Helping mothers cope with a critically ill child: A pilot test of the COPE intervention

The purpose of this study was to pilot test the effects of a theoretically driven intervention program (COPE = Creating Opportunities for Parent Empowerment) on the coping outcomes of critically ill children and their mothers. Thirty mothers of 1- to 6-year-old children in a pediatric intensive care unit (PICU) were randomly assigned to receive COPE or a comparison program. Mothers who received the COPE program: (a) provided more support to their children during intrusive procedures; (b) provided more emotional support to their children; (c) reported less negative mood state and less parental stress related to their children's emotions and behaviors; and (d) reported fewer post-traumatic stress symptoms and less parental role change four weeks following hospitalization. Results indicate the need to educate parents regarding their children's responses as they recover from critical illness and how they can assist their children in coping with the stressful experience. © 1997 John Wiley & Sons, Inc. Res Nurs Health 20: 3–14, 1997     

危重症患儿父母对复苏陪伴的态度及其影响因素分析

目的探讨危重症患儿父母对复苏陪伴的态度及影响因素,旨在为改善患儿及家属在复苏过程的体验提供科学依据。方法采用横断面调查的方法,方便抽样选取郑州大学附属儿童医院2018年8月—2019年8月住院的危重症患儿父母为研究对象,采用一般资料调查表、家属版复苏陪伴利弊评估量表(FPDR-BRS)对危重症患儿父母对复苏陪伴的态度进行调查,并分析其影响因素。共发放问卷200份,回收有效问卷189份,有效回收率为94.5%。结果189名危重症患儿父母FPDR-BRS总分为(74.75±22.54)分;单因素分析显示,危重症患儿父母FPDR-BRS总分在与患儿的关系、父母职业、文化水平、有无复苏经历方面差异有统计学意义(P<0.05);多重线性回归分析显示,与患儿的关系、父母职业和文化水平是复苏陪伴态度的影响因素(P<0.05)。结论危重症患儿父母对复苏陪伴的认同度处于中等水平,与患儿的关系、父母职业和文化水平是影响复苏陪伴态度的因素,医护人员应根据复苏陪伴态度的影响因素制订针对性的干预措施以改善患儿及家属在复苏过程中的体验。     

The impact on families of respite care in a children's hospice program

With increasing trends towards home care of children with even the most complex conditions and care requirements, respite becomes critical in improving the quality of life for terminally ill children and their families. This article reports on the respite component of an evaluation project that examined the effect of the Canuck Place children's hospice program on the families it served during its first 30 months of operation. Canuck Place, located in Vancouver, British Columbia, Canada, is the first free-standing children's hospice in North America. Findings are derived from mail-out surveys to 144 families, face-to-face interviews with 18 families, and separate questionnaires specifically directed to parents who had used Canuck Place respite services. Sixty-five parents responded to the respite questions. They cited a wide range of benefits to the ill child, the child's siblings, and to the parents themselves; they also offered a few cautions. Our discussion focuses on three "lessons learned" from this unique investigation of respite within pediatric hospice care.     

An evidence-based protocol for sensory soothing in paediatric intensive care

In recent years, an increasing body of literature has highlighted the significant sequelae of a paediatric intensive care unit admission for children and their families. More innovative bedside approaches are needed to support children's coping and development and help minimize the use of sedatives, given their known deleterious effects. To support nursing staff in managing agitation in critically ill infants and children, a ‘Sensory Pyramid’ program was built in collaboration with occupational therapists, child life specialists and critical care nursing staff at an academic medical center in the United States. Anchored in evidence-based and developmentally appropriate non-pharmacologic sensory soothing techniques, the protocol outlines escalating comfort interventions nurses can employ that are safe and feasible for implementation by bedside staff and families.     

A collaborative project: initiating a family intervention program in a medical intensive care unit

Common needs of family members of critically ill patients were identified. Each member of the family may react differently to the stress caused by hospitalization of a loved one. Dealing with families in crisis requires the coordination of the health care team. A clinical nurse specialist can act as a coordinator and continue to integrate the efforts of the nursing staff to ensure a team approach in providing a structured yet individual way to deliver emotional support to families of the critically ill. The purpose, design, implementation, and evaluation of a family intervention program in an MICU as well as suggestions for its continuation were described. Evaluations of the program revealed positive responses by the majority of families participating in the program. Findings indicated that a structured and well-planned family intervention program can increase the staff nurse's knowledge and sensitivity to the needs of families who are in a crisis situation. Further research is necessary to identify needs of a family when they are faced with an acute illness of a family member and the required nursing interventions to assure the desired outcome of care. Replication and reporting of similar intervention programs, such as the family intervention program, would help nurses plan and implement appropriate interventions to support the family during critical illness of a family member.     

