家长参与护理模式对儿童患者治疗效果的影响

目的:观察家长参与护理模式对小儿治疗依从性及睡眠质量的影响.方法:选取2019年6月至2021年1月厦门大学附属第一医院收治的留院观察患儿146例作为研究对象,按照电脑随机抽选法随机分为对照组和观察组,每组73例.其中对照组患儿给予常规护理模式,观察组患儿在对照组护理基础上采用家长参与护理模式,比较2组患儿的治疗依从性...     

Parents, nurses and paediatric nursing: a critical review

The desirability of encouraging parents to live-in with their hospitalized child is widely accepted (Department of Health 1991) This review traces the historical development of parental involvement in paediatrics The literature reviewed shows that parental participation and living-in has been viewed largely as philosophically and professionally unproblematic These 'cardinal principles' of paediatric nursing have been advocated and operationalized with little or no attempt made to understand what living-in is like for either parents or for the nurses who work with them It is proposed that research approaches in this area are required which are more hermeneutic and dialogic     

A Dynamic Cycle of Familial Mental Illness

In this paper, we present A Dynamic Cycle of Familial Mental Illness; an innovative framework, which considers family members’ experiences and responses to mental illness. There is an acknowledged discourse noting parental experiences of mental illness alongside a growing body of knowledge acknowledging children's needs while living with parental mental illness. However, there is a paucity of literature that makes reference to the concept of familial mental illness and the cyclic interface of parental and child distress and symptoms. The model is supported by published research studies from several differing disciplines to demonstrate the relationship between parent and child experiences and to synthesise the published short- and longer-term possible impact of familial mental illness. An extensive search of the literature using recognised search engines, keywords and phrases has been undertaken, to generate an appropriate literature base for this work. This literature demonstrates how a child's possible emotional distancing as a response to parental mental illness could increase parental distress. A Dynamic Cycle of Familial Mental Illness adopts the underpinning philosophy of a Stress Vulnerability Model of Mental Illness, which assumes that predisposing factors and increased stress for a parent may have possible links to exacerbation of parental mental distress and symptomology. We advocate for further research of familial mental illness, and argue for a family approach to mental health assessment and treatment in mainstream health and social care sectors.     

Mental health reforms and their impact on consumer and carer participation: a perspective from Victoria, Australia

Victoria, Australia has experienced significant changes in the structure and delivery of mental health services over the past three decades. As a result of these changes, there is now an expectation that consumers of services and their carers have increased opportunities to participate in the design and delivery of services. There currently exists a paucity of research that examines the degree to which this goal has been realized in practice. This article presents findings from a qualitative research study investigating the perceptions of consumers and carers regarding the degree to which the contemporary service system allows for their increased participation. Data were collected through in-depth interviews with consumers and carers. The findings suggest that consumers have identified an increased scope for their participation, although this varies considerably from service to service. Carers on the other hand described very little opportunity for participation at any level. The responses of carers suggest there may be some inherent difficulty in facilitating increased participation for both groups. Strategies to support carer participation are urgently required if the goals of state and national mental health policy in Australia are to be realized.     

MENTAL HEALTH REFORMS AND THEIR IMPACT ON CONSUMER AND CARER PARTICIPATION: A PERSPECTIVE FROM VICTORIA,AUSTRALIA

Victoria, Australia has experienced significant changes in the structure and delivery of mental health services over the past three decades. As a result of these changes, there is now an expectation that consumers of services and their carers have increased opportunities to participate in the design and delivery of services. There currently exists a paucity of research that examines the degree to which this goal has been realized in practice. This article presents findings from a qualitative research study investigating the perceptions of consumers and carers regarding the degree to which the contemporary service system allows for their increased participation. Data were collected through in-depth interviews with consumers and carers. The findings suggest that consumers have identified an increased scope for their participation, although this varies considerably from service to service. Carers on the other hand described very little opportunity for participation at any level. The responses of carers suggest there may be some inherent difficulty in facilitating increased participation for both groups. Strategies to support carer participation are urgently required if the goals of state and national mental health policy in Australia are to be realized.     

Practical issues in obtaining child assent for research

This article describes ways to engage children in clinical research through a carefully planned assent process. When assent is handled well, children may gain a sense of control over their choice to participate in research, which may in turn enhance their cooperation in the process. Ways to engage children in the assent process, the historical development of consent and assent, and discussion of the issues surrounding parental consent and child assent are presented. Practical suggestions are provided to make research participation a positive and appealing process for children.     

