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These first Australian National Standards of Care for Childhood-onset Heart Disease (CoHD Standards) have been developed to inform the healthcare requirements for CoHD services and enable all Australian patients, families and carers impacted by CoHD (paediatric CoHD and adult congenital heart disease [ACHD]) to live their best and healthiest lives. The CoHD Standards are designed to provide the clarity and certainty required for healthcare services to deliver excellent, comprehensive, inclusive, and equitable CoHD care across Australia for patients, families and carers, and offer an iterative roadmap to the future of these services. The CoHD Standards provide a framework for excellent CoHD care, encompassing key requirements and expectations for whole-of-life, holistic and connected healthcare service delivery. The CoHD Standards should be implemented in health services in conjunction with the National Safety and Quality Health Service Standards developed by the Australian Commission on Safety and Quality in Health Care. All healthcare services should comply with the CoHD Standards, as well as working to their organisation's or jurisdiction's agreed clinical governance framework, to guide the implementation of structures and processes that support safe care.
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Cardiopatias Congênitas , Humanos , Criança , Adulto , Austrália/epidemiologia , Cardiopatias Congênitas/terapia , Padrão de Cuidado , Atenção à SaúdeRESUMO
BACKGROUND: CHD is associated with considerable burden of care. Up to one-third of babies born with CHD require surgery or intervention during the first year of life with an associated increased risk of surgical site infection. Pediatric wound care is informed largely by adult data, with no national or international guidelines available. AIM: To examine pediatric cardiac surgical wound care practices reported by healthcare professionals Australia and New Zealand-wide. METHODS: A bi-national cross-sectional survey exploring pre-, intra- and post-operative wound practices was distributed using Exponential Non-Discriminative Snowball Sampling. Data were subject to descriptive analysis using SPSS Statistics 22.0. FINDINGS: Sixty-eight surveys representing all Australian and New Zealand pediatric cardiac surgical services were analyzed. Most respondents were experienced nurses. Pre-operative care varied greatly in practice and pharmaceutical agents used. Little consistency was reported for intra- and post-operative wound care. Nursing and medical staff shared responsibility for wound care. Wound photography was widely used, but only uploaded to electronic medical records by some. DISCUSSION: These results highlight that wound care management is largely informed at an institutional level. The many practices reported are likely to reflect a range of factors including cardiac condition complexity, surgery, prematurity, and the presence of scar tissue. The importance of a research and training program, which is multimodal, available, and reflective, is highlighted. CONCLUSION: These findings call for the establishment of a nurse-led program of research and education. The resultant suite of cardiac wound strategies could offer an effective and consistent pathway forward.
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BACKGROUND: Children with long-term conditions are vulnerable due to the treatments required for their conditions. Since the start of the coronavirus disease 2019 (COVID-19) pandemic, Western Australians experienced restrictions that changed daily life activities but were able to return to some of their previous routines due to the restrictions. AIM: The study explored the stress experiences of parents caring for children with long-term conditions during COVID-19 in Western Australia. DESIGN AND PARTICIPANTS: The study was codesigned with a parent representative caring for children with long-term conditions to ensure essential questions were targeted. Twelve parents of children with various long-term conditions were recruited. Ten parents completed the qualitative proforma, and two parents were interviewed in November 2020. Interviews were audio-recorded and transcribed verbatim. Data were anonymised and analysed using reflexive thematic analysis. FINDINGS: Two themes were produced: (1) 'Keep my child safe' describes the children's vulnerabilities due to their long-term conditions, the adjustments parents' made to keep their children safe and the various consequences faced. (2) 'COVID-19's silver lining' covers the positives of the COVID-19 pandemic, including their children having fewer infections, the availability of telehealth appointments, relationship improvements and the parent's hopes for a new normal where behaviours prevent transmission of infectious (e.g., hand sanitising). CONCLUSION: Western Australia provided a unique context for the COVID-19 pandemic due to no transmission of the virus severe acute respiratory syndrome coronavirus 2 at the time of the study. The tend and befriend theory aids in explaining the parents' stress experiences, and the application highlights a unique aspect of this theory. Parents tended to their children during COVID-19, but many could no longer rely on others for connection, support and respite, and became further isolated in attempting to protect their children due to COVID-19 consequences. The findings highlight that some parents of children with long-term conditions need specific attention during times of pandemics. Further review is recommended to support parents through the impact of COVID-19 and similar crises. PATIENT OR PUBLIC CONTRIBUTION: This study was codesigned with an experienced parent representative who was part of the research team and involved throughout the research process to ensure meaningful end-user engagement and ensure essential questions and priorities were addressed.
