. Clinical Decision Support systems (CDSS) have been widely implemented across different healthcare settings, including primary care to support practitioners in clinical decision making. CDSS may reduce inconsistencies in the identification, assessment and management of suicide risk by GPs by guiding them through the consultation and generating a risk assessment plan that can be shared with a service user or with specialised mental health services. Objective: To co-develop and test with end users (e.g. GPs, primary care attendees, mental health professionals) an e-CDSS to support GPs in the identification, assessment and management of suicidality in primary care. Methods: An ongoing embedded mixed methods study with four phases: 1) Qualitative interviews with GPs to explore their views on the content, format and use of the e-CDSS; consultation with two service user advisory groups (people aged ≤ 25 and people aged ≥25) to inform the content of the e-CDSS including phrasing of items and clarity; 2) Participatory co-production workshops with GPs, service users and clinical experts in suicidality to determine the content and format of the e-CDDS; gain consensus of the relevance of items; establish content validity (CVI) and identify pathways to implementation, using the Consolidated Framework for Implementation Research; 3) Building the e-CDSS so that it guides the GP through a consultation and 4) Usability testing of the e-CDSS with GPs and service users in one primary care practice involving a non-live and a live stage. Conclusions: This study will be the first to explore the feasibility, acceptability and usability of electronic guided decision support system for use in primary care consultations for the improved assessment and management of suicidality

Social support in cyberspace: A content analysis of communication within a Huntington’s Disease online support group

Objective: Huntington’s Disease (HD) is an inherited disorder, characterised by a progressive degeneration of the brain. Due to the nature of the symptoms, the genetic element of the disease and the fact that there is no cure, HD patients and those in their support network often experience considerable stress and anxiety. With an expansion in Internet access, individuals affected by HD have new opportunities for information retrieval and social support. The aim of this study is to examine the provision of social support in messages posted to a HD online support group bulletin board. Methods: In total, 1313 messages were content analysed using a modified version of the Social Support Behaviour Code developed by Cutrona & Suhr (1992). Results: The analysis indicates that group members most frequently offered informational (56.2%) and emotional support (51.9%) followed by network support (48.4%) with esteem support (21.7%) and tangible assistance (9.8%) least frequently offered. Conclusion: This study suggests that exchanging informational and emotional support represents a key function of this online group.Practice implications: Online support groups provide a unique opportunity for health professionals to learn about the experiences and views of individuals affected by HD and explore where and why gaps may exist between evidence-based medicine and consumer behaviour and expectations

Informal carers’ experiences of caring for someone with Multiple Sclerosis: A photovoice investigation

ObjectivesThis study explores the lived experiences of carers of people with Multiple Sclerosis (MS), specifically in relation to their quality of life (QoL), through the use of images and narratives, with the aim of gaining a nuanced insight into the complex nature of QoL in the MS caregiving context.DesignReal‐time qualitative design using the photovoice method.MethodsTwelve MS carers (aged 30–73 years) took photographs of objects/places/events that represented enhancement or compromise to their QoL and composed written narratives for each photograph based on their experiences of caregiving. In total, 126 photographs and their corresponding narratives were analysed using content analysis.ResultsSeven inter‐related themes were identified. MS caregiving‐related challenges, sense of loss (e.g., loss of activities), emotional impact (e.g., feeling lonely), urge to escape, and sense of anxiety over the unpredictability of MS carer role were discussed in relation to the negative experiences that compromised their QoL. The themes precious moments (e.g., time spent with loved ones or hobbies) and helpful support (e.g., family and pets) encompassed participants’ positive experiences that enhanced their QoL.ConclusionsFindings demonstrated the multi‐faceted and complex nature of MS caregiver’s QoL and highlighted that although the experiences of MS carers were mostly negative, there were also some positive aspects to caregiving, that helped enhance carers’ QoL by ameliorating these negative experiences. These findings can be used to inform support programmes and enhance service provision for MS carers

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 semi-structured 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 thinkin