Best practice principles for management of children with developmental coordination disorder (DCD) : results of a scoping review

Background. Developmental coordination disorder (DCD) is a prevalent health condition that is frequently unrecognized despite the substantial evidence that has accumulated regarding how it affects children’s health, education and skills.Most literature focuses on measurement of impairment and description of intervention approaches for individual children; little is known about the principles that should guide best practice and service delivery for children with DCD as a population. The purpose of this study was to identify these principles. Methods. A scoping review was used to ‘map’ the information available to inform intervention and service delivery. Scholarly and grey literature written in English was identified in six databases, using a combination of keywords (e.g. guidelines, management, models and DCD); a ‘snow-balling’ technique was also used in Canada and the UK to access clinical protocols used in publicly funded health care systems. Over 500 documents were screened: 31 met inclusion criteria as they outlined practice principles for children with DCD as a population. Data regarding best practices were independently extracted by two reviewers and then compared with achieve consistency and consensus. Results. Two over-arching themes emerged, with five principles: (1) Organizing services to efficiently meet the comprehensive needs of children (e.g. Increasing awareness of DCD and coordination; Implementing clearly defined pathways; Using a graduated/staged approach); (2) Working collaboratively to offer evidence-based services (e.g. Integration of child and family views; Evidence-based interventions fostering function, participation and prevention). Conclusion Numerous documents support each of the principles, reflecting agreement across studies about recommended organization of services.While these principles may apply to many populations of children with disabilities, this review highlights how essential these principles are in DCD. Researchers, managers, clinicians, community partners and families are encouraged to work together in designing, implementing and evaluating interventions that reflect these principles.

Estado de las enfermedades raras que cursan con discapacidad intelectual en Colombia

Las enfermedades raras o huérfano son una problemática que ha tomado mucha importancia en el contexto mundial del presente siglo, estas se han definido como crónicas, de difícil tratamiento de sus síntomas y con baja prevalencia en la población; muchas de estas enfermedades cursan con varios tipos de discapacidad, siendo el objetivo del presente trabajo el enfocarse en aquellas enfermedades raras que cursan con discapacidad intelectual. Para poder profundizar en estas enfermedades se realizó una revisión teórica sobre las enfermedades raras, así como de la discapacidad psíquica y su importancia a nivel mundial y nacional. A partir de estas definiciones, se revisaron en profundidad 3 enfermedades raras que cursan con discapacidad intelectual en el contexto colombiano, como son: el síndrome de Rett, el síndrome de Prader-Willi y el síndrome de X frágil. En cada una de estas enfermedades además se explicaron los tipos de diagnóstico, intervención, prevención, grupos de apoyo y tipos de evaluación que más se usan en el contexto nacional

