Pain trajectories and well-being in children and young people with cerebral palsy: A cohort study.

AIM: To identify 5-week pain intensity trajectories and their association with physical and psychological well-being in children/young people with cerebral palsy (CP). METHOD: A cohort study was conducted with 101 Canadian children/young people with CP, of whom 49 were female, with an overall mean age of 12 years 11 months (SD 3 years 1 month), range of 8 to 18 years, and classified in any Gross Motor Function Classification System level. Self-reported pain intensity (Faces Pain Scale - Revised) was collected weekly for 5 weeks and physical and psychological well-being (KIDSCREEN-27) at baseline and 5 weeks. Statistical analyses included latent class growth and general linear models. RESULTS: All Gross Motor Function Classification System levels were represented (I = 40.6%; II = 15.8%; III = 20.8%; IV = 13.9%; V = 8.9%). Five pain intensity trajectories were identified. Three trajectories had very low (35.4%), low (32.4%), or high (4.9%) mean stable pain. Two trajectories had moderate changing pain (16.8%) and high pain decreasing to moderate levels (10.5%) respectively. Trajectory participants with stable high pain had the lowest physical well-being (adjusted ß = -10.01; 95% confidence interval [CI] = -19.37 to -0.66). Those in the three trajectories with the highest mean baseline pain intensity (>3 out of 10) had the lowest psychological well-being (adjusted ß = -8.27, 95% CI = -14.84 to -1.70; ß = -6.74, 95% CI = -12.43 to -1.05; ß = -5.82, 95% CI = -15.34 to 3.71). INTERPRETATION: Almost one-third of participants had moderate-to-high pain intensity trajectories. Membership in the higher pain intensity trajectories was associated with lower physical and psychological well-being. WHAT THIS PAPER ADDS: Five distinct 5-week pain intensity trajectories were identified in children/young people with cerebral palsy. Thirty-two per cent of participants had moderate-to-high pain intensity trajectories. Participants in the trajectories with higher pain intensity reported lower physical and psychological well-being.

OBJETIVO: Identificar trajetórias de intensidade de dor de 5 semanas e sua associação com o bem-estar físico e psicológico em crianças/jovens com paralisia cerebral (PC). MÉTODO: Foi realizado um estudo de coorte com 101 crianças/jovens canadenses com PC, sendo 49 do sexo feminino, com média de idade geral de 12 anos e 11 meses (DP 3 anos 1 mês), faixa de 8 a 18 anos, e classificados em qualquer nível do Sistema de Classificação da Função Motora Grossa. A intensidade da dor autorreferida (Faces Pain Scale - Revised) foi coletada semanalmente por 5 semanas e o bem-estar físico e psicológico (KIDSCREEN-27) no início e 5 semanas. As análises estatísticas incluíram crescimento de classe latente e modelos lineares gerais. RESULTADOS: Todos os níveis do Sistema de Classificação da Função Motora Grossa (GMFCS) foram representados (I = 40,6%; II = 15,8%; III = 20,8%; IV = 13,9%; V = 8,9%). Cinco trajetórias de intensidade de dor foram identificadas. Três trajetórias tiveram muito baixa (35,4%), baixa (32,4%) ou alta (4,9%) média de dor estável. Duas trajetórias apresentaram dor moderada em mudança (16,8%) e dor alta diminuindo para níveis moderados (10,5%), respectivamente. Os participantes com trajetória com dor alta estável tiveram o menor bem-estar físico (ß ajustado = -10,01; intervalo de confiança de 95% [IC] = -19,37 a -0,66). Aqueles nas três trajetórias com a maior intensidade média de dor na linha de base (> 3 em 10) tiveram o menor bem-estar psicológico (ß ajustado = -8,27, IC 95% = -14,84 a -1,70; ß = -6,74, 95% IC = -12,43 a -1,05; ß = -5,82, IC 95% = -15,34 a 3,71). INTERPRETAÇÃO: Quase um terço dos participantes tiveram trajetórias de intensidade de dor moderada a alta. A participação nas trajetórias de maior intensidade de dor foi associada a menor bem-estar físico e psicológico.

