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To identify 5-week pain intensity trajectories and their association with physical and psychological well-being in children/young people with cerebral palsy (CP).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.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 β = -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 β = -8.27, 95% CI = -14.84 to -1.70; β = -6.74, 95% CI = -12.43 to -1.05; β = -5.82, 95% CI = -15.34 to 3.71).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.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.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.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 (β 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 (β ajustado = -8,27, IC 95% = -14,84 a -1,70; β = -6,74, 95% IC = -12,43 a -1,05; β = -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.

This article presents diagrams (in the Deleuzian sense) developed from the insights of three middle school children with limited mobility about their experiences navigating social and spatial relations in their home, school and neighbourhoods. The paper explores the concept of assemblage as well as operationalising the Deleuzian idea of the diagram. The diagrams we produce (and the experiences they express) are developed in connection with dominant idealisations of neighbourhood and home range that function in North America to choreograph children's progression from infancy through adolescence. We undertake this diagramming in order to immediately and affectively illustrate the limits and possibilities of the challenges these young people face.

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 diver...

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.

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.

Accessible built environments are a critical component of Canada’s commitment to disabled children’s ‘right to enjoy full and decent lives’ [United Nations Convention on the Rights of the Child. 1989. Convention on the Rights of the Child. New York.] . Although valid, reliable research data about the accessibility of built environments are key to developing related policies, these data currently do not exist. To begin to redress this gap, we conducted a case study series followed by a survey to determine the accessibility of schools, homes and neighbourhoods directly from disabled children (The ScHaN Project). To present a concise summary of the findings that can inform equitable, evidence-based policies, we developed a scoring system for their homes, schools and neighbourhoods. Although our findings illustrate that eliciting and interpreting data from these children were complex undertakings, it is clear that none of these central environments met Canada’s obligation to enhance equity by enabling...

Purpose Policies and procedures exist in many jurisdictions regarding ‘anonymity’. These prohibit communication between transplant recipients and donor families. Social media may enable identification of donor families/recipients resulting in unsupervised communication and exchange of information. We have previously reported that heart transplant recipients want to connect with their donor families. The purpose of this study was to ask heart donor families what they thought about current practices around anonymity. Methods This was a phenomenologically informed audiovisual qualitative study. Inclusion criteria: ability to provide informed consent, having consented to heart donation, between 1 and 10 years after consent to donation, ability to communicate their experiences with clarity. Semi-structured open ended interviews were conducted in their homes, by an experienced qualitative interviewer. Interviews were audio/video-taped to capture voice and body language and were transcribed verbatim. Data collected also included personal artifacts (e.g. photos, letters) and field notes. Analysis involved coding language, bodily gestures, volume and tone in keeping with our phenomenologically informed visual method. Results Mean time since donation was 61.7 months (± 31.01; range 15-115 months). 22 donor families (40 participants) were interviewed from across Canada (27% Alberta, 32% Ontario & 41% B.C). Mean interview duration was 72 minutes (range 19-149). Four key themes emerged relating to anonymity: 21/22 families wanted to know the recipient(s), 19/22 wanted to meet the recipient(s). 17 had received letters from the recipient(s) and 12 had sent letters. Those who didn't write a letter frequently cited concerns around 3rd party vetting and redaction as a barrier. 21 of 22 donor families wanted to meet their recipients, and wanted to see policy change to enable this. Conclusion Donor families want to know and meet the recipients. This is in keeping with the views of heart transplant recipients who wish to know their donor families. We believe it is time to re-assess current policies on anonymity in transplantation. Donor families raised many possible solutions to how this may be accomplished.

Believing that “place matters” to biopower and to the governance of the new public health, we examine how a children’s hospital setting might be interpreted as a biopedagogical site. We take as the starting point of our analysis a treatment room in Toronto’s Hospital for Sick Children (SickKids)—Canada’s largest pediatric hospital. This particular room, dubbed Cujo’s Crease Satellite Anesthesia Room, was funded by donations from Curtis “Cujo” Joseph, a former Toronto Maple Leafs goaltender in the National Hockey League (NHL). Using trompe l’œil techniques, an artist transformed the room to look like a Toronto Maple Leafs locker room. We examine the range of possible meanings that might be taken up in Cujo’s Crease, paying particular attention to the biopolitical and cultural intersections among medicine, hockey, and biocitizenship. We argue that specific visual signs are employed to mobilize the discourses required by the space: masculinity, hockey as a national civilizing project, normative bodies, health care in a neoliberal age, and the NHL as benevolent care-giving corporation. We concluded that the discursive regimes of Cujo’s Crease are not innocent but are implicated in (bio)economical and biopedagogical imaginaries that render the sick child’s body as an assemblage of neoliberalism’s biocitizenship projects.