A Experiência de dor no doente oncológico com doença avançada

Introdução: O pós-parto abrange o processo de transição para a parentalidade, considerado um dos principais momentos de transição ao longo da vida, responsável por mudanças a vários níveis, nomeadamente individual, conjugal, familiar e social, implicando gestão de novos sentimentos, comportamentos e preocupações com o(a) próprio(a) e com o(s), filho(s) (Kaitz, 2007; Mendes, 2009). Esta revisão integrativa da literatura foca-se nas preocupações da figura materna da díade parental no período pós-parto. Objetivos: Analisar os estudos de investigação acerca da temática das preocupações maternas no pós-parto nas sociedades contemporâneas. Metodologia: Revisão integrativa da literatura centrada na temática “preocupações maternas no pós-parto”. Utilizouse o motor de busca EBSCOhost, com acesso às bases de dados científicos: CINAHL® Complete; MEDLINE Complete; Cochrane Database of Systematic Reviews; Cochrane Methodology Register; e ainda a base de dados SCIELO ”. Obtiveramse 17 publicações científicas com a utilização do Boolean search operators “AND”, para os descritores MeSH pósparto/“ postpartum” e nascimento/“childbirth” e como tema principal “preocupações maternas”/“maternal concerns”, com disponibilidade para aceder ao texto completo, com data de publicação entre o período de Janeiro 2000 e Dezembro 2015. Resultados: Os resultados da revisão integrativa da literatura acerca da temática das preocupações maternas que pretendeu responder à questão - Quais as preocupações maternas durante o pós-parto nas sociedades contemporâneas? - agruparam-se em 5 áreas: preocupações maternas e o cuidar do recém-nascido; preocupações maternas e recuperação funcional; preocupações maternas e transição para a parentalidade; preocupações maternas e relacionamento conjugal; e preocupações maternas intergeracionais. Conclusões: Da revisão dos artigos selecionados verificou-se que as preocupações maternas refletem as necessidades das mães, no período de transição de pós-parto, assim como, as assinaladas alterações no assumir de novos papéis e da redefinição/reorganização nas responsabilidades, no seio da díade parental/família e deste modo, espelham uma área de interesse no âmbito dos cuidados à mulher/casal e família após o nascimento de um filho, de onde as intervenções de enfermagem especializada em saúde materna e obstetrícia são relevantes na avaliação da transição saudável no contexto do pós-parto, quer na vertente materna, quer na díade parental e no cuidar do recém-nascido. Palavras-chave: pós-parto; preocupações maternas; recém-nascido; nascimento Referências bibliográficas: Kaitz, M. (2007). Maternal concerns during early parenthood. Child: Care, Health and Development, 33(6), 720-727. Lugina, H., Christensson, K., Massawe, S., Nystrom, L., & Lindmark, G. (2001). Change in maternal concerns during the 6 weeks postpartum period: A study of primiparous mothers in Dar es Salaam, Tanzania. Journal of Midwifery & Women’s Health, 46(4), 248-257. doi: 10.1016/S1526-9523(01)00133-7 Lugina, H., Nyström, L., Christensson, K., & Lindmark, G. (2004). Assessing mothers’ concerns in the postpartum period: Methodological issues. Journal of Advanced Nursing, 48(3), 279-290. doi: 10.1111/j.1365-2648.2004.03197.x Mendes, I. M. (2009). Ajustamento materno e paterno: Experiências vivenciadas pelos pais no pós-parto. Coimbra, Portugal: Mar da Palavra. * Escola Superior de Enfermagem de Coimbra, Unidade Científico-Pedagógica de Enfermagem de Saúde Materna e Obstetrícia [ana@esenfc.pt] ** Escola Superior de Enfermagem de Coimbra, Enfermagem de Saúde Materna, Obstetrícia e Ginecologia, Professora C

Fecal coliform contamination in child day care environments in Houston, Texas

Outbreaks of diarrhea are common among children in day care centers (DCC). Enteropathogens associated with these outbreaks are spread by the fecal-oral route through contaminated hands or environmental objects. This prospective study was undertaken to determine the prevalence of fecal coliform (FC) contamination in the DCC environment. Ten rooms in 6 DCC housing 121 children $<$2 years of age were studied for 13 weeks. Inanimate objects (1275), toy balls (724), and hands (954) were cultured 1-3 times per week. FC contamination was common during each week of study and was significantly (p $<$ 0.05) greater for objects, toy balls, and hands of children in toddler compared to infant rooms. In 5 rooms in which clothes were worn over diapers, there was a significantly lower prevalence of FC of toy balls (p $<$ 0.005), inanimate objects (p $<$ 0.05), and hands of children (p $<$ 0.001) and caregivers (p $<$ 0.05) when compared to rooms in which overclothes were not worn. Occurrence of diarrhea was significantly associated with increased contamination of caregivers' and children's hands. Using plasmid analysis of trimethoprim (TMP)-resistant Escherichia coli, stool and environmental isolates from individual DCC rooms had the same plasmid patterns, which were unique to each center. In summary, FC of environmental isolates and hands of children and caregivers in DCC is common; toy balls can serve as sentinels of contamination; FC can be significantly decreased by use of clothes worn over diapers; and plasmid analysis of E. coli strains showed the same patterns from stool and environmental isolates. ^

Maternal, child health, and family planning services [microform] : hearings before the Subcommittee on Health and the Environment of the Committee on Energy and Commerce, House of Representatives, One Hundredth Congress, second session, February 25, 1988--healthy children, investing in the future; April 22, 1988--Title X of the Public Health Service Act (H.R. 3769).

