Effectiveness of a tool to improve role negotiation and communication between parents and nurses

Family-centred care philosophies are promoted by policy makers and nurse leaders, although how this ideal is put in practice often remains unclear. Checklists or guidelines may be useful tools to assist nurses in determining a parent's desire for involvement in their child's care. AIM: To evaluate the effectiveness of a documentary tool designed to formalise role negotiation and improve communication between parents and nurses. METHODS: A quasi-experimental pre/post-intervention study design was used to determine nurses' perceptions of the effectiveness of a documentary tool in facilitating nurse-parent discussion about parental desire for involvement in the daily care activities of their child while in hospital. Nurses in randomly selected wards were assigned to usual practice (control group) or the implementation of a Negotiated Care Tool (intervention group) during a three-month period. RESULTS: Pre- and post-intervention surveys were completed by 69 nurses. The tool was associated with attitudinal changes in the desired direction for 12 of the 24 nurse responses: nurses in the intervention group were significantly more likely to include parents in decision making (p = 0.007); encourage parents to ask questions during their child's hospital stay (p = 0.005); and invite extended family members to participate in care with parental permission (p = 0.03). CONCLUSION: The Negotiated Care Tool raised staff awareness of the importance of effective communication and negotiation of care with parents in busy clinical practice areas. Transparent communication and negotiation of roles between nurses and parents are integral to family-centred care provision.     

Parental experiences: care of children with high and intermediate imperforate anus

In this study parental experiences of care of children with high and intermediate imperforate anus were evaluated. A group of 45 parents of children with high and intermediate imperforate anus and two control groups participated. Data collection with individual questionnaires concerning the child's hospital care, information to the parent and the child, and involvement in the care of the child were performed. Parents of children with imperforate anus reported being less satisfied with the care of their child, and they were less content with information about their child's treatment compared with the control groups. The parents had been extremely involved in the follow-up treatment. Constipation and fecal incontinence are common and involve suffering for the children and their parents. Parents have to be motivated and supportive and have a great deal of patience to be able to put up with caring for these children, and it seems as if health care professionals have underestimated their problems.     

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.     

Hospitalized children with chronic illness: parental caregiving needs and valuing parental expertise

Parents who care for a child with a chronic illness are forced to relinquish much of the control of the child's care when the child is hospitalized. By using the family systems theory as the underlying framework, the amount of control that parents of children with chronic illness wanted over their hospitalized child's care, and the degree to which parents felt health care professionals valued their expertise, was examined in a national sample of 50 parent caregivers. Participation in information sharing and technical care were areas over which parents wanted the most control. Nurses and attending physicians were rated highest in valuing parental expertise. Content analysis of an open-ended question on parental control revealed that parents felt a higher quality care was given at home than in the hospital; nurses were too busy or understaffed to provide optimal care in the hospital; and the child's control of care and decision making should increase as the child grew older.     

Health professionals' beliefs related to parental involvement in ambulatory care: an international inquiry

Changes in health care delivery in Canada and Europe, especially the shift to ambulatory care, have modified the care that children and parents receive and have prompted the need for a partnership alliance. The objectives of this exploratory study were to identify Canadian and Belgian health professionals' beliefs and attitudes towards parental involvement in their child's ambulatory care and to determine if these beliefs varied according to cultural background. Health professionals from both countries generally were in favor of parental involvement in their child's care, but are uncertain about its advantages and disadvantages. Facilitators and barriers mentioned by the health care providers were related to parents' abilities or their attitudes toward partnership, and they also expressed a need for more education on the subject. Results of this study indicate that health professionals working in ambulatory care are not fully ready to utilize parents as true partners in their interventions with children and families. Staff education is an important step towards the establishment and maintenance of a real partnership.     

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.     

Family involvement: are we asking too much?

Family involvement has evolved with the child's parents and family now having a much greater presence at their child's hospital bedside. This has caused some problems due to children's nurses misunderstanding what family involvement is, and assuming that parents want to be involved in their child's care. Greater negotiation and recognition that each child and family is unique, with unique health and social care needs, will be required in future to ensure that families are offered family involvement at an appropriate level.     

A study of parental involvement in pediatric hospital care: implications for clinical practice

BACKGROUND: Although it has become common practice for parents to stay with their sick child in hospital, most hospitals lack routines and staff guidelines for involving parents in care processes and decisions. AIM: To gain a deeper understanding of factors that influence parental involvement and to clarify the parental role in the hospital care of chronically ill children. METHODS: Semistructured interviews with 14 parents of chronically ill children. RESULTS: Four themes were identified: support, professionalism, work environment, and responsibility. These themes describe the experience and perceptions of parents who regularly spend time in the hospital with their children. CONCLUSIONS: Clinical practices regarding parental involvement need to be established to optimize the hospital care of chronically ill children.     

