The many roles of family members in "family-centered care"--part II. Interview by Deborah Dokken

This article highlights the role parents can play as advocates for their own children. A mother who is interviewed describes a nurse's support in helping her claim her baby as her own in the midst of the NICU environment and how that claiming led her to become involved in his care and a strong advocate for his needs. She shares advice for parents and health care providers. A physician who is interviewed discusses working with this mother and other parents, and describes ways health care professionals can support parents as advocates.     

Caring for parents of hospitalized children: a hidden area of nursing work

Children are the recognized patients when admitted to hospital but their parents can also present demands for care by nurses. Involvement in care can be stressful for parents, particularly when children are required to undergo unpleasant procedures. Parents turn to their families for support in the first instance but some also look for care from nurses. Consequently parents can present a need for care of themselves to nurses whose primary patients are children. In this paper the experiences of a group of parents who became co-clients of nurses are considered along with the views of nurses working on the same ward. The discussion arises out of a larger study of the experiences of the parents of children admitted to a surgical ward in a children's hospital. The principal purpose of the study was to examine parents' and nurses' perceptions of their participation in the care of hospitalized children. The work of caring for parents is found to be ad hoc and unpredictable. The implications of the study for practice and policy are considered.     

Symbolic interactionism: a framework for the care of parents of preterm infants

Because of stressors surrounding preterm birth, parents can be expected to have difficulty in early interactions with their preterm infants. Care givers who work with preterm infants and their parents can positively affect the early parental experiences of these mothers and fathers. If care givers are consciously guided by a conceptual model, therapeutic care for distressed parents is more likely to be provided. A logical framework, such as symbolic interactionism, helps care givers to proceed systematically in assessing parental behaviors, in intervening appropriately, and in evaluating both the process and outcome of the care. Selected aspects of the symbolic interaction model are described in this article and applied to the care of parents of preterm infants.     

Les bénévoles ont-ils une place dans un service de réanimation ?

Volunteers have been taking an active part in our paediatric intensive care unit for six years. Their main objective is the support of parents. The guidelines that govern their working practice are set out in an agreement between the hospital and the volunteers association to which they belong. Volunteers have a fundamental role in listening to the parents; this is facilitated by their availability and the fact they are not a part of the medical system. A paediatric intensive care environment is frightening and hostile, and volunteers can help to make it less so. They also give information about the support available and refer parents to social workers or psychologists if appropriate. Their presence can also help to prevent and reduce tensions between parents and care-givers, and keep the mood positive. Initially it can be difficult for care givers to accept volunteers; in later stages, the major problems are: 1) coping with the death of a child 2) and maintaining the balance between the confidentiality of the information given by parents and care givers need to know. Both of these explain the need for high quality training and supervision. Prior to the introduction of volunteers to a paediatric intensive care unit, interdisciplinary consultation on how best to welcome and support parents is essential.     

Listening to the parent voice to inform person-centred neonatal care

Family integrated care (FIC), where parents are an integral part of their baby's care and decision-making can enhance parental involvement and empowerment, contributing to decreased parental separation and stress. It follows that parents can also be a central part of neonatal education for staff in the neonatal speciality. This paper focuses on what students and staff can learn from parents about what they feel is important to make their experience better. A narrative, interpretive approach was undertaken to collect and analyse parent interview narratives. A specific question was posed to a purposive sample of parents who have had premature babies about what health professionals can learn from them. Thematic analysis revealed five key themes relating to the importance of: communicating; listening; empathising; acknowledging (the parent's role); realising (what matters to parents). These elements were incorporated into a framework named by the mnemonic, ‘CLEAR’. This highlights what parents want staff to be cognisant of when caring for them and their babies. Learning from the parents in our care enables a greater understanding of their experiences at difficult and challenging times. Having a deeper understanding of parents' experiences can contribute to enhanced empathic learning.     

Psychological care of children and family in the critical care setting

Admission to the critical care setting can be a traumatic experience for a child and his or her parents. Besides providing physical care, the nurses should assess the psychological and emotional responses of the children and their parents. By integrating the child's psychosocial development and the principles of family-centered care into critical care nursing, the impacts of emergency admission on hospitalized children and their families can be reduced in order to facilitate adaptation on the part of the families.     

A pediatric learning experience: respite care for families with children with special needs

Respite care provides temporary relief from the demands of constant caregiving for primary care givers. While better known in geriatrics, respite care can also promote family well-being and enhance the coping abilities of parents with children with special needs. The authors describe how a respite care service and a department of nursing collaborated to provide respite care to parents of children with special needs, thus providing a much needed service in the community as well as a unique clinical experience for nursing students.     

Parent-to-parent support: a critical component of health care services for families.