Building on Deleuze’s theories of the becoming of bodies, and notions of the geographic maturity of the disabled body we formulate an emplaced model of disability wherein bodies, social expectations and built form intersect in embodied experiences in specific environments to increase or decrease the capacity of disabled children to act in those environments. We join a growing effort to generate a more comprehensive model of disability, which moves beyond a binary between the individual and the social. Drawing on in-depth case studies conducted with 13 physically disabled children, we consider the intersections between their primary environments (homes, schools and neighbourhoods) and the multiple subjectivities they embody. Ultimately we make a case about the importance of responsive, situated models of subjectivity for the development of adaptations, and that physical and social adaptations must respond to these children’s complex and varied needs and desires.

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.

We argue for the importance of disabled persons’ access to creative expression. For disabled individuals, the development and enhancement of personhood may not be tied so much to everyday functioning, as to the opportunity for creative expression that affords dignity because it is recognized and validated by a community. Drawing on work by Erving Goffman and Judith Butler, we argue that creative performances can subvert the performativity (in Butler's sense) of disability. We posit that the inclusion of disabled persons in artistic performance settings may contribute to enhanced understanding and more positive attitudes toward disability by others in society. Our views have relevance for health care professionals, for policy-makers and for assistive technology research and development. This article draws on our experience with the concert debut of a novel device – the Virtual Musical Instrument™ (VMI) developed at Holland Bloorview Kids Rehabilitation Hospital in Toronto, Canada.

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.

The benefits and drawbacks of facilitating independent walking in children with physical mobility impairments, such as cerebral palsy, remain to be determined. This knowledge gap creates decision dilemmas about which mobility practices parents and children should adopt and rehabilitation professionals should foster. These dilemmas are reflected in continuing debates about allocation of time, effort and resources to optimize walking versus encouraging use of manual or powered wheelchairs. Recent studies have reported only modest measurable walking progress for severely disabled children using hands-free walkers. Despite these seemingly disappointing results, parents remained highly motivated to encourage their children to use these walking devices and appraised them very positively. In the present paper, we suggest that parents’ symbolic value of their children assuming upright comportment may explain why they perceive hands-free walkers positively and why they are so motivated to devote much time and effo...

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.

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.

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. Pediatr Blood Cancer 2013; 60: 438–445. © 2012 Wiley Periodicals, Inc.

Although social exclusion among typically developing school-aged children has been well explored, it is under-researched for children with disabilities even though they are at a higher risk for being excluded. While there are a number of different programs available to improve social inclusion at school, the appeal of these programs to children remains unknown. The objective of this pilot study was to elicit children’s perceptions of the desirable components of two commonly used social inclusion programs in Ontario, Canada. An exploratory mixed methods design (group discussion, observation notes, and a brief questionnaire) was used to provide an in-depth understanding of children’s perceptions of two social inclusion programs: A group-based game (n = 87) and a puppet show (n = 78). Children in each program reported that several aspects of the content appealed to them including learning about (1) bullying; (2) disability; (3) building friendships and encouraging social inclusion; (4) preventing social exclusion. The desirable aspects related to the format of the game and puppet show included (1) the interactive components; (2) the relevant topics and characters; (3) the length of the programs. Children’s insights about social inclusion programs should be considered in development and improvements of future programs.

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.

Background Walking for children with cerebral palsy (CP) has physiological and functional benefits, but also holds symbolic significance that largely remains unexplored. The aims of this pilot study were to describe beliefs about the value of walking held by children with CP and their parents, and to examine how these beliefs inform rehabilitation choices and perceptions of ‘success’. Methods A critical qualitative design was employed. Six parents and six children with CP (Gross Motor Function Classification System III or IV, aged 9 to 18 years) each participated in a private interview. Analyses examined the relationship between dominant social beliefs regarding walking and participants' accounts. Results Parents' accounts revealed that all adopted a stance of doing something/trying anything as part of being a ‘good parent’ and maintaining hope. Tapering of walking interventions contributed to feelings of guilt and doubt. Children primarily viewed walking as exercise rather than functional. Their accounts also demonstrated how they internalized negative attitudes towards disability and judged themselves accordingly. Conclusions The results of this pilot study provide provisional evidence regarding how dominant social values regarding walking and disability are taken up by parents and children. They suggest that rehabilitation programmes need to consider how they may unintentionally reinforce potentially harmful choices, and how best to engage families in discussions of their evolving values and treatment priorities. Further research is needed with a larger sample.

