Development and evaluation of the Family Needs Questionnaire for Pediatric Rehabilitation.

PURPOSE: To develop the Family Needs Questionnaire-Pediatric Rehabilitation (FNQ-PR) version and evaluate the reliability and concurrent validity of this self-report measure for caregivers of children with disabilities who receive pediatric rehabilitation services. MATERIALS/METHODS: The 39-item FNQ-PR was developed through a modified Delphi Technique. For test-retest evaluation, parents completed the FNQ-PR twice through an online REDCap survey, 1-3 weeks apart. Concurrent validity data (parent-report Impact on Family Scale [IFS-15] and Measure of Processes of Care [MPOC-20]) were collected at baseline. Reliability analyses included ICCs (95%CI) and internal consistency evaluation. RESULTS: Twenty-five caregivers of children ages 2-18 years (mean age 12.2 years) with a disability completed the FNQ-PR at baseline, and 21 completed the retest. FNQ-PR total score demonstrated excellent test-retest reliability (ICC = 0.84); internal consistency was high. The FNQ-PR total score was strongly negatively associated with IFS-15 total score (r = -0.62) and showed fair to strong association with MPOC subscale scores (0.45 ≤ r ≤ 0.70). Participants did not identify issues with the online format or FNQ-PR item rating. CONCLUSIONS: The FNQ-PR demonstrated excellent overall reliability and strong evidence of validity. It fills a gap in clinical care of families of children with disabilities, providing a systematic way for families to identify the extent to which their needs are perceived to have been met. Clinicians can use this tool to target unmet needs that are most important to families. FNQ-PR use in future research will support exploration of the impact of specific child and family factors on family needs.

Are healthcare providers and young people talking about sexuality? A scoping review to characterize conversations and identify barriers.

BACKGROUND: Conversations about sexuality with healthcare providers (HCPs) are critical to youth's positive development, including youth with disabilities or chronic conditions. Yet, little is known about the characteristics of sexuality conversations with youth in healthcare settings. This scoping review examined the nature and extent of sexuality conversations between HCPs and youth (with and without a disability or chronic condition) and aimed to identify barriers to these conversations. METHODS: Scoping review methodology using rapid review principles was employed. INCLUSION CRITERIA: studies published between 2009 and 2019; examined conversations between HCPs and youth aged 21 and below; addressed sexuality; and took place in a healthcare setting. Study characteristics were described and clustered into thematic groups. RESULTS: Of the 5543 identified, 32 articles were included. Articles addressed (i) the content of sexuality conversations, (ii) prevalence of sexuality conversations and (iii) barriers to discussing sexuality. The content of sexuality discussions was largely biologically focused. The prevalence of sexuality discussions varied, with some discrepancy between youth-reported and HCP-reported rates. Seven barriers (three personal and four systemic) were identified. Youth with disabilities or chronic conditions were vastly under-represented in the published literature. CONCLUSIONS: This study highlighted that sexuality is an underexplored topic between HCPs and young people, especially young people with disabilities and/or chronic conditions. Given the importance of sexuality to young people's mental and physical health, research addressing barriers to these discussions and development of evidence-informed resources to support HCPs and youth to engage in conversations about sexuality should be a priority.

First stage international validation of the pediatric family needs questionnaire (FNQ-P).

OBJECTIVES: 1. Evaluate reliability and construct validity of the newly-developed Family Needs Questionnaire - Pediatric (FNQ-P), a 40-item measure assessing the extent to which family's needs are met after a child has an acquired brain injury (ABI). 2. Explore the impact of selected child characteristics on FNQ-P scores. RESEARCH DESIGN: MEASUREMENT STUDY: Methods: Parents/caregivers of children with ABI (2-18 years) were recruited across four sites (Canada, Sweden, Lithuania, Australia) for FNQ-P test-retest evaluation. These sites plus a fifth (United Kingdom) completed construct validity evaluation with the Family Burden of Injury Inventory and Strengths and Difficulties Questionnaire. Associations between FNQ-P score and age, injury severity, time post-injury and site were evaluated via stepwise regression. RESULTS: FNQ-P mean scores (n=61) were 64.1% (SD 22.3) and 58.8% (SD 22.6) on test and retest, respectively. Test-retest reliability was good overall (ICC=0.78, 95% CI 0.65-0.86). There was a weak association between FNQ-P and FBII (r=-0.23, P=0.049, n=71), but no association between FNQ-P and SDQ scores (maximum r=0.16, P>0.15). None of the variables studied predicted FNQ-P scores. CONCLUSION: The FNQ-P demonstrated good test-retest reliability. Further validity assessment is recommended. Lack of relationship between FNQ-P and variables studied suggests independence of family needs.

