Self-report instruments measuring aspects of self for people living with dementia: A systematic literature review of psychosocial interventions.

OBJECTIVE: A positive sense of self may be a key domain of psychological well-being for people living with dementia and therefore a legitimate target for psychosocial interventions in dementia care. Determining the effectiveness of such interventions often requires valid self-report instruments. This review aimed to investigate what aspects of self have been measured using self-report instruments in evaluating psychosocial interventions for people living with dementia and to explore the effectiveness of these interventions in terms of positive outcomes related to aspects of self. METHOD: A systematic search of the literature using five electronic databases and one register (CENTRAL) was conducted. A narrative synthesis and methodological quality assessment was completed for the included studies. RESULTS: A total of 24 studies were included in the review. Seven aspects of self were measured using a range of self-report instruments, many of which have not been validated for dementia. Aspects of self were; self-esteem, self-efficacy, self-compassion, self-growth, self-acceptance, self-management, and self-identity. Studies included a variety of interventions; however, the effectiveness of these interventions for these aspects of self was mixed. CONCLUSION: There is some evidence that psychosocial interventions improve specific aspects of self in dementia but further research to improve this evidence base is needed. Future research should also investigate and confirm the validity and reliability of existing self-report instruments that aim to measure aspects of self in dementia. Limitations and implications of the review are discussed.

Feasibility trial of an early therapy in perinatal stroke (eTIPS).

BACKGROUND: Perinatal stroke (PS) affects up to 1/2300 infants and frequently leads to unilateral cerebral palsy (UCP). Preterm-born infants affected by unilateral haemorrhagic parenchymal infarction (HPI) are also at risk of UCP. To date no standardised early therapy approach exists, yet early intervention could be highly effective, by positively influencing processes of activity-dependent plasticity within the developing nervous system including the corticospinal tract. Our aim was to test feasibility and acceptability of an "early Therapy In Perinatal Stroke" (eTIPS) intervention, aiming ultimately to improve motor outcome. METHODS: Design: Feasibility trial, North-East England, August 2015-September 2017. Participants were infants with PS or HPI, their carers and therapists. The intervention consisted of a parent-delivered lateralised therapy approach starting from term equivalent age and continuing until 6 months corrected age. The outcome measures were feasibility (recruitment and retention rates) and acceptability of the intervention (parental questionnaires including the Warwick-Edinburgh Mental Wellbeing Scale (WEBWMS), qualitative observations and in-depth interviews with parents and therapists). We also reviewed clinical imaging data and undertook assessments of motor function, including the Hand Assessment for Infants (HAI). Assessments were also piloted in typically developing (TD) infants, to provide further information on their ease of use and acceptability. RESULTS: Over a period of 18 months we screened 20 infants referred as PS/HPI: 14 met the inclusion criteria and 13 took part. At 6 months, 11 (85%) of those enrolled had completed the final assessment. Parents valued the intervention and found it acceptable and workable. There were no adverse events related to the intervention. We recruited 14 TD infants, one of whom died prior to undertaking any assessments and one of whom was subsequently found to have a condition affecting neurodevelopmental progress: thus, data for 12 TD infants was analysed to 6 months. The HAI was well tolerated by infants and highly valued by parents. Completion rates for the WEBWMS were high and did not suggest any adverse effect of engagement in eTIPS on parental mental wellbeing. CONCLUSION: The eTIPS intervention was feasible to deliver and acceptable to families. We plan to investigate efficacy in a multicentre randomised controlled trial. TRIAL REGISTRATION: ISRCTN12547427 (registration request submitted 28/05/2015; retrospectively registered, 30/09/2015).

Participatory design in the development of an early therapy intervention for perinatal stroke.

BACKGROUND: Perinatal stroke is the leading cause of unilateral (hemiparetic) cerebral palsy, with life-long personal, social and financial consequences. Translational research findings indicate that early therapy intervention has the potential for significant improvements in long-term outcome in terms of motor function. By involving families and health professionals in the development and design stage, we aimed to produce a therapy intervention which they would engage with. METHODS: Nine parents of children with hemiparesis and fourteen health professionals involved in the care of infants with perinatal stroke took part in peer review and focus groups to discuss evolving therapy materials, with revisions made iteratively. The materials and approach were also discussed at a meeting of the London Child Stroke Research Reference Group. Focus group data were coded using Normalisation Process Theory constructs to explore potential barriers and facilitators to routine uptake of the intervention. RESULTS: We developed the Early Therapy in Perinatal Stroke (eTIPS) program - a parent-delivered, home-based complex intervention addressing a current gap in practice for infants in the first 6 months of life after unilateral perinatal stroke and with the aim of improving motor outcome. Parents and health professionals saw the intervention as different from usual practice, and valuable (high coherence). They were keen to engage (high cognitive participation). They considered the tasks for parents to be achievable (high collective action). They demonstrated trust in the approach and felt that parents would undertake the recommended activities (high collective action). They saw the approach as flexible and adaptable (high reflexive monitoring). Following suggestions made, we added a section on involving the extended family, and obtained funding for a website and videos to supplement written materials. CONCLUSIONS: Focus groups with parents and health professionals provided meaningful feedback to iteratively improve the intervention materials prior to embarking on a pilot study. The intervention has a high potential to normalize and become a routine part of parents' interactions with their child following unilateral perinatal stroke.