Parents' support and satisfaction with their child's postoperative care

It is recognized that parents' presence during their child's hospitalization is of benefit to the parents and the child. However, the level of parental involvement in their child's care may be influenced by many factors, such as the amount of support nurses provide for parents. This article reports on two themes from the findings of a larger study on parental involvement in children's postoperative pain management - parental support and parents' satisfaction with their child's postoperative pain management. The aim of the larger study was to explore both nurses' and parents' perceptions of parental involvement in their child's postoperative pain management. The methods used were both qualitative and quantitative. The qualitative method of phenomenology was used to guide 20 nurse and 20 parent interviews. Quantitative methods involved surveying the nurses and parents on their perceptions of how supportive the nurses were towards the parents. The charts of 20 children were reviewed for pain-related data. This article reports on the issues of parent support from the results of the survey, and on satisfaction relating to their child's postoperative pain management from the parent interviews. The findings demonstrated that nurses perceived that parents were receiving more support from them than that which parents felt they were receiving. Parents were more satisfied with their child's pain management and children received more analgesia when they were cared for by a lower grade nurse.     

Evaluating a family-centred intervention for infant sleep problems

AIM: This paper reports a study to describe changes in parents' distress after a family-centred intervention for sleep problems of infants. BACKGROUND: Infant sleep problems are common and are related to depressive symptoms in mothers, but their impact on fathers has rarely been studied. Because childhood sleep problems and parental distress are associated, their interdependence should be recognized in research and in paediatric sleep practice. METHODS: All children hospitalized for sleep problems in a hospital in Iceland in 1997-1998 and their parents were studied using a pre- and post-test quasi-experimental design. The sample consisted of 33 infants (6-23 months of age), 33 mothers and 30 fathers. Parents' distress was assessed before and after treatment with regard to: (1) fatigue and resulting symptom distress; (2) parenting stress; (3) state-anxiety; and (4) depressive symptoms. Infants were treated for a variety of sleep problems by a paediatric nurse. The parents were simultaneously treated for distress by either the paediatric nurse or a specialist, depending on the nature of their problems. RESULTS: Mothers and fathers experienced a high degree of distress before the intervention, with no significant difference between them. Two months after the intervention both parents' distress had significantly improved. Parents' degree of distress was at a psychopathological level before the intervention but was reduced to population norms 2 months after the intervention. The paediatric nurse intervention was sufficient to reduce distress for 83% of parents. CONCLUSIONS: Health care professionals who care for infants with sleep problems should pay attention to the distressed responses of parents and support their recovery. An intervention such as that described here could be used by nurses for this purpose.     

Experiences of parents providing kangaroo care to a premature infant: A qualitative systematic review

Parents who give birth to an unexpected preterm infant not only suffer a psychological impact, but, in addition, their roles as parent are full of uncertainty. As part of family‐centered care, kangaroo care is an important way to support premature infants and their family. This review synthesizes qualitative studies on the experiences of parents who have used kangaroo care for preterm infants in neonatal intensive care units. English and Chinese databases were searched for relevant studies from 1970 to July 2018. The findings of qualitative studies were extracted and pooled using the Joanna Briggs Institute Qualitative Assessment and Review Instrument. A total of 731 studies were screened, and 9 were included. Five synthesized findings were identified: sense of emptiness of the parent's role, barriers in the translation of parental roles in kangaroo care, preparation enhances parental role expectations, kangaroo care enhances parental competency, and encouragement and support from family and friends. Through the implementation of kangaroo care, nurses are able to help prepare and guide parents, fit parents’ needs, and help improve their ability and self‐confidence in their parental roles.     