Identifying pain trajectories in children and youth with cerebral palsy: a pilot study.

BACKGROUND: Although chronic pain is common in children with cerebral palsy (CP), little is known about short-term pain fluctuations and their impact on children's well-being. High-quality cohort studies are needed to understand the clinical course of pain in this population. We aimed to determine the feasibility of conducting a multicentre cohort study. In this pilot study we assessed: 1) study processes, 2) resource and 3) management indicators including recruitment and follow-up rates, data completeness, participant characteristics, and successes and barriers in the study conduct. METHODS: A multi-centre pilot cohort study was conducted with 10 Canadian children/youth with CP attending one of two children's rehabilitation centers. We collected self-reported pain intensity (Faces Pain Scale-Revised [FPS-R], Numeric Rating Scale [NRS]); pain interference (PROMIS PI); pain location (pain diagram); physical and psychological well-being (KIDSCREEN-27), sleep characteristics, preceding months' interventions, and some clinical characteristics at baseline. Average pain intensity was reported weekly for five weeks. Well-being, sleep and interventions were measured at baseline and again at five weeks. We used feasibility indicators to evaluate:1) study processes (e.g. recruitment, attrition rates); 2) resources (e.g. data completion, budgetary challenges); and 3) management (e.g. data optimization, variability of participants and pain scores). RESULTS: Between March and May 2019, 24 children and their parents/guardians were contacted and 20 met eligibility criteria. Of those, 10 agreed to in-person screening (50%) and were subsequently enrolled. The follow-up rate was 90% and self-reported missing data was minimal. Ninety percent of participants chose e-questionnaire follow-ups versus mailed paper questionnaires. Sixty percent required reminders to complete e-follow-ups. Participants were aged 8-17 years, five were female, GMFCS levels I-IV (none with level V), 90% had spastic CP and 80% reported having pain in the preceding week. Pain intensity (FPS-R) between participants ranged from 0-8/10 at baseline and 0-6/10 across all four weekly follow-ups. CONCLUSIONS: This pilot study demonstrates the feasibility of conducting a multicentre cohort study to identify short-term pain trajectories and measure their association with well-being in children and youth with CP. Additional strategies to improve recruitment and accessibility for those with GMFCS levels V should be implemented in future studies.

Tensions in Maternal Care for Children, Youth, and Adults With Autism Spectrum Disorder.

This study explored the experiences of mothers caring for an individual with autism spectrum disorder (ASD) ranging from 5 to 25 years of age, and examined pervasive tensions in caregiving. Guided by ethnographic methods, a retrospective cross-sectional study was conducted. Interviews with 85 mothers were analyzed inductively. Prevalent tensions in maternal caregiving were identified: (a) difficulties obtaining, yet resistance to, an ASD diagnosis; (b) identified giftedness of the child versus notions of deficit imposed by others; (c) disability-related behaviors erroneously interpreted as 'poor parenting'; (d) contradictory considerations in diagnosis disclosure; (e) the invisibility yet pervasiveness of ASD; (f) extensive need for, yet the lack of, accessible services; (g) ASD-related care demands versus other pressing responsibilities; (h) arguments for inclusive versus exclusive services; and (i) aims of nurturing independence versus managing safety risk. Tensions were heightened by insufficient supports relative to need. Implications and recommendations for practice and policy are offered.

Positive Distraction in Pediatric Healthcare Waiting Spaces: Sharing Play Not Germs through Inclusive, Hands-Free Interactive Media.

Purpose: To investigate the value of shared opportunities for positive distraction in pediatric healthcare environments. Methods: Self-selected activities of 271 young people (5-19 years) with diverse neurodevelopmental conditions were observed in an ambulatory pediatric rehabilitation clinic. Shared opportunities included hands-free media (nature video or interactive media) and an aquarium. Anxiety was self-reported on the State Trait Anxiety Scale upon arrival and after 10 minutes in the waiting space. Results: Young people engaged more with shared opportunities for distraction (n = 170/271) than personal items brought from home (n = 119/271), p = 0.02. Personal electronic devices were used by 67 young people, but did not positively impact anxiety. Interactive media and the aquarium significantly reduced anxiety (p < 0.04) while the nature video appeared to increase anxiety (p = 0.036). Age influenced activity preference and anxiety. Shared, hands-free interactive media engaged individuals of diverse age and mobility. Conclusion: Shared opportunities for positive distraction in healthcare facilities are valuable, particularly hands-free interactive media.