Objective: This pilot study aimed to determine the effects of therapeutic clowns for hospitalized children on their nurses. Methods: Semi-structured interviews with 13 nurses explored perceptions of the clowns. Measures of physiological arousal, emotion and anxiety were also obtained from nine of these 13 nurses under two conditions – the presence or absence of therapeutic clowns on the unit. Results: Physiologically, the automatic nervous system signals of eight of the nine nurses exhibited consistent changes in patterns of responding when the clowns were present. Emotionally, nurses' reports of negative mood states were also reduced; no changes in anxiety were found. Qualitative data corroborated these findings and suggest that although therapeutic clowns expressly work with children, they also have a relational impact. Conclusions: Clowning seems to improve communication, role negotiation and the meaning of the unit as a social and physical place. A recommendation for mixed method research designs is o...

While sparsely researched, funding structures may play an important role in use of and satisfaction with prostheses and related health services.The objectives of this study were to (1) quantify the direct costs of prosthesis wear, (2) explore variations in funding distribution, and (3) describe the role of affordability in prosthesis selection and wear.An anonymous, online cross-sectional descriptive survey was administered.Analyses were conducted of qualitative and quantitative data extracted from an international sample of 242 individuals with upper limb absence.Access to prosthesis funding was variable and fluctuated with age, level of limb absence and country of care. Of individuals who gave details on prosthetic costs, 63% (n = 69) were fully reimbursed for their prosthetic expenses, while 37% (n = 40) were financially disadvantaged by the cost of components (mean [SD] US$9,574 [$9,986]) and their ongoing maintenance (US$1,936 [$3,179]). Of the 71 non-wearers in this study, 48% considered cost an influential factor in their decision not to adopt prosthesis use.Prosthesis funding is neither homogeneous nor transparent and can be influential in both the selection and use of a prosthetic device.Inequitable access to prosthesis funding is evident in industrialized nations and may lead to prosthesis abandonment and/or diminished quality of life for individuals with upper limb absences. Increased efforts are required to ensure equitable access to upper limb prosthetics and related services in line with individuals' needs.

Transplant recipients are encouraged to write anonymous thank-you letters to the donor family. We prospectively explored heart transplant recipients' embodied responses to the 'obligation' to write a thank-you letter using audio/video-taped open-ended interviews (N = 27). Fifteen of the 19 participants, who wrote letters to the donor family, expressed or visually revealed significant distress about issues such as the obligation to write anonymously and the inadequacy of the 'thank-you'. Writing the thank-you letter is not a neutral experience for heart transplant recipients. Rethinking the obligatory practice regarding the thank-you letter and developing the necessary support for the recipient through this process is necessary.

The costs incurred by the families of children with cancer remain under researched. The objectives were to systematically review the literature and identify research and clinical implications. Thirteen studies were critically appraised using the Pediatric Quality Appraisal Questionnaire (PQAQ) [Ungar and Santos. Value Health 2003; 6:584-594]. Existing research indicates that families incur significant variable costs throughout cancer treatment. However, problems with the published studies related to various PQAQ domains (e.g., time horizon, sensitivity analysis) rendered the magnitude of families' childhood cancer costs somewhat uncertain. Strategies for enhancing the quality of childhood cancer cost of illness research are presented. Implications for clinical practice are discussed.

Recent cognitive neuroscientific evidence indicates that movement and gesture are necessary for optimal cognitive and communicative development. Unrestricted movement may enhance learning because it allows children to freely engage with external properties of their environments. In-depth understanding of how children interact with/in classrooms and other everyday environments is lacking. This knowledge gap is particularly problematic for children with physical disabilities because gross and/or fine motor impairments restrict their movement, and exclusionary attitudes, safety concerns and environmental barriers further curtail their ability to explore their surroundings. Hence, all children’s physical health, social abilities and cognitive development may be jeopardised when built environments and educational strategies inhibit rather than enhance their movement capabilities. In this paper, key studies from neuroscience, pediatric rehabilitation, ecological psychology, architecture and education are examined to identify how children with varying physical abilities respond to and interact with the physical features of everyday environments, and how contextual factors influence their mobility and ability to learn. Drawing on these research findings, a novel conceptual and methodological framework is proposed for observing and analysing children’s ‘body-environment’ interactions in an integrated kindergarten classroom. The proposed framework accentuates the indisputable link between movement and optimal learning outcomes, and addresses the need for descriptive, naturalistic research about children and their environments. Ultimately, this interdisciplinary approach may optimise: (1) the design of learning environments that support children’s fundamental right to access and move freely within them; (2) the development of their physical, social, cognitive capacities; and (3) environmental, educational and rehabilitation interventions that encourage children to explore, navigate and shape their environments.