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COVID-19 , Criança , Humanos , COVID-19/epidemiologia , Austrália Ocidental/epidemiologia , Pandemias , Estresse Psicológico , Austrália , PaisRESUMO
BACKGROUND: The impact of hospital building design on patients, families and nurses related to nursing care interactions is not well understood. This study reports a pre-post intervention study to understand the effects of the move to a new children's hospital in Perth, Australia, on nurse workflow activities and on patient, family, and nurse experiences. METHODS: We used a pre-post explanatory sequential design involving observation of nurse work tasks; measurement of the Practice Environment Scale and Nurse Work Index; weekly surveys of nurse, patient and family experiences; and nurse focus groups and interviews with patients and families. Survey data were analysed using linear regression; qualitative data analysis used a thematic approach. RESULTS: Nurse time spent walking almost doubled (p < 0.001), from an estimated 10 min at T1 (pre-move) to around 20 min at T4 (12 months post-move), but there was no difference in nurse time providing patient care (p = 0.114). The Practice Environment Scale and Nurse Work Index showed significantly reduced scores for nursing foundations for quality of care (adjusted mean difference -0.08, p = 0.016) and staffing and resource adequacy (adjusted mean difference -0.19, p < 0.001).This fall was mirrored in nurse experience surveys with a reduction in mean scores from T1 to T3 (3 months post-move) of -0.7 (p < 0.001) and from T1 to T4 of -0.4 (p = 0.002). Thematic analysis of qualitative data found that initial challenges appeared to reduce over time. Nurses reported difficulties managing workflow in the new wards and feelings of exhaustion at T3, but this changed to more positive accounts at T4. For patients and families there was a tension between leaving the old and familiar, enjoying the light and space of the new and shared observations that nurses appeared to be busier at T3. At T4, these experiences had changed to 'being a family in hospital' and confidence that a nurse was always close by. CONCLUSIONS: Both benefits and challenges of the new hospital design were encountered from the perspective of nurses, patients, and families. Nurses spent double the time walking in the new environment, but time spent providing patient care was unchanged. Over time, the initial practice challenges reduced as nurses adapted to working in the new environment. TRIAL REGISTRATION: ACTRN12618000775213.
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Hospitais Pediátricos , Pacientes , Humanos , Criança , Grupos Focais , Inquéritos e Questionários , AustráliaRESUMO
Children with chronic conditions are experiencing improved survival worldwide, and it is well-known that their parents are stressed. Yet, despite this knowledge, parents continue to experience stress. Our study explored the lived experience of parental stress when caring for children with various chronic conditions to identify opportunities to potentially reduce stress for these parents. This was an exploratory qualitative study using semi-structured interviews. To ensure appropriate research priorities were addressed, the study was co-designed with consumer and stakeholder involvement. Twenty parents were interviewed. Parents were recruited through a recognized family support organization for children with various care needs in Western Australia. Interviews were audio-recorded, transcribed verbatim, anonymized, and analyzed using Interpretative Phenomenological Analysis. Two superordinate themes were identified: (1) Gut instinct to tipping point included parents as unheard experts and their experiences of stress and becoming overwhelmed. (2) Losses and gains covered the parents' identity and relationship challenges and coping strategies with their children's unpredictable conditions. Parents' experiences of stress caring for children with chronic conditions can be applied to the Job-Demand Control-Support Model for occupational stress. Not only does this application provide a useful framework for practitioners but it adds a unique perspective that reflects the dual role of parents in caring for their children with chronic conditions as a parent but also a professional with a 24/7 workload. The parents' experiences highlight a need for improved support access, effective communication between parents and health care professionals, discharge preparation and information provision, and regular screening of parental stress with a referral pathway.
