Search

Objective: Decisional conflict is used increasingly as an outcome measure in advance care planning (ACP) studies. When the Decisional Conflict Scale (DCS) is used in anticipatory decision‐making contexts, the scale is typically tethered to hypothetical scenarios. This study reports preliminary validation data for hypothetical scenarios relating to life‐sustaining treatments and care utilisation to inform their broader use in ACP studies. Methods: Three hypothetical scenarios were developed by a panel of multidisciplinary researchers, clinicians and community representatives. A convenience sample of 262 older adults were surveyed. Analyses investigated comprehensibility, missing data properties, sample norms, structural, convergent and discriminant validity. Results: Response characteristics suggested that two of the scenarios had adequate comprehensibility and response spread. Missing response rates were unrelated to demographic characteristics. Predicted associations between DCS scores and anxiety (r's =.31–.37, p <.001), and ACP engagement (r's = −.41 to −.37, p <.001) indicated convergent validity. Conclusion: A substantial proportion of older adults reported clinically significant levels of decisional conflict when responding to a range of hypothetical scenarios about care or treatment. Two scenarios showed acceptable comprehensibility and response characteristics. A third scenario may be suitable following further refinement. Patient or Public Contribution: The scenarios tested here were designed in collaboration with a community representative and were further piloted with two groups of community members with relevant lived experiences; four people with life‐limiting conditions and five current or former care partners. [ABSTRACT FROM AUTHOR]

To identify the experiences and needs of dependent children who have a parent with an acquired brain injury (ABI) using a systematic review and thematic synthesis. A systematic search of Medline, Embase, PsycINFO, CINAHL Plus, and Web of Science was conducted. The search included variants of: "children," "parents," "acquired brain injury," and "experiences" or "needs." Eligible articles reported on the experiences/needs of dependent children who have a parent with an ABI, from the child's perspective. Thematic analysis was used to identify themes. A total of 4895 unique titles were assessed, and 9 studies met inclusion. Four themes were identified: (1) Sustained Emotional Toll (subthemes: (i) Initial Shock and Distress; (ii) Ongoing Loss and Grief; (iii) Present-Day Stress and Emotions), (2) Responsibilities Change and Children Help Out, (3) Using Coping Strategies (subtheme: Talking Can Help), and (4) Wanting Information about the Injury. Themes highlighted significant disruption and challenges to children's wellbeing across development, with ongoing and considerable impacts many years after the parent's injury. The nature of the experiences shifted with time since the parent's injury. These children need ongoing support starting shortly after their parent's injury that is grounded in their particular experiences. When a parent has an acquired brain injury (ABI), dependent children and adolescents face emotional upheaval, significant stressors, increased responsibilities, and lack of information about their parent's injury that persist even many years after injury. The nature of these experiences and therefore their needs change based on the acute versus later stages of the parent's injury. Children often do not ask questions or tell others how they feel, which means that they need support that asks about, and listens and responds to their needs. Support for children needs to start soon after the parent's injury, be grounded in the lived experiences of this group, consider their parent's recovery stage, and be embedded as part of service provision rather than rely on children or families to make service contact. [ABSTRACT FROM AUTHOR]

After acquired brain injury (ABI) dependence on intervention for continence management is common. This preliminary investigation aimed to (i) quantify toileting care hours and costs in a community-based ABI rehabilitation and disability setting, and (ii) measure change in care needs, costs, and functional independence after intervention with assistive technologies (ATs). Pragmatic pre-post intervention pilot study of 14 adults with ABI and toileting disability accessing community-based neurorehabilitation or disability support in Western Australia. Toileting and functional independence were assessed monthly from baseline (T0) to 3-month follow-up (T3). Basic and nursing care hours (Northwick Park Dependency Score), cost of care estimates (Northwick Park Care Needs Assessment), functional independence (Functional Independence and Assessment Measure), and cost of consumables were examined pre- and post-intervention with ATs. Multilevel mixed-effects models with bootstrap estimation were conducted. Cost of consumables significantly declined (AU$69/week), and functional independence significantly improved following intervention (+23.5 points). There was a non-significant reduction in care needs for toileting (4 h/week) and in the cost of toileting care (AU$633/week). Toileting disability substantially impacts care hours and costs. This study provides preliminary evidence that comprehensive continence management is beneficial in reducing costs and supporting people with an ABI to increase their independence. A comprehensive continence assessment and management plan reduces the number of care hours, cost of care, and cost of continence products in a neurorehabilitation and disability support sample for people with acquired brain injury (ABI). Assistive technologies for continence management are beneficial in supporting people with ABI to increase independence, and reduce costs. Providing comprehensive continence assessment and management plan reduces reliance on staff for continence care, and improves functional independence. [ABSTRACT FROM AUTHOR]

Objectives: The constructs of health, well‐being and quality of life are not routinely understood or measured for people accessing aged care services. This study aimed to identify and validate theoretical domains of health, well‐being and quality of life for recipients of care, their informal carers and staff, and inform the development of a person‐centred outcomes measurement framework. Methods: First, a rapid review to identify recurrent domains of health, well‐being and quality‐of‐life in aged care, using systematic searches of electronic databases, and review of grey literature, following the PRISMA guidelines. Second, establish content validity of identified domains using (a) Delphi technique with n = 134 aged care staff, care recipients and caregivers, and (b) comparability with categories within the International Classification of Functioning, Disability and Health (ICF) and ICF Geriatric Core Set. Results: From 972 records detected in the rapid review, 19 peer‐reviewed research articles and 27 grey literature sources were included in the content analysis. Twenty‐four domains and 109 concepts were identified, and health, quality of life, security and food and nutrition were ranked as the most important. One domain, cognition, linked to both the Geriatric Core Set and ICF, and 37% of domains and 39% of concepts were evident within the ICF. Conclusions: This study identified and validated 24 important domains of health, well‐being and quality of life for the older person receiving care, their informal carers and staff. These domains can be used to guide the selection of outcome measures and facilitate person‐centred care and care planning. [ABSTRACT FROM AUTHOR]