Solution-Focused Brief Therapy (SFBT) with individuals with brain injury and their families.

BACKGROUND: Brain injury is considered a chronic condition and the medical model has long been the traditional paradigm underlying rehabilitation programs for people after acquired brain injury (ABI). In recent years, strengths-based approaches have been increasingly proposed, but little has been written about specific psychotherapeutic application in ABI rehabilitation. OBJECTIVE: To describe a strengths-based model, Solution-Focused Brief Therapy (SFBT) and its clinical application to individuals with ABI and their families. METHODS: The author describes the assumptions, tenets, and principles of SFBT, a competency-based and resource-based model that orients to the future and focuses on strengths and successes. A direct comparison is made between the traditional medical paradigm and the solution-focused paradigm. RESULTS: Key ingredients of SFBT are described, including specific strategies, techniques, and its clinical application with individuals with ABI and their families. Limitations around using SFBT and the need for further research with ABI populations are reported. CONCLUSIONS: SFBT is a welcome shift away from the problem-saturated stories that underlie traditional rehabilitation approaches. The strengths-based underpinning of SFBT is a promising psychotherapeutic intervention that merits further investigation with ABI populations.

The development of intimate relationships in adolescent girls and women with traumatic brain injury: a framework to guide gender specific rehabilitation and enhance positive social outcomes.

Background: Traumatic brain injury is a neurological disorder of biopsychosocial nature influenced by sex and gender interactions across the lifespan. Traumatic brain injury sustained during adolescence can result in cognitive and social communication impairments that compromise the development and maintenance of intimate social relationships. This can increase both short and long-term vulnerability to poor mental health, social isolation, lack of meaningful friendships, exploitation, and abuse. Females with traumatic brain injury experience greater loss of confidence and have increased risk of victimization, sexual abuse, and violence. This paper aims to provide a framework to inform gender specific rehabilitation of social communication and intimacy, to enhance positive social outcomes for girls and women with Traumatic Brain Injury.Methods: The framework is developed through presentation of a conceptual, multi-dimensional model of intimacy and discussion of current evidence regarding trauma-related cognitive/social-communication impairments and considerations regarding social media.Results: Intimacy is strongly influenced by today's technology-informed "youth culture" and for those with Traumatic Brain Injury, is impacted by cognitive and social communication impairments. Females experience different challenges in recovery and experience of intimacy. There is a need to support girls and women with Traumatic Brain Injury as they develop intimate relationships.Conclusions: This framework can guide the development of female gender-specific rehabilitation and inform future research to promote positive social outcomes.Implications for rehabilitationIntimate relationships are a critical component of mental health and an important part of human development; however, the challenges faced by adolescent girls and woman with TBI in developing and maintaining intimate relationships are often overlooked in traditional rehabilitation programs.A multi-dimensional model of intimacy will help rehabilitation professionals understand the complexities of interventions needed to support healthy intimacy, as well as for harm prevention.Rehabilitation professionals play an important role in advocating for gender-specific supports and interventions.There is a need for early interventions, grounded in today's technological and social media culture, that will support healthy intimacy for adolescent girls and women with TBI.

Development of the family needs questionnaire - pediatric version [FNQ-P] - phase I.

OBJECTIVE: To adapt the well-validated 37-item adult Family Needs Questionnaire to make it suitable for families of children and youth with acquired brain injury (ABI). METHODS: Measurement construction employed a modified Delphi technique to identify the most relevant content items for the pediatric Family Needs Questionnaire (FNQ-P). The Delphi process involved a panel of 11 ABI-team clinicians and seven family caregivers of children/youth with an ABI and four rounds of anonymous voting on each item's importance. Qualitative responses related to each item's review were incorporated into item content and wording decisions. Cognitive interviews were conducted with three parents after the Delphi to evaluate face and content validity. RESULTS: The outcome of the final Delphi round was a set of 40 items within the original FNQ's original six categories: Health Information (n = 10), Emotional Support (n = 6), Instrumental Support (n = 4), Professional Support (n = 6), Community Support (n = 6), and Involvement with Care (n = 8). Cognitive interviews resulted in changes to formatting, rating scale, and item wording, and culminated in overall consensus about the FNQ-P's face/content validity. CONCLUSIONS: Use of the Delphi process with family and clinical partners resulted in content-endorsed pediatric FNQ that is ready for validation work prior to transfer to clinical practice.