Challenging the philosophy of partnership with parents: a grounded theory study

BACKGROUND: Parent participation is viewed as a pivotal concept to the provision of high quality nursing care for children and their families. Since the 1990's, the term 'partnership with parents' has increasingly been reported in the literature and adopted as a philosophy of care in most paediatric units in the United Kingdom. OBJECTIVES: To explore children's, parents', and nurses' views on participation in care in the healthcare setting. DESIGN: Using grounded theory, data were collected through in-depth interviews, and participant observation. Sample consisted of eleven children, ten parents and twelve nurses from four paediatric wards in two hospitals in England. RESULTS: Most nurses assumed that parents would participate in care and viewed their role as facilitators rather than 'doers'. Nurses reported that the ideology of partnership with parents did not accurately reflect or describe their relationships with parents. Parents could never be partners in care as control of the boundaries of care rested with the nurses. Parents felt compelled to be there and to be responsible for their children's welfare in hospital. CONCLUSIONS: The pendulum of parent participation has swung from excluding parents in the past to making parents feel total responsibility for their child in hospital. It is argued that the current models or theories on parent participation/partnership are inappropriate or inadequate because they do not address important elements of children's, parents' and nurses' experiences in hospital.     

A life enriching togetherness--meanings of informal support when being a parent of a child with disability

The majority of children affected by disability are cared for at home by their parents. It is well documented in research literature that the parents are in need of professional support. In the striving to improve the professional caring, it is also important to deepen our understanding about the meaning of informal support from the perspective of parents' life world. The aim of this study was to illuminate the meanings of lived experience of informal support, when being a parent of a child affected by disability. Thirteen parents, eight mothers and five fathers within eight families, participated in narrative interviews, which were analysed by using a phenomenological-hermeneutic method. The meanings resulted in three themes: 'being gratified by experiences of the child as having a natural place in relation with others', 'being provided a room for sorrow and joy' and 'being enabled to live an eased and spontaneous daily life'. These themes emanated from the experiences of other persons' being and doing in relation to the parents, the child affected by disability and the siblings. According to our interpretation, informal support means a life enriching togetherness, the core of which is natural human caring. The findings also showed that parents highly valued professional support concerning informal supporters.     

Parent or nurse? The experience of being the parent of a technology‐dependent child

AIMS: This paper reports a study exploring parents' experiences of caring for a child who is dependent on medical technology, and in particular of performing clinical procedures on their own children. BACKGROUND: A group of children with a continuing need for the support of medical technology have emerged in community settings as a result of medical advances and government policies. Caring for these children has a significant social and emotional impact on parents, because of their specialized and intensive care needs. Obtaining appropriate and coordinated home support services is problematic. METHODS: Grounded theory techniques were used, and in-depth interviews were conducted with the parents of 24 children. FINDINGS: Parents' accounts revealed that their constructions of parenting were shaped by the nature of their role in caring for their child and by the transformation of their homes by medical equipment and personnel. They described themselves as having a role that had both parenting and nursing dimensions. Parents managed this tension and defined their role and relationship to their child to be primarily one of parenting by differentiating parental care-giving and its underpinning knowledge from that of professionals, particularly nurses. CONCLUSIONS: Parenting a technology-dependent child alters the meaning of parenting. Professionals need to recognize that providing care has a substantial emotional dimension for parents, and that they need opportunities to discuss their feelings about caregiving and what it means for their parenting identity and their relationship with their child. A key professional nursing role will be giving emotional support and supporting parents' coping strategies. Parents' perceptions of nurses raise questions about whether nurses' caregiving is individualized to the needs of the child and family, and whether parental expertise is recognized.     

Do nurses working in adult psychiatry take into consideration the support network of families affected by parental mental disorder?

The aim of this study was to gain information about registered and practical mental health nurses' activities concerning support network of families affected by parental mental illness. Data were collected using a structured questionnaire distributed to all 608 practical and registered mental health nurses working in adult psychiatric units in five Finnish university hospitals. A total of 311 nurses returned completed questionnaires (response rate 51%). Sixty per cent (n = 222) of registered nurses and 36% (n = 88) of practical mental health nurses responded. Information about family relationships and socio-economic situation was gathered regularly by all nurses. The nurses' individual characteristics, such as being a parent, further family education and use of family-centred care, were significantly related to their activeness in discussing the family's support network with the parents. Discussing family relationships and families support networks forms part of patient care in adult psychiatric nursing with families with dependent children (under 18 years of age). Nurses can work directly with the parents to aid them to strengthen their support network for themselves and their children.     

