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1.
Front Rehabil Sci ; 5: 1415609, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38872999

RESUMO

Play spaces are important components of paediatric healthcare environments. They provide children with critical opportunities to experience the social, emotional, and developmental benefits of play while in healthcare settings for appointments or hospitalizations. These spaces can help to mitigate stress, provide a sense of normalcy in unfamiliar environments, and facilitate social engagement for children and their families. Given the benefits of play spaces in paediatric healthcare settings, it is important to understand how these spaces can be designed to enhance children's inclusion and quality of care. The aim of this scoping review was to explore the current understanding of paediatric play space design. Using search terms related to children, health care, and play space, six interdisciplinary databases were searched over a 30-year period. The search found 2,533 records from which eighteen were included for review. Findings suggest that although it is well-documented that play spaces offer valuable social and emotional benefits, little is known about the specific design features that can and should be incorporated to enhance play opportunities and ensure that they benefit all children and families. Further, the literature mostly considers play spaces in the context of designated play or recreational rooms. Scholars are encouraged to consider how play opportunities can be incorporated into the designs of paediatric healthcare environments beyond the boundaries of these rooms. Future studies should also consider the diversity of play space users, including children of varying ages and abilities, to create more accessible and inclusive paediatric play spaces for children and their families. Advancing knowledge on play space design can help to optimize the quality of these important spaces and to ensure their designs meaningfully enhance children's play experiences and quality of care.

2.
Dev Neurorehabil ; 27(1-2): 1-7, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38630613

RESUMO

This study explored the acceptability of Children and Teens in Charge of their Health (CATCH), a program for children with spina bifida or cerebral palsy to enhance their physical activity and diet. Qualitative interviews were conducted with children (n = 6) and their parents (n = 6) who participated in CATCH. Analysis used an environmental systems framework. Microsystem factors impacting acceptability of the program were: Children's motivations for change, their age, and their physical health. Mesosystem factors were: Use of virtual coaching and the relationship between coach and child. Macrosystem factors (e.g. Covid-19), did not impact acceptability, but affected some goal attainment strategies. CATCH was broadly acceptable to children and parents and shows promise as a health promotion program tailored to children with disabilities. An environmental systems framework can potentially help other health promotion programs enhance their acceptability and success.


Assuntos
Paralisia Cerebral , Promoção da Saúde , Disrafismo Espinal , Humanos , Promoção da Saúde/métodos , Adolescente , Masculino , Disrafismo Espinal/reabilitação , Feminino , Criança , Paralisia Cerebral/reabilitação , Exercício Físico , Crianças com Deficiência/reabilitação , COVID-19/prevenção & controle , Pais/psicologia , Aceitação pelo Paciente de Cuidados de Saúde , Pesquisa Qualitativa
3.
HERD ; 17(2): 309-325, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38130020

RESUMO

BACKGROUND: Some children with disabilities (CWD) frequently visit pediatric healthcare settings for appointments. Their age, disability, and regular visits mean that they have unique experiences in healthcare settings. While previous research has explored the clinical experiences of CWD, little is known about their experiences of pediatric healthcare built environments, even though these environments may play an important role in shaping their perceptions of care. Given the significant time that some CWD and chronic illnesses (e.g., cancer) spend in healthcare environments and the impact that these settings can have on their experiences, the knowledge gap concerning how they view, and experience healthcare built environments demands attention. OBJECTIVE: To explore how CWD and their families experience pediatric healthcare built environments. METHODS: A scoping review was conducted by searching five health science and interdisciplinary literature databases using terms related to children, disability, healthcare, and built environment. The search identified 5,397 records that were screened independently by three reviewers. RESULTS: Nineteen studies met inclusion criteria and were considered in the final review. Findings indicate that CWD and their families value healthcare built environment features that support social engagement, patient privacy, and parental presence. Further, the age of a child was highlighted as an important factor that influences the built environment preferences of CWD. CONCLUSIONS: CWD and their families prefer certain healthcare built environment features to optimize their experiences in these settings. Healthcare designers can leverage these findings to advance more inclusive pediatric healthcare spaces to improve care and the quality of life for CWD and their families.


