Negotiation of parental roles within family-centred care: a review of the research

Aims and objectives. To review research published in the past 15 years about how children's nurses’ negotiate with parents in relation to family‐centred care. Background. Family‐centred care is a basic tenet of children's nursing and requires a process of negotiation between health professionals and the family, which results in shared decision‐making about what the child's care will be and who will provide this. The literature highlights inconsistencies in the degree to which nurses are willing to negotiate with parents and allow them to participate in decisions regarding care of their child. There is need to explore further the extent to which nurses communicate and negotiate shared care with children and their parents. Conclusions. Three themes emerged from this review of the literature relating to whether role negotiation occurred in practice, parental expectations of participation in their child's care and issues relating to power and control. Parents wanted to be involved in their child's care but found that nurses’ lack of communication and limited negotiation meant that this did not always occur. Nurses appeared to have clear ideas about what nursing care parents could be involved with and did not routinely negotiate with parents in this context. Relevance to clinical practice. For family‐centred care to be a reality nurses need to negotiate and communicate with children and their families effectively. Parents need to be able to negotiate with health staff what this participation will involve and to negotiate new roles for themselves in sharing care of their sick child. Parents should be involved in the decision‐making process. However, research suggests that a lack of effective communication, professional expectations and issues of power and control often inhibit open and mutual negotiation between families and nurses.     

Decision-making during hospitalization: parents' and children's involvement

Background. Ethical duties of health professionals include the obligation to enhance their patients’ competence and ability to participate. Aims and objectives. To explore what kind of decisions and how these decisions were made during a child's hospitalization. Design. During a 9‐week period 24 children and their parents were followed during the course of events at the hospital. In total 135 hours of observations were made and analysed in two steps. Results. In most of the situations one or both parents were present with the child. Most decisions were of a medical nature, and commonly decisions were made in consultation with those affected by the decision. Although one or more persons protested in 83 of the 218 described situations, decisions were seldom reconsidered. Conclusions. The children and their parents were usually involved in the decision‐making process. Children and parents made few decisions themselves and even if they disagreed with the decision made, few decisions were reconsidered. Relevance to clinical practice. Having a voice in decision‐making helps the child to develop a sense of himself as a person and gives the parents a feeling that they are part of a team giving their child optimal care during hospitalization. Promoting children's rights is one of the most important roles for the children's 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.     

Pediatric brain tumor patients: their parents' perceptions of the hospital experience.

Studies have shown that admission to the hospital of a child can induce feelings of fear and helplessness in parents, challenging usual patterns of coping and parenting competence. Stress has been associated with parents' need to establish effective communication with staff and their need for information, ready access to their children, and participation in decision making relating to their child's care. This study of coping and adjustment was undertaken with the parents, including mothers and fathers, of children under 18 years of age diagnosed with a brain tumor, presenting at Royal Children's Hospital, Melbourne, between 2001 and 2002 (N=53). It was a prospective study using repeated measures over time. Participants in the study were involved in a questionnaire interview at 4 different points: at the time of diagnosis, 6 months postdiagnosis, 1 year postdiagnosis, and 2 years postdiagnosis, in which they were asked, among other things, about their experience of the hospital. The point of diagnosis was marked by a high level of dependence, with parents coping with rapid decision making and shock, and the surrender of care of their child. Parents identified high levels of information need but noted that they were often too stressed to take in information early on, and that this information need persisted up to the 2-year postdiagnosis point. More parents expressed dissatisfaction with the hospital and particularly with their interactions with the health care team at the 6-month post-diagnosis period, reflecting a possible reduction in attention given to families once they had settled into the treatment routine and the crisis of diagnosis had passed.     

Presymptomatic genetic testing in children for neurofibromatosis 2

Genetic testing in children, when there is a question of whether or not there is a clear medical benefit that will accrue to the child, is a controversial topic within the health care community. A convenience sample of 10 parents from nine families who had made the decision whether or not to test their children for the neurofibromatosis 2 gene mutation was asked in interviews to describe why they made their choice about presymptomatic testing for this late-onset disease. Findings from a narrative analysis revealed how the nine parents who tested or intended to test their young children saw the decision as a pathway to knowledge that would help the family unit. All parents interviewed noted that their decision was informed by their health team and was not difficult to make. Implications of these findings for bioethical analysis are presented.     

The psychosocial impact on parents of tube feeding their child

A review of 13 papers investigating parents' experience of long-term tube feeding in disabled children and young people identified a significant impact on parents and families related to oral feeding, decision making and tube feeding itself. Mixed messages and pressure from health professionals and relatives made decision making about tube feeding more difficult for parents. Making the decision to tube feed or proceed to gastrostomy was described in terms of 'giving in'. Parents expressed a need for consistent, accurate information. Once tube feeding was established there is a positive impact on the lives of the child and family - although some parents reported reduced support and continued feelings of inadequacy. The significance parents attach to oral feeding and their information and respite care needs when tube feeding must be recognised and further explored.     