Parental Consent and Adolescent Risk Behavior Research

Purpose: To identify methodological issues related to the use of active or passive parental consent in school-based research on adolescent risk behavior research and to propose recommendations consistent with current legal and ethical standards in the United States.
Methods: Review and synthesis of the professional literature related to adolescents and parental consent, federal regulations and guidelines in the United States, and the author's experience presenting these arguments and issues to institutional review boards and funding agencies for over 10 years.
Findings: The procedures used for parental consent affect a study's participation rates, costs, and selection bias. When active parental consent is required, parental permission is typically obtained for only 30%–60% of students, compared to 93%–100% when passive consent is used. Extensive follow-up may result in 55%–100% of parents giving permission, but at significant cost (typically $20–$25 per student). Active consent results in the exclusion of minorities, students having problems in school, and students already engaged in or at risk for problem behaviors. Strong methodological reasons were identified for using passive parental consent procedures when possible. Current federal regulations include four areas for possible waiver or alterations in parental consent procedures, including the use of passive parental consent.
Conclusions: Health researchers must understand the methodological, legal, and ethical issues related to parental consent to produce high-quality, valid research about adolescents and to provide evidence for laws, policies, and regulations.     

Genetic testing of children: confluence or collision between parents and professionals?

Nursing has been challenged to lead in all areas of knowledge development in genetics. In addition to participation in genetic counseling and research, the profession must be an advocate for the proper use of new clinical practices in genetic care. One of these areas is the largely unregulated practice of genetic testing of minor children. Psychological and bioethical concerns have been raised about testing children at parental request when no immediate benefit will result. Several professional bodies have urged the adoption of guidelines that would limit parental choice in the testing process. This article argues that little data exists to support the creation of strict regulations, and also notes that analysis of this issue through the use of alternative ethical theory can yield useful directions for nurses attempting to navigate this controversial topic.     

The Singing Unit – a pilot study investigating the efficacy of a music therapy singing intervention in a local neonatal unit to support parent/infant bonding and reduce parental anxiety

This mixed-methods pilot study involved the parents of premature infants in a neonatal unit. It explored the impact of parental participation in a singing workshop facilitated by an NICU trained music therapist. This was followed by encouragement to hum or sing with their babies while in the unit. The study showed that after the workshop and hospital stay, a statically significant increase in parental wellbeing occurred. The differences for a reduction in parental anxiety and improved parental bonding were not statistically significant, but may suggest trends for improvement in these areas. This low intensity cost-effective intervention then has demonstrated efficacy in the area of parental wellbeing.     

Soft values with hard impact – a review of stress reducing interventions on group and organisational level

Abstract

Objective: The aim of this study was to review stress reducing interventions on group and organisational levels in organisations and analyse the studies according to quality of design, results and employee participation and learning.

Methods: A literature review was carried out, with data search in the databases Current Contents, Embase, PsycINFO, Ovid MEDLINE^®.

Results: Nineteen interventions had a high quality design. An action research and participatory research design was the best design to reduce work related stress on group and organisational levels. The studies with the most effective results were based on a contract with the organisation, had supportive supervisors and managers and an individual and organisational stressor reduction process. They also identified work constraints and implemented an action plan using problem-based learning. There were six studies which met the criteria for the highest level of participation, which is official participation in problem solving and development activities. There were four studies which met the criteria for the highest level of learning, creative learning.

Discussion: Researchers working with stress reducing interventions on group and organisational levels need to recommend high-quality design on each level. A successful group and organisational intervention needs to have a strategy that guarantees top management's commitment and methods that create effective participation, individual and organisational learning, social support, and empowerment of employees.     

Children's adjustment to parental cancer: a theoretical model development

There is growing empirical evidence that various child and family factors are associated with children's reactions to parental cancer. Children having parents with cancer may respond to parental cancer in different ways in terms of bonadjustment and maladjustment. Children's maladjustment to this pervasive stressor is manifested by a wide variety of physiologic, psychologic, and behavioral stress responses. To date, research on children's adjustment to parental cancer has focused almost exclusively on documenting children's adjustment problems and on describing simple, direct association between the characteristics of children and/or their families, and children's adjustment. The gap in research and clinical practice lies in the lack of a comprehensive model to illuminate children's coping with parental cancer and to guide intervention programs. Based on a synthesis of the literature, this article proposes a model that specifies the relationships among the stressor of having a parent with cancer, moderators and mediator variables, and adjustment. This model can serve as a basis for future research and intervention programs.     

Safety: when infants and parents are research subjects

Patient safety is a central concern in nursing. Unlike other areas of patient safety, safety in research is particularly important because research is not part of standard care and participation is voluntary. Issues related to safety in research are especially pertinent to high-risk infants, because of the nature of parental (or legal guardian) consent and because children are considered a vulnerable group requiring special protection from research risks. Nurses must be aware of safety in research whether independently conducting research, employed by a research project, or caring for patients who are research subjects. This article reviews safety issues and policies, processes, and ethical guidelines designed to protect infants and children who are research subjects.     

