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.     

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.     

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.     

"I have to turn myself inside out": caring for immigrant families of children with asthma

In multicultural societies, health care professionals encounter immigrant families of children with asthma. They play an important role in supporting these families, but few studies have focused on this phenomenon. The aim of the present study is to gain a broader understanding of the challenges health care professionals face in their encounters with non-Western immigrant parents of children with asthma. Seventeen professional caregivers were interviewed, and their narratives were analyzed using qualitative content analysis. The results show that health care professionals' main challenges when encountering immigrant parents can be described by the theme, "Turning oneself inside out." This theme is characterized by five categories: gender and professional issues, impact on professional relationships, communication challenges, unfamiliar disease and treatment perceptions, and time issues. The results highlight the importance of providing health care professionals with support and organizational conditions that increase opportunities to understand the unique situation of these families.     

Rearing the Child Who Is Technology Dependent: Perceptions of Parents and Home Care Nurses

ISSUES AND PURPOSE. Most children who are dependent on technology for survival live with their families at home. This study explores the perceptions of parents and home care nurses regarding rearing the technology-dependent child.
DESIGN AND METHODS. In this qualitative study, interviews were conducted with 16 parents whose child is technology dependent and 15 registered nurses who provided home care.
RESULTS. Rearing the child who is technology dependent is similar to but different from raising other children. Parental communication and negotiation of child-rearing expectations with home care nurses is essential.
PRACTICE IMPLICATIONS. Improved collaboration and communication between parents and nurses may reduce parental stress and enhance development for children who are dependent on technology.     

Managing chronic illness: parents with a ventilator--dependent child

Ventilator-dependent children are surviving longer and increasing in number. This qualitative study was undertaken to describe the impact of a ventilator-dependent child on 10 families and to describe the management styles used by the parents. In five families, the child remained hospitalized due to the disability while in the other five the child primarily lived at home. Three major themes in managing were elicited: barriers, resources, and parenting. Parents believed they should try to normalize their child's experiences, that interactions with health care professionals required negotiation and assertiveness, and that they needed some support person(s) outside of the family.     

Health professionals' perspectives of suicide in Taiwan

The ethnographic study on which this report is based investigated experiences among patients, their families, friends, colleagues, and health professionals following a suicide attempt. Misunderstanding and ineffective treatment are often based on different explanations of suicide held by patients, their families, and health professionals, even when they share culture and language. In this report we describe how suicide is perceived by psychiatric team members in one regional teaching hospital in northern Taiwan. Twenty-two staff members of the Department of Psychiatry participated in this study. "Making a diagnosis" characterized the psychiatric subculture around the care of suicidal patients. In addition, mental health professionals tended to differentiate the patient's condition through three main avenues: (a) psychotic symptoms versus personality problems, (b) low IQ and high educational level, and (c) high versus low lethality of method. These findings suggest that mental health professionals need to bridge the gap between their knowledge and understanding of suicide and patients' and patients' families' expectations for care and treatment.     

HEALTH PROFESSIONALS' PERSPECTIVES OF SUICIDE IN TAIWAN

The ethnographic study on which this report is based investigated experiences among patients, their families, friends, colleagues, and health professionals following a suicide attempt. Misunderstanding and ineffective treatment are often based on different explanations of suicide held by patients, their families, and health professionals, even when they share culture and language. In this report we describe how suicide is perceived by psychiatric team members in one regional teaching hospital in northern Taiwan. Twenty-two staff members of the Department of Psychiatry participated in this study. “Making a diagnosis” characterized the psychiatric subculture around the care of suicidal patients. In addition, mental health professionals tended to differentiate the patient's condition through three main avenues: (a) psychotic symptoms versus personality problems, (b) low IQ and high educational level, and (c) high versus low lethality of method. These findings suggest that mental health professionals need to bridge the gap between their knowledge and understanding of suicide and patients' and patients' families' expectations for care and treatment.     

Risk management and clinical governance for complex home-based health care

Healthcare professionals have an obligation to enable children with complex needs to lead 'ordinary lives' at home but the views of professionals and family members often diverge in relation to the management of risks. Nurses are increasingly taking on the clinical responsibility for children with complex needs within a multidisciplinary, multi-agency team, yet have little training or experience in adapting risk management and clinical governance frameworks to home-based settings. Risk management frameworks for home-based care for children with complex health and social care needs are introduced in this article. Best practice guidance and resources for adapting risk management frameworks are presented to meet this identified gap in knowledge and experience. Children, young people and their parents have increasing expectations relating to the type and quality of home-based support they receive. Developing and applying clinical governance and risk management frameworks are part of improving outcomes for children with complex needs and their families.     

