Reclaiming Agency in Care Decisions and Barriers From the Perspectives of Individuals With Acquired Brain Injury and Their Family Members.

BACKGROUND: The ability to self-advocate or have a say in one's care is integral to personalised care after acquired brain injury (ABI). This study aimed to understand what constitutes self-advocacy and associated barriers and facilitators throughout hospital transitions and into the community. METHOD: Qualitative methodology was employed with semistructured interviews conducted with 12 people with ABI and 13 family members. Interviews were conducted at predischarge (in-person or via telephone) and 4 months postdischarge (via telephone) from the brain injury rehabilitation unit of a tertiary hospital. Data were thematically analysed using a hybrid deductive-inductive approach. RESULTS: Self-advocacy reflects the process of reclaiming agency or people's efforts to exert influence over care decisions after ABI. Agency varies along a continuum, often beginning with impaired processing of the self or environment (loss of agency) before individuals start to understand and question their care (emerging agency) and ultimately plan and direct their ongoing and future care (striving for agency). This process may vary across individuals and contexts. Barriers to self-advocacy for individuals with ABI include neurocognitive deficits that limit capacity and desire for control over decisions, unfamiliar and highly structured environments and lack of family support. Facilitators include neurocognitive recovery, growing desire to self-advocate and scaffolded support from family and clinicians. CONCLUSION: Self-advocacy after ABI entails a process of reclaiming agency whereby individuals seek to understand, question and direct their ongoing care. This is facilitated by neurocognitive recovery, growing capacity and desire and scaffolded supports. Research evaluating approaches for embedding self-advocacy skills early in brain injury rehabilitation is recommended. PATIENT OR PUBLIC CONTRIBUTION: Two caregivers with lived experience of supporting a family member with ABI were involved in the design and conduct of this study and contributed to and provided feedback on the manuscript.

What is known about sexual health after pediatric acquired brain injury: A scoping review.

BACKGROUND: Positive sexual development is a core task in the transition from childhood/adolescence to adulthood. Little is known about the extent of research addressing this topic after acquired brain injury (ABI). OBJECTIVE: To identify publications (1980 to 2016) addressing positive sexual health among children/adolescents with ABI. METHODS: A scoping review. RESULTS: A search conducted using OVID and PubMed databases yielded 2021 citations with 28 publications meeting the inclusion criteria (six reviews, one expert account, 19 observational and two intervention studies). Teenagers with ABI reported poorer body image, feeling less sexually or physically attractive than sex and age matched non brain-damaged controls. The one study with findings on sexual orientation, reported 15% of adolescents with ABI identified as lesbian, gay or bisexual. Precocious puberty was a rare outcome from ABI, but the most common focus of the publications (14/28). Finally, two case studies (genital touching and classroom masturbation respectively) found that behavioral interventions were an effective means of extinguishing inappropriate sexual behaviour after childhood ABI. CONCLUSIONS: Sexual health is a neglected area of research in post-ABI care for children/adolescents. A better understanding of the needs and challenges will help rehabilitation professionals and parents provide more informed and effective supports.

Brain Injury as the Result of Violence: A Systematic Scoping Review.

This scoping review investigated risk factors, impacts, outcomes, and service implications of violence-related traumatic brain injury (TBI) for individuals and their informal caregivers. A systematic search (Web of Science, PubMed, PsycInfo, ProQuest, Medline, Informit; 1990-2015) identified 17 studies meeting the inclusion and exclusion criteria. Violence was the cause of between 3% and 26% of all TBIs. Males, a non-White racial background, preinjury unemployment, and preinjury substance abuse problems all elevated the risk for sustaining a violence-related TBI compared to other-cause TBI. However, few differences were observed in 12 months postinjury outcomes. No studies investigated the impact of violence-related TBI on informal caregivers.

APPETITE PREDICTS INTAKE AND NUTRITIONAL STATUS IN PATIENTS RECEIVING PERITONEAL DIALYSIS.

BACKGROUND: Sub-optimal nutrition status is common amongst patients receiving peritoneal dialysis (PD) and leads to poor clinical outcome. This population experiences multi-factorial challenges to achieving optimal nutritional status, particularly driven by inadequate intake. OBJECTIVES: The aim of this investigation was to identify factors associated with inadequate protein intake and sub-optimal nutritional status in patients undergoing PD. DESIGN/PARTICIPANTS: This was a cross-sectional study of 67 adult patients receiving PD (mean age 59 ± 14 years; 57% male) within a single centre. Participants were consecutively recruited and interviewed by renal dietitians, collecting: Subjective Global Assessment (SGA); quality of life (using EQ-5D); dietary intake (via dietary interview); and appetite (using Appetite and Diet Assessment Tool). Participant demographics were obtained via survey or medical charts. Main outcome measures were inadequate dietary protein intake (<1.1 g/kg adjusted body weight/day) and malnutrition (as defined by SGA rating B or C). RESULTS: Overall, 15 (22%) patients were malnourished and 29 (43%) had inadequate protein intake. Poor appetite (anorexia) was reported in 62% (18/29) of participants with inadequate protein malnourished patients reported anorexia versus 12 (23%) of the well-nourished patients (p = 0.0001). CONCLUSION: Anorexia was a key risk factor for inadequate protein intake and malnutrition in patients undergoing PD. These findings highlight a need to closely monitor patients with appetite disturbances.