Families of children with chronic medical conditions or disabilities face many unique difficulties. It is often necessary for them to assimilate technical medical information and participate in important decisions regarding their children's care before they have had time to adjust to their children's condition. Health care providers are not always available to help parents learn how to function in their dramatically changed roles. To adjust to their new parenting roles and work through feelings of confusion, denial, anxiety, guilt, anger, and depression, parents of children with special health care needs need opportunities to fully vent feelings, and to experience the grieving processes in their own way and at their own pace, in a nonthreatening, nonjudgmental environment. An informal support network is a powerful tool for accomplishing these tasks, for teaching day-to-day coping skills, and for supporting the establishment of new value systems that incorporate families' unique needs. The literature on family support documents ways in which parents of children with special health care needs are particularly qualified to help each other. This article briefly describes the philosophy of parent-to-parent support, its unique contributions in the health care setting, and the ways that health care providers can assist in creating an environment in which parents and professionals can work together more effectively.     

新生儿护理门诊的建立与实施

目的 为满足新生儿延续性护理服务需要,建立并实施新生儿护理门诊。方法 制订新生儿护理门诊规范,选拔出诊护士,成立新生儿护理门诊,提供新生儿黄疸筛查和育儿指导,由护士、医生、患儿家长对新生儿护理门诊进行评价。结果 共选拔16名护士出诊,2017年3月—8月新生儿护理门诊共接诊2 543例次,其中新生儿黄疸患儿最多,为2 038例（80.14%）。出诊护士均认为新生儿门诊的设立提升了患儿家长对医院和护理工作的满意度,认为自己在出诊过程中提升了处理专科护理问题的能力;66.67%的医生认为护理门诊对患儿的诊治有帮助;80%的家长对护理门诊的总体评价为90~100分。结论 新生儿护理门诊的开设可有效识别病理性黄疸并解决家长的育儿问题,提升了新生儿专科护士的社会地位和作为临床护理专家的信心,得到了医生和家长的认可。     

Hospital care of children in four countries

BACKGROUND: While perceptions of parents and staff about care of hospitalized children have been explored in developed countries, little research has examined these in developing countries. Assumptions about family-centred care are often based on Western values, with little evidence of how cultural constructs affect care delivery in developing nations. AIM: This paper reports a study to provide evidence from which culturally-appropriate hospital care for children can be delivered. METHODS: Using a rigorously devised and trialed questionnaire, attitudes of staff and parents about the way children are cared for in children's hospitals in four countries were examined and subjected to a four way analysis: parents and staff within and between developed and developing countries. RESULTS: There were no questions where all parents and staff in both developed and developing country groups were in complete agreement. However, there was some indication that, while culture plays a major role in paediatric care delivery, basic concepts of family-centred care are similar. CONCLUSIONS: The findings are limited by the sampling strategy. Nevertheless, while differences were found between parents' and staff's expectations of the delivery of care to children in hospitals, similarities existed and the influence of culture cannot be ignored. Education programmes for staff and parents should reflect these influences to ensure the optimum delivery of family-centred care, regardless of where the hospital is situated.     

The nurse practitioner role in the NICU as perceived by parents

PURPOSE: The aim of this study was to understand and describe the nature of nurse practitioner care delivery in the newborn intensive care unit (NICU) as perceived by parents of critically ill neonates. DESIGN: This qualitative study used a phenomenologic approach to answer the research question: "What is the lived experience of parents whose babies were cared for by a nurse practitioner in the NICU? METHODS: Consistent with phenomenologic methods, eight parents were asked: "What was it like for you to have a nurse practitioner care for you and your baby?" Parents whose babies had within the last 8 months spent at least 2 weeks in the NICU and had been discharged to home were asked to participate by letter. Consent of interested parents was obtained and interviews were conducted in the parents' homes. All interviews were audiotaped and transcribed. RESULTS: In addition to being able to effectively manage the medical care of the complex neonate, nurse practitioners were consistently perceived as: "being positive and reassuring," "being present," "caring," "translating information," and "making parents feel at ease." IMPLICATIONS: Nurse practitioners working in the NICU can feel validated by the fact that they are clearly appreciated by parents. Inclusion of NPs in the NICU care team enhances the care provided to infants and their families.     

Involving parents in decisions to forego life-sustaining treatment for critically ill infants and children

A moral framework based on principles of beneficence and respect for persons requires shared decision-making. In the best interest of critically ill children, parents should be the primary decisionmakers in collaboration with health care professionals. When parents are unable to function in their proper role as surrogate, health care professionals must seek an alternative surrogate decisionmaker. A balanced partnership between parents and professionals can be supported by attention to the environmental stessors, enhanced communication, networks of support and institutional mechanisms for conflict resolution.     

The most important needs of parents of critically ill children: parents' perceptions.