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 family intervention for adolescents: A solution-focused approach.

BACKGROUND: Strengths-based approaches are increasingly utilized in health care, but little is known about their practical application in rehabilitation with families after pediatric acquired brain injury (ABI). OBJECTIVE: To describe a strengths-based model, Solution-Focused Brief Therapy (SFBT) and its clinical application to family intervention for adolescents with ABI. METHODS: A literature review highlights a growing movement towards resilience and strengths-based approaches to family intervention after pediatric ABI. The authors introduce the assumptions, tenets, and clinical application of SFBT, which is a competency-based and resource-based model that focuses on family strengths and successes. A direct comparison is made between the traditional medical model and the solution-focused paradigm. RESULTS: Key elements of SFBT are described, including specific strategies, techniques, and its clinical application in the Brain Injury Family Intervention for Adolescents (BIFI-A). The BIFI-A, designed for adolescents with ABI and their families, is a 12-session manualized intervention that encompasses education about ABI, skill building, and emotional support. CONCLUSIONS: Given the increased interest for research regarding strengths-based approaches in pediatric rehabilitation, the utilization of SFBT with families of adolescents with ABI warrants further attention and investigation. The BIFI-A, with its underpinnings of SFBT, is a promising new family system intervention that also merits further research.

Experiences, attitudes, and needs related to sexuality and service delivery in individuals with traumatic brain injury.

OBJECTIVE: To explore the experiences, attitudes, and needs related to service delivery regarding sexuality issues in individuals with traumatic brain injury (TBI). METHODS: Community-dwelling individuals with TBI having completed a post-acute TBI rehabilitation program. The TBI sample consisted of 16 men (42.1%) and 22 women (57.9%), with an average age of 38.9 years (SD = 9.9) and 12.8 years of education (SD = 2.8). They were on average 2.6 years post-injury (SD = 1.4). Glasgow coma scale at admission was on average 12.6 (SD = 3.5). Participants completed a questionnaire adapted to individuals with TBI addressing experiences, attitudes, and needs regarding sexuality and service delivery. RESULTS: Individuals with TBI reported a low frequency of specific discussions with their treating clinician(s) about sexual and reproductive health issues, as well as many unmet needs regarding sexuality. None of the participants considered discussion about these issues to be inappropriate. They reported more favourable attitudes towards discussing sexual health topics compared to actual service delivery with family physicians, general practitioners, psychologists, and other health care professionals (p's <  0.05). CONCLUSIONS: Individuals with TBI desired more openness about discussing sexual concerns. Findings are discussed in terms of the clinical implications to meet the individuals' needs regarding sexual concerns after TBI.

A Systematic Review of Hospital-to-School Reintegration Interventions for Children and Youth with Acquired Brain Injury.

OBJECTIVES: We reviewed the literature on interventions that aimed to improve hospital-to-school reintegration for children and youth with acquired brain injury (ABI). ABI is the leading cause of disability among children and youth. A successful hospital-to-school reintegration process is essential to the rehabilitative process. However, little is known about the effective components of of such interventions. METHODS AND FINDINGS: Our research team conducted a systematic review, completing comprehensive searches of seven databases and selected reference lists for relevant articles published in a peer-reviewed journal between 1989 and June 2014. We selected articles for inclusion that report on studies involving: a clinical population with ABI; sample had an average age of 20 years or younger; an intentional structured intervention affecting hospital-to-school transitions or related components; an experimental design; and a statistically evaluated health outcome. Two independent reviewers applied our inclusion criteria, extracted data, and rated study quality. A meta-analysis was not feasible due to the heterogeneity of the studies reported. Of the 6933 articles identified in our initial search, 17 articles (reporting on 350 preadolescents and adolescents, aged 4-19, (average age 11.5 years, SD: 2.21) met our inclusion criteria. They reported on interventions varying in number of sessions (one to 119) and session length (20 minutes to 4 hours). The majority of interventions involved multiple one-to-one sessions conducted by a trained clinician or educator, homework activities, and parental involvement. The interventions were delivered through different settings and media, including hospitals, schools, and online. Although outcomes varied (with effect sizes ranging from small to large), 14 of the articles reported at least one significant improvement in cognitive, social, psychological, or behavioral functioning or knowledge of ABI. CONCLUSIONS: Cognitive, behavioral, and problem-solving interventions have the potential to improve school reintegration for youth with ABI. However, more comprehensive interventions are needed to help link rehabilitation clinicians, educators, adolescents, and families.

