Gaining consensus on emotional wellbeing themes and preferences for digital intervention type and content to support the mental health of young people with long-term health conditions: A Delphi study.

BACKGROUND: Young people (YP) with long-term conditions (LTCs) are at greater risk of psychological distress than those without LTCs. Despite this, there is a scarcity of quality digital interventions designed to help improve mental wellbeing in this population. The aim of this study was to determine what YP, parents and health professionals preferred for future interventions. METHODS: Twenty-six YP with asthma, diabetes and/or epilepsy (the three most common LTCs in YP), 23 parents of YP with LTCs and 10 health professionals mainly in paediatric specialisms (total n = 59) took part in an online Delphi study to gain consensus (set at 75% agreement) on four questions across three rounds. Participants ordered psychological themes that may be experienced by YP with LTCs by importance and ranked digital intervention types and delivery modes by importance or usefulness. The most common results were reported if no consensus was reached by round 3. RESULTS: Participants preferred a mobile phone app (73% agreement) and a mixture of one-on-one and group support for an intervention (75% agreement). The two highest ranked psychological themes were anxiety (44%) and wanting to appear 'normal' (38%), and the top intervention type was 'general counselling' (54% agreement). CONCLUSION: There was a clear desire for an app to help with the psychological aspects of living with LTCs and for a combination of one-to-one and group intervention elements. Anxiety and wanting to appear 'normal' might be two closely linked psychological challenges that could be addressed by a single intervention. IMPLICATIONS: The results will be important to consider for a future intervention, although further consultation will be needed for app development. PATIENT OR PUBLIC CONTRIBUTION: Two YP with a LTC provided feedback on the study protocol including the aims and procedures of the project. Another six YP with LTCs were consulted on an early draft of the study questionnaire (the four questions), which was subsequently revised. Once the project began, a patient and public involvement group consisting of two YP with LTCs and one parent of a YP with an LTC gave feedback on the research process, lay report of the results and dissemination plan.

Predictors of Post-Traumatic Growth in a Sample of United Kingdom Mental and Community Healthcare Workers during the COVID-19 Pandemic.

Experiences of adversity can generate positive psychological effects alongside negative impacts. Little research to date has evaluated predictors of post-traumatic growth in mental or community healthcare workers during the COVID-19 pandemic. Following a survey of 854 community and mental healthcare staff in the United Kingdom in July to September 2020, multiple linear regression was used to determine the association between hypothesised risk and protective factors (personal, organisational and environmental variables) and total scores on the Post-traumatic Growth Inventory-Short Version. Positive self-reflection activities, black and minority ethnic status, developing new healthcare knowledge and skills, connecting with friends and family, feeling supported by senior management, feeling supported by the UK people, and anxiety about the personal and work-related consequences of COVID-19 each significantly independently predicted greater post-traumatic growth. Working in a clinical role and in mental healthcare or community physical healthcare predicted lower post-traumatic growth. Our research supports the value of taking an organisational growth-focused approach to occupational health during times of adversity, by supporting staff to embrace opportunities for personal growth. Valuing staff's cultural and religious identity and encouraging self-reflective activities, such as mindfulness and meditation, may help to promote post-traumatic growth.

Psychological profiles of individuals with type 2 diabetes and their association with physical and psychological outcomes: a cluster analysis.

OBJECTIVES: This study aimed to identify clusters of participants with Type 2 diabetes mellitus (T2DM) at risk for developing psychological and somatic distress symptoms. Moreover, we investigated whether the different clusters were associated with glycemic control, sleep, and physical activity levels.Design and main outcome measures. In a cross-sectional design, participants with T2DM (n = 269) completed questionnaires on psychological and somatic distress, sleep disorders and physical activity. RESULTS: Cluster analyses yielded three groups: a) "high self-confident and low demoralised"; b) "low support and low involvement"; c) "high consequences, high demoralisation and nagging". The groups were distinguished by the social, cognitive, and vital exhaustion variables and significant differences in diabetes-related psychological distress and physical activity. The measure of glycemic control did not differ between clusters. The "high self-confident and low demoralised" group displayed the lowest scores on psychological distress compared to the other clusters. CONCLUSIONS: Results suggest that social cognitive dimensions and affective states play a key role in defining clusters in participants with T2DM. Thus, we need to consider the psychological profiles of participants with T2DM when designing interventions to improve self-management strategies.