"Serial no. 100-149."

Something normal in a very, very abnormal environment – Nursing work to honour the life of dying infants and children in neonatal and paediatric intensive care in Australia

The majority of deaths of children and infants occur in paediatric and neonatal intensive care settings. For nurses, managing an infant/child's deterioration and death can be very challenging. Nurses play a vital role in how the death occurs, how families are supported leading up to and after the infant/child's death. This paper describes the nurses' endeavours to create normality amidst the sadness and grief of the death of a child in paediatric and neonatal ICU. Focus groups and individual interviews with registered nurses from NICU and PICU settings gathered data on how neonatal and paediatric intensive care nurses care for families when a child dies and how they perceived their ability and preparedness to provide family care. Four themes emerged from thematic analysis: (1) respecting the child as a person; (2) creating opportunities for family involvement/connection; (3) collecting mementos; and (4) planning for death. Many of the activities described in this study empowered parents to participate in the care of their child as death approached. Further work is required to ensure these principles are translated into practice.

Creating a therapeutic environment : a non-randomised controlled trial of a quiet time intervention for patients in acute care

Background: Noise is a significant barrier to sleep for acute care hospital patients, and sleep has been shown to be therapeutic for health, healing and recovery. Scheduled quiet time interventions to promote inpatient rest and sleep have been successfully trialled in critical care but not in acute care settings. Objectives: The study aim was to evaluate as cheduled quiet time intervention in an acute care setting. The study measured the effect of a scheduled quiet time on noise levels, inpatients’ rest and sleep behaviour, and wellbeing. The study also examined the impact of the intervention on patients’, visitors’ and health professionals’ satisfaction, and organisational functioning. Design: The study was a multi-centred non-randomised parallel group trial. Settings: The research was conducted in the acute orthopaedic wards of two major urban public hospitals in Brisbane, Australia. Participants: All patientsadmitted to the two wards in the5-month period of the study were invited to participate, withafinalsample of 299 participants recruited. This sample produced an effect size of 0.89 for an increase in the number of patients asleep during the quiet time. Methods: Demographic data were collected to enable comparison between groups. Data for noise level, sleep status, sleepiness and well being were collected using previously validated instruments: a Castle Model 824 digital sound level indicator; a three point sleep status scale; the Epworth Sleepiness Scale; and the SF12 V2 questionnaire. The staff, patient and visitor surveys on the experimental ward were adapted from published instruments. Results: Significant differences were found between the two groups in mean decibel level and numbers of patients awake and asleep. The difference in mean measured noise levels between the two environments corresponded to a ‘perceived’ difference of 2 to 1. There were significant correlations between average decibel level and number of patients awake and asleep in the experimental group, and between average decibel level and number of patients awake in the control group. Overall, patients, visitors and health professionals were satisfied with the quiet time intervention. Conclusions: The findings show that a quiet time intervention on an acute care hospital ward can affect noise level and patient sleep/wake patterns during the intervention period. The overall strongly positive response from surveys suggests that scheduled quiet time would be a positively perceived intervention with therapeutic benefit.

Understanding the optimal learning environment in palliative care

The learning experiences of student nurses undertaking clinical placement are reported widely, however little is known about the learning experiences of health professionals undertaking continuing professional development (CPD) in a clinical setting, especially in palliative care. The aim of this study, which was conducted as part of the national evaluation of a professional development program involving clinical attachments with palliative care services (The Program of Experience in the Palliative Approach [PEPA]), was to explore factors influencing the learning experiences of participants over time. Thirteen semi-structured, one-to-one telephone interviews were conducted with five participants throughout their PEPA experience. The analysis was informed by the traditions of adult, social and psychological learning theories and relevant literature. The participants' learning was enhanced by engaging interactively with host site staff and patients, and by the validation of their personal and professional life experiences together with the reciprocation of their knowledge with host site staff. Self-directed learning strategies maximised the participants' learning outcomes. Inclusion in team activities aided the participants to feel accepted within the host site. Personal interactions with host site staff and patients shaped this social/cultural environment of the host site. Optimal learning was promoted when participants were actively engaged, felt accepted and supported by, and experienced positive interpersonal interactions with, the host site staff.