Nurses' beliefs about family involvement in a children's hospital.

Children's hospitals throughout North America have implemented many changes during the past 15 years. In recognition of the central role of parents in the lives of their children, policies and procedures have been implemented to enable parents to participate in various aspects of their children's care. However, the extent to which attitudes of nurses have changed to support a more active parental role is less evident. In a project to formulate a philosophy of nursing for a children's hospital, 22 nurses were asked a wide range of questions about nursing and family-centered care. Although all nurses expressed explicit support for the concept of family-centered care, some of their practices and beliefs suggested otherwise. This article describes their responses and suggests recommendations for future research, education, and nursing practice.     

Parent-nurse interactions: care of hospitalized children

BACKGROUND: An essential component of quality nursing care is nurses' ability to work with parents in the hospital care of their children. However, changes in the health care environment have presented nurses with many new challenges, including meeting family-centred care expectations. AIM OF THE PAPER: To report a research study examining the experiences of parents who interacted with nurses in a hospital setting regarding the care of their children. METHODS: A qualitative approach was employed for this study. In-depth audiotaped interviews were conducted with eight parents representing seven families. Data collection was completed over a 7-month period in 2001. FINDINGS: Parents characterized their experiences with nurses caring for their children as interactions, and identified the elements of establishing rapport and sharing children's care as key to a positive perception of the interactions. These elements were influenced by parental expectations of nurses. Changes in nurses' approach were reported by parents as the children's conditions changed. CONCLUSION: Nurses were able to work with families in the hospital care of their children in ways that parents perceived as positive. However, in parents' views, their interactions with nurses did not constitute collaborative relationships. A deeper understanding of these interactions may provoke new thinking about how to promote an agency's philosophy, and how nurses enact this philosophy in practice.     

Danish parents' experiences when their new born or critically ill small child is transferred to the PICU-a qualitative study

The aim of this study was to describe Danish parents' experiences when their newborn or small child was critically ill. Thirteen parents were interviewed. Data were analysed using qualitative content analysis. The child's transfer to the paediatric intensive care unit (PICU) meant either help or death for the parents. The back transfer was experienced as joy and despair. The parents had confidence in most nurses, and they were kind, helpful, informative and capable. Less capable and distressed nurses made the parents feel uncomfortable and insecure. Parents need help and support during their child's transfer to and from the PICU. Critical care nurses have to discuss the policy of family-centred care.     

Comparing child-care values in Japan and China among parents with infants

The purpose of this project was to identify parental child-care values in Japan and China. Participants were 667 parents (432 Japanese and 235 Chinese) of newborn babies. A questionnaire, the Child-care Value Scale, was used to collect the data. Japanese parents' mean scores were significantly higher (indicating more agreement) for parental responsibilities listed in the subscale 'Views about parental role' than those for Chinese parents. The mean scores for 'Negative impressions of child-care' and 'Need for support from others in the parents' environment' subscales for Japanese fathers were significantly lower than for Chinese fathers. Japanese parents believed that mothers were responsible for taking care of their children. This was an obstacle to getting support from people outside the family. Chinese couples believed that parents should share housekeeping and child-care, and obtained public and private support from their community. Findings suggest that parents of infants need community and health-care support.     