Research studies have identified the needs of relatives when they have had an adult family member in the intensive care unit. However little similar work has been done within the paediatric setting. Therefore the aim of this study was to examine what parents considered to be their most important needs, when they have a child ill in the intensive care environment (PICU). A questionnaire was designed, and was distributed to parents of 30 children admitted into a PICU. The questionnaire identified needs items which may be important to parents of sick children. The parents were required to indicate how important each need was to them during the time of the child's stay in the PICU. Results obtained indicate that parents have a strong need for information and relief of anxieties that they may have about their child's condition. A conclusion reached in this study is that if the critical care staff can go some way to assess and meet the needs of parents of critically ill children, then these parents may be more able to become effective partners in care, which may have therapeutic effects upon the child's health recovery.     

家庭支持护理模式对NICU早产儿父母心理状况的影响

目的 探讨家庭支持护理模式对入住新生儿重症监护室(neonatal intensive care unit,NICU)的早产儿父母焦虑、抑郁情绪的影响。 方法 采用自身前后对照研究,选取我院NICU的192例早产儿及其父母,对其实施家庭支持护理模式。在早产儿父母参与家庭支持护理前和完成护理支持后的出院日采用焦虑自评量表(self-rating anxiety scale,SAS)和抑郁自评量表(self-rating depression scale,SDS)对其进行调查。 结果 接受家庭支持护理后,早产儿父母的焦虑、抑郁评分均低于实施家庭支持护理前(P<0.05)。 结论 家庭支持护理模式可以有效改善NICU早产儿父母的焦虑和抑郁心理状况,应将早产儿父母纳入NICU整体护理的关注范围。     

Parent involvement in children''s pain care: views of parents and nurses

AIM OF THE STUDY: This study investigated the views of parents and nurses about the involvement of parents in the management of their child's pain during the first 48 hours after surgery. BACKGROUND: Children's pain management has been found to be problematic and in need of improvement. Nurses are the key health care professionals with responsibility for managing children's pain. Parents can make important contributions to assessment and management of their child's pain. METHODS: Using a phenomenological approach, nurses and parents were interviewed about their perceptions of parent involvement in pain management. FINDINGS: The findings indicated that parental involvement in their child's pain management is superficial and limited in nature. Parents described a passive role in relation to their child's pain care and conveyed feelings of frustration. Only a minority of parents expressed satisfaction with their child's pain care. Nurses perceived that there was adequate involvement of parents and adequate pain management for children. CONCLUSIONS: These findings may be somewhat explained by differing views and a lack of effective communication between parents and nurses. There is a clear need for nurses to discuss parent involvement with parents and negotiate roles in relation to pain management.     

Nursing home placement of older parents: an exploration of adult children's role and responsibilities

Chinese societies like most others are experiencing social change that impacts on models of care for older parents. There is tension between social change and traditional values of filial piety. The eldest son and his wife are expected to care for aged parents but that can be a challenge in modern industrial societies. This paper reports on research undertaken in Taiwan to explore changing values for aged care. It aimed to investigate how the roles and responsibilities of adult children of nursing home residents are changing. It involved aged care facility residents, their families and professional carers.     

California healthy and ready to work transition health care guide: developmental guidelines for teaching health care self-care skills to children

This article presents developmental guidelines that can be used by parents and nurses for teaching children health care self-care skills. These guidelines are intended to provide a framework for instructing parents and nurses about the developmentally appropriate skills children can learn to become self sufficient in managing their own health care needs. The guidelines are based on the developmental frameworks of Piaget and Erikson and self-care models of Orem. Although general in scope, these guidelines can be individualized to the needs of each child.     

Chronic sorrow: parents' lived experience

The article compares the literature on chronic sorrow with the life experiences, memories, and opinions of two health care professionals who are the parents of a profoundly mentally retarded adult child. Both the literature and these parents' experiences confirm the lasting nature of chronic sorrow. A lifetime of ongoing losses experienced by these parents is compared with loss resulting from the death of a loved one. This sadness without end continues to be a force in the lives of these parents even though they no longer serve as caretakers for their child. The article recommends interventions that health care workers can use with parents of retarded children.     

Health care personnel's experiences of a bereavement follow-up intervention for grieving parents

The aim of this study is to investigate the experiences of health care personnel of a bereavement follow-up intervention for grieving parents and of the ways to develop it. The intervention included three components: a support package for grieving parents, peer supporters' and health care personnel's contact with parents. The sample included 29 health professionals. Data were collected via open-format questionnaires and telephone interviews from health care personnel. Content analysis was used as a means of data analysis. The support package for grieving parents was considered important and versatile. Health care personnel perceived the intervention and its viability as mostly good. Parents' willingness to receive support, health care personnel's good resources and organizational preconditions were important for the follow-up contact. The intervention clarified the policy related to supporting grieving parents. It was enabled by a good attitude, shift arrangements and co-worker support. However, the implementation was considered difficult because of scarce resources. Parental support engendered negative feelings in health care personnel and they desired systematic supervision to deal with these. Follow-up care of grieving parents is a demanding task. Continuous education about bereavement follow-up care and systematic supervision to health care personnel is needed. Family-focused care in supporting grieving families after leaving from hospital should be increased. Inter-organizational cooperation in supporting parents is important and feasible.