Face to Face With Sturge-Weber Syndrome

issues and purpose . Chronic illness is a way of life for parents of children with Sturge-Weber syndrome (SWS), a rare progressive congenital disease that has as its defining feature a port wine stain. This case study describes the experience of one family living with a child with SWS.
conclusions . This family's struggle with a devastating syndrome and the ways in which they coped and maintained hope inform all those who care for families living with a chronically ill, disabled child.
practice implications . Social support is critical for families facing overwhelming care needs. Families also need anticipatory guidance about child rearing, developmental milestones, decision making, and coping strategies. Additionally, families may need help in mobilizing professional and family resources and in effectively using available services.     

Intervention studies involving parents of hospitalized young children: an analysis of the past and future recommendations

Hospitalization imposes multiple stressors on young children and their parents that place them at risk for both short-term and long-term negative outcomes. As a result, numerous researchers have developed and tested interventions to enhance coping outcomes in this population. This article describes major sources of stress for hospitalized young children and their parents, outcomes of hospitalization, and major factors influencing adjustment. In addition, a critique of prior intervention studies and recommendations for future research are highlighted.     

Fostering coping by adolescents with newly diagnosed cancer

OBJECTIVES: To review a research program about adolescents' coping with life-threatening illness and nurses' role in fostering the adolescents' coping efforts. DATA SOURCES: Research studies, review articles, and book chapters. CONCLUSIONS: Adolescents who have cancer are at risk of negative health outcomes. Promoting positive coping during the developmental period of adolescence helps adolescents to assume greater responsibility for their health actions. IMPLICATIONS FOR NURSING PRACTICE: Certain behaviors initiated by health care providers on hopefulness in adolescents assists the ill adolescents in articulating their hopes and realising or redefining those hopes.     

Coping in parents of children who are chronically ill: strategies for assessment and intervention

Estimates indicate that approximately 31% of children are affected by one or more chronic illnesses. Furthermore, caring for a chronically ill child imposes a host of long-term stressors for parents that need to be addressed by sensitive, evidence-based interventions. This article will: (a) review stressors of childhood chronic illness for parents over time; (b) provide a summary of tools that can be used to assess parental coping, (c) delineate important nursing assessments, (d) review interventions that have resulted in improved parental coping outcomes, and (e) describe a theoretical framework that can be used to assess and intervene with parents of chronically ill children.     

The critical care literature 2017

An emergency physician (EP) is often the first health care provider to evaluate, resuscitate, and manage a critically ill patient. Between 2001 and 2009, the annual hours of critical care delivered in emergency departments (EDs) across the United States increased >200% [1]! This trend has persisted since then. In addition to seeing more critically ill patients, EPs are often tasked with providing critical care long beyond the initial resuscitation period. In fact, >33% of critically ill patients who are brought to an ED remain there for >6?h [1]. Longer ED boarding times for critically ill patients have been associated with a negative impact on inpatient morbidity and mortality [2]. During these crucial early hours of illness, detrimental pathophysiologic processes begin to take hold. It is during these early hours of illness where lives can be saved, or lost. Therefore, it is important for the EP to be knowledgeable about recent developments in critical care medicine. This review summarizes important articles published in 2017 pertaining to the resuscitation and care of select critically ill patients in the ED. We chose these articles based on our opinion of the importance of the study findings and their application to clinical care. The following topics are covered: sepsis, vasolidatory shock, cardiac arrest, post-cardiac arrest care, post-intubation sedation, and pulmonary embolism.     