Assuntos
Ambiente Construído , Crianças com Deficiência , Humanos , Crianças com Deficiência/psicologia , Criança , Família/psicologia , Pais/psicologia , Privacidade , Preferência do Paciente
4.
Disabil Rehabil ; : 1-9, 2023 Sep 04.
Artigo em Inglês | MEDLINE | ID: mdl-37665663

RESUMO

PURPOSE: 1) To explore how children with spina bifida (SB) and their parents understand bodyweight, health and weight management; and 2) To identify what services and supports children with SB and their families feel are most appropriate to help them manage their health and weight. METHODS: The study used interpretive description within a qualitative design. Participants were children with SB (aged 10-18) attending two Canadian SB clinics and their parents. Data were collected through individual interviews and analyzed using inductive thematic analysis. RESULTS: Five children and five parents participated in the study. Children and parents had a weight-centric approach to health, which was related to the child's mobility. Weight was considered to be under individual control and mostly through diet. Trusting relationships between healthcare providers, children and families were important to discuss weight in a non-judgemental manner. Children should be involved in setting meaningful and achievable weight management goals. CONCLUSION: Greater knowledge of how children with SB and their families understand weight and health offers opportunities for non-judgemental discussions about their needs and wishes. Helping families to place more value on health over weight may reduce feelings of stigma, while allowing children to develop some autonomy over health-related decisions.


Children with spina bifida and their parents do not recognise the complexity of factors contributing to weight regulation.Weight regulation was often seen as the child's responsibility, which could lead to feelings of guilt and shame through internalised weight stigmaHealthcare professionals working with children with spina bifida should explore their perceptions, beliefs, and behaviours related to weight, health and mobility to ensure they are not causing themselves physical and/or psychological harm.

5.
Palliat Support Care ; 21(5): 925-934, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-37357946

RESUMO

BACKGROUND: Palliative care necessitates questions about the preferred place for delivering care and location of death. Place is integral to palliative care, as it can impact proximity to family, available resources/support, and patient comfort. Despite the importance of place, there is remarkably little literature exploring its role in pediatric palliative care (PPC). OBJECTIVES: To understand the importance and meaning of place in PPC. METHODS: We conducted a scoping review to understand the importance of place in PPC. Five databases were searched using keywords related to "pediatric," "palliative," and "place." Two reviewers screened results, extracted data, and analyzed emergent themes pertaining to place. RESULTS: From 3076 search results, we identified and reviewed 25 articles. The literature highlights hospital, home, and hospice as 3 distinct PPC places. Children and their families have place preferences for PPC and place of death, and a growing number prefer death to occur at home. Results also indicate numerous factors influence place preferences (e.g., comfort, grief, cultural/spiritual practices, and socioeconomic status). SIGNIFICANCE OF RESULTS: Place influences families' PPC decisions and experiences and thus warrants further study. Greater understanding of the importance and roles of place in PPC could enhance PPC policy and practice, as well as PPC environments.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Criança , Humanos , Cuidados Paliativos/métodos
6.
Womens Health (Lond) ; 19: 17455057231163761, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36999318

RESUMO

BACKGROUND: Autism is not always considered for girls and women until later along their clinical diagnostic pathways. Misdiagnosis or late diagnosis can pose significant disadvantages with respect to accessing timely health and autism-related services and supports. Understanding what contributes to roadblocks and detours along clinical pathways to an autism diagnosis can shed light on missed opportunities for earlier recognition. OBJECTIVE: Our objective was to examine what contributed to roadblocks, detours, and missed opportunities for earlier recognition and clinical diagnosis of autism for girls and women. DESIGN: We conducted a qualitative secondary analysis using data from a Canadian primary study that examined the health and healthcare experiences of autistic girls and women through interviews and focus groups. METHODS: Transcript data of 22 girls and women clinically diagnosed with autism and 15 parents were analysed, drawing on reflexive thematic analysis procedures. Techniques included coding data both inductively based on descriptions of roadblocks and detours and deductively based on conceptualizations of sex and gender. Patterns of ideas were categorized into themes and the 'story' of each theme was refined through writing and discussing analytic memos, reflecting on sex and gender assumptions, and creating a visual map of clinical pathways. RESULTS: Contributing factors to roadblocks, detours, and missed opportunities for earlier recognition and diagnosis were categorized as follows: (1) age of pre-diagnosis 'red flags' and 'signals'; (2) 'non-autism' mental health diagnoses first; (3) narrow understandings of autism based on male stereotypes; and (4) unavailable and unaffordable diagnostic services. CONCLUSION: Professionals providing developmental, mental health, educational, and/or employment supports can be more attuned to nuanced autism presentations. Research in collaboration with autistic girls and women and their childhood caregivers can help to identify examples of nuanced autistic features and how context plays a role in how these are experienced and navigated.