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Sleep is a common challenge for parents with sick children and can impact parents' health, wellbeing, and caregiving responsibilities. Despite the vast research around parental sleep when their child is sick, the concept is not clearly defined. A phased principle-based concept analysis that includes triangulation of methods and quality criteria assessment was used to explore how the concept is described, used, and measured in the current literature. The aim was to analyse and clarify the conceptual, operational, and theoretical basis of parental sleep when their child is sick to produce an evidence-based definition and to identify knowledge gaps. A systematic literature search including databases CINAHL, Embase, MEDLINE, PsychARTICLES, PsychINFO, Pubmed, Scopus and Web of Science, identified 546 articles. The final dataset comprised 74 articles published between 2005 and 2021 and was assessed using a criteria tool for principle-based concept analysis. Data were managed using NVivo, and thematic analysis was undertaken. A precise definition is not present in the literature. Various tools have been used to measure parents' sleep, as well as exploration via interviews, open-ended questions, and sleep diaries. The terminology used varied. Parental sleep when their child is sick is interrelated with other concepts (e.g., stress). A recommended definition is offered. A conceptual understanding of parental sleep when their child is sick will help to guide translational research and to conduct studies critical to clinical practice and research. Future research includes developing a measurement tool for parental sleep when their child is sick to be used in study design and future interventions.
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Pais , Sono , Criança , HumanosRESUMO
OBJECTIVE: The objective of this review is to explore the research on factors that influence international undergraduate nursing students' experiences and perceptions of their learning environment. INTRODUCTION: International nursing students bring valuable cultural and economic opportunities to universities and health care. It is important that their clinical learning experiences are positive. Factors that influence nursing students' experiences may include cultural and communication differences, diversity related to health care systems, learning and teaching strategies, and programs to improve communication. International nursing students' experiences and perceptions are reported in terms of expressed confidence, perceived competence, and levels of satisfaction. A scoping review is required to identify what is known and to identify the knowledge gaps in this area. INCLUSION CRITERIA: International nursing students are those who are enrolled in an undergraduate nursing program in a higher-education institution in a country other than their own. International students studying vocational nursing and exchange students will be excluded. The learning environment is considered to be one in which any person who may influence patient care learns. Primary research, both qualitative and quantitative methods, published since 1995 in any language that the research team can translate will be included. METHODS: This review follows the JBI methodology for scoping reviews. Data extraction will include the factors influencing students' experiences and the concepts that were explored. Data analysis will include frequencies of concepts and associations between them. Results will be presented in tabular form and mind maps. SCOPING REVIEW REGISTRATION NUMBER: Open Science Framework (osf.io/r4v6q).
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Bacharelado em Enfermagem , Estudantes de Enfermagem , Competência Clínica , Humanos , Idioma , Aprendizagem , Literatura de Revisão como AssuntoRESUMO
School-based occupational therapists are well-equipped to prepare adolescents to transition from the education system to work and live in their communities, but they report challenges in securing their place on post-secondary transition planning teams. We argue that occupational therapists' efforts to advocate for their role in post-secondary transition could be strengthened by a deeper engagement with what is considered 'best practice' in transition planning: improving students' ability and opportunity to exercise self-determination. In this commentary, we review the self-determination evidence-base; identify congruence between the underlying philosophies of self-determination and occupational therapy; and highlight gaps in existing self-determination models that occupational therapists are uniquely posed to fill by focusing on self-determination as they support transition age students.