Messy entanglements: research assemblages in heart transplantation discourses and practices.

The paper engages with a variety of data around a supposedly single biomedical event, that of heart transplantation. In conventional discourse, organ transplantation constitutes an unproblematised form of spare part surgery in which failing biological components are replaced by more efficient and enduring ones, but once that simple picture is complicated by employing a radically interdisciplinary approach, any biomedical certainty is profoundly disrupted. Our aim, as a cross-sectorial partnership, has been to explore the complexities of heart transplantation by explicitly entangling research from the arts, biosciences and humanities without privileging any one discourse. It has been no easy enterprise yet it has been highly productive of new insights. We draw on our own ongoing funded research with both heart donor families and recipients to explore our different perceptions of what constitutes data and to demonstrate how the dynamic entangling of multiple data produces a constitutive assemblage of elements in which no one can claim priority. Our claim is that the use of such research assemblages and the collaborations that we bring to our project breaks through disciplinary silos to enable a fuller comprehension of the significance and experience of heart transplantation in both theory and practice.

Interactive media as a tool for reducing waiting anxiety at paediatric rehabilitation hospitals: a randomized controlled trial.

AIM: To investigate the efficacy of waiting room media for reducing anxiety and increasing satisfaction at a paediatric rehabilitation hospital. METHOD: In this clustered, parallel, randomized controlled trial, 310 young people with disabilities (age range 5-19y) and their parents attending outpatient clinics were assigned to interactive media (n=113), a silent nature video (n=97), or media-free comparison (n=100) groups. Young person and parent anxiety was reported using the State-Trait Anxiety Inventory (STAI) on arrival and after 10 minutes in the waiting space. Questionnaires measured young person, parent, and staff satisfaction. RESULTS: Young people exposed to interactive media reported a postexposure state anxiety that was 1.1 raw points (2.7 standardized points) lower on the STAI than the comparison group (95% confidence interval [CI] -1.9 to -0.22). There was no difference in postexposure state anxiety between the passive media and comparison groups (95% CI -0.64 to 1.1). Parents' state anxiety did not differ between conditions, but interactive media were associated with greater satisfaction (p=0.009). Of 120 staff, 119 reported that interactive media improved the clinic experience for families. INTERPRETATION: Interactive media designed for accessible, hands-free play mitigate waiting anxiety and increases satisfaction. This paper provides evidence to guide design and decision-making around the use of interactive media in health care spaces. WHAT THIS PAPER ADDS: Interactive media reduced preclinic waiting anxiety for young people with disabilities. Interactive media were accessible to young people with a range of mobility. Interactive media increased parental and staff satisfaction in the clinic. Guidelines for the design of hands-free, inclusive interactive media for health care facilities are presented.

"Live It to Understand It": The Experiences of Mothers of Children With Autism Spectrum Disorder.

Mothers of children with an autism spectrum disorder (ASD) variably experience challenges in their caregiving role. This ethnographic study examined the caregiving experiences of mothers of a young person with ASD (aged ≤25 years). Semistructured interviews were conducted with 85 mothers across three Canadian regions. A follow-up subsample of 10 mothers took part in participant observation sessions in the home and/or other environments within the community. Analysis yielded themes that depicted the following: redefining child and family aspirations, forging a shifted identity, and the need to "live it" to understand mothering a young person with ASD. Supports and services were perceived to be required but often insufficient to meet the needs. Findings identify a range of challenges, lessons learned, and a reconfigured sense of mothering. An emerging model of mothering a child with ASD is presented. Implications for practice, policy, and research are offered.

The 'placement' of people with profound impairments across the lifespan: re-thinking age criteria.