Assuntos
Transtorno Autístico , Humanos , Masculino , Feminino , Criança , Transtorno Autístico/diagnóstico , Canadá , Pais , Atenção à Saúde , Saúde Mental
7.
Child Care Health Dev ; 49(2): 366-372, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-36027594

RESUMO

INTRODUCTION: Due to the increased risk of obesity for boys with Duchenne muscular dystrophy (DMD), recent guidelines recommend that dietary intake is carefully managed. Parents play an important role in the development of their child's eating behaviours and patterns. However, despite what is known about the increased risk of obesity for children with DMD, little is known about parental feeding behaviours in this population. The objective of this study was to qualitatively explore the experiences of parents of children with DMD around their child's weight management and understand what influences their feeding behaviours. METHODS: This paper reports a secondary data analysis. Semi-structured, individual interviews were conducted and analysed using qualitative description. RESULTS: Thirteen parents were interviewed for the study. Three themes were developed: (1) parent responses to healthcare provider interactions, (2) mixed emotions contributing to feeding approach and (3) variable parenting feeding styles. Within the third theme, two subthemes arose including (1) control and preoccupation and (2) striking a balance. CONCLUSION: Given the potential impact of higher weights on the progression of DMD, it is important that healthcare providers explore feeding behaviours with families. However, it is essential that healthcare providers consider the impact of these conversations on parents, as well as the broader issues that may place additional pressure on the lives of families.


Assuntos
Distrofia Muscular de Duchenne , Masculino , Criança , Humanos , Distrofia Muscular de Duchenne/psicologia , Pais/psicologia , Poder Familiar , Obesidade , Comportamento Alimentar
8.
Disabil Rehabil ; 44(26): 8234-8242, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-34889714

RESUMO

PURPOSE: The quality and length of life for boys with Duchenne muscular dystrophy (DMD) has improved due to medical advancements, but obesity has emerged as and may pose a risk to their physical health. Clinical guidelines recommend attention to weight management, but healthcare professionals (HCPs) find implementing them in clinical care challenging. Little information is available about the perspectives of children with DMD and their families around weight management. This study explored the key priorities of children with DMD, their parents, and HCPs who treat them, around weight management. METHODS: Qualitative, individual, semi-structured interviews were conducted and analyzed using a qualitative descriptive approach. RESULTS: Participants included parents of children with DMD (n = 13), children with DMD (n = 10), and HCPs (n = 14). Theme one: "Competing priorities between healthcare providers, parents, and boys" contained two sub-themes: (i) Body mechanics and function; and (ii) Psychosocial well-being. Theme two: "The realities of living with Duchenne's Muscular Dystrophy," with subthemes: (i) Striving for normality; (ii) The trajectory of DMD; (iii) The labour associated with DMD. CONCLUSION: HCPs, parents, and boys have diverging worldviews around weight management, highlighting the importance of integrating the priorities of families into care, even when not aligned with guideline recommendations.IMPLICATIONS FOR REHABILITATIONHCPs must understand the competing priorities in the lives of children with DMD and their families when discussing weight, weight management, and lifestyle changes.Quality of life and living a "normal" life are prioritized by children and families over the surveillance and time demands of lifestyle routines recommended by clinicians for weight management.Weight management recommendations should be based upon the individual needs and priorities of the family.