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Comunicação , Saúde da Família , Poder Familiar/psicologia , Pediatria , Humanos , Enfermagem PediátricaRESUMO
BACKGROUND: In recognising the capability and rights of children to express their experiences, 'draw, write and tell' (DWT) has emerged as a participatory qualitative research method. DWT enables children to communicate their experiences by drawing, writing words and telling the story of their pictures in response to interview questions. AIM: To discuss the challenges and benefits of using DWT to explore children's experiences of pain. DISCUSSION: Aspects that affect the quality of data in DWT include the materials used and the influences of the primary caregiver. Experience suggests that if trust between the child and researcher has been established, the duration of the interview is unimportant. CONCLUSION: While many methods of analysis can be used with data gathered using DWT, it is important to ensure children's perspectives are represented accurately. Furthermore, children's capacity as active participants in research should be reflected. IMPLICATIONS FOR PRACTICE: Future studies could examine the potential of using drawings to share information in adult and paediatric clinical settings.
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Saúde da Criança , Redação , Adulto , Criança , Humanos , Pesquisa em Enfermagem , Projetos de PesquisaRESUMO
BACKGROUND: The World Health Organisation has recommended that healthcare workers, teachers and community leaders work with parents to support children living with HIV. The aim of this study was to assess the perceptions and experiences of primary caregivers and other care providers such as healthcare workers, teachers, and community leaders regarding their involvement, practice and challenges of HIV disclosure to children aged between 6 and 12 years living with HIV in Malawi. METHODS: Twelve focus group discussions and 19 one-on-one interviews involving a total of 106 participants were conducted in all three administrative regions of Malawi. The interviews and focus group discussions explored perceptions and experiences regarding involvement, practice and challenges of disclosure of HIV status to children. Data were analysed using thematic analysis. RESULTS: Primary caregivers, healthcare workers, teachers, and community leaders all reported that the disclosure of HIV status to children was not well coordinated because each of the groups of participants was working in isolation instead of working as a team. A "working together" model emerged from the data analysis where participants expressed the need for them to work as a team in order to promote safe and effective HIV status disclosure through talking about HIV, sharing responsibility and open communication. Participants reported that by working together, the team members would ensure that the prevalence of HIV disclosure to young children increases and that there would be a reduction in any negative impact of disclosure. CONCLUSION: Global resources are required to better support children living with HIV and their families. Healthcare workers and teachers would benefit greatly from training in working together with families living with HIV and, specifically, training in the disclosure process. Resources, in the form of books and other educational materials, would help them explain HIV and its effective management to children and families.
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Saúde da Criança , Participação da Comunidade , Revelação , Infecções por HIV , Pessoal de Saúde , Pais , Professores Escolares , Adulto , Atitude , Cuidadores , Criança , Comunicação , Comportamento Cooperativo , Atenção à Saúde , Família , Feminino , Grupos Focais , HIV , Humanos , Malaui , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Apoio SocialRESUMO
PURPOSE: Pain management within emergency departments (ED) remains challenging. Given that unrelieved pain in children is linked to a number of negative physiological and psychological consequences, optimal management of children's pain is paramount. Many studies exploring children's pain have adopted quantitative methods or sought the perspectives of adults. Compared to adults, studies examining children's views on pain and pain management are limited. This study aimed to explore children's pain experiences, their perception of pain management and expectations of the role of the nurse. DESIGN: This was a qualitative descriptive study using an inductive approach. METHODS: Fifteen children, aged 4-8 years who presented to the ED of an Australian tertiary pediatric hospital in acute pain participated. Data were collected using draw, write, and tell (DWT) technique and analyzed using thematic analysis. RESULTS: Three themes emerged (1) "Security," (2) "My pain" with subthemes: "The pain feelings" and "My sad/happy feelings," (3) "Comfort and relief" with subthemes: "Taking my mind off it," "Resting" and "Hospital things." When in pain children needed to feel secure. Parents and nurses were important in fostering a secure environment for children. Children were capable of describing their pain and identified nonpharmacological strategies to help their pain. PRACTICE IMPLICATIONS: Children as young as 4 years old can provide detailed accounts of their pain, which extends beyond physical dimensions to include visual, auditory, and sensory features. Nurses need to listen, be honest, and develop trust with children to be helpful. Nonpharmacological pain-relieving strategies can be implemented by parents and nurses in collaboration with the child. Fostering a secure environment is essential.