The study reported here adopts an interdisciplinary focus to elicit children's views about hospital environments. Based at the Hospital for Sick Children (SickKids), Toronto, the research explores the ways in which designers and patients understand and use the eight-storey lobby, The Atrium, a monumental addition constructed in 1993. It is a public place that never closes; hundreds of children pass through the namesake atrium every day. Combining methodological approaches from architectural history and health sociology, the intentions and uses of central features of the hospital atrium are examined. Data were collected from observations, focused interviews, and textual and visual documents. We locate the contemporary atrium in a historical context of building typologies rarely connected to hospital design, such as shopping malls, hotels and airports. We link the design of these multi-storey, glass-roofed spaces to other urban experiences especially consumption as normalizing forces in the everyday lives of Canadian children. Seeking to uncover children's self-identified, self-articulated place within contemporary pediatric hospitals, we assess how the atrium--by providing important, but difficult-to-measure functions such as comfort, socialization, interface, wayfinding, contact with nature and diurnal rhythms, and respite from adjacent medicalized spaces--contributes to the well-being of young patients. We used theoretical underpinnings from architecture and humanistic geography, and participatory methods advocated by child researchers and theorists. Our findings begin to address the significant gap in understanding about the relationship between the perceptions of children and the settings where their healthcare occurs. The study also underlines children's potential to serve as agents of architectural knowledge, reporting on and recording their observations of hospital architecture with remarkable sophistication.

This case study documents the process of designing a custom-tailored bedside computer access solution for a 20-year old individual with quadriplegia and reports the effects of computer access on her participation in life activities.We adopted a person-focused approach to match the individual to an access solution. Two months after the access solution's introduction, we measured its impact using a 2-dimensional Fitt's Law test and questionnaire from the ISO 9241-9 standards document, typing tests, a usage log and a semi-structured interview. The Canadian Occupational Performance Measure was also administered pre- and post- access, focusing on the client's perceived ability to use the computer.After 2 months, the individual was spending an average of 8.4 h per day on the computer, engaging in electronic communication, recreational, and educational activities. She learned single-switch typing with a throughput of 1.03 bits/s and targeting accuracy of 87.5%. The questionnaire revealed that the client was thoroughly satisfied with the interface. These results were interpreted as positive gains in the International Classification of Functioning, Disability and Health domains of communication and social interaction.By addressing individual goals, abilities and relevant environmental factors, a bedside computer access solution can be developed for individuals in long-term care. The introduction of a computer access solution augmented the participant's communication, leisure and educational activities, as well as perceived independence.

To participate in most educational and social experiences of childhood, many disabled children require both technological and human supports, in accessible and suitable environments. In Canada, inclusive education policies and practices increase the likelihood that interior classroom spaces are appropriately accommodating, yet pay little attention to exterior school spaces such as playgrounds. As a result many playground attributes contribute significantly to the socio-spatial exclusion and marginalization of physically disabled children. In this study accessibility audits of five publicly funded school playgrounds in Toronto, Canada were conducted. The organization of space, equipment design and landscape characteristics revealed that the rights to full participation are constrained in this important space of childhood.