Assuntos
Distrofia Muscular de Duchenne , Qualidade de Vida , Masculino , Humanos , Criança , Qualidade de Vida/psicologia , Distrofia Muscular de Duchenne/terapia , Distrofia Muscular de Duchenne/psicologia , Pessoal de Saúde , Pais/psicologia , Atenção à Saúde
9.
Disabil Rehabil ; 42(2): 274-282, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-30298750

RESUMO

Introduction: Overweight and obesity (OW/OB) rates are increasing among Canadian children and youth, with rates currently affecting one-third of 5-17 year olds. OW/OB is associated with numerous physical and psychosocial consequences, which are compounded when a child has a pre-existing disability. This is concerning considering children with disabilities experience OW/OB at two to three times the rate of their typically developing peers. While the number of weight management programs have been increasing, they are generally designed to meet the needs of typically developing children and often exclude children with disabilities. This review identifies existing weight management programs for youth with disabilities, and examines their characteristics and outcomes.Methods: A scoping review was conducted using rapid review principles. Three health and social science databases were searched using terms related to "disabilities", "obesity", and "weight management", limited to 2007-2017. Articles meeting the inclusion criteria were summarized and analyzed thematically.Results: Five articles met inclusion criteria, and described four separate weight management programs. All included children and youth with intellectual disabilities, with one including children with physical disabilities. Programs had three traits in common: (1) utilizing inter/multidisciplinary teams; (2) using technology to deliver the program; and (3) engaging the family during the entire program. All articles reported that the programs reduced body mass index.Conclusion: The scarcity of programs designed to meet the unique needs of youth with disabilities is alarming. Although a robust evidence base is lacking, current research provides some directions into components that should be considered when designing future interventions.Implications for Rehabilitation   1.  Clinicians should be aware of the high prevalence of overweight and obesity and the resultant consequences in children with disabilities.   2.  The use of inter/multidisciplinary teams, technology, and family engagement all appear to be promising approaches to creating successful weight management programs:     a.  Weight-management programs should utilize inter/multidisciplinary teams to consider physical, social and psychological aspects of weight and health, to allow treatment plans to encompass a wider range of suggestions and recommendations.     b.  Health care providers should consider using technology as a platform to deliver weight-management programs and services and/or to directly track progress.   c.  Families are powerful agents of change, and should be consulted and involved in the delivery of weight-management programs.


Assuntos
Peso Corporal , Pessoas com Deficiência , Populações Vulneráveis , Adolescente , Canadá , Criança , Humanos , Sobrepeso/prevenção & controle , Obesidade Infantil/prevenção & controle
10.
Dev Neurorehabil ; 23(1): 31-38, 2020 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-31684786

RESUMO

Background: Childhood overweight and obesity, in addition to weight stigma, can result in numerous physical and psychosocial conditions. Children with Autism Spectrum Disorder (ASD) are at a higher risk of developing overweight/obesity than their typically developing peers, yet we know little about what matters to them with regards to weight and their bodies.Methods: Eight semi-structured interviews were conducted with youth with ASD. Interviews were transcribed and analyzed using a phenomenological approach within an interpretive paradigm.Results: Participants mostly showed little concern about their weight. Participants highly valued moving their bodies and reported feeling good about their bodies.Discussion: Findings suggest that children with ASD may be more engaged in healthcare discussions focusing on growth and health rather than size and weight. This approach can also reduce stigmatizing discussions.


Assuntos
Atitude , Transtorno do Espectro Autista/psicologia , Obesidade Infantil/psicologia , Adolescente , Criança , Exercício Físico , Feminino , Humanos , Masculino
11.
Dev Neurorehabil ; 22(5): 359-364, 2019 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-30307382

RESUMO

Globally, overweight and obesity (OW/OB) levels are high among children, with rates surpassing the adult population. With such high pediatric OW/OB rates, it is imperative that risk factors are identified and explored. Thus, Davison and Birch developed an adapted framework, based on Bronfenbrenner's Ecological Systems Theory, which identifies and categorizes the factors in a child's life that put them at risk for OW/OB. While a socioecological perspective has been a useful tool for examining risk factors in typically developing pediatric populations, this holistic approach has not yet been applied to populations of children with disabilities, who are at an even higher risk of OW/OB than their typically developing peers. This commentary, therefore, explores Bronfenbrenner's Ecological Framework as applied to OW/OB by Davison and Birch, and critically examines its application to children with disabilities.