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Manejo da Dor/métodos , Medição da Dor/métodos , Dor/diagnóstico , Austrália , Criança , Pré-Escolar , Serviço Hospitalar de Emergência , Feminino , Humanos , Masculino , Pesquisa Qualitativa , Sensibilidade e Especificidade , Centros de Atenção Terciária , RedaçãoRESUMO
PROBLEM: Despite a substantial body of knowledge regarding the importance of the social determinants of health, recognizing and responding to the psychosocial circumstances of seriously and chronically ill children and their families is not well established in routine pediatric nursing care. ELIGIBILITY CRITERIA: The search process focused on psychological and social determinants and care in the healthcare setting. Searches were limited to research and review publications written in the English language. The quality of evidence was graded using the National Health and Medical Research Council evidence hierarchy. RESULTS: Thirteen publications were identified for inclusion. Healthcare providers do recognize emotional distress experienced by patients, but feel unable to address psychosocial issues due to the lack of time, a lack of confidence in their own communication skills, and the perception that patients and their families prioritize physical care over psychosocial care. For patients and their families the main issue was that the healthcare system was focused on physical care with little opportunity to talk about psychosocial concerns. CONCLUSIONS: The greatest barrier to addressing the social determinants of health in the pediatric context is the dominance of the 'medical model' of care. Also, many healthcare providers believe that they lack the communication skills necessary to talk about psychosocial issues. IMPLICATIONS: The way forward will be to empower nurses through the sharing of knowledge of the social determinants of health, the development of skills in relationship building and therapeutic communication, and the mentorship of compassionate family-centered care.
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Proteção da Criança , Enfermagem Pediátrica/normas , Determinantes Sociais da Saúde/estatística & dados numéricos , Austrália , Criança , Pré-Escolar , Enfermagem Familiar/organização & administração , Feminino , Pessoal de Saúde/organização & administração , Humanos , Medicina Integrativa , Masculino , Avaliação das Necessidades , Relações Enfermeiro-Paciente , Enfermagem Pediátrica/tendênciasRESUMO
BACKGROUND: Pain is a universal and complex phenomenon that is personal, subjective and specific. Despite growing knowledge in pediatric pain, management of children's pain remains sub-optimal and is linked to negative behavioral and physiological consequences later in life. As there is no synthesis of these studies, it was timely to undertake a systematic review. OBJECTIVES: To identify, evaluate and synthesize the existing qualitative evidence on children's experiences of acute pain, including pain management, within a healthcare facility. INCLUSION CRITERIA TYPES OF PARTICIPANTS: Children aged four to 18 years (inclusive) attending a healthcare facility who experienced acute pain associated with any injury, medical condition or treatment. PHENOMENA OF INTEREST: Children's experiences and perceptions of their acute pain, pain management and expectations of others in managing their pain. Studies on children's experiences of pain in the postoperative context were excluded as a systematic review exploring this phenomenon had previously been published. Studies reporting on children's experiences of chronic pain were also excluded. CONTEXT: Any healthcare facility including general practitioners' surgeries, hospitals, emergency departments and outpatient clinics. TYPES OF STUDIES: Qualitative studies including phenomenology, grounded theory, ethnography, action research and feminist research designs. SEARCH STRATEGY: Using a three-step search strategy, databases were searched in December 2015 to identify both published and unpublished articles from 2000 to 2015. Studies published in languages other than English were excluded. METHODOLOGICAL QUALITY: All studies that met the inclusion criteria were assessed by at least two independent reviewers for methodological quality using a standardized critical appraisal tool from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI). DATA EXTRACTION: Data were extracted from the papers included in the review using standardized data extraction tool from JBI-QARI. DATA SYNTHESIS: Findings were pooled using JBI-QARI. Findings were rated according to their level of credibility and categorized based on similarity in meaning and then were subjected to a meta-synthesis. RESULTS: Four studies were included in this review. Two meta-syntheses were generated from five categories based on 21 findings: first, children can express their pain experiences in terms of cause, location, meaning and quality. Children's pain experiences include both physical and psychological dimensions. Children's pain experiences are influenced by their previous pain experiences, pain expectations and sociocultural factors. Second, children use a range of cognitive/behavioral and sensory/physical self-soothing strategies not only to help manage their pain, but also rely on the actions and presence of others as helpers when they are in pain. CONCLUSION: Children's pain is a multi-dimensional complex phenomenon relying upon a multi-modal approach to management. Children as young as four years are capable of articulating their pain in terms of location, intensity and depth. The way children perceive, express and respond to pain is shaped by sociocultural factors, previous pain experiences and their expectations of pain. Children, parents and healthcare professionals play an important role in managing children's pain experiences.