The experience of stress in parents of children hospitalized with long-term disabilities

This paper discusses parents' perceptions of their stress when their children are hospitalized with long-term disabilities. The study used a qualitative method. Data were collected with 40 parents through in-hospital interviews, and were analysed using the method of constant, comparative analysis. Parents' own interpretation of their stress experience is considered in relation to their perception of their role. The data suggest that the hospitalization of a child requires parents to make changes in their usual parenting role. In describing the nature of the changes required, parents identified the need to understand the illness experience; become familiar with the hospital environment; adapt to their changing relationship with the child and other family members; and negotiate with health professionals about their child's care. Verbatim accounts are used in this paper to illustrate parents' interpretations of their hospital experience. Parents perceive their role in their hospitalized child's care differently than health professionals do, and it would appear that much parental stress is attributable to the 'space' between health care workers' understanding of parents' experience, and parents' own comprehension. If nurses understood parents' own perception of their hospital-related stress better, more effective nursing care could be developed. Further research is needed in this important area.     

Parents' perceptions of care-giving to a child with attention deficit hyperactivity disorder: an exploratory study

Attention deficit hyperactivity disorder (ADHD) is the most common neurobehavioral childhood disorder in which parental care-giving is found very stressful. Limited qualitative research is found on their care-giving experiences. This study aimed to explore Chinese parents' experiences of care-giving to a child with ADHD at home. It was conducted at one Child and Adolescent Mental Health Unit in Hong Kong using qualitative exploratory approach. A purposive sample of 12 parents was recruited. Semi-structured interviews were conducted, each lasting about one hour. Content analysis was used to analyze the data. From the interview data, four themes were identified, including: concept of the illness, barriers to child care in ADHD, psychological effects in care-giving, and positive aspects of care-giving. The parents indicated a variety of life problems and health concerns in care-giving. The findings may help nurses understand the perceptions and barriers towards parental care of a child with ADHD in a Chinese population and consider parents' educational needs in care-giving.     

Parents' experiences of collaboration with community healthcare professionals

Over the last decades there has been a reduction in the number of institutional beds in psychiatric care in Norway. This has led to more psychiatric patients being dependent on community care and consequently an increased need for collaboration with the parents of these patients. In most cases parents are an important source of support in helping patients manage their everyday life. The aim of this study was to explore how parents of adult psychiatric patients experience collaboration with health professionals in the community healthcare services. The data collection in this study is based on 12 interviews with six parents, and a qualitative analysis method was employed. Four themes emerged: (1) communication and relationship between parents and health professionals; (2) lack of information; (3) parents' participation in the treatment of their son or daughter; and (4) the need for guidance and support. It was reported that health professionals are suspicious of parental involvement and often refuse to allow them to participate in the care. Further research on parents' experiences of collaboration is necessary. The value of parents as an important source of support can be enhanced by means of increased collaboration.     

An examination of the needs of parents of hospitalized children: comparing parents' and staff's perceptions

The needs of parents of hospitalized children have received some attention in the health literature, but few studies have compared parents' perceptions of needs with staff's ideas about parents' needs. The aim of this study was to examine differences between the perceptions of the needs of parents of hospitalized children held by staff - nurses, doctors and allied health staff, and parents in a 150-bed paediatric hospital in Sweden. The convenience sample comprised 132 staff - nurses, doctors and allied health staff and 115 parents of children admitted to all the wards except intensive care. Kristjánsdóttir's "needs of parents of hospitalized children" questionnaire (NPQ) was the instrument of choice and was modified slightly for use with staff. Results indicated significant differences in perceptions of the importance of different needs of parents, of how well they were being met in the hospital and how much help the parents needed to have them filled. Differences between parents' and staff's perceptions of the importance of parental needs were found in areas relating to psychosocial needs, but in general, in that hospital, the needs were being adequately met. The main differences between staff's and parents' results were in the degree of independence shown by parents in requiring help to have their needs met. This demonstrates either that parents are much more independent than appraised by staff, or, that parents are sometimes unaware of the level of assistance available.     