Sexuality after traumatic brain injury: a critical review.

Brain injury can directly and indirectly affect important aspects related to sexuality and sexual function. In this critical review of the literature, traumatic brain injury (TBI) and sexuality are examined. A general review of the concept of sexuality and the neurological correlates of sexual function are proposed as a framework to understand the cognitive, behavioral and physical effects of TBI on sexuality and sexual function. Studies are then classified according to the participants enrolled and findings are presented from the professional's, the survivor's, the patient/partner's, and the non-injured spouse's perspectives. Results are discussed taking into account methodological limitations and knowledge gaps. Next, implications for sexual rehabilitation for individuals with TBI are discussed. Finally, suggestions for future research and their pertinence for improving rehabilitation outcomes are considered.

Family caregivers' support needs after brain injury: a synthesis of perspectives from caregivers, programs, and researchers.

There is a dearth of support for family members who assume caregiving responsibilities following acquired brain injury (ABI). This qualitative study broadens the understanding of ABI caregiver support needs through data triangulation from multiple interview sources across different settings. Thirty-nine caregivers across urban and rural settings in Ontario participated in focus groups. Interviews focused on ABI support services received, their utility, access barriers, needed supports, and suggestions for service delivery. Key informant interviews were also held with four US researchers funded through the TBI Model Systems, one Canadian provincial government health official, and representatives from 11 Ontario ABI programs including two brain injury associations. Interviews focused on existing or proposed caregiver programs and gaps in services. A coding framework was developed through content analysis, centring on five themes: coping, supports that worked, supports needed, barriers, and ideal world recommendations. Perspectives from those involved in receiving, providing and researching caregiver interventions following ABI were synthesized to provide a thorough, detailed depiction of the ongoing support needs of caregivers. This convergence of evidence underscores that caregiver support needs transcend geographical boundaries and must be comprehensive, accessible, long-term, and encompass education, emotional, and instrumental support. Recommendations for ABI caregiver support services are offered.

Development and preliminary evaluation of a structured family system intervention for adolescents with brain injury and their families.

PRIMARY OBJECTIVE: To develop and conduct a preliminary evaluation of a manualized family system intervention for adolescents with acquired brain injury (ABI). RESEARCH DESIGN: Descriptive/exploratory design using mixed methods: modified-Delphi technique, self-administered questionnaires and semi-structured interviews. METHODS AND PROCEDURES: Topic modules and content areas for the adolescent version (BIFI-A) were developed, building on topic areas from the empirically-based Brain Injury Family Intervention (BIFI) for adults. Eight adolescents with ABI, their families and three clinicians who implemented the BIFI-A participated in evaluation of the BIFI-A. Evaluation data were obtained from all participants at the end of each session and post-intervention. Content validity of the revised version was formally evaluated. MAIN OUTCOMES AND RESULTS: A seven-session curriculum, focusing on education, skill building and emotional support, was developed and tested. Clinical utility evaluation survey results indicated 81-89% mean agreement, with positive statements rating helpfulness, importance, relevance, and satisfaction with the BIFI-A. Ninety per cent of adolescent, family and clinician participants said they would recommend the intervention to families of adolescents with an ABI. Survey and qualitative findings from families and test clinicians were used to refine the BIFI-A into a 12-session curriculum. CONCLUSIONS: The findings provide evidence that BIFI-A is a promising family system intervention. Additional research is needed to determine its benefits.

Giving Youth a Voice (GYV): a measure of youths' perceptions of the client-centredness of rehabilitation services.