A view from the other side

OBJECTIVE: The environment in our intensive care units (ICUs) often serves the convenience of the staff who work in the ICU, rather than the critically ill patients and their loved ones who are, as a family unit, the objects of our care. OBSERVATIONS: Critically ill patients, especially those with high acuity, require close bedside attention. Continuous monitoring, frequent physical evaluations, invasive procedures, and other demands of bedside care are just some of the processes in the ICU that require heightened attention from ICU clinicians. But the fact that we "have a lot to do" at the bedside of critically ill patients has led to an unfortunate environment in many ICUs, one in which the needs of families are not only considered secondary to the convenience of ICU personnel, but are frequently dismissed as burdensome, unreasonable, and even counter to good-quality patient care. Perhaps this is why there are reports in the literature of family concerns about less than satisfactory interactions with ICU clinicians. The attitude we have toward families is an important part of the care we offer to patients in the ICU, and it can have a profound effect on the health of our patients' families. In palliative care circles, it has long been understood that the "unit of care" is both the patient and the family. Although we are moving in that direction in critical care, many ICUs may not always reflect an appreciation of the therapeutic potential or devastating consequences of the attitudes in the ICU. CONCLUSION: The evolution of our understanding of care for critical illness should include a different approach to families and visiting hours in the ICU. One that balances the need of family members to be with their loved ones at a time of critical illness and the need of ICU clinicians to conduct efficient bedside care.     

The essence of the family critical illness experience and nurse-family meetings

Nursing care of families is essential to strong family support and maintenance of family health during a critical illness. Secondary data analysis of interviews conducted with 11 families with a family member in the intensive care unit revealed two essences: the family critical illness experience and the family vision for the kind of care families required and desired from nurses. The purpose of this article was to explicate the essence of these phenomena and their implications for family nursing practice. Findings affirm the need for a family intervention described in the literature, that of regularly scheduled nurse-family meetings. Although developed for work with families experiencing a chronic illness, bringing families together and inviting meaningful conversation about their experiences is appropriate for families experiencing critical illness. Nurse-family meetings acknowledge suffering and vulnerability of families when a loved one is critically ill and afford families an opportunity for honest sensitive communication with nurses.     

Parents’ experiences of a Family Support Program when a parent has incurable cancer

Aims and objectives. The Family Support Program was created to support children and parenting when one of the parents has incurable cancer. We chose a family‐based approach to support parent’s coping and to help families pull together, identify strengths in the family and learn how to seek help. Background. Cancer is usually a new experience for young families. In most cases, parents do not have the necessary knowledge about their children’s need for information and support about their parent’s serious illness and impending death. Design. A qualitative evaluation study based on data collected through in‐depth interviews focusing on parent’s experiences with the Family Support Program. Methods. Participants were patients with incurable cancer and their partners and ex‐partners with children aged between 5–18 years. Thirteen parents were in‐depth interviewed. Results. Parents described how the Family Support Program helped them gain greater insight into their children’s thoughts and reactions and into how the situation affected their daily living. Parents reported that conflicts were reduced, they could talk more openly about the situation in the family and that they were shown how to support their children’s coping. Conclusion. The Family Support Program met the parents in the study’s needs for more information and support about how to cope with their children during the patient’s terminal illness. Relevance to clinical practice. The Family Support Program is described in detail in a manual that makes it easy for other health workers to use the same programme. The Family Support program was in use in outpatient clinics, oncology wards and palliative care units and was provided both from nurses and social workers trained in cancer care. Parent’s in the study would like the Family Support Program to be available to all patients who receive the poor prognosis that their cancer cannot be cured.     

Admissions for critically ill children: where and why?

INTRODUCTION: Planning services for critically ill children requires identification of overall critical care activity as well as an assessment of population needs. METHOD AND OBJECTIVES: This prospective needs assessment took a census approach to estimating population-based admission rates for paediatric critical care irrespective of where care was provided. A survey form was completed for every child in the study population for all of their admissions. CRITERIA: The need for tracheal intubation was used as a proxy for defining need for intensive care in this study. Critical illness was defined by clinical criteria adapted from the Advanced Paediatric Life Support Guidelines. STUDY POPULATION: All children under 17 years resident in south-east England (Thames regions) who required care for a critical illness in any inpatient setting between 1 December 1996 and 30 November 1997. Critical illness was the presence of acute body-system or multi-system failure. RESULTS: A wide variation in the rates of critical care admission to different types of care settings was reported ranging from 1.2 admissions per 1000 resident children per year for PIC units (general and cardiothoracic units) to 0.02 admissions per 1000 children per year for children admitted from the community to neonatal units. The age of children and their rates of admission were directly related to the type of ward or unit where children received care. Tracheal intubation occurred in all care settings. The proportion of intubated children transferred to paediatric intensive care units (PICUs) or paediatric cardiothoracic intensive care units (PCICUs) varied according to the type of referring unit. The proportion of episodes involving tracheal intubation where the child was not transferred to a PICU or PCICU was 52% for children in stand-alone neurosurgical units, 41% for those in adult intensive care units (AICUs), and 4% for those in children's wards. CONCLUSIONS: This baseline study shows a significant number of critically ill children who are never cared for in PIC units. With national changes in UK policy to regionalise care for these children, monitoring care in all locations by cause of admission remains important. While the data were collected in 1997, the findings from this study remain relevant and provide the basis for planning regional critical care services for children. Results are also relevant to other geographical areas in that measuring the use of services for critically ill children must go beyond documenting admission to ICUs for children and adults. All settings for critical care must be identified, the activity documented, and the use of services measured against existing resources. Clear clinical criteria are needed to identify children who can be cared for appropriately on high dependency units.     