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

Background/purpose: Being 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. Methods: This 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. Results: People 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 R 2 = 62.6%) were lower MS self-efficacy and higher avoidance, cognitive vulnerability, embarrassment avoidance, conflict, helplessness, and secondary progressive MS type. Conclusions and implications: Helping 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.

Acceptability and Feasibility of a Mindfulness Intervention Delivered via Videoconferencing for People With Parkinson's.

Mindfulness-based group therapy is a rapidly growing psychological approach that can potentially help people adjust to chronic illness and manage unpleasant symptoms. Emerging evidence suggests that mindfulness-based interventions may benefit people with Parkinson's. The objective of the paper is to examine the appropriateness, feasibility, and potential cost-effectiveness of an online mindfulness intervention, designed to reduce anxiety and depression for people with Parkinson's. We conducted a feasibility randomized control trial and qualitative interviews. Anxiety, depression, pain, insomnia, fatigue, impact on daily activities and health-related quality of life were measured at baseline, 4, 8, and 20 weeks. Semi-structured interviews were conducted at the end of the intervention. Participants were randomized to the Skype delivered mindfulness group (n = 30) or wait-list (n = 30). Participants in the mindfulness group were also given a mindfulness manual and a CD with mindfulness meditations. The intervention did not show any significant effects in the primary or secondary outcome measures. However, there was a significant increase in the quality of life measure. The incremental cost-effectiveness ratio was estimated to be £27,107 per Quality-Adjusted Life Year gained. Also, the qualitative study showed that mindfulness is a suitable and acceptable intervention. It appears feasible to run a trial delivering mindfulness through Skype, and people with Parkinson's found the sessions acceptable and helpful.

Prioritising target non-pharmacological interventions for research in Parkinson's disease: achieving consensus from key stakeholders.

BACKGROUND: In 2014 Parkinson's UK conducted a research prioritisation exercise with stakeholders highlighting important clinical research questions. The exercise highlighted the need for effective interventions to be developed and tested to tackle a range of non-motor symptoms including: sleep quality, stress and anxiety, mild cognitive impairment, dementia and urinary problems. The present work set out to build on this exercise by prioritising types of non-pharmacological interventions to be tested to treat the identified non-motor symptoms. METHODS: A Patient and Public Involvement exercise was used to reach consensus on intervention priorities for the treatment of non-motor symptoms. A Delphi structure was used to support the feedback collected. A first-round prioritisation survey was conducted followed by a panel discussion. Nineteen panellists completed the first-round survey (9 people with Parkinson's and 10 professionals working in Parkinson's) and 16 participated in the panel discussion (8 people with Parkinson's and 8 professionals working in Parkinson's). A second-round prioritization survey was conducted after the panel discussion with 13 people with Parkinson's. RESULTS: Physical activity, third wave cognitive therapies and cognitive training were rated as priority interventions for the treatment of a range of non-motor symptoms. There was broad agreement on intervention priorities between health care professionals and people with Parkinson's. A consensus was reached that research should focus on therapies which could be used to treat several different non-motor symptoms. In the context of increasing digitisation, the need for human interaction as an intervention component was highlighted. CONCLUSION: Bringing together Parkinson's professionals and people with Parkinson's resulted in a final treatment priority list which should be both feasible to carry out in routine clinical practice and acceptable to both professionals and people with Parkinson's. The workshop further specified research priorities in Parkinson's disease based on the current evidence base, stakeholder preferences, and feasibility. Research should focus on developing and testing non-pharmacological treatments which could be effective across a range of symptoms but specifically focusing on tailored physical activity interventions, cognitive therapies and cognitive training.

The effect of implementation intentions on use of dental chewing gum.