BACKGROUND: Advances in lifesaving technologies and treatments make it possible for children with profound physical and cognitive impairments to survive into adulthood. Questions regarding how and where they should live are discussed rarely and, when they are, primarily focus on safety and/or containing costs. Since models of long-term care provision are age-based, children who reside in institutions are 'discharged' to adult facilities when they reach an arbitrary age. Such transfers may not be in the best interests of these young people or their families. Our aim in this debate is to highlight why age is a problematic criterion for placement decisions, with the goal of stimulating further research and inquiry. DISCUSSION: Transfers from pediatric to adult institutions are driven primarily by funding arrangements and underpinned by stage-based theories of human development. Arguments supporting such transfers point to the value of communal living with same age peers, and engagement in age-appropriate activities. These goals are questionable for individuals who are minimally interactive and/or where equally worthy interactions are feasible in intergenerational settings. Instead their accommodation needs might more closely align with palliative care principles of supporting individuals and families to enjoy what they bring to each other's lives and minimize suffering. Innovative models of 'vertical care' and 'lifetime homes', which enable continuous flexible services across the lifespan, are discussed as examples of alternative approaches requiring further debate and research. SUMMARY: Entrenched funding and service models that require the transfer of profoundly impaired young people from pediatric to adult facilities need to be re-examined with considerations of best interests, needs, and preferences of individuals and their families. Questions of what constitutes a 'good life' for these individuals are tenacious and require further thought and research. Nevertheless, they need to be regarded as citizens of our human community deserving of a good life in whatever form that may take, in settings that enable them to flourish.

Doing 'technological time' in a pediatric hemodialysis unit: an ethnography of children.

Since the 1960s, hemodialysis has been a common intervention for children with end-stage renal disease, however little is known about how they experience hospital-based hemodialysis. A focused ethnography was undertaken to explore children׳s perspectives of the time, space and technology of a hemodialysis unit at a Canadian pediatric urban hospital. The children׳s temporal and socio-spatial positions were an effect of their technologically mediated embodiment and shaped their perspectives, evaluations and expectations. The findings suggest that further explorations are needed to envision ways to create with children an overall positive place that merges and balances technological care with child focused care.

Analysis of a support group for children of parents with mental illnesses: managing stressful situations.

We report an ethnographic analysis of a psycho-education and peer-support program for school-aged children of parents with mental illnesses. We conducted a critical discourse analysis of the program manual and observed group interactions to understand whether children shared program goals predetermined by adults, and how, or if, the intervention was responsive to their needs. Children were expected to learn mental illness information because "knowledge is power," and to express difficult feelings about being a child of a mentally ill parent that was risky. Participants used humor to manage group expectations, revealing how they made sense of their parents' problems, as well as their own. Suggestions are made for determining good mental health literacy based on children's preferences for explaining circumstances in ways they find relevant, and for supporting children's competencies to manage relationships that are important to them.

Bourdieu at the bedside: briefing parents in a pediatric hospital.

The philosophy of family-centered care (FCC) promotes partnerships between families and staff to plan, deliver, and evaluate services for children and has been officially adopted by a majority of pediatric hospitals throughout North America. However, studies indicated that many parents have continued to be dissatisfied with their decision-making roles in their child's care. This is particularly salient for parents of children with chronic ongoing complex health problems. These children are dependent upon medical technology and require frequent hospitalizations during which parents must contribute to difficult decisions regarding their child's care. Given this clinical issue, an alternative theoretical perspective was explored to redress this problem. Pierre Bourdieu's theoretical concepts of field, capital, and habitus were used to analyze the hierarchical relationships in pediatric acute care hospitals and to design a briefing intervention aimed at improving parents' satisfaction with decision making in that health care setting.

Functional outcomes associated with adaptive seating interventions in children and youth with wheeled mobility needs.

