Family caregivers' sense-making of the results of functional neurodiagnostics for patients with Prolonged Disorders of Consciousness.

Functional neuroimaging and electrophysiological assessments can identify evidence of residual consciousness and cognition in patients with prolonged disorders of consciousness (PDOC) who are otherwise behaviourally unresponsive. These functional neurodiagnostics are increasingly available in clinical settings and are recommended by international clinical guidelines to reduce diagnostic and prognostic uncertainty, and thereby assist family caregivers in their best-interests decision-making. Nevertheless, little is known about how family caregivers make sense of the results of these state-of-the-art functional neurodiagnostics. By applying Interpretative Phenomenological Analysis (IPA) to interviews with family caregivers of patients with diagnoses of PDOC who had received a functional neurodiagnostic assessment, we identify three primary themes of sense-making: The special significance of "brain scans"; A dynamic sense-making process; Holding on to hope and holding on to the person. These themes highlight the challenges of helping family caregivers to balance the relative importance of functional neurodiagnostic results with other clinical assessments and identify an ability of family caregivers to hold a contradiction in which they hope for recovery but simultaneously express a rational understanding of evidence to the contrary. We offer several recommendations for the ways in which family caregivers can be better supported to make sense of the results of functional neurodiagnostics.

A scoping review of psychosocial interventions to enhance the relationship of couples living with dementia.

When dealing with the challenges of dementia, spousal relationships have a central role to play in outcomes such as quality of care and emotional wellbeing. Dementia places strain on these relationships and so it is important to develop interventions to support them. This review maps out what interventions have been employed in this context. Searches of PsycInfo, PsycArticles, CINAHL, Embase, MEDLINE, and Web of Science were conducted to find studies describing interventions that aimed to improve some aspect of the relationship. Thirty-four studies were identified. A wide range and diversity of interventions were described, including life review, psychotherapy and ones focused on communication or creative activity. Reported benefits included meaningful interaction, emotional connection, reduced conflict and negativity, an increase in mutual support, and greater equality in the relationship. However, these can only be considered as potential rather than proven benefits because of the lack of methodological rigour of most of the studies. Future research on this topic would benefit from a closer links with research on the impact that dementia can have on spousal relationships, and from the use of stronger methodology.

Experiences that challenge self-identity following traumatic brain injury: a meta-synthesis of qualitative research.

PURPOSE: To systematically review and synthesise the qualitative literature on experiences that challenge self-identity following traumatic brain injury (TBI). METHOD: Four electronic databases were searched systematically for qualitative research published between 1965 and August 2017, investigating subjective experiences of identity change following TBI. Papers which met the inclusion criteria were evaluated using the Critical Skills Appraisal Programme (CASP) tool and synthesised using guidelines by Thomas and Harden (2008). RESULTS: Of the 1965 papers retrieved, 36 met inclusion and quality criteria. Synthesis resulted in six themes: (1) awareness of change in physical, cognitive, emotional and social functioning; (2) autobiographical memory loss; (3) responses of other people that highlight change; (4) loss of autonomy; (5) comparing old me and new me-loss of valued roles and activities; (6) social rejection and stigma. CONCLUSIONS: An in-depth understanding of the experiences that challenge self-identity after TBI can inform rehabilitation to support individuals to negotiate these processes with less distress and more successfully.IMPLICATIONS FOR REHABILITATIONAfter a traumatic brain injury some people perceive catastrophic changes in their self-identity, and this can have a substantial negative impact on their psychological well-being.Circumstances and events that can trigger such appraisals include developing awareness of loss of ability and function; gaps in autobiographical memory; when others highlight loss and change; the loss of valued roles and activities; and social stigma and rejection.Clinicians should be aware of these triggers and their potential impact so that they can support people to negotiate them more effectively, with less damage to self-identity and psychological well-being.

Social behavior and characteristics of autism spectrum disorder in Angelman, Cornelia de Lange, and Cri du Chat syndromes.

We evaluated autism spectrum disorder (ASD) characteristics and social behavior in Angelman (AS; n  =  19; mean age  = 10.35 years), Cornelia de Lange (CdLS; n  =  15; mean age  = 12.40 years), and Cri du Chat (CdCS, also known as 5 p-syndrome; n  =  19; mean age  =  8.80 years) syndromes. The proportion of individuals meeting the ASD cutoff on the Social Communication Questionnaire was significantly higher in the AS and CdLS groups than in the CdCS group (p < .01). The groups demonstrated divergent social behavior profiles during social conditions in which adult availability, adult familiarity, and social demand were manipulated. Social enjoyment was significantly heightened in AS, whereas social approaches were heightened in individuals with CdCS. Social motivation, social communication, and enjoyment were significantly lower in CdLS. The findings highlight the importance of detailed observation when evaluating ASD and social behavior in genetic syndromes.