Angeliki Bogosian

Psychosocial adjustment in children and adolescents with a parent with multiple sclerosis: a systematic review

Objective: This systematic review explored the potential impact of parental multiple sclerosis on their offspring. It considered adjustment to parental multiple sclerosis at different developmental stages and the factors associated with good versus poor adjustment. Data sources: MEDLINE, EMBASE, PsycINFO, CINAHL and Web of Science were searched for studies on children with a parent with multiple sclerosis. Inclusion and exclusion criteria were formulated. Hand-searching journals and reference lists, contacting authors and multiple sclerosis societies for additional unpublished papers complemented the searches. Review methods: Twenty studies that satisfied the inclusion criteria were included. The research articles were ranked according to a quality assessment checklist and were categorized as good, medium or poor quality. Results: The review found good evidence to suggest that parental multiple sclerosis has a negative impact on children’s social and family relationships and their psychological well-being. The review also identified potential factors associated with poor adjustment. These factors included parental negative emotions, increased illness severity, family dysfunction, children’s lack of knowledge about the illness and lack of social support. Adolescent children also seemed to be more at risk for psychosocial problems than school-age children. Conclusions: There is good evidence that parental multiple sclerosis has a negative psychosocial impact on children, especially on adolescents.

Experiences of partners of people in the early stages of multiple sclerosis

Background Partners of people with multiple sclerosis are known to experience a heavy physical and psychological burden. However, little research has explored, in detail, the partners’ experience in the first years after diagnosis. The aim of this study was to explore and describe the experiences of partners of people who are in the relatively early stages of multiple sclerosis. Methods Fifteen semi-structured telephone interviews were conducted to assess partners’ concerns and difficulties. Data were audio-taped, transcribed, and analysed using an inductive thematic analysis. Results Key themes were being unsure of what the future might hold and feeling helpless and out of control. Furthermore, partners reported that other people could not understand and support them, which led to a feeling of social isolation. Conclusion The research illustrates the disruptive impact that MS has on partners’ lives and highlights the need for support to focus on partners’ needs even in early stages of the disease.

Distress improves after mindfulness training for progressive MS: A pilot randomised trial

Background: Mindfulness-based interventions have been shown to effectively reduce anxiety, depression and pain in patients with chronic physical illnesses. Objectives: We assessed the potential effectiveness and cost-effectiveness of a specially adapted Skype distant-delivered mindfulness intervention, designed to reduce distress for people affected by primary and secondary progressive MS. Methods Forty participants were randomly assigned to the eight-week intervention (n = 19) or a waiting-list control group (n = 21). Participants completed standardised questionnaires to measure mood, impact of MS and symptom severity, quality of life and service costs at baseline, post-intervention and three-month follow-up. Results: Distress scores were lower in the intervention group compared with the control group at post-intervention and follow-up (p < 0.05), effect size −0.67 post-intervention and −0.97 at follow-up. Mean scores for pain, fatigue, anxiety, depression and impact of MS were reduced for the mindfulness group compared with control group at post-therapy and follow-up; effect sizes ranged from −0.27 to −0.99 post-intervention and −0.29 to −1.12 at follow-up. There were no differences in quality-adjusted life years, but an 87.4% probability that the intervention saves on service costs and improves outcome. Conclusions: A mindfulness intervention delivered through Skype video conferences appears accessible, feasible and potentially effective and cost-effective for people with progressive MS.

Towards a better understanding of MS pain: A systematic review of potentially modifiable psychosocial factors

OBJECTIVE Pain is a common symptom of Multiple Sclerosis (MS). Biomedical treatments achieve only modest reductions in pain severity suggesting that this approach may be too narrow. The aim of this systematic review was to assess evidence for associations between modifiable psychosocial factors and MS pain severity and pain interference and use this evidence to develop a preliminary biopsychosocial model of MS pain. METHODS Empirical studies of pain in MS utilising standardised pain severity and pain interference measures were included. Online databases (Cochrane, PsychInfo, EMBASE, CINAHL, Medline, Web of Science and World Cat) and reference sections of included articles were searched, and corresponding authors contacted to identify unpublished studies. Information about design, sample size, MS type, time since diagnosis, psychosocial and pain measures and key findings were extracted. Thirty-one studies were assessed for quality and a narrative synthesis was conducted. RESULTS Similar to primary chronic pain, most studies reported small to medium associations between several psychosocial factors and pain severity and interference. Pain catastrophizing showed consistently strong associations with pain interference. Preliminary findings revealed a strong correlation between pain acceptance and pain interference. However, fear-avoidance appeared less important in MS, and other forms of behavioural avoidance were not explored. CONCLUSIONS A preliminary model of MS pain outlining specific psychosocial factors is presented with a conceptual formulation from both traditional, and contextual, cognitive-behavioural perspectives. Pain catastrophizing, acceptance, and endurance, as opposed to fear avoidance, responses are highlighted as potentially important treatment targets in MS, and directions for future research are outlined.