Assuntos
Crianças com Deficiência/estatística & dados numéricos , Ecossistema , Obesidade Infantil/epidemiologia , Adulto , Criança , Feminino , Humanos , Masculino , Prevalência , Fatores de Risco
12.
J Am Vet Med Assoc ; 252(11): 1393-1402, 2018 Jun 01.
Artigo em Inglês | MEDLINE | ID: mdl-29772965

RESUMO

OBJECTIVE To evaluate potential associations between surgical approach and complication rate, progression-free survival time, and disease-specific survival time in cats with mammary adenocarcinoma. DESIGN Retrospective case series. ANIMALS 107 client-owned cats. PROCEDURES Medical records of cats that underwent surgical excision of mammary adenocarcinoma by means of a unilateral or bilateral (staged or single-session) mastectomy at 9 hospitals between 1991 and 2014 were reviewed. Relevant clinicopathologic data and details of surgical and adjuvant treatments were recorded. Outcome data were obtained, including postoperative complications, progression-free survival time, and disease-specific survival time. RESULTS Complications occurred in 12 of 61 (19.7%) cats treated with unilateral mastectomy, 5 of 14 (35.7%) cats treated with staged bilateral mastectomy, and 13 of 32 (40.6%) cats treated with single-session bilateral mastectomy. Complications were significantly more likely to occur in cats undergoing bilateral versus unilateral mastectomy. Median progression-free survival time was longer for cats treated with bilateral mastectomy (542 days) than for cats treated with unilateral mastectomy (289 days). Significant risk factors for disease progression included unilateral mastectomy, tumor ulceration, lymph node metastasis, and tumors arising in the fourth mammary gland. Significant risk factors for disease-specific death included lymph node metastasis and development of regional or distant metastasis. Among cats that did not develop metastasis, unilateral mastectomy was a significant risk factor for disease-specific death. Treatment with chemotherapy was associated with a significantly decreased risk of disease-specific death. CONCLUSIONS AND CLINICAL RELEVANCE Results supported bilateral mastectomy for the treatment of mammary adenocarcinoma in cats to improve progression-free and disease-specific survival time. Performing bilateral mastectomy in a staged fashion may help to decrease the complication rate.


Assuntos
Adenocarcinoma/veterinária , Doenças do Gato/cirurgia , Neoplasias Mamárias Animais/cirurgia , Mastectomia/veterinária , Adenocarcinoma/patologia , Adenocarcinoma/cirurgia , Animais , Doenças do Gato/patologia , Gatos , Feminino , Neoplasias Mamárias Animais/patologia , Mastectomia/métodos , Recidiva Local de Neoplasia/veterinária , Intervalo Livre de Progressão , Estudos Retrospectivos
13.
Disabil Health J ; 11(4): 637-643, 2018 10.
Artigo em Inglês | MEDLINE | ID: mdl-29673932

RESUMO

BACKGROUND: It is well-understood that children's social relationships are intrinsically linked to their overall health trajectories. Recess is the only time in the school day that children are free to play and socialize. Yet research on recess consistently indicates that many school playgrounds are challenged by a social landscape that is not conducive to meaningful play. While all children are susceptible to negative social experiences, children with disabilities are at a heightened risk for exclusion and victimization. OBJECTIVE: This study examines this phenomenon specifically within the context of recess. METHOD: Participants included 743 students in grades 4-8 who completed an anonymous on-line survey about their recess experiences. The responses of 44 students with disabilities were highlighted for analysis. MANOVA was used to assess sample differences between children who identified as having a disability and those who did not on self-reported recess enjoyment, affect, victimization and belongingness. Descriptive statistics and qualitative analyses were used to support the findings. RESULTS: Children with disabilities reported more negative affect and victimization and lower positive affect and belongingness. CONCLUSION: Further research is warranted as the results indicate that children with disabilities are more vulnerable than their non-disabled peers during recess. Studies that explore the context of recess may provide further insights as to best practices.


Assuntos
Crianças com Deficiência/psicologia , Crianças com Deficiência/estatística & dados numéricos , Jogos e Brinquedos/psicologia , Recreação/psicologia , Instituições Acadêmicas/estatística & dados numéricos , Estudantes/psicologia , Estudantes/estatística & dados numéricos , Adolescente , Criança , Feminino , Humanos , Masculino , Ontário , Projetos Piloto , Inquéritos e Questionários
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