OBJECTIVE: To determine the parent-reported functional outcomes associated with adaptive seating devices for wheeled mobility devices used by young people aged 1 to 17 years. DESIGN: Longitudinal case series. SETTING: Homes of participating parents. PARTICIPANTS: Parents (N=70, 63 mothers, 6 fathers, 1 grandmother) who had children with adaptive seating needs. INTERVENTION: Adaptive seating system for wheeled mobility devices. MAIN OUTCOME MEASURE: Family Impact of Assistive Technology Scale for Adaptive Seating (FIATS-AS). RESULTS: All parents completed the FIATS-AS 4 times-2 times before and 2 times after their child received a new adaptive seating system. Mixed-design analysis of variance did not detect significant mean differences among the FIATS-AS scores measured at baseline and 2 and 8 months after receiving the seating system (F2,134=.22, P=.81). However, the FIATS-AS detected a significant interaction between age cohort and interview time (F4,134=4.5, P<.001, partial η(2)=.16). Post hoc testing confirmed that 8 months after receiving the seating system was associated with a large improvement in child and family functioning for children <4 years, maintenance of functioning for children between 4 and 12 years, and a moderate decline in functioning for youth between 13 and 17 years. CONCLUSIONS: Adaptive seating interventions for wheeled mobility devices are associated with functional changes in the lives of children and their families that interact inversely with age. Future controlled longitudinal studies could provide further empirical evidence of functional changes in the lives of children and their families after the introduction and long-term use of specific adaptive seating interventions.

The design and testing of interactive hospital spaces to meet the needs of waiting children.

OBJECTIVE: To design an innovative interactive media display in a pediatric hospital clinic waiting space that addresses the growing demand for accessible, contact-surface-free options for play. BACKGROUND: In healthcare settings, waiting can be anxiety provoking for children and their accompanying family members. Opportunities for positive distraction have been shown to reduce waiting anxiety, leading to positive health outcomes. METHODS: An interactive media display, ScreenPlay, was created and evaluated using a participatory design approach and a combination of techniques including quality function deployment and mixed data elicitation methods (questionnaires, focus groups, and observations). The user and organizational design requirements were established and used to review contemporary strategies for positive distraction in healthcare waiting spaces and to conceptualize and test ScreenPlay. Ten staff members, 11 children/youths, and 6 parents participated in the design and evaluation of ScreenPlay. RESULTS: ScreenPlay provided a positive, engaging experience without the use of contact surfaces through which infections can be spread. It was accessible to children, youth, and adults of all motor abilities. All participants strongly agreed that the interactive media display would improve the healthcare waiting experience. CONCLUSIONS: ScreenPlay is an interactive display that is the result of a successful model for the design of healthcare waiting spaces that is collaborative, interdisciplinary, and responsive to the needs of its community. KEYWORDS: Design process, healing environments, hospital, interdisciplinary, pediatric.

Biomusic: a novel technology for revealing the personhood of people with profound multiple disabilities.

It is often difficult for family members and caregivers to interact with persons with profound multiple disabilities (PMD) because of the severely compromised communicative repertoire of this population. The resulting communication challenges may limit the ability of others to perceive personhood in individuals with PMD. This preliminary study investigated the effects of music generated in real time from physiological signals (biomusic) on caregiver perceptions of their interactions with persons with PMD. Caregivers (n = 10; parents and clinical staff) engaged in four, 10-min interactions with a person with PMD (n = 3; diagnoses = traumatic brain injury, pervasive developmental disorder, hypoxic brain injury), whose biomusic was projected throughout. Caregivers participated in two open-ended, semi-structured interviews to explore the effect of biomusic on these interactions. Most caregiver responses to biomusic were very positive, and many reported that biomusic caused an improvement in their interaction with and perceptions of the person with PMD. By providing audible evidence of the changing physiological state of persons with PMD, biomusic may enhance the perceived personhood of these individuals and enrich interactions with their family members and caregivers.

Determining the costs of families' support networks following a child's cancer diagnosis.