Bourdieu at the bedside: briefing parents in a pediatric hospital

The philosophy of family‐centered care (FCC) promotes partnerships between families and staff to plan, deliver, and evaluate services for children and has been officially adopted by a majority of pediatric hospitals throughout North America. However, studies indicated that many parents have continued to be dissatisfied with their decision‐making roles in their child's care. This is particularly salient for parents of children with chronic ongoing complex health problems. These children are dependent upon medical technology and require frequent hospitalizations during which parents must contribute to difficult decisions regarding their child's care. Given this clinical issue, an alternative theoretical perspective was explored to redress this problem. Pierre Bourdieu's theoretical concepts of field, capital, and habitus were used to analyze the hierarchical relationships in pediatric acute care hospitals and to design a briefing intervention aimed at improving parents' satisfaction with decision making in that health care setting.     

Professionals' perceptions of children's participation in decision making in healthcare

The purpose of this study was to identify factors of importance for children's participation in medical and nursing care. A method close to the critical incident technique was used. A total of 92 stories told by staff and containing different levels of children's participation in decision making were analysed. The factors affecting children's participation in decision making were grouped into six categories: the child's protest, the child's age and maturity, the role of parents, attitudes of staff, the time factor and alternative solutions to the problem. This study shows that in certain cases children can affect their situation, bus also that violating actions are performed on children.     

Parent Participation in Care: Bridging the Gap in the Pediatric ICU

Family-centered care is emerging as a driving philosophy in all aspects of health care. Active participation of parents in the care of their child in the hospital setting is becoming one of the central concepts of this philosophy. Studies demonstrate the benefits for children, parents, and families. Although research supports the need for increased parent participation during a child's hospital stay, integrating research findings and changing practices of health care professionals may not be easy. Pediatric nurses, especially those working in critical care environments, may have difficulty integrating this philosophy into their care. Realizing the numerous benefits that exist, health care providers would be prudent to embrace the concept of parent participation in care. This article reviews the emergence of parent participation, what it encompasses, its benefits, and the challenges of implementation. Several strategies are examined as a basis to find ways in which the concept of parent participation can become a daily reality in the pediatric intensive care unit. Only after gathering a full understanding of the nature of parent participation in care can we begin to develop individualized strategies and approaches for incorporating these interventions into our practices and thus provide children with true family-centered care.     

Critical care nurses' participation in ethical decision making

Critical care staff nurses' participation in ethical decision making was studied in relation to the perceptions of environmental social support of 45 female staff nurses. Data obtained measured perceived environmental social support from six organizational subgroups and individual participation in ethical decision making. Validity and reliability testing was done on the instrument. When involved in an ethical situation, critical care nurses perceived low levels of environmental social support from hospital administrators, nursing administrators, and physicians. Co-workers were consistently perceived as most supportive across all aspects of social support. The majority of the nurses surveyed (74%) reported that ethical decisions were made by physicians or with reference to hospital policy, and that there were limited roles for individual, family, or nurse participation in such decision making. It was concluded that critical care nurses perceive a lack of free agency necessary to engage in ethical decision making in hospital environments or to act in an advocacy role in such situations.     

Important aspects of care and assistance for children with cancer

This study examined aspects of care and assistance that are important for 8- to 12-year-old children with cancer. Data were gathered through interviews with 25 children, 31 parents, and 32 nurses. Each participant was asked: “What caring aspects are important for you/your child/the child to feel cared for?” and “What help, if any, do you/your child/the child need outside the hospital?” Data were analyzed by content analysis. The following important caring aspects were identified: amusement, clinical competence, continuity, family participation, honest communication, information, participation in decision making, satisfaction of basic needs, social competence, and time. Children most frequently mentioned the importance of social competence, amusement, and satisfaction of basic needs. Parents and nurses most frequently mentioned the importance of information, social competence, and participation in decision making. The following important assistance aspects were also identified: emotional support, family life, meeting friends, practical support, rehabilitation, and school support. Two-thirds of the children did not mention that they needed any help outside the hospital. According to parents and nurses, one third of the children needed emotional support, whereas none of the children mentioned a need for this.     