Negotiating lay and professional roles in the care of children with complex health care needs

BACKGROUND: Children with complex health care needs are now being cared for at home as a result of medical advances and government policies emphasizing community-based care. The parents of these children are involved in providing care of a highly technical and intensive nature that in the past would have been the domain of professionals (particularly nurses). AIMS OF THE PAPER: To assess how the transfer of responsibility from professionals to parents was negotiated, the tensions and contradictions that can ensue, and the implications for professional nursing roles and relationships with parents. DESIGN: Using a Grounded Theory methodology, in-depth interviews were conducted with 23 mothers, 10 fathers and 44 professionals to gain insight into the experience of caring for children and supporting families in the community. FINDINGS: From the parents' perspective, their initial assumption of responsibility for the care of their child was not subject to negotiation with professionals. Prior to discharge, parents' feelings of obligations, their strong desire for their child to come home, and the absence of alternatives to parental care in the community, were the key motivating factors in their acceptance of responsibility for care-giving from professionals. The professionals participating in the study had concerns over whether this group of parents was given a choice in accepting responsibility and the degree of choice they could exercise in the face of professional power. However, it was following the initial discharge, as parents gained experience in caring for their child and in interacting with professionals, that role negotiation appeared to occur. CONCLUSION: This study supports other research that has found that professionals' expectations of parental involvement in the care of sick children role can act as a barrier to negotiation of roles. In this study, parental choice was also constrained initially by parents' feelings of obligation and by the lack of community services. Nurses are ideally placed to play the central role not only in ensuring that role negotiation and discussion actually occurs in practice, but also by asserting the need for appropriate community support services for families. Being on home territory, and in possession of expertise in care-giving and in managing encounters with professionals, provided parents with a sense of control with which to enter negotiations with professionals. It is important that changes in the balance of power does not lead to the development of parent-professional relationships that are characterized by conflict rather than partnership.     

Kangaroo holding beyond the NICU

The primary goal for maternal-child nurses in caring for parents and their infants is to support parental confidence and competence through education and services to assure optimal parental-infant attachment. Kangaroo holding in the hospital and home environment is one intervention that encourages parental-infant interaction as well as provides the benefits of closeness, proximity, and touch. Nurses in hospitals, private practice, the community, and beyond must work together to change practice by adding the intervention of kangaroo care for the benefit of infants and their families.     

家长对"以家庭为中心护理"的认识

目的探讨家长对护理人员提供"以家庭为中心护理"的认识.方法目的抽样选择180例住院患儿的家长,采用美国波士顿儿童医院的"以家庭为中心护理"量表,在患儿出院前1天对其家长进行一对一调查.结果护士提供"以家庭为中心护理"的一致性与家长认为的重要性之间的平均匹配系数为0.59,范围在0.29～0.88.结论我院护士提供的以家庭为中心的护理措施,能满足家长和孩子生理上的需求及孩子和家长在一起的需求,能让孩子感觉受到很好的照顾.在关注孩子及家庭的心理、行为,为家长提供信息和心理支持,以及鼓励家长参与性方面与美国波士顿儿童医院的现况存在一定距离.     

家长的依从性对肾病综合征患儿康复的影响

[目的 ]探讨肾病综合征 (NS)患儿家长依从性对患儿康复的影响 ,并寻找护理对策 ,达到促进患儿康复的目的。 [方法 ]对 10 8例肾病综合征患儿及家长在入院后随机分为研究组和对照组 ,每组各 5 4例 ,给予研究组家长综合性护理干预 ,对照组则给予常规护理 ,比较两组家长的依从性及其患儿平均住院日、治疗效果及并发症。[结果 ]研究组家长的依从性评分高于对照组 (P <0 .0 1) ,且研究组患儿平均住院日缩短 ,治疗有效率高 ,并发症较少。 [结论 ]提高NS患儿家长的依从性 ,可促进NS患儿的康复。护理工作中 ,在重视患儿护理的同时 ,还应重视对其家长的指导     

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.