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.     

Coping and social support of parents with a diabetic child

The purpose of this study is to describe and understand the parental coping and the social support received by the parents of diabetic children. The parental coping process was followed for a 4-week period after the diagnosis of diabetes. The parents of two girls, whose diabetes was diagnosed in early childhood, served as study subjects. Data were collected by interviewing and observing the parents over four separate periods. The data were analyzed by the time series and content analysis methods. Six phases of parental coping were identified: disbelief, lack of information and guilt, learning to care, normalization, uncertainty and reorganization. In the different phases of parental coping, the parents' experience of stress, coping strategies and sense of control varied. In the phase of disbelief, the parents tried to reject the child's diabetes by questioning the diagnosis. The initial information given to the parents regarding their child's diabetes proved to be important for parental coping. In the phase of lack of information and guilt, the parents sought reasons for their child's diabetes and felt guilty about it. As coping responses, the parents sought support from each other and from people who had experienced the same. In the learning to care phase, they recognized the demands caused by diabetes and took responsibility for the child's care. The parents appreciated supervision based on their problems. In the normalization phase, the parents prepared to return home with the diabetic child. Getting back to normal life was one of the most effective parental coping responses. In the uncertainty phase, the care to be given to the diabetic child changed the daily routines of the family. In the reorganization phase, the parents adapted to the diagnosis of diabetes and to the care of their diabetic child. The parents felt that the life of the family normalized and was able to be controlled.     

Nurses' moral agency in negotiating parental participation in care

The purpose of this study was to investigate the issues for nurses in facilitating parental participation in the care of the hospitalized child. A qualitative study informed by grounded theory was undertaken. Nine nurses were recruited from an acute, high-dependency, 23-bed paediatric cardiac/renal unit in Melbourne, Australia. Data collection involved individual semistructured interviews, hospital policies related to family-centred care and a focus group interview. Constant comparative analysis was undertaken to develop an understanding of the data collected in the context of the nurses' experiences and the environment in which they work. Moral agency was identified as the central phenomenon of the study. Causal conditions related to this included the child's best interests, disputes about care and nurses' expectations. These causal conditions were seen to potentially lead to moral distress for the nurses. The coping mechanisms and strategies that affected moral agency have been identified.     

Parent's involvement in decisions when their child is admitted to hospital with suspected shunt malfunction: study protocol

Title.  Parent's involvement in decisions when their child is admitted to hospital with suspected shunt malfunction: study protocol.
Aim.  This paper outlines the protocol for a study aimed at exploring parent's involvement during professional–parent interactions and decisions about their child's care in the context of suspected shunt malfunction.
Background.  Hydrocephalus is a long-term condition treated primarily by the insertion of a shunt that diverts fluid from the brain to another body compartment. Shunts frequently malfunction, and parents of children with shunted hydrocephalus are responsible for recognizing and responding to shunt complications. Parents feel that interactions with professionals when they seek healthcare advice for their child do always not encourage active participation in care decisions.
Methods.  The study design is based on qualitative methodologies: a combination of conversation analysis applied to consultation recordings of professional–parent interactions when a child is admitted to hospital with suspected shunt malfunction, and semi-structured follow-up interviews with the same participants within 2 weeks of the consultation.
Participants.  This is a prospective study and participants will be purposefully selected. Parents of children who have been admitted to hospital with suspected shunt malfunction and healthcare professionals responsible for the initial assessment of the child will be invited to participate.
Discussion.  The study will identify how decisions about a child's care are negotiated between parents and healthcare professionals at key stages of the care pathway. In addition, examining interactions between healthcare professionals and parents may identify approaches that support or hinder parents in contributing to the decision-making processes when they seek advice from healthcare professionals.     

Hospital staff perceptions of parental involvement in paediatric hospital care

AIM: This paper reports a study of hospital staff perceptions of parental involvement in children's hospital care. BACKGROUND: Previous research has shown that parents are expected and encouraged by hospital staff to be actively involved in the care of their hospitalized children. At the same time, parents have expressed a need for improved communication with paediatric hospital staff to clarify both parental and staff expectations and preferences about this involvement. Few studies, however, have studied hospital staff perceptions of parental involvement in the care of hospitalized children and their implications for clinical work. METHODS: A cross-sectional questionnaire study was conducted among paediatric hospital staff in October of 2003. Questionnaires were distributed to a total of 338 staff, including all physicians, Registered Nurses and nursing auxiliaries working on oncology, surgery and neurology units in three university children's hospitals in Sweden. RESULTS: A total of 207 questionnaires were returned, yielding a response rate of 61%. Exploratory and confirmatory factor analyses of the 26-item questionnaire resulted in the creation of two indices, Work Routines and Work Strain. Oncology staff reported having better work routines for involving parents in their children's care and they experienced less strain from parental demands compared with staff on other paediatric units. Staff perceptions and workplace routines regarding parental involvement did not differ statistically significantly by profession or by length of work experience. CONCLUSION: Staff perceptions of parental involvement may be related to clinical specialty. Oncology units may find it easier to establish routines for parental involvement, thereby experiencing less work strain in their interactions with parents. There is a need to further study staff perceptions of parental involvement and their implications for the staff work situation in both Sweden and other countries.     