This study examined the effect of implementation intentions on use of dental chewing gum. A total of 80 participants reported intentions to chew gum, read information about the benefits of dental gum, reported intentions again, and formed implementation intentions relating to gum use (experimental group) or solved word puzzles (control group). Seven days later, they reported the amount chewed. Results showed that among those motivated to chew gum, implementation intentions significantly increased the total amount chewed. Time 1 intentions were more highly correlated with behaviour than time 2 intentions. Further research is needed to establish the effectiveness of implementation intentions in dental settings.

Multiple challenges for people after transitioning to secondary progressive multiple sclerosis: a qualitative study.

OBJECTIVES: Transitioning to secondary progressive multiple sclerosis (SPMS) is demanding for both patients and healthcare professionals. The particular challenges and the ways patients cope are poorly understood. The present study examines what challenges people face when diagnosed with SPMS by exploring experiences of people who have transitioned recently (up to 5 years). DESIGN: Semistructured qualitative interviews at two time points a year apart. Interviews were analysed using inductive thematic analysis. SETTING: UK. PARTICIPANTS: We interviewed 21 people at baseline and 17 participated in the follow-up interviews. RESULTS: The majority of participants reported expecting to transition to SPMS, and the diagnosis did not make much difference to them. Participants described increasing emotional and physical challenges after transitioning to SPMS and between the first and second interviews. Planning, using distractions and maintaining social roles helped participants cope with the increased challenges. The same coping strategies were used between the two interviews. Participants felt there was not much left to do regarding the management of their symptoms. A key theme was the sense of abandonment from healthcare services after transitioning to SPMS. CONCLUSIONS: After transitioning to SPMS, people are faced with multiple challenges. Participants described a lack of directions for symptoms management and lack of support from the healthcare system. An integrated multidisciplinary healthcare approach is crucial at the progressive stage of the disease to alleviate feelings of helplessness and promote symptom management.

The Experiences of People Who Quit Khat and the Health Care Professionals Who Support them.

BACKGROUND: This study aimed to explore the barriers and enablers to quitting khat from the perspective of users and the barriers and enablers to supporting users to quit from the perspective of healthcare professionals (HCPs). METHODS: The present qualitative study was conducted using semi-structured interviews and the Theoretical Domains Framework (TDF) to collect and analyse data. FINDINGS: Overall, 10 khat users and 3 professionals were interviewed. Beliefs about the consequences of continued use facilitated user's decisions to quit. Social influences were both a barrier and an enabler. For professionals, the social influence of other colleagues and working together was key in enabling them to support clients. Social/professional role and identity was also an important enabler, as professionals saw supporting users to quit as an integral part of their role. A range of behaviour change techniques was identified as potential ways in which quitting attempts could be more successful, from the perspective of users and professionals. CONCLUSION: The study reveals the complexity of khat chewing and quitting from the perspective of khat users, such as the varied influence of family and friends. It also identifies the many barriers and enablers that professionals experience when supporting individuals to quit, such as working with other professionals. There is little evidence for the effectiveness of current services provided for quitting khat or little information outlining how they were developed. Current services would benefit from evaluating the effectiveness of the interventions using established methodology. Recommendations have been provided for practice in the field of substance misuse.

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.

Potential treatment mechanisms in a mindfulness-based intervention for people with progressive multiple sclerosis.