Cancer patients' views and experiences of participation in care and decision making

The purpose of this study was to explore the views and experiences of adult cancer patients about patient participation in care and decision making and the preconditions for this participation. The data were collected by means of focused interviews; in addition the patients completed depression and problem-solving instruments. The sample comprised 34 cancer patients from the haematological and oncological wards of one university hospital in Finland. The results revealed considerable variation in the patients' views on their participation in care and decision making. Some of the patients understood participation either in terms of contributing to the decision making or in terms of expressing their views on treatment options. Some considered that their participation in care was impossible. Patient participation in care and decision making was promoted by good health, access to information, assertiveness, good interactive relationships with nurses and physicians, and encouragement by nurses and physicians to participate. Factors restricting such patient participation were poor health, ignorance, anxiety, age, time pressures of staff, lack of time, high staff turnover and poor interactive relationships. With regard to participation in medical decision making, the patients were divided into three groups: (1) active participants (n = 7), (2) patients giving active consent (n = 9), and (3) patients giving passive consent to medical decisions (n = 18).     

An observational study of the level at which parents participate in decisions during their child's hospitalization

When a child is hospitalized, the parents find themselves in an unfamiliar environment and their parental role changes. They are in a stressful and often anxiety-filled situation and it may be difficult for them to participate in decisions. The purpose of this study was to examine the extent to which parents participate in decisions during the course of events when their child is hospitalized. Thirty-five parents of 24 children (aged 5 months to 18 years) were followed by mobile observation during their child's hospitalization in a paediatric department in Sweden. Three researchers analysed field notes in three steps, using manifest and latent coding. In step 1, 119 situations that included a decision process were identified. In step 2, the situations were assessed according to a five-level scale concerning how the parents' wishes, desires or values had been respected. In step 3, each situation was scrutinized with respect to factors influencing the extent of the parents' participation. The results showed that parents have varying ability to be involved in decision making. Professionals need to communicate more openly with them in order to identify and satisfy their needs because some parents are unwilling or incapable of expressing them.     

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.     

Who owns the child in hospital? A preliminary discussion

Aim. To ‘own’ a person is considered an infringement of human rights, but we suggest that concepts of ownership influence interactions between parents and staff when a child is admitted to hospital. This paper aims to stimulate debate and contains an explanation of the exploration of the literature for research and discussion of ownership of the child. Method. A wide variety of library indexes, databases and populist media were examined although it was impossible to examine all literature which may have contained references to this topic, and, apart from databases which contained abstracts in English, we could not include literature written in any language other than English, Swedish, and Icelandic. Findings. We found no research that examines how concepts of ownership of a child affects communication between health professionals and parents and, ultimately, the delivery of health care. This paper begins discussion on the issues. Discussion. Historical literature shows that ownership of humans has been a part of many cultures, and parents were once considered to own their children. Ownership of another has legal connotations, for instance in guardianship struggles of children during marriage breakup and in ethical debates over surrogacy and products of assisted conception. Within health care, it becomes a contentious issue in transplantation of body parts, in discourse on autonomy and informed consent, and for religious groups who refuse blood transfusions. In health care, models such as family centred care and partnership in care depend on positive communication between parents and staff. If a hospital staff member feels that he/she owns a child for whom he/she is caring, then conflict between the staff member and the parents over who has the ‘best interests of the child’ at heart is possible. Conclusion. We encourage debate about concepts of who owns the hospitalized child – the parents or the staff? Should it be argued at all? Is the whole concept of ownership of another, be it adult or child, the ethical antithesis to modern beliefs about human rights? Comment on this issue is invited.     

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.     

Children's consent to treatment: using a scale to assess degree of self-determination

Discussion and debate regarding decision-making that is 'in the best interest of the child' and that also considers the child's voice in these decisions have increased in recent years. A study was undertaken to identify everyday situations in medical and nursing care in which children had been allowed to have a voice or been denied the right. Twenty-six hospitalized children, ages 6 to 17 years, and 21 parents were interviewed concerning their experiences with hospitalization. The interviews contained examples of 100 situations in which the children could have had a say in decisions concerning their care and treatment. An instrument describing five levels of self-determination was used to analyze the situations. The results showed that there are situations in the daily care of children who are hospitalized where it is possible to discuss the degree of self-determination of the child. To different degrees, staff members honored children's choices in questions concerning their own health.     

Shared decision making in school age children with asthma

Shared decision making in health care is a mutual partnership between the health care provider and the patient. Traditionally, children have had little involvement during their medical care visits or in decisions regarding their health care. Shared decision making in children with asthma may enhance their self-confidence as well as improve their self-management skills. Allowing the child to participate during the visit requires assessing the child's competence at different ages and abilities. Specific communication techniques to use with children during medical encounters include visual aids, turn-taking, clarifying communication, and role modeling. Providers additionally can offer strategies to parents on how to provide general information about asthma and treatments based on the child's questions and interest. The goal for school age children with asthma is to change dyadic interactions between the provider and parent into triadic interactions to improve the child's asthma management.