Potentially significant numbers of infants hospitalized in Neonatal Intensive Care Units (NICUs) and Pediatric Intensive Care Units (PICUs) experience chronic pain. However, the phenomenon of chronic pain in infancy has neither been defined nor described adequately by researchers. To stimulate and focus further work in the area, the purpose of this study was to explore expert opinions on definitional and assessment parameters of infant chronic pain. Forty-five health care professionals, with a median of 17 years of clinical experience, were recruited from 4 tertiary-level, university-affiliated institutions. Individual (n = 24) and group (n = 21) interviews were conducted by trained interviewers. Qualitative data were analyzed using a standard descriptive method. Health care professionals were able to offer preliminary definitions of chronic pain in infants. The most contentious definitional issue was whether iatrogenically prolonged pain (pain induced and maintained by medical procedures) should be considered chronic pain. Possible indicators for chronic pain included inability to settle, social withdrawal, constant grimacing, tense body, hypo- or hyper-reactions to acute pain, and dysregulated sleep or feeding patterns. These indicators differed significantly from those traditionally used to measure acute pain. Perspective Despite infants' established capacity to physiologically experience chronic pain, no current definitions exist that are wholly applicable to infancy. By exploring the definitional parameters and potential assessment cues of infant chronic pain, this study provides a foundation for improving pain measurement and management in infants with chronic pain.

Background: Nearly all hospitalized laboring women spend most of the time in bed. We made simple but radical modications to a hospital labor room, which included the removal of the standard hospital bed and the addition of equipment to promote relaxation, mobility, and calm. We designed a pilot study, the objectives of which were to test the feasibility of a randomized trial and the acceptability of the modied labor room to women and their care providers. Methods: Women were assessed and invited to participate just before their admission to the labor and delivery suite. Sixty-two women at two Toronto teaching hospitals were randomly allocated to either the standard labor room or the "ambient room." Data about labor and birth events were abstracted from the medical records. Participants and their nurses and physicians completed questionnaires to elicit their views of their experiences with the labor rooms. Results: Women's and practitioners' evaluations of the ambient room were generally very positive. Nineteen women (65.5%) in the ambient group, compared with 4 (13.3%) in the standard group, reported spending 50 percent or less of their hospital labor in the standard labor bed. Twelve women allocated to the ambient room had articial oxytocin infusions, compared with 21 allocated to the standard room (X 2 = 4 .73 , p = 0 .03 ). Conclusion: We conclude that the ambient labor room should be evaluated in an adequately powered randomized controlled trial. (BIRTH 36:2 June 2009)

Approximately 10% of infants admitted to a Neonatal Intensive Care Unit (NICU) are at risk for Neurological Impairment (NI). While we have limited knowledge on the influence of NI risk on pain responses, we have no knowledge of how these responses change over time.To compare physiological and behavioural pain responses of infants at three levels of NI risk during the NICU neonatal period (Session 1) and at 6 months of age (Session 2).Prospective observational design with 149 preterm and term infants at high (Cohort A, n=54), moderate (Cohort B, n=45) and mild (Cohort C, n=50) risks for NI from 3 Canadian tertiary level NICUs. Infants were observed in the NICU during 3 standardized phases of a heel lance: baseline, stick and return-to-baseline. At 6 months, infants were observed during the same three phases during an intramuscular immunization injection. Physiological (heart rate, oxygen saturation) and behavioural (9 facial actions, cry) responses were continuously recorded.A significant interaction of Phase by Session was found with less total facial activity observed during Session 2 (all p values0.04). A significant interaction for Session by Cohort was found, showing that infants in Cohort A had significantly more change from baseline-to-stick phase for brow bulge, eye squeeze, nasolabial furrow and open lips between sessions with less facial actions demonstrated at Session 2 (all p0.02). There were significantly lower mean and minimum heart rate (all p0.02) and higher minimum and maximum oxygen saturation (p0.04) at Session 2. Significantly higher mean and minimum fundamental cry frequencies (pitch) in Cohort B (p0.04) were found in Session 1. Cohort A had significantly longer cry durations, but no significant differences in cry dysphonation.Behavioural and physiological infant pain responses were generally diminished at 6 months of age compared to those in the neonatal period with some differences between NI risk groups in cry responses. Future exploration into the explanation for these differences between sessions and cohorts is warranted.

Participant observation strategies may be particularly effective for research involving children and their families in health care settings. These techniques, commonly used in ethnography and grounded theory, can elicit data and foster insights more readily than other research approaches, such as structured interviews or quantitative methods. This article outlines recommendations for the ethical conduct of participant observation in pediatric health care settings. This involves a brief overview of the significant contributions that participant observation can bring to our understanding of children and families in health care settings; an examination of the elements of participant observation that are necessary conditions for its effective conduct; an outline of contemporary ethical norms in Canada, the United Kingdom and the United States for research in pediatric health care settings; and a discussion of how participant observation research should be operationalized in order to comply with these norms.