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.     

A phenomenological exploration of the lived experience of mental health nurses who care for clients with enduring mental health problems who are parents

This paper is a report of a study to explore mental health nurses' lived experience of caring for adults with enduring mental health problems who are parents. With the advent of community care, more people with enduring mental health problems have contact with their families and are parents. Ultimately, rehabilitative strategies for parents with mental health problems are focused towards functioning effectively within their own family unit and hopefully enabling them to fulfil their parental role. Mental health nurses working with this client group have competing demands to reconcile. For example, advocating for client rights versus protecting the child and supporting the family. This phenomenological study took place within adult mental health services in the UK. Semi-structured interviews were conducted with six nurses. A thematic analysis was conducted on the data. Five themes were identified from the data: support, remaining impartial, addressing the specific needs of a client who is a parent, models of care and interagency communication. The findings suggest that neither a family-centred nor a person-centred approach to care completely meets the needs of this client group. An integrated model of care is proposed that applies person-centred and family-centred approaches in tandem.     

Mysteries and mazes: parents' experiences of children with developmental coordination disorder

BACKGROUND: Children with Developmental Coordination Disorder (DCD) represent 5 to 6% of the school-aged population and are often seen by occupational therapists in the school system. Although a family-centred approach has been identified as best practice in pediatric care, the perspective of parents is often overlooked both in research and in practice. PURPOSE AND METHOD: In this study, a qualitative, phenomenological approach was adopted to explore the insights and experiences of 13 parents of children with DCD. Each parent participated in two in-depth interviews and completed a set of questionnaires. RESULTS: Analysis of the study findings led to three primary themes that captured the experience of parents as they attempted to understand and get help for their child. The theme of unravelling the mystery highlights parents' impressions of their child's difficulties. The second theme of negotiating the maze refers to the many pathways followed by families as they sought to affirm their perceptions and obtain services for their child and the final theme of parenting dilemmas underscores some of the common challenges faced by parents in trying to deal with their child's limitations. PRACTICE IMPLICATIONS: For occupational therapists, the study findings illustrate the importance of focusing on occupational performance issues for children with DCD, facilitating the understanding of parents, and the need for early intervention.     

Nurses' perceptions of parental involvement in hospital care

Parental involvement is an essential element of quality of care for children in hospital. However, there is often confusion in role perception between parents and nurses which may be affected by nurses' attitudes, their ability to provide information, their communication and interpersonal skills and willingness to relinquish control. AIM: This study examined nurses' perceptions of parental involvement and communication with parents of children in hospital and explored differences in perceptions of recent graduate nurses and more experienced nurses. METHOD: Two focus groups were carried out at a university paediatric hospital in Sweden, one with experienced paediatric nurses (n = 7) and one with recent nursing graduates (n = 6). FINDINGS: Analysis of the discussions identified five themes: clarifying roles, information, work environment, support and clinical competence. These nurses confirmed the belief that involving parents in the child's care is an important part of nursing in paediatric care and suggested that the nurses should play the role of being the communicator with the parents. CONCLUSION: Nurses need to be aware of the impact their communication has on parents and help them to clarify their role as parents in hospital.     

Strategies for feeling secure influence parents' participation in care

This study investigates what makes parents of hospitalized children feel secure and factors influencing their level of participation. It also studies, whether the degree to which parents participate affects their child's pain and sleep during hospitalization. Questionnaires were distributed to a series of parents whose children were discharged from two paediatric surgical wards and one paediatric medical-surgical ward at two university hospitals in Sweden. Parental security is almost equally distributed among three given alternatives: security derived from trusting that professionals know how to take care of the child; security derived from having control over what is happening to the child; and security derived from being the one who knows the child best. Depending upon the strategy chosen, parents want to participate at different levels in their child's care. The results indicate a relationship between parental participation and their estimation of their child's pain. The study confirms a pattern, developed in a previous study, in how parents adopt different strategies affecting their participation during their child's hospitalization. Some parents who wanted to participate in more aspects of their child's care seemed to think that their child had less pain than parents who preferred more limited participation.     

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.     

Family-centred care in practice

Helping parents and carers participate in the care of their child in hospital is the aim of a new model of family-centred care at Dunedin Hospital.