Parents' perceptions of the quality of pediatric and perinatal end-of-life care

OBJECTIVE: The purpose of this study was to describe the quality of care provided before, at the time of, and following the death of an infant, child, or adolescent from the perspective of the parent, using a newly developed survey. SAMPLE AND METHODS: Parents were asked to participate in this study if they experienced a stillbirth or death of an infant/child/youth between 12 and 24 months prior to the beginning of the study. Thirty-eight families completed the survey with one of the researchers over the telephone or in person. Survey questions asked parents to report on the care received rather than rate how satisfied they were with care. RESULTS: Parents were reluctant to report negative occurrences in care they received, yet, when questioned further, nearly every parent could relate a particular event or person who had a negative impact on their experience. Parents identified communication between health professionals, relationships with health professionals, care at the time of death, and bereavement follow-up as problematic areas. CONCLUSION: There is room for improvement in the end-of-life care provided to infants, children and youth, and their families.     

Development of a family liaison model during operative procedures.

The essence of family-centered care is the provision, by all health professionals, of psychosocially supportive care that fosters family integrity and functioning. Data from a hospital-based satisfaction survey at The Children's Hospital of Philadelphia (CHOP) indicated that the primary reason for parents being "less than completely satisfied" was lack of communication. A search of recent literature suggests also that breakdown in family-centered care in intensive care units is neither new nor unique. The purpose of this article is to describe how efforts to improve communication with parents and families led to the development of a family liaison program and an expanded role for staff nurses in the Cardiac Intensive Care Unit (CICU). The goals of this family liaison program were three-fold: to facilitate establishment of a relationship between CICU nursing staff, parents, and families at the earliest possible point in time; to ensure communication with parents and families at regular intervals during their child's surgery; and to promote practice that incorporates principles of family-centered care within the CICU. The design and implementation of such a program presented nurses in the CICU with both a challenge and an opportunity to take an innovative approach to meeting the fundamental need for information reported by parents and families, and echoed throughout nursing literature. This family liaison program serves to educate parents and families, communicate updates, provide physical and emotional support, and establish continuity of care for the patient and family. Additionally, nurses involved in the program have given positive feedback regarding their expanded role in this family-centered care model.     

Sources of conflict between families and health care professionals.

It is essential to examine conflict between patients and health care professionals from the patient's perspective. The purposes of this study were to 1) identify sources of conflict, 2) determine nursing interventions that alleviate conflict, and 3) test a conceptual framework of sources of conflict. This phenomenological study focused on children with cancer and their parents' perceptions of conflicts with health care professionals as well as what they thought helped with such conflicts. Their reports of conflict were compared to C. W. Moore's circle of conflict conceptual framework. A purposive sample of 27 participants (9 children, 14 mothers, and 4 fathers) participated in the study. Study findings showed that conflict occurred between health care professionals and families originating from differences in expectations and desires regarding data, interests, structure, relationships, and values, consistent with C. W. Moore's conceptual framework. Nursing interventions reported by children and parents to be helpful in preventing or alleviating conflict were identified. C. W. Moore's framework may provide a valuable structure for assessing conflict and designing nursing interventions to alleviate conflict.     

Poor communication and knowledge deficits: obstacles to effective management of children's postoperative pain

AIM OF THE STUDY: To explore the perceptions of nurses and parents of the management of postoperative pain in children. This paper focuses on issues of knowledge and communication. BACKGROUND: Nurses are the key health care professionals with responsibility for managing children's pain, however, nurses are not well supported educationally to manage the level of responsibility. RESULTS: Using matched interviews between 20 parents and 20 nurses many issues arose relating to the nurse/parent communication process. It was also clear that despite nurses' knowledge of pain management being deficient, they had expectations that required parents to have a level of knowledge they did not possess. CONCLUSIONS: The findings suggest that nurses' poor communication with parents and nurses' knowledge deficits in relation to children's pain management create obstacles to effective pain management. These obstacles need to be addressed in order to improve the management of children's pain through better education of nurses and two way communication with parents.     

Barriers to Family Care in Psychiatric Settings

PURPOSE: To identify barriers to family care in psychiatric settings and to describe family and provider perspectives about what constitutes effective family care. DESIGN AND METHODS: A qualitative exploratory approach with focus groups. Seventy-eight people participated in 11 focus groups conducted with families, patients, and health professionals. FINDINGS: Families identified poor quality care, conflict with health professionals about treatment, and lack of a role for families in the treatment. African American families also identified isolation of their communities from the mental health care system. Adolescents emphasized their role as caregivers and their needs for support. Health professionals conveyed concerns about system-based barriers, professional practice-based barriers, and family-based barriers to care. Patients stated the need for their families to be better educated about mental illness. CONCLUSIONS: The lack of family care in psychiatric settings is a multifaceted problem. Current health policies do not show endorsement of a family care approach. Responses from families and health professionals indicated conflicting opinions about content of family care. Health professionals reported they often lacked training and resources to deal with complex family issues. Families believed that lengthy and intensive interventions were neither necessary nor desired to address their concerns. Family care can be improved by focusing on building rapport and communicating problems and concerns between families and health professionals.     