The Canadian context in which home-based healthcare services are delivered is characterised by limited resources and escalating healthcare costs. As a result, a financing shift has occurred, whereby care recipients receive a mixture of publicly and privately financed home-based services. Although ensuring that care recipients receive efficient and equitable care is crucial, a limited understanding of the economic outcomes and determinants of privately financed services exists. The purposes of this study were (i) to determine costs incurred by families and the healthcare system; (ii) to assess the determinants of privately financed home-based care; and (iii) to identify whether public and private expenditures are complements or substitutes. Two hundred and fifty-eight short-term clients ( 90 days of utilisation) were recruited from six regions across the province of Ontario, Canada, from November 2003 to August 2004. Participants were interviewed by telephone once a week for 4 weeks and asked to provide information about time and monetary costs of care, activities of daily living (ADL), and chronic conditions. The mean total cost of care for a 4-week period was $7670.67 (in 2004 Canadian dollars), with the overwhelming majority of these costs (75%) associated with private expenditures. Higher age, ADL impairment, being female, and a having four or more chronic conditions predicted higher private expenditures. While private and public expenditures were complementary, private expenditures were somewhat inelastic to changes in public expenditures. A 10% increase in public expenditures was associated with a 6% increase in private expenditures. A greater appreciation of the financing of home-based care is necessary for practitioners, health managers and policy decision-makers to ensure that critical issues such as inequalities in access to care and financial burden on care recipients and families are addressed.

Men with Duchenne muscular dystrophy (DMD) are part of a growing population of community-dwelling persons dependent on life support technologies. This Canadian study drew from Bourdieu's critical social theory to explore the identities and social positionings of 10 men with DMD in relation to dominant discourses of disability, masculinity and technology. Semi-structured interviews with participants and participant-generated video diaries revealed that these men were materially, socially and symbolically marginalized through inaccessible built environments, social arrangements that limited their engagement in community life, and the multiple ways that their bodies were negatively marked across social space. Furthermore their marginalization had been embodied through processes of socialization and internalization of subordinate social positionings. While the men created positive personal spaces for recognition and success, their achievements were severely circumscribed by significant social inequities.

Background: There is a plethora of infant pain measures; however, none of them have been validated for extremely low for gestational age (ELGA) infants (Objectives: To compare physiological (heart rate, oxygen saturation) and behavioral (9 facial activities, cry) pain indicators of ELGA infants with infants of varying more mature gestational ages (GAs). Methods: The aim was to determine the effects of GA on pain response. GA was categorized into four mutually exclusive strata: 36 weeks. Physiological data during four phases of a routine heel lance were collected by placing disposable ECG electrodes and pulse oximetry probes on the infant’s chest. Behavioral data were collected by videotaping facial activities, and cry data were collected by audio recording. Results: Four facial activities (brow bulge, eye squeeze, nasolabial furrow, vertical mouth stretch) in response to acute pain were present in ELGA infants. Facial activities increased following painful procedures and the magnitude of responses was proportional to GA with the youngest infants (Discussion: ELGA infants have similar pain responses to older infants, but the responses are dampened. Other factors such as severity of illness, frequency of painful procedures or medication use should be examined, as they may influence the pain responses in ELGA infants.

Medical technologies and assistive devices such as ventilators and power wheelchairs are designed to sustain life and/or improve functionality but they can also contribute to stigmatization and social exclusion. In this paper, drawing from a study of ten men with Duchenne muscular dystrophy, we explore the complex social processes that mediate the lives of persons who are dependent on multiple medical and assistive technologies. In doing so we consider the embodied and emplaced nature of disability and how life is lived through bodies coupled with technologies and experienced as ‘techno-body-subjects in situ’. Normative implications for theory and research, including bioethics research, are discussed.

Many patients experience aspects of treatment and care as dehumanizing because the body is considered separate from the self and its life context. An attempt to transcend viewing persons in dualistic terms is posed by phenomenologists who focus not on "the body" as such but on what it means to be "embodied." In this paper, we review the relevance of the phenomenology of the body for health care and report the results of comparing Sally Gadow's phenomenological insights about body-self unity with a qualitative analysis of patients' accounts of satisfaction with the outcome of hand surgery. We illustrate the ways in which our findings were and were not congruent with Gadow's conceptualization of embodiment and highlight aspects that are ambiguous. We conclude that the body-self dialectical relationship should be recast as a body-self-society trialectic and discuss the implications of this new conceptualization for clinical practices.

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.