OBJECTIVES: To explore putative mediators of a mindfulness-based intervention to decrease distress in people with multiple sclerosis (MS) and to explore the patients' perspectives on this intervention. DESIGN: We used an explanatory mixed methods design incorporating quantitative data from a pilot randomized control trial and a qualitative interview study with people who completed the mindfulness intervention. METHODS: People with MS (n = 40) completed standardized measures of distress (outcome), and acceptance, decentring, self-compassion, and self-efficacy (potential mediators). Semi-structured interviews (n = 15) of patients' experiences of the mindfulness intervention were analysed deductively and inductively. RESULTS: Decentring post-intervention explained 13% of the 3-month change in distress and between 27% and 31% of concurrent changes in distress. Acceptance changed only slightly, and as a result, the indirect effect accounts for only 2% of future distress and between 3% and 11% of concurrent distress. Qualitative data showed that acceptance and self-compassion needed more time to develop, whereas decentring could be implemented readily after being introduced in the sessions. Self-efficacy also had a large mediating effect. Participants in their interviews talked about group dynamics and prior expectations as essential elements that determine their engagement with the course and their level of satisfaction. CONCLUSIONS: Mindfulness interventions for people with a chronic progressive condition may benefit from focusing on helping them to accept daily challenges and teach them to recognize their thoughts and feelings, allowing time for acceptance and self-compassion to develop. Group dynamics also play a fundamental role in the success of the mindfulness interventions. Statement of Contribution What is already known on this subject? Mindfulness courses improve psychological well-being for people with chronic conditions. Mindfulness courses have been successful in improving psychological well-being and symptom management for people with multiple sclerosis but we do not know how these courses work. What does this study add? Decentering and self-efficacy appear to be key mechanisms leading to reduced distress. Acceptance and self-compassion may need more time and practice to develop. Group dynamics and expectations of the mindfulness courses were also important elements of mindfulness.

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

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.

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.

Mixed Experiences and Perceptions of Psychological Treatment for Chronic Pain in Singapore: Skepticism, Ambivalence, Satisfaction, and Potential.

UNLABELLED: There is little research in Southeast Asia focusing on patients' experiences of seeking psychological treatment for chronic pain. OBJECTIVE: This study aims to understand the experiences of patients seeking psychological treatment for chronic pain in this region. SETTING: Outpatient pain clinic at a tertiary hospital in Singapore. SUBJECTS: People with experiences of attending psychological treatment for chronic pain, including some who were not receiving this type of treatment. STUDY DESIGN AND METHODS: Fifteen inductive semi-structured interviews were conducted to explore patients' experiences regarding psychological treatment for their chronic pain. Thematic analysis was then applied. RESULTS: Three main themes were identified: "Expectations and Realities of Health Professionals," "Patients' Attitudes and Beliefs," and "Practical and Social Factors." From the patients' perspectives, an empathetic health professional who was willing to listen contributed to a positive treatment seeking experience. Patients felt that health professionals' lack of knowledge about appropriate treatment contributed to their frustration. Patients could not understand how psychological treatment was related to pain treatment and queried why they were "paying just to talk." Conversely, their experiences were quite positive, and they found psychological treatments helpful when they participated in them. CONCLUSION: Education for both patients and health professionals unfamiliar with psychological treatments for pain may improve access to these treatments.

'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.

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.

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.

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.

How do adolescents adjust to their parent's multiple sclerosis? An interview study.

OBJECTIVES: The aim of this study was to explore how adolescents with a parent with multiple sclerosis (MS) adjust to their parents' illness. DESIGN: We used an inductive qualitative approach with open ended questions as this was appropriate to facilitate the development of a broad and child-centred understanding of how adolescents adjust and which resources they use to cope with the challenges that are associated with parental MS. METHODS: Fifteen semi-structured face-to-face interviews were conducted. Interviews were audiotaped, transcribed, and analysed using inductive thematic analysis. RESULTS: Adolescents described both positive and negative experiences related to having a parent with MS. Benefits to having a parent with MS included reports of feeling more empathetic to others and more grown-up. Negative impacts included family tension, less time to spend with friends, and worries about the future. The support from the well parent, siblings, and friends were found to facilitate adolescents' adjustment. Adolescents assuming a parenting role and illness characteristics, such as illness deterioration, relapses and fatigue, challenged adolescents' adjustment to having a parent with MS. CONCLUSIONS: Some adolescents described adjusting well to having a parent with MS, while others appeared to have more difficulty. Whilst the severity of the parent's deterioration and symptoms appeared to play a role in adjustment, other potentially modifiable factors such as the lack of well parent's support, adolescents' increased parenting responsibilities, and family tension also posed barriers to adolescents' adjustment. Support interventions may be helpful for vulnerable adolescents, which consider both family and individual factors.