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Dor Aguda/psicologia , Dor Aguda/terapia , Adaptação Psicológica , Criança , Instalações de Saúde , Humanos , Manejo da Dor/métodos , Manejo da Dor/psicologia , Relações Pais-Filho , Relações Profissional-Paciente , Pesquisa QualitativaRESUMO
REVIEW QUESTION/OBJECTIVE: The qualitative objective of this systematic review is to identify and synthesize the best available evidence on experiences of acute non-surgical pain, including pain management, of children (between four to 18 years) when they present to a healthcare facility for treatment.The specific objectives are to identify: BACKGROUND: The International Association for the Study of Pain defines pain as "an unpleasant sensory and emotional experience associated with actual or potential tissue damage or described in terms of such damage". The pain experience is multifaceted and complex, extending beyond the physiological interpretation of a noxious stimulus, encompassing other dimensions, including; psychological, cognitive, sociocultural, affective and emotional factors. Pain can be described as chronic (persisting for three months or more) or acute (a time limited response to a noxious stimuli). Over the past 50 years clinical research has made revolutionary contributions to better understanding pediatric pain. The once pervasive erroneous notion that infants do not experience pain the same way as adults has been firmly dispelled. We now know that nervous system structures associated with the physiological interpretation of pain are functional as early as fetal development. Despite this critical knowledge and the growing global commitment to improving pediatric pain management in clinical practice, evidence repeatedly suggests that pain management remains suboptimal and inconsistent, a phenomenon commonly referred to as oligoanalgesia. Research evidence has linked poorly managed pain in the pediatric population to negative behavioral and physiological consequences later in life. Effective pain management is therefore a priority area for health care professionals. Improved understanding of children's experiences of acute non-surgical pain may lead to improved pain management and a reduction in oligoanalgesia.In the 1970s and 1980s, studies began exploring the subjective experiences of pediatric pain and discovered children's abilities to articulate their pain experiences, and to link causes and consequences of their pain. Developmental trends or age related patterns with regards to children's expressions and experiences of pain were identified. Recent studies have also recognized apparent trends in children's understanding and expressions of pain; these follow an age and cognitive development trajectory in line with Piaget's theories of development.For many children psychosocial aspects of pain, including emotions like fear, stress and anxiety, are often more unpleasant than the painful experience itself. Emotional responses such as distress and anxiety are commonly associated with the anticipation of pain, can exacerbate and intensify the pain experience, and can significantly lower a child's pain threshold. One study utilized an observational pain assessment tool to explore children's pain experiences. The findings indicated that children who underwent "non-painful" procedures (such as restraint) had equal, and in some cases higher, pain scores than those who underwent painful procedures (such as intravenous cannulation).Several studies exploring pediatric pain within health care settings (including, but not limited to, general practitioners, hospitals, emergency departments and outpatient clinics) have adopted quantitative methods, some examined parents' perspectives, and others explored nurses' perceptions. While results of such studies have added to the existing body of knowledge that supports the need to focus on improving pediatric pain management, it has been suggested that failing to ask children directly risks not capturing subjective experiences of pain from the children's perspectives in their entirety. Seeking the children's perspectives could provide a more reliable and adequate means of gaining insight into their needs and expectations when they are in pain.A single centered study in Singapore used semi-structured face-to-face interviews (n=15) to explore children's experiences of pain management postoperatively. While the children, aged between six and 12 years, identified the role of analgesia in managing their pain, they also placed significant emphasis on the role of parents and health care professionals in implementing non-pharmacological interventions in pain management. These results are relevant as they provide insights into how children experience and express pain, and their expectations of health care professionals in managing their pain. These findings draw attention to effective pain management approaches when caring for children. Similarly, a UK study adopted a cross sectional descriptive design using the draw and write technique aimed at investigating children's views on what helped when they were in pain. The children (n=71) were aged between four and 16 years. Findings revealed that children viewed themselves as active agents in pain management, while also placing significant emphasis on the importance of parents and nurses in managing their pain. In both studies, children valued nurses for social interactions, such as kindness and humor, rather than the provision of clinical care, including analgesia administration. Adjunct therapies such as distraction, visualization and music have also been shown to be effective in managing the pain experience in children.Not only do these findings demonstrate the complexity of the pain experience for the child, they also support the notion that improved pain management may come from research that is designed to better understand the entire pain experience from the child's perspective. While there are systematic reviews on interventions for managing children's pain, and one explored children's experiences in the postoperative context, none have considered children's experiences of acute non-surgical pain when they present for treatment. This qualitative systematic review aims to identify and synthesize results of studies exploring children's experiences of pain and pain management.