In most industrialised countries, the care needs of those who are sick, disabled and frail are increasingly met in peoples' homes. One of the implications of this shift in the site of care is that individuals with long-term care needs and their family care providers experience social and spatial isolation. Many are housebound and most face considerable challenges in getting out of the house. This paper illuminates these challenges as they are experienced by mothers of children with long-term care needs, and the resulting isolation and disconnection that they experience. Eleven semistructured interviews were conducted in two regions of Ontario, Canada. Grounded theory informed the analysis of the mothers' accounts of their experiences of getting out of the house. The present findings are derived from a larger investigation of the meanings and experiences of the home as a place of caring for families with children who have long-term care needs. Secondary analysis of the data found that three main challenges restricted the mothers' abilities to leave their houses. Mothers experienced difficulties getting out of the house when they attempted to leave with the child, and when the child was left with an alternative care provider. Physical challenges were associated with the work and planning required in moving the child's equipment and supplies, meticulous planning of the outing within the daily schedule, and navigating barriers in the built and natural environments. Social challenges reflected the lack of people within the mothers' social network of family and friends who have the knowledge and expertise to care for the child. Service challenges resulted from the gaps between the policies and practices of paid respite, and the conditions that must be satisfied in order for mothers to be able and/or willing to leave the house. The authors also examined the reasons why some of the mothers worked from home, and the strategies that they used to get out of the house for employment. In this paper, the authors discuss each challenge, and how it contributes to the mothers' social and spatial isolation. The mothers' experiences elucidate the differences between living in a community and being part of a community. The consequences of the isolation on mothers' daily lives are not recognised in home and community care policy. The suggestions that are put forward concerning paid respite have relevance for home and community care policy and practice.

A telephone survey of a random sample of 811 long-term home care clients from three geographically distinct regions in Ontario was conducted to illuminate the living and working conditions in households receiving long-term care services. The median age of clients was 77 years and 75 percent were female. The majority had not completed high school. Almost half were widowed, had income levels of $20,000 (Canadian) or less, and lived alone. Approximately one-third needed help with most basic activities of daily living. The vast majority could not bathe or dress themselves. More than three-quarters needed help with preparing meals, housekeeping, and shopping. Few clients could perform yardwork and home repairs. Many clients' homes required major and minor repairs, were not suitable in size, were not affordable, and lacked important household amenities. More than 30 percent required modifications to enable clients to live and be cared for comfortably and safely, and half the clients had not completed these because of exorbitant costs. Overall, many clients were living in homes less than optimal for domestic life and long-term care provision. These results highlight significant gaps in care provision and a need to link housing to health and social service policies.

Tele-HomeCare (THC) delivers health care at home using telephone technologies. A THC service was developed as an adjunct to existing hospital and community care systems. It connected healthcare providers to children and families at home, during the initial transition from hospital to home, using video-conferencing phones and remote vital signs monitors. The goal was to support the transition from hospital to home, for children with subacute healthcare needs. This paper reports the qualitative evaluation of THC and describes the experiences of families supported by THC. A total of 16 mothers, four fathers and two adolescents from 16 families participated in a series of interviews conducted before, during and after THC. The interviews focused on the impact of THC on the children, on the families, and on their overall healthcare experience. Analysis of their accounts identified three subthemes: the stable child, a sense of security, and the healthcare-proficient parent. These subthemes were consistent across all time points and participants. Together they contributed to the overall effect of THC: the timely reunification of the family at home. THC was consistently reported to be an important resource that supported children and families during the transition from hospital to home. The benefits to children and families observed in this study may have also been a consequence of returning to their home environment, since THC allowed these children to be discharged home at a much earlier period. However, our findings are consistent with previous reports of the benefits of THC. Thus, THC is a successful method of healthcare service delivery that enables a safe return home with professional support provided remotely.