BACKGROUND: Cancer in children may place considerable economic burden on more than individual family members. The costs incurred to families' support networks (FSNs) have not been previously studied. OBJECTIVES: The study objectives were to (a) identify and determine independent predictors of the direct and time costs incurred by the FSN and (b) explore the impact of these cancer-related costs on the FSN. METHODS: A prospective mixed-methods study was conducted. Representing the FSN, parents recorded the resources consumed and costs incurred during 1 week per month for 3 consecutive months, beginning 1 month following their child's diagnosis. Descriptive statistics, multiple regression modeling, and descriptive qualitative analytical methods were used to analyze the data. RESULTS: In total, 28 fathers and 71 mothers participated. The median total direct and time costs for the 3 months were CAN$154 and $2776, respectively, per FSN. The largest component of direct and time costs was travel and foregone leisure. Direct and time costs were greatest among those parents who identified a support network at baseline. Parents relied on their FSN to "hold the fort," which entailed providing financial support, assuming household chores, maintaining the siblings' routines, and providing cancer-related care. CONCLUSIONS: Families' support networks are confronted with a wide range of direct and time costs, the largest being travel and foregone leisure. IMPLICATIONS FOR PRACTICE: Families' support networks play an important role in mitigating the effects of families' costs. Careful screening of families without an FSN is needed.

A mixed method approach to describe the out-of-pocket expenses incurred by families of children with cancer.

BACKGROUND: Families of children with cancer are confronted with a broad range of direct costs (out-of-pocket expenses), but the nature of these costs is poorly understood. This study aimed to disaggregate and describe these costs. PROCEDURE: A prospective, mixed method, cost-of-illness design was utilized. Starting in the fourth week following their child's diagnosis, parents recorded resources consumed, and costs incurred for 1 week per month for 3 consecutive months. Any additional costs not captured in this typical 1 week period were added for the remainder of the month. Parents also discussed their costs in an audio-taped interview at the end of the 3 months. Descriptive statistics and qualitative content analyses were performed to disaggregate and describe families' costs. RESULTS: In total, 99 families reported utilizing 16 cost categories and 74 cost items. Nearly three quarters of these costs were attributed to travel (56%) and food (18%). Costly items included acquisition of a car ($CAD35,000), relocation of a family ($CAD6,000), and purchase of a wheelchair ($CAD6,800). Parents described facing significant out-of-pocket expenses to ensure that their children had access to cancer treatment, to cope with the clinical treatment side effects of treatment, and to maintain the family household. CONCLUSION: Families of children with cancer experience a wide range of costs. Our understanding of the nature of their costs and resource use may formulate the basis for future cost assessments and provide insight into practice and policy changes aimed at lessening the economic impact of this burden.

Longitudinal Evaluation of Transition Services ("LETS Study"): protocol for outcome evaluation.

BACKGROUND: Because of advances in medical treatment, most children with physical disabilities can expect to achieve near normal life spans. Typically, coordinated teams of health care providers in specialized pediatric settings care for these children. As these children reach adulthood, however, the availability of services and expertise changes because the adult health care system has different processes designed to meet their specialized needs. Gaps in continuity of care during the transition from pediatric to adult services, and associated poor health outcomes are well documented. In response, new models of care are being introduced to address the complex process of health care transition. This paper describes a study protocol of a client-centred, prospective, longitudinal, mixed-method evaluation of linked model of health care across the lifespan (the LIFEspan Model), offered by a pediatric rehabilitation centre and an adult rehabilitation centre. METHOD: This project will include a process and an outcome evaluation of the LIFEspan Model. The process evaluation will detail the specific service delivery that occurs with respect to preparation for transition and transfer of care through chart audits of pediatric medical records and qualitative interviews with LIFEspan staff. The outcome evaluation will measure the effect of the model on: 1) maintaining continuity within the health care system from pediatric to adult care; and 2) secondary outcomes related to health, well-being, social participation, transition readiness, and health care utilization of youth with cerebral palsy and acquired brain injury. Standardized instruments will include Health Utilities Inventory, Assessment of Life Habits, Arc's Self-Determination, Assessment of Health-Related Quality of Life, Partners in Health Questionnaire, Social Support Questionnaire, and Self-Efficacy for Managing Chronic Disease. DISCUSSION: The LETS study will be original in its undertaking of a prospective examination of outcomes 1-year post-transition, use of multiple comparison groups, and absence of disability-related exclusion criteria ensuring that the transition experiences of varied populations of young people and their families will be represented. TRIAL REGISTRATION: http://www.clinicaltrials.gov, ID NCT00975338.