The bondage of an imposed visual discourse : understanding the built environment's influence on the 'oldest-old' aged care residents' sense of peace

This study investigates the influence of the built environment upon residents' sense of familiarity, concept of self and thus, their facilitation of place through the theory of "The Bondage of Imposed Visual Discourse". Simone de Beauvoir's theory "The Bondage of Feminine Elegance" provides the conceptual understanding of the visual discourse between the physicality of clothing and the wearer's personal identity. This fashion theory is transposed to explore the influence of the built environment's physicality upon aged care residents' personal identity. This paper presents findings from a study of professionals' opinions in reference to the built environment of permanent residential aged care for the 'oldest-old' of Australia. The researcher conducted qualitative interviews with four participants: an architect, occupational therapist, nursing home facility manager and an aged care lobbyist in the South-East Queensland. This study is structured towards proposing "place-focused" qualitative design principles to encourage residents' sense of place through the built environment. These proposed principles are addressed with reference to existing Standards and Principles outlined by the Australian Government.

Nursing practice environment, quality of care and morale of hospital nurses in Japan

The purpose of this study was to describe Japanese hospital nurses’ perceptions of the nursing practice environment and examine its association with nurse-reported ability to provide quality nursing care, quality of patient care and ward morale. A cross-sectional survey design was used including 223 nurses working in 12 acute inpatient wards in a large Japanese teaching hospital. Nurses rated their work environment favorably overall using the Japanese version of the Practice Environment Scale of the Nursing Work Index. Subscale scores indicated high perceptions of physician relations and quality of nursing management, but lower scores for staffing and resources. Ward nurse managers generally rated the practice environment more positively than staff nurses except for staffing and resources. Regression analyses found the practice environment was a significant predictor of quality of patient care and ward morale, whereas perceived ability to provide quality nursing care was most strongly associated with years of clinical experience. These findings support interventions to improve the nursing practice environment, particularly staffing and resource adequacy, to enhance quality of care and ward morale in Japan.

The effects of the indoor environment of residential care homes on dementia suffers in Hong Kong : a critical incident technique approach

Dementia is an irreversible and incurable syndrome that leads to progressive impairment of cognitive functions and behavioural and psychological symptoms such as agitation, depression and psychosis. Appropriate environmental conditions can help delay its onset and progression, and indoor environmental (IE) factors have a major impact. However, there is no firm understanding of the full range of relevant IE factors and their impact levels. This paper describes a preliminary study to investigate the effects of IE on Hong Kong residential care homes (RCH) dementia residents. This involved six purposively selected focus groups, each comprising the main stakeholders of the dementia residents’ caregivers, RCH staff and/or registered nurses, and architects. Using the Critical Incident Technique, the main context and experiences of behavioural problems of dementia residents caused by IE were explored and the key causal RCH IE quality factors identified, together with the associated responses and stress levels involved. The findings indicate that the acoustic environment, lighting and thermal environment are the most important influencing factors. Many of the remedies provided by the focus groups are quite simple to carry out and are summarised in the form of recommendations to current RCHs providers and users. The knowledge acquired in this initial study will help enrich the knowledge of IE design for dementiaspecific residential facilities. It also provides some preliminary insights for healthcare policymakers and practitioners in the building design/facilities management and dementia-care sectors into the IE factors contributing to a more comfortable, healthy and sustainable RCH living environment in Hong Kong.

Measuring child work and residence adjustments to parents' long-term care needs

This article estimates the effects of various parent and child characteristics on the choice of care arrangement of the parent, taking into account the potential endogeneity of some of the child characteristics. Three equations are estimated: a care choice equation, a child location equation, and a child work equation. Results suggest a hierarchy of family decision making; child locations affect the care decision, which affects child work decisions. The results also question previous research attempting to explain causes of secular trends in long-term care.