Journal of Advanced Nursing 53(2), 233–243Economics of home vs. hospital breastfeeding support for newbornsAim. This paper presents the findings of research comparing the incremental costsassociated with the provision of home-based vs. hospital-based support for breast-feeding by nurse lactation consultants for term and near-term neonates during thefirst week of life.Background. A consequence of both consumer demands and increasing healthresource constraints is that alternative care delivery models for safe, efficacious andcost-effective breastfeeding programmes have steadily evolved. To date, the eco-nomic impact of the setting (home or hospital) where lactation support is deliveredhas received little research attention.Methods. Mother–infant dyads were stratified by gestational age as term(>37 weeks gestational age; n ¼ 101) or near term (35–37 weeks gestational age;n ¼ 37) and randomized to standard hospital care and postpartum follow-up(standard care), or to standard hospital care plus home support from certified nurselactation consultants (experimental). Data collection occurred at study entry, hos-pital discharge and at a seventh day postpartum follow-up session. Costs to thefamily (out-of-pocket and time costs) and to the healthcare system (during hospi-talization and after hospital discharge) were measured. Total societal costs weredefined as the sum of both family and healthcare system costs.Results. Compared with standard hospital-based care, home support by nurselactation consultants showed no statistically significant differences in either timecosts to the family or total societal costs. Term infants who received home supporthad statistically significantly greater postdischarge system costs (P < 0AE0001), witha trend towards lower out-of-pocket expenses to their families (P ¼ 0AE12). Therewere no statistically significant differences between the two groups in overallcombined family and healthcare system costs.Conclusions. These results suggest that the cost of home lactation support pro-grammes were comparable with the costs of hospital-based standard care. Breast-feeding support at home by lactation consultants should be considered as an optionas it was no more costly than support from lactation consultants in the hospitalsetting. The findings for near-term infants need to be interpreted with caution, giventhe small sample size.Keywords: breastfeeding, economics, home, hospital, midwifery, newborns

The physical, symbolic and experiential aspects of receiving long-term care are examined in this paper using Bourdieu's concepts of habitus and field. We draw on data from an ethnographic study of home care in 16 homes in urban, rural and remote locations in Ontario, Canada. Across all cases, data about domestic and caregiving routines were gathered through observation, interviews with clients and/or the primary family caregiver, interviews with service providers and videotaped tours of the home. Based on the analysis of these data, we argue that a transposition of logics and practices occurred when the domestic and health care fields were superimposed within the spaces of the home. Although all of the care recipients and their family caregivers indicated a strong preference for home care over institutional care, their experiences and practices within their homes were disrupted and reconfigured by the insertion of logics emanating from the healthcare field. These changes were manifested in three main themes: the politics of aesthetics; the maintenance of order and cleanliness; and transcending the limitations of the home. In each of these dimensions, it became apparent that care recipients engaged in improvisatory social practices that reflected their ambiguous and changing habitus or social location. The material spaces of their homes signified, or prompted, altered or changing social placement.

In the last three decades, mothers of children who have chronic illnesses or disabilities have been studied extensively. With some notable exceptions, most research has overlooked the socio-political context of disability and has interpreted maternal behaviours and feelings in negative or psychopathological terms. In this paper we report the results of using Pierre Bourdieu's central concepts to reanalyse three independent qualitative studies focused on mothers’ accounts of raising children with severe disabling conditions. We illustrate the logic of mothers’ practices and conclude that they represent strategic manipulations of accessible bodily, cultural and symbolic capital consistent with the ‘rules of the game’ across multiple fields. Mothers struggled to establish and maintain the personhood and value of their children, and to obtain resources within a broader context of body normativeness, exclusion and inequity. This Bourdieusian rendering of the logic of maternal practices has important implications for research and paediatric practices.

Objectives: Theories of patient satisfaction with treatment outcome have not been developed and tested in healthcare settings. The objectives of this study were to test a new theory linking patient satisfaction and embodiment (body–self unity) and examine it in relation to other competing theories. Design: We conducted a prospective cohort study. Setting: This study was conducted at a tertiary care hospital. Patients: We studied 122 individuals undergoing elective hand surgery. Methods: Satisfaction with treatment outcome approximately 4 months after surgery was examined against the following factors (representing 7 theories of satisfaction): 1) overall clinical outcome, 2) patients’ a priori self-selected important clinical outcomes, 3) foresight expectations, 4) hindsight expectations, 5) psychologic state, 6) psychologic state in those with poor outcomes, and 7) embodiment. Analysis: Seven hypotheses were tested first using univariate analyses and then multivariable regression analysis. Results: Satisfaction with treatment outcome was significantly associated with embodiment. Three confounders—the extent to which surgery successfully addressed patients’ most important reason for surgery, hindsight expectations, and workers’ compensation—were also significant. The final model explained 84% of the variance in a multidimensional measure of satisfaction with treatment outcome. Conclusion: This research suggests that satisfaction with treatment outcome could be facilitated by developing strategies to improve body–self unity, and eliciting and addressing the patient’s most important reason for undergoing treatment.