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Dor Aguda/psicologia , Assistência Ambulatorial/métodos , Manejo da Dor/métodos , Dor Aguda/terapia , Adolescente , Instituições de Assistência Ambulatorial , Criança , Pré-Escolar , Protocolos Clínicos , Feminino , Humanos , Masculino , Medição da Dor/métodos , Medição da Dor/psicologia , Pais/psicologia , Pesquisa Qualitativa , Revisões Sistemáticas como AssuntoRESUMO
AIMS AND OBJECTIVES: This paper presents and discusses an alternative model of family-centred care (FCC) that focuses on optimising the health and developmental outcomes of children through the provision of appropriate support to the child's family. BACKGROUND: The relevance, meaning and effectiveness of FCC have been challenged recently. Studies show that parents in hospital often feel unsupported, judged by hospital staff and uncertain about what care they should give to their child. With no convincing evidence relating FCC to improved child health outcomes, it has been suggested that FCC should be replaced with a new improved model to guide the care of children in hospital. DESIGN: This integrative review discusses theory and evidence-based literature that supports the practice of an alternative model of FCC that is focused on the health and developmental outcomes of children who are seriously ill, rather than the organisational requirements of children's hospitals. METHODS: Theories and research findings in a wide range of disciplines including epidemiology, psychology, sociology, anthropology and neuroscience were accessed for this discussion. Nursing literature regarding partnership building, communication and FCC was also accessed. DISCUSSION: This paper discusses the benefits of applying a bioecological model of human development, the family and community resource framework, the concepts of allostatic load and biological embedding, empowerment theory, and the nurse-family partnership model to FCC. CONCLUSION: While there is no direct evidence showing that the implementation of this alternative model of FCC in the hospital setting improves the health and developmental outcomes of children who are seriously ill, there is a great deal of evidence from community nursing practice that suggests it is very likely to do so. RELEVANCE TO CLINICAL PRACTICE: Application of these theoretical concepts to practice has the potential to underpin a theory of nursing that is relevant for all nurses irrespective of the age of those they care for and the settings within which they work.
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Assistência Centrada no Paciente/organização & administração , Adulto , Criança , Comunicação , Hospitalização , Humanos , Pais/psicologia , Poder PsicológicoRESUMO
PURPOSE: The purpose was to develop a maternal confidence in knowledge and understanding scale (Maternal Knowledge and Understanding Scale [MKUS]) and examine the effect of psychosocial factors at the time of a child's heart surgery. DESIGN AND METHODS: Using cross-sectional design, the MKUS was developed and tested. Validated instruments were used to examine the impact of psychosocial factors. RESULTS: The MKUS showed acceptable internal consistency (Cronbach's alpha .78). Higher levels of maternal anxiety and lower levels of social support were associated with lower MKUS scores (p < .05). PRACTICE IMPLICATIONS: A measure of maternal confidence in knowledge and understanding could draw attention to psychosocial factors and opportunities to enhance nursing support.