Experiences of living with dystonia.

PURPOSE: Dystonia is a chronic and incurable movement disorder. This qualitative study aimed to enhance understanding of the condition by exploring the experience of living with dystonia. METHOD: Interpretative phenomenological analysis was used to analyse data gathered through semi-structured interviews. Eight participants were recruited via a UK-based dystonia charity. RESULTS: Three superordinate themes emerged from the data: (1) dealing with ignorance and uncertainty: navigating health services with a rare, poorly understood condition; (2) the challenge of social isolation: overcoming barriers to positive social identity; and (3) fear of psychological explanations: the impact of stigmatised attitudes towards psychological explanations for dystonia symptoms. CONCLUSION: Coping with a rare and chronic condition led to participants feeling isolated and stigmatised by health care services and their communities. Participants were able to overcome this challenge to their identities through the use of social support, particularly from other people with dystonia. Recommendations for reducing the stigmatising experiences of people with dystonia can help to ease the process of adjustment to the illness and enable people to pursue meaningful lives and positive identities. Recommendations for research are aimed at increasing knowledge about these processes.IMPLICATIONS FOR REHABILITATIONDystonia has a pervasive, negative impact on the lives of people with the condition.The struggle for diagnosis marks the beginning of a period of psychological adjustment, the difficulty of which is compounded by social isolation and stigma.Support groups and peer interaction help people to integrate dystonia into their concept of a meaningful life and identity.Health professionals should play a pivotal role in assisting patients during the process of adjustment and on-going self-management through sensitive communication and signposting to wider support services.

Beyond the Revolving Door: Long-Term Lived Experience of Eating Disorders and Specialist Service Provision.

In this study, we undertook a narrative analysis of participants' long-term lived experience of eating disorders and specialist service provision. Eight participants were recruited with service experience across five National Health Service (NHS) Trusts in the United Kingdom. All participants had a minimum of 10 years self-reported experience living with an eating disorder. The data are presented across different temporal stages that demonstrate the development of participants' self-construct in relation to their first contact with specialist services, what had happened in their lives for this to become necessary, and their current relationships with services, before exploring what participants need from services to help them feel heard going forward. Findings suggest that current methods of service delivery result in delayed and inappropriate supports and a consequent "battling" against professionals, which can provide an obstacle to compassionate and collaborative working and promote "revolving door" experiences.

Understanding resilience in young people with complex mental health needs: A Delphi study.

BACKGROUND: Resilience is a term used to describe an individual's adaptive coping following an adverse experience; it is important for gaining insight into the development of mental health difficulties in young people and their ability to manage adversity, informing both preventive and reactive clinical practice. METHODS: The Delphi method was used whereby a panel of 15 clinical psychologists rated 67 statements, generated from focus groups with young people and interviews with multi-disciplinary staff, in terms of their importance relating to resilience for young people with complex mental health needs. A consensus level of 85% across the panel was set to include/exclude statements in terms of their importance for resilience. RESULTS: Nineteen statements were included in the final list. These were grouped into the following four themes: (1) understanding the self, (2) agency in recovery, (3) interpersonal relationships and (4) therapeutic setting and relationships. CONCLUSIONS: The results highlight specific resilience factors for young people with complex mental health needs, based upon ratings by clinical psychologists. Recommendations are made which focus upon how to promote resilience within this specific population. These include offering secure therapeutic relationships and a safe environment for young people to make decisions, develop a greater understanding of themselves, and build relationships and a sense of connection with others, both within the specialist mental health service and upon discharge.

Children's Perspectives on Living With a Sibling With a Chronic Illness.

CONTEXT: Clinical guidance emphasizes the importance of considering the whole family when caring for a child with a pediatric chronic illness (PCI). However, there is a lack of research specific to sibling experience. Parental accounts are used in studies to examine family experiences; consequently, the direct voices of siblings are neglected. OBJECTIVE: The meta-synthesis was used to explore the experiences of siblings of children with PCIs to understand their perspectives; in particular, we observed what they feel had influenced their emotional well-being, to target interventions. DATA SOURCES: We searched PsychInfo, Cumulative Index to Nursing and Allied Health Literature, PubMed, and Academic Search Complete databases from inception to April 2016. STUDY SELECTION: We selected qualitative articles used to examine children's perspectives of living with a sibling with a PCI. Twelve articles were reviewed. DATA EXTRACTION: We observed participants' characteristics, qualitative methodology, analysis, and themes. RESULTS: The thematic synthesis identified 2 overarching themes providing new insights. The first theme, "changing relationships," had 2 subthemes: "changing family relationships" and "changing relationship to self." The second theme, "managing changes," had 3 subthemes: "coping and acceptance," "support from friends, peers, and support groups," and "negative reactions from others." LIMITATIONS: Studies were often descriptive with little explicit qualitative analysis. CONCLUSIONS: The findings are used to outline how changes in family relationships often result in reduced communication and a suppression of healthy siblings' needs. Siblings develop strategies to help them cope with and accept their circumstances, including finding new prosocial ways of meeting their needs in the form of skills and roles they develop.

Is evaluating complementary and alternative medicine equivalent to evaluating the absurd?

Complementary and alternative therapies such as reflexology and acupuncture have been the subject of numerous evaluations, clinical trials, and systematic reviews, yet the empirical evidence in support of their efficacy remains equivocal. The empirical evaluation of a therapy would normally assume a plausible rationale regarding the mechanism of action. However, examination of the historical background and underlying principles for reflexology, iridology, acupuncture, auricular acupuncture, and some herbal medicines, reveals a rationale founded on the principle of analogical correspondences, which is a common basis for magical thinking and pseudoscientific beliefs such as astrology and chiromancy. Where this is the case, it is suggested that subjecting these therapies to empirical evaluation may be tantamount to evaluating the absurd.