BACKGROUND: Although client-centred care is regarded as the optimum way of delivering health care, there is currently no method to measure the client-centredness of services for youth with disabilities. PURPOSE: To develop a measure of youths' perceptions of the client-centredness of health care services in rehabilitation. METHODS: The Giving Youth a Voice (GYV) questionnaire was adapted from the Measure of Processes of Care, a measure of caregiving from the perspective of parents. Items for a youth version of the questionnaire were generated from focus groups with youths who had received rehabilitation services. Content analysis of the groups yielded four themes, which became the subscales for the new measure. FINDINGS: GYV, a 56-item measure, has good internal reliability and test-retest reliability. Convergent validity was estimated through correlations with the Client Satisfaction Questionnaire. IMPLICATIONS: GYV provides an opportunity for youth with disabilities to have a voice about the rehabilitation services they receive.

Family interventions after acquired brain injury and other chronic conditions: a critical appraisal of the quality of the evidence.

Family caregivers of individuals with acquired brain injury (ABI) and other chronic disabilities typically experience long-term adjustment difficulties within the entire family system. Interventions to assist parents and spouses are rare, and for siblings and offspring even more so. Among the few existing interventions, only a very small number have been evaluated in any scientifically sound manner for effectiveness in alleviating stress and burden. A highly targeted literature search of family caregiver intervention studies identified 31 articles, only four of which were in brain injury, which met specific inclusion criteria. Randomized controlled trial studies of six types of family caregiver interventions were systematically assessed for their quality of design and evidence of effectiveness. The results revealed a body of literature lacking in methodological rigor. At present there is no strong research evidence supporting any specific intervention method for family caregivers of individuals with ABI or any of the other chronic condition groups surveyed, although an abundance of anecdotal, descriptive, and quasi-experimental support exists in the rehabilitation literature. This conclusion points to the need for launching new pilot studies and rigorous evaluations of caregiver intervention effectiveness, some of which are now emerging or in process in several locations across the United States.

Predictors of family system functioning after brain injury.

OBJECTIVES: To identify predictors of family system functioning after acquired brain injury (ABI). RESEARCH DESIGN: Retrospective design. METHODS AND PROCEDURES: Data on ABI-related impairments, level of awareness, neuropsychological functioning, caregiver strain and family system functioning were extracted from the files of 66 individuals with ABI and 148 family members who had enrolled in a community-based support programme. MAIN OUTCOMES AND RESULTS: Individuals with ABI, mothers, spouses, siblings and the family as a unit reported significant distress in family functioning compared to the norm. Higher caregiver strain and client gender (i.e. female) were predictive of poorer family system functioning. Neither ABI impairments nor neuropsychological variables were correlated with family functioning. CONCLUSIONS: The effects of ABI extend beyond the injured person and primary caregiver. The need for a family systems approach to family intervention after ABI is supported. Implications for practice and future research are discussed.

Crisis and its assessment after brain injury.

PRIMARY OBJECTIVE: To develop a measure to assess crisis after acquired brain injury (ABI). RESEARCH DESIGN: A triangulated research strategy, using both qualitative and quantitative methods, was employed to develop the crisis measure. METHODS AND PROCEDURES: The measure was developed in two phases. In the first phase, by using focus group methodology, the experience of crisis following brain injury was described. The second phase involved developing the questionnaire items, pilot testing the measure and conducting initial reliability testing. MAIN OUTCOMES AND RESULTS: The six themes derived from the content analysis led to the creation of the measure, with versions for individuals who have an ABI, family members and professionals. Test-re-test reliability results (n = 40) were adequate. CONCLUSIONS: The results suggest that crisis is experienced as precarious homeostasis with individuals with brain injury, varying in intensity over time, subjectively viewed as never really absent.

Family system outcome following acquired brain injury: clinical and research perspectives.

OBJECTIVES: To investigate family system outcome following acquired brain injury (ABI) using the Family Assessment Measure-III (FAM-III). RESEARCH DESIGN: Clients and families referred to the Family Support Service completed the FAM-III, a measure of family system functioning. METHODS AND PROCEDURES: Forty-three persons and 92 family members completed the FAM-III as part of intake. FAM-III scores were calculated and compared within the family, between subscales, and with established norms. RESULTS: FAM-III scores of the family member sample were significantly elevated compared to individuals with ABI and compared to the norm across all seven domains of family functioning. No significant relationship was found between family member relationship status or time post-injury and overall FAM-III scores. CONCLUSIONS: Family members identified distressed family functioning across all domains compared to survivors and compared to population norms. The FAM-III provides clinical utility in assessing family system functioning and shows promise as a family system outcome measure.