Psychosocial adjustment in adolescents with a parent with multiple sclerosis

Previous research has shown that children with a parent with a chronic medical condition may face psychosocial difficulties. This thesis presents a series of studies to explore how children adjust to their parents’ Multiple Sclerosis (MS).Study 1: A systematic review of the literature showed a number of factors linked to children's adjustment and also that adolescents might be at increased risk of psychosocial problems compared to younger children with a parent with MS.Study 2: Following the systematic review, a qualitative interview study, is presented, with 15 adolescents with a parent with MS which showed how adolescents view their increased responsibilities and also the importance of the parent without MS to provide practical and emotional support.Study 3: Mixed methods were used in order to develop a questionnaire (Perceptions of Parental Illness Questionnaire, PPIQ) to measure adolescents’ beliefs about their parents’ MS. To assess the psychometric properties of the newly developed questionnaire, 104 adolescents completed the PPIQ together with standardised measures of emotional and behavioural adjustment and illness-related impairment. The PPIQ appeared to be valid and reliable.Study 4: Finally, the data of the questionnaire development study was used in a longitudinal design study in which 56 parents with MS, 40 partners without MS and 75 adolescent children were included. The findings showed that parents’ anxiety and depression symptoms, parents' emotional expression and adolescents' views about MS were associated with adolescents' adjustment. MS characteristics (e.g. MS severity, type, time since diagnosis, relapses) and adolescents' reports on parent-adolescent communication were not associated with their adjustment.Family environment and adolescents’ illness beliefs are important factors to be incorporated in future interventions to support adolescents’ adjustment to parental MS

Assessment of the point-of-care Cholestech Lipid Analyser for lipid screening in Aboriginal communities

Cardiovascular disease is the leading cause of mortality in Aboriginal Australians. Screening for cardiovascular disease risk factors, notably elevated blood lipids, is urgently needed. The small portable Cholestech machine (Point-of-Care Diagnostics) can enzymatically measure total cholesterol, triglyceride and HDL cholesterol (without the prior need for precipitation of other lipoproteins)on 35 microlitres of capillary or veinous whole blood in under 5 minutes. It also calculates LDL cholesterol. Its suitability for use in Aboriginal communities was assessed. With its simple operation, fully automated nature, sound analytic performance and ability to produce a full lipid profile in under 5 minutes, the Cholestech would be suitable for the Aboriginal health care setting

“It feels like someone is hammering my feet”: Understanding pain and its management from the perspective of people with Multiple Sclerosis

Background: Pain affects around 63% of people with multiple sclerosis (pwMS). Biomedical treatments demonstrate limited efficacy. More research is needed to understand pain from the individual’s perspective in order to better inform a patient-centred approach that improves engagement, self-management and outcome. Objective: The objective of this paper is to explore pwMS’ experience and responses to pain, and their perspectives on pain management. Methods: Twenty-five in-depth, semi-structured telephone interviews were conducted. Interviews were audiotaped, transcribed and analysed using an inductive thematic analysis approach with elements of grounded theory. Results: Key themes included vivid descriptions of pain and beliefs that pain is unpredictable, a sign of damage and may worsen. Anger was a common emotional response. Two dominant pain management themes emerged: one related to pain reduction and another to acceptance. Those focusing on pain reduction appeared to engage in cycles in which they struggled with symptoms and experienced continued distress. Conclusion: Findings identify pain-related beliefs, emotional reactions and disparate pain-management attitudes. All may influence pwMS’ responses to pain and what they ask of their clinicians. Uncovering pwMS’ personal beliefs about pain, and introducing a broader biopsychosocial understanding of pain in the clinical context, may provide opportunities to rectify potentially unhelpful management choices and enhance pain acceptance

Development and initial validation of the Perceptions of Parental Illness Questionnaire (PPIQ)

The Perceptions of Parental Illness Questionnaire was developed based on interviews with 15 adolescents with a parent with multiple sclerosis and refined using cognitive interviews. In total, 104 adolescents with a parent with multiple sclerosis then completed the Perceptions of Parental Illness Questionnaire and adjustment measures at two time points 6 months apart. Principal component analysis resulted in 11 Perceptions of Parental Illness Questionnaire sub-scales. Mixed-effect models showed that adolescents’ perceptions of parental multiple sclerosis at baseline rather than disease severity were associated with their psychosocial well-being 6 months later. The results indicate that Perceptions of Parental Illness Questionnaire may be a reliable and valid measure of adolescents’ representations of parents’ multiple sclerosis. Further studies are needed to replicate these findings with other illness groups. </jats:p

Evaluation of the Choices for Wellbeing project

The relationship between mental health, self-esteem and unemployment is well established. Emerging research suggests that interventions such as Cognitive Behavioural Therapy (CBT) can counter the negative effects of unemployment and may improve re-employment. This study evaluated the effectiveness of a manual-based programme, which combines CBT with job skills training, in improving the psychological health and job- seeking skills of unemployed individuals within the UK. One hundred and nine unemployed individuals, suffering mild to moderate mental health problems, were referred to the programme. Of these, 47 completed the programme and 32 attended follow-up. The impact of the manualised course was evaluated using a randomised control trial with a waiting list control. On completion of the programme, participants showed improvements in mental health, self- esteem and job-search self-efficacy as well as a reduction in the occurrence of negative automatic thoughts. Twenty participants gained employment and improvements persisted at follow-up. Considering the initial levels of psychological distress and mental health problems among the unemployed sample, the need for adequate service provision for the unemployed is recommended.<br/

Table_2_Key demographics and psychological skills associated with adjustment to progressive Multiple Sclerosis early in the diagnosis.docx

Background/purposeBeing diagnosed with a progressive type of multiple sclerosis (MS) has been associated with worse psychological outcomes compared to relapsing-remitting type. Previous studies of adjustment to MS have primarily focused on relapsing-remitting type MS. The present study aims to examine psychological adjustment for people newly diagnosed with progressive multiple sclerosis.MethodsThis was a multicenter cross-sectional survey of 189 people newly diagnosed with progressive MS. A composite measure of psychological adjustment was created from questionnaires measuring psychological distress, positive affect, perceived-stress, life satisfaction and self-concept. Predictor variables included coping strategies, social support, relationship with partner, psychological vulnerability, MS-related beliefs, and responses to symptoms. Data were analysed using a regularised regression model to indicate which group of all variables are associated with adjustment.ResultsPeople who were older (b = 0.17(0.07), p = 0.02), in employment (b = 0.40 (0.17), p = 0.01), and with lower illness severity (b = −0.24 (0.08), p = 0.001) showed better adjustment. Based on a Lasso regression, the most important psychological and demographic variables associated with lower adjustment (out-of-sample cross-validation R2 = 62.6%) were lower MS self-efficacy and higher avoidance, cognitive vulnerability, embarrassment avoidance, conflict, helplessness, and secondary progressive MS type.Conclusions and implicationsHelping newly diagnosed people to find ways to tolerate anxiety-causing situations by encouraging acceptance may help people adjust to progressive MS by lowering their avoidance. Further, building confidence in managing the illness and addressing relationship issues are key focus areas in psychological interventions for people with progressive multiple sclerosis.</p