A prospective study to determine the costs incurred by families of children newly diagnosed with cancer in Ontario.

OBJECTIVES: A diagnosis of cancer in childhood places a considerable economic burden on families, although costs are not well described. The objectives of this study were to identify and determine independent predictors of the direct and time costs incurred by such families. METHODS: A prospective, cost-of-illness study was conducted in families of children newly diagnosed with cancer. Parents recorded the resources consumed and costs incurred during 1 week per month for three consecutive months beginning the fourth week following diagnosis and listed any additional costs incurred since then. Descriptive and multiple regression analyses were performed to describe families' costs (expressed in 2007 Canadian dollars) and to determine direct and time cost predictors. RESULTS: In total, 28 fathers and 71 mothers participated. The median total direct and time costs in 3 months were $CAD3503 and $CAD23 130, respectively, per family. The largest component of direct costs was travel and of time costs was time allocated previously for unpaid activities. There were no statistically significant predictors of direct costs. Six per cent of the variance for time costs was explained by language spoken at home. CONCLUSIONS: Families of children with cancer are confronted with a wide range of direct and time costs, the largest being travel and time allocated previously for unpaid activities.

Children's experiences of parental mental illness: a literature review.

AIM: This paper provides a review of published qualitative research on children's experiences of parental mental illness. METHODS: We undertook a comprehensive search of Medical Literature Analysis and Retrieval System Online, PsycINFO, Cumulative Index to Nursing and Allied Health Literature, Sociological Abstracts and Applied Social Sciences Index and Abstracts databases, as well as citation searches in Web of Science and manual searches of other relevant journals and reference lists of primary papers. RESULTS: Although 20 studies met the search criteria, only 10 focused exclusively on children's descriptions of their experience--the remainder elicited adults' perspectives on children's experiences of parental mental illnesses. Findings are organized under three themes: the impact of illness on children's daily life, how children cope with their experiences and how children understand mental illness. CONCLUSIONS: Despite references to pervasive knowledge gaps in the literature, significant information has been accumulated about children's experiences of parental mental illness. Considerable variability in research findings and tensions remain unresolved. For example, evidence is mixed as to children's knowledge and understanding of mental illnesses and how best to deploy resources to help them acquire optimal information. Furthermore, children's desire to be recognized as important to their parents' well-being conflicted with adults' perceptions that children should be protected from too much responsibility. Nevertheless, the cumulative evidence remains a key reason for advocating for psychoeducation and peer-support group interventions for children, which are endorsed by child and adult study participants alike.

Physiological and emotional responses of disabled children to therapeutic clowns: a pilot study.

This pilot study examined the effects of Therapeutic Clowning on inpatients in a pediatric rehabilitation hospital. Ten disabled children with varied physical and verbal expressive abilities participated in all or portions of the data collection protocol. Employing a mixed-method, single-subject ABAB study design, measures of physiological arousal, emotion and behavior were obtained from eight children under two conditions-television exposure and therapeutic clown interventions. Four peripheral autonomic nervous system (ANS) signals were recorded as measures of physiological arousal; these signals were analyzed with respect to measures of emotion (verbal self reports of mood) and behavior (facial expressions and vocalizations). Semistructured interviews were completed with verbally expressive children (n = 7) and nurses of participating children (n = 13). Significant differences among children were found in response to the clown intervention relative to television exposure. Physiologically, changes in ANS signals occurred either more frequently or in different patterns. Emotionally, children's (self) and nurses' (observed) reports of mood were elevated positively. Behaviorally, children exhibited more positive and fewer negative facial expressions and vocalizations of emotion during the clown intervention. Content and themes extracted from the interviews corroborated these findings. The results suggest that this popular psychosocial intervention has a direct and positive impact on hospitalized children. This pilot study contributes to the current understanding of the importance of alternative approaches in promoting well-being within healthcare settings.