Building trustworthy relationships with critically ill patients and families

A difficult case study involving repeated health crises and irreversible organ dysfunction illustrates the challenges critical care professionals face in caring for patients and their families. In such cases, trust is especially fragile, and coexists with its counterpart, betrayal. The Reina Trust & Betrayal Model defines 3 types of Transactional Trust. The first, Competence Trust, or the Trust of Capability, requires that clinicians practice humility, engage in inquiry, honor the patient's choices, and express compassion. The second, Contractual Trust, or the Trust of Character, demands that clinicians keep agreements, manage expectations, establish boundaries, and encourage mutually serving expectations. The third, Communication Trust, or the Trust of Disclosure, must be rooted in respect and based on truth-telling. Particularly in life-and-death situations, communication requires honesty and clarity. Each type of trust involves specific behaviors that build trust and can guide critical care professionals as they interact with patients and their families.     

Culture, communication and child health

Cultural beliefs and values implicitly and explicitly shape every aspect of the way we parent our children and how we communicate about parenting. To appropriately support parents in this new and challenging role, child health services for parents in Australia need to do more than acknowledge a diverse range of cultural practices. While many health professionals believe they act in culturally sensitive ways, we need to closely examine this belief, question the cultural assumptions implicit in the information we give, and assess the extent to which our interactions are culturally appropriate. In this paper, we present a critical review of the literature on health care provision for migrant women and families. We then suggest a need to re-examine the values, beliefs and attitudes within cultural frameworks that inform how child health professionals communicate. Specifically, communication between child health professionals and migrant parents requires further analysis. We suggest that professionals need to reflect on the cultural self rather than solely on the culture of others.     

The knowledge and learning needs of health professionals in providing support for parents of premature babies at home: A mixed-methods study

Premature babies and their families often require on-going community-based care after discharge from the neonatal unit. Parents themselves have identified the need for health professionals to understand the specific needs of parents of premature babies in order to provide the optimal support they require. This study aimed to explore the existing knowledge base and learning needs of community health professionals, to further understand how they can adequately support parents in the community with premature babies. A mixed-methods approach was used comprising a questionnaire, semi-structured interviews and secondary data analysis. Participants included thirteen Health Visitor [HV] students, eight educators and seven parents from a previous study. Thematic analysis revealed important insights into the knowledge and learning needs necessary to support parents of premature babies in the community. Three main themes emerged: development of prior knowledge; the importance of practice-based learning; learning and training needs. Knowledge, confidence and skills in relation to caring for parents with premature babies varied between individuals depending on their placement during training and subsequent experiences. While transferable skills in supporting parents in the community were present, more education and training in the specific needs of premature babies and parents would be welcomed. Tailored resources for community-based health professionals on the specific needs of the premature baby would enhance provision of optimal support for parents.     

Infant mental health in intensive care: Laying a foundation for social,emotional and mental health outcomes through regulation,relationships and reflection

Infants and their families who begin their lives in intensive care often experience short and long term behavioral, socioemotional and mental health challenges that often follow them into adulthood. Utilization of evidence-based infant mental health principles, approaches and strategies in the neonatal intensive care unit can contribute to the promotion of optimal outcomes for babies and their parents. In order to integrate mental health best practices into intensive care settings, an emphasis on infant and family regulation, optimal nurturing relationships and reflective practice is offered. Using a parallel process, similar strategies in support of intensive care professionals in their provision of appropriate mental health supports to babies and families is essential.     

Parental grieving and perceptions regarding health care professionals' interventions.

The death of a neonate, infant, or child is a tragedy that greatly impacts on many individuals' lives. Nurses and other health-care professionals provide care for not only the dying child but also the grieving parents and families. It is imperative that health care professionals are cognizant of the components and intensity of parental grieving and the critical role that they must assume in supporting bereaved parents prior to, at the time of, and after the child's death. The purpose of this study was to measure the intensity of parental grieving and collect information from bereaved parents regarding their perception of health care professionals' interventions. The results indicated that bereaved parents' intensity of grieving scores were generally higher than those reported on the TRIG norms. In response to The Bereavement Questionnaire, they were able to identify what health care professionals did or said that was helpful or unhelpful before, during, and after their child's death.