The developing role of children's nurses in community palliative care

This article addresses some of the contemporary issues in relation to providing palliative care for children in Ireland, particularly focusing on the creation of the specialist palliative care nursing outreach posts. The recent publication of an Irish national policy on palliative care for children with life-limiting illness is welcome news for paediatric nurses in Ireland. Children are valued members of society and have a right to receive quality health care and support appropriate to meet both children and the families' precise needs. However, community services for children with life-limiting illnesses remain inadequate, with many parents and families struggling to provide palliative care for children in the home. Currently, community nurses, who are not always registered children's nurses, are providing palliative care for children at the end of life. These nurses may not fully understand the specific needs of critically or chronically ill children and their families. In addition, there are no specific palliative care educational programmes in Ireland with regard to end-of-life care for children. The challenges of providing palliative care to children and their families in relation to symptom control, controversial ethical and legal issues, and emotional and practical support, mean that advanced knowledge is required in order to progress the agenda and thus provide excellence in children's palliative care in Ireland. It is important that the agenda is moved forward so that children and their families requiring palliative care and nursing support do not suffer from a lack of professional provision for their needs.     

基于结构方程模型的初诊癌症患儿父母情绪障碍影响因素的研究

[目的]探讨初诊癌症患儿父母情绪障碍的影响因素。[方法]采用一般资料调查表、恐惧疾病进展量表、父母应对方式量表、心理弹性量表,以心理弹性量表为基础构建结构方程模型,对191名初诊癌症患儿父母进行调查分析。[结果]结构方程模型拟合度良好,其中拟合优度指数(GFI)=0.931,比较拟合指数(CFI)=0.921,χ^2/df=65.587/25=2.623,渐进残差均方和平方根(RMSEA)=0.049(90%CI=0.40~0.59)。初诊癌症患儿父母情绪障碍的影响因素包括恐惧疾病进展(社会家庭维度)、应对方式、家庭收入、病人有无医保。其中,应对方式对情绪障碍的影响最大,直接效应为0.392,恐惧疾病进展、家庭收入、病人有无医保通过影响应对方式间接影响心理情绪,间接效应系数分别-0.147、0.065、0.600。[结论]初诊癌症患儿父母情绪障碍的影响因素是多维度的,应鼓励和引导父母采取积极的应对方式,加强与医护人员以及亲朋好友的沟通与交流,促进情绪的释放,保持良好乐观的态度,才能维持自身心理的健康状态,积极去照顾癌症患儿,同时利于患儿疾病的治疗与康复。     

Humanism in critical care: a blueprint for change

The critical care environment is often described as contrary to the humane treatment of critically ill patients and their families. To diminish the negative effects of the environment and critical illness, specific strategies to foster more humane care are needed to create an environment where healing and recovery are possible.     

Experiences of Asian American Parents in a Group Intervention for Youth With Schizophrenia

PROBLEM: Schizophrenia, which frequently strikes during adolescence or young adulthood, can have devastating effects on the family. Parents, who are primary caregivers for mentally ill adolescents, often lack the information and skills necessary to cope with the multiple and complex consequences of a major psychiatric disorder. Moreover, parents are ill‐ prepared to help their other children cope with the unpredictable changes that accompany having a mentally ill sibling. Asian American parents face similar issues in dealing with their schizophrenic adolescents. However, there is limited information available about this population. METHODS: The purpose of this qualitative study was to examine the experiences of four Asian American parents who participated in a community‐based, family‐centered, self‐management intervention program for youth with schizophrenia. Participants were interviewed using semistructured interviews and language interpreters. Data were analyzed utilizing content analysis. FINDINGS: Four themes were identified: (a) same, but different; (b) sharing and learning; (c) using skills learned; and (d) working with interpreters. CONCLUSIONS: Results indicate that Asian American parents valued their participation in the group intervention and emphasized their similarities with non‐Asian American families who have a mentally ill youth.