Evaluating the quality of information about alternatives to research participation in oncology consent forms

A careful consideration of the alternatives to research participation is an essential element of making an informed choice to enroll in a biomedical research study. While there is general agreement on the importance of informing prospective subjects about alternatives to research participation, little is known about how investigators communicate this information. The purpose of this study was to attempt to assess the quality of information about alternatives contained in informed consent documents in oncology randomized controlled trials. Our study indicates that there is room for improvement concerning the discussion of alternatives to research participation in informed consent documents in oncology randomized controlled trials. Though most of the documents in our study met the minimal disclosure standard found in the U.S. federal regulations, less than a third met the reasonable person standard, a widely accepted principle endorsed by the common law and various ethics guidelines and documents. There was a statistically significant difference between the alternative discussions in local and model forms (P < 0.0014). The alternatives discussions in local informed consent documents were more likely to receive higher scores than those in model consent documents, with an odds-ratio of 3.5 to 1.     

家长参与护理对小儿内科患者治疗依从性和睡眠质量的影响分析

目的:研究家长参与护理对小儿内科患者治疗依从性和睡眠质量的影响.方法:选取2018年1 月至2019年1 月厦门市妇幼保健院儿内科一区收治的小儿内科患者60例作为研究对象,随机分为观察组和对照组,每组30例,对照组给予常规护理,观察组在常规护理的基础上加入家长参与辅助护理,比较2组患儿不同护理模式下治疗依从性与睡眠质量的变化情况.结果:观察组患儿与对照组患儿在住院过程中对诊疗的配合度分别为96.67%,80.00%;观察组患儿与对照组患儿护理后睡眠质量评分分别为(5.25 ±0.28)分,(8.55 ±0.76)分;2组患儿的依从性与护理后睡眠质量评分比较,差异有统计学意义(P<0.05).结论:家长参与护理作为常规护理的辅助手段能够帮助小儿内科患者治疗依从性的提高及睡眠质量的改善,值得借鉴推广.     

Parents who catastrophize about their child's pain prioritize attempts to control pain

How parents respond to their child in pain is critically important to how both parent and child attempt to cope with pain. We examined the influence of parental catastrophic thinking about child pain on their prioritization for pain control. Using a vignette methodology, parents reported, in response to different pain scenarios, on their imagined motivation for 2 competing goals: to control their child's pain (ie, pain control) or to encourage their child's participation in daily activities (ie, activity engagement). The effects of parent gender, pain intensity, and duration on parental goal priority were also explored. Findings indicated that higher levels of parental catastrophic thoughts were associated with the parents prioritizing child pain control over activity engagement. This effect was significantly moderated by pain duration. Specifically, pain control was more of a priority for those high in catastrophic thinking when the pain was more acute. In contrast, parental catastrophic thoughts had no effect on the pain control strategy favored by parents in situations with longer-lasting pain. Furthermore, independently of parental catastrophic thoughts, heightened priority for pain control was observed in highly intense and chronic pain situations. Moreover, in highly intense pain, priority for pain control was stronger for mothers compared with fathers. Theoretical and clinical implications and directions for future research are discussed.     

Children and young people's participation in healthcare consultations in the emergency department

Approximately 4 million children attend emergency departments (ED) in England, United Kingdom, per annum. It is important for children and young people to have an active say in their assessment and treatment during each emergency care episode. However the reality of hearing the child or young person's voice within active participation in health care consultations remains low at approximately 6% of voices recorded. In the context of policy drivers and patient benefits, there is a need to increase the level of participation by children and young people within the emergency care environment. However, noise, child and parental anxiety and distress, professional time pressure, and severity of child illness or injury add to the inherent complexity of triadic communication (parent, child, healthcare professional) in the ED. Research examining child participation in decision-making in ED is sparse and guidance for all parties is limited. Therefore methods drawn from the wider literature on child participation are discussed which may be implemented, validated and evaluated with an ED context.     

Adolescent development and family functioning in youth with spina bifida

The purpose of this article is to review research concerning adolescent development and family functioning among youth with spina bifida myelomeningocele (SBM). Adolescence is a developmental period characterized by substantial changes in biological, psychological, and social functioning, as well as transformation and reorganization within the family system. A biopsychosocial-contextual model of development was utilized to describe the interface between normative adolescent development and the experience of a chronic health condition among youth with SBM. Major empirical findings relevant to family functioning in adolescents with SBM are presented, including the family environment, parenting behaviors, and marital and parental functioning. There is variability with regards to the influence of SBM on the family system and research identifies both disruption and resilience in families. Current research suggests that families of youth with SBM may have higher levels of family stress, difficulties with family roles, lower levels of cohesion, less adaptive parental control and overprotection, and a greater risk for child and parental psychosocial adjustment difficulties. The review concludes with a discussion of the clinical implications of these findings for the care of youth with SBM and directions for future research.     

Demystifying research and evidence-based practice for consumers and carers: development and evaluation of an educational package

Increasingly, consumers and carers are involving themselves in many aspects and levels of mental health services. However, one area in which active involvement has been less prominent is research. This paper describes an educational initiative that sought to increase consumers' and carers' understanding of the way research is conducted and its role in evidence-based practice. Information regarding participants' attitudes towards research, knowledge about research practice and participation was also examined. The findings provide evidence that workshop attendance increases knowledge and encourages participation in future research projects, particularly when participants have confidence in the researcher.