An evaluation of the choices for well-being 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.

Parents’ expressed emotion and mood, rather than their physical disability are associated with adolescent adjustment: a longitudinal study of families with a parent with multiple sclerosis

Objective: This study investigated the impact of the severity of parental multiple sclerosis, parents’ expressed emotion and psychological well-being on offspring’s psychological difficulties. Design: A longitudinal study including baseline and 6-month follow-up data collected from parents and children. Subjects: Adolescents (n=75), their parents with multiple sclerosis (n=56) and the partner without multiple sclerosis (n=40). Main measures: Parents completed the Hospital Anxiety and Depression Scale and the Five Minutes Speech Sample, a standardised interview of expressed emotion towards their child. Parents with multiple sclerosis also completed the Expanded Disability Status Scale, a measure of illness severity. Adolescents completed the Strength and Difficulties Questionnaire, a self-report measure of psychological difficulties. Results: Higher depression scores of the parents with multiple sclerosis at baseline correlated with increased adolescents’ internalising symptoms at 6-month follow-up (γdep=0.31, P=.004). Higher expressed emotion scores of parents with multiple sclerosis at baseline were associated with increased adolescent externalising symptoms at 6-month follow-up (γEE=4.35, P=.052). There was no direct effect of severity, duration or type of multiple sclerosis on adolescents’ adjustment at baseline or follow-up. Conclusions: Emotional distress and expressed emotion in parents with multiple sclerosis, rather than the severity and type of multiple sclerosis had an impact on adolescents’ psychological difficulties.

‘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

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.

Adjustment modes in the trajectory of progressive multiple sclerosis: a qualitative study and conceptual model

Objective: We examined cognitive and behavioural challenges and adaptations for people with progressive multiple sclerosis (MS) and developed a preliminary conceptual model of changes in adjustment over time. Design: Using theoretical sampling, 34 semi-structured interviews were conducted with people with MS. Participants were between 41 and 77 years of age. Thirteen were diagnosed with primary progressive MS and 21 with secondary progressive MS. Data were analysed using a grounded theory approach. Results: Participants described initially bracketing the illness off and carrying on their usual activities but this became problematic as the condition progressed and they employed different adjustment modes to cope with increased disabilities. Some scaled back their activities to live a more comfortable life, others identified new activities or adapted old ones, whereas at times, people disengaged from the adjustment process altogether and resigned to their condition. Relationships with partners, emotional reactions, environment and perception of the environment influenced adjustment, while people were often flexible and shifted among modes. Conclusions: Adjusting to a progressive condition is a fluid process. Future interventions can be tailored to address modifiable factors at different stages of the condition and may involve addressing emotional reactions concealing/revealing the condition and perceptions of the environment.

Healthcare professionals’ perceptions of psychological treatment for chronic pain in Singapore: challenges, barriers, and the way forward

Abstract Purpose: There are very few studies on healthcare providers’ experiences of delivering treatment for chronic pain in a Southeast Asian setting. The aims of this study are to understand the experiences of professionals delivering treatment for people with chronic pain in Singapore and identify possible barriers to psychological treatment for this condition within the broader experiences of these professionals. Method: Healthcare professionals with at least 1-year experience treating chronic pain were recruited and purposefully sampled. Fifteen inductive semi-structured interviews were conducted to explore healthcare professionals’ experiences of treating people with chronic pain. Interviews were transcribed verbatim and analysed using thematic analysis. Results: Four main themes were identified: ‘System Barriers’, ‘Core Beliefs and management of Chronic Pain’, ‘Engaging Patients in treatment’ and ‘Creating Awareness for Chronic Pain Management’. Professionals trained in a multidisciplinary approach to pain management were seen as rare. Professionals who could refer patients for psychological treatment do not refer due to costs, and their perception that patients may lack understanding of such a treatment. Conclusion: Reducing barriers in the access to psychological treatment in settings like Singapore will require a multifaceted approach. Implications for Rehabilitation A multifaceted approach is required to reduce barriers to psychological treatment for chronic pain in settings like Singapore. Educating healthcare professionals on the need for a multidisciplinary approach to chronic pain could help in reducing misconceptions and increase understanding of the benefits of psychological approaches. Utilizing both media and technological platforms as a means to facilitate psychological treatment uptake for chronic pain may be a way forward for a technological savvy generation.