The many roles of families in family-centered care--Part III

Lawrie Williams, a mother of two daughters who have experienced serious medical challenges, authors the third in a series on parental roles in family-centered care. This article highlights the role parents can play in helping other families through parent-to-parent support programs. Lawrie first experienced the support of another parent when one of her daughters was young, and later realized she could use her own experiences professionally. For the past 6 years, Lawrie Williams has been the coordinator of the Parent Support Program at the Center for Children with Special Needs, Children's Hospital & Regional Medical Center in Seattle, Washington.     

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

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

The many roles of families in family-centered care--part V. Interview by Deborah Dokken

This article, the fifth of six in a series on roles for family members in family-centered care, focuses on the role of parents as educators of clinicians in the health care system. Two interviews highlight this role. The director of family services at a pediatric hospital, a parent of a child who suffered with a chronic illness, offers suggestions for institutions wanting to further develop this key role. This includes involving patient and family advisors at the "front end" of any initiative or new project; identifying champions (clinical staff, administrators, and patients/family members) for these roles within the institution; preparing family members for the educator role; following-up with thanks and feedback; and tracking successes of projects in which patient and family advisors participate. The father interviewed in this article describes the sense of fulfillment he experiences from teaching health care providers about child and family needs and the emotional side of care. He urges all parents to recognize the important education they can offer professionals when they both ask questions and share about their own child and family.     

The Impact of Communication and the Neonatal Intensive Care Unit Environment on Parent Involvement

Survival rates of premature infants hospitalized in neonatal intensive care units have improved dramatically due in large part to technological advancements in obstetrics and neonatology. The first neonatal intensive care units were restrictive to parents. Parental involvement has evolved from parental viewing from outside a window, to a “family-centered care” focus. This transition in thinking and practice has lead to the critical examination of the environment in which care is provided to critically ill neonates and how communication patterns may be influenced by the physical environments themselves. This article describes the evolution of parent involvement as it pertains to caring for critically ill newborns and the physical structure of the environment where these newborns receive care. In addition, the many C's of communication are examined, and strategies to enhance effective communication among health care professionals and with parents are provided.     

Coping and caring in different ways: understanding and meaningful involvement

The experience of having a baby in the neonatal intensive care unit (NICU) is frightening and creates uncertainty for families. Each parent copes with the challenge in his or her own way. Nurses can play an important role in helping parents find their own unique paths to meaningful involvement in caring for their infant by utilizing five frameworks in the assessment and planning process. The frameworks include: (a) family-centered care, (b) a cultural context, (c) loss and grief issues, (d) personal style considerations, and (e) reflections on the caregiver's own value system. The stories of three families illustrate individual coping styles and the application of these frameworks in understanding family coping in the NICU. A list of suggested questions identifying family background and strengths can assist in applying the five frameworks in assessment. A list of areas of potential parental involvement can assist nurses in helping families determine the ways in which they would like to be involved in their infant's care while in the NICU.     

In their own voices: families discuss end-of-life decision making--part 1. Interview by Elizabeth Ahmann

One parent's experience with her daughter in a neonatal intensive care unit (NICU) and pediatric intensive care unit (PICU) setting sheds light on parental involvement in end-of-life decision making. For this parent, collaborative decision making was facilitated in an environment where the parents had gotten to know the health care providers over time. Health care provider style was a factor in providing parents with access to information needed to participate in decisions. Regular meetings away from the bedside facilitated parental information gathering and joint decision making. This parent also used outside advice in making key decisions. In contrast, interaction with a minimally communicative and authoritarian style health care professional added greatly to this parent's stress in an already difficult circumstance. These are her own words.     

Disability as a "family affair": parental disability and childhood immunization

BACKGROUND: There is a substantial body of research focusing on the health and healthcare utilization of individuals with a disability but less has been done to examine the impact of disability on nondisabled family members. OBJECTIVE: We sought to investigate the influence of parental disability on children's healthcare as measured by the timely receipt of childhood immunizations. RESEARCH DESIGN: Observations on 11,997 children between the ages 2 and 5 years were obtained from the 1994 and 1995 United States National Health Interview Surveys representing 27,534,841 children when weighted. Children are determined to be in compliance with the Centers for Disease Control immunization protocol at age 24 months if they have received 4 DTP, 3 polio, and 1 MMR vaccine dose. Disability is characterized using the activity and personal care scales from the National Health Interview Surveys. The data were analyzed using logistic regression controlling for factors identified in prior research to be related to timely receipt of immunization. RESULTS: Children living with a parent who is unable to provide his or her own personal care are 65% less likely (odds ratio = 0.35; 95% confidence interval = 0.17-0.70) to be immunized on time than children who live with parent(s) who do not have a disability. Children of parents who are limited in their personal care, and children of parents who have work limitations, are not less likely than children of nondisabled parents to receive immunizations on time. CONCLUSIONS: The impact of a parent's severe disability extends to the health care of dependent children. These findings argue for research to investigate the full scope of the effects of parental disability on children's health and for policies that address this impact.     

Family-centered care: facing the new millennium. Interview by Elizabeth Ahmann

In an interview with the column editor, Beverley Johnson, President and Chief Executive Officer of the Institute for Family-Centered Care, shares her views on the state of family-centered care (see Table 1). A notable achievement over the past several decades has been the acknowledgment of family-centered care as the standard of care for children with special health care needs. Today there is a growing momentum to more broadly apply the principles of family-centered care in both pediatric and adult care settings, and much work needs to be done to build on the strong foundation that has been laid. Changing attitudes and practice, changing how families are viewed and how care is provided, developing collaborative approaches, and emphasizing the importance of relationships--changing in these ways the very culture of health care--will be necessary to make family-centered care a full reality. Many of these changes need to begin during the process of educating medical and nursing students. Health care institutions can support these changes by incorporating principles of family-centered care into personnel policies and practices, ensuring the hiring and support of individuals with family-centered skills and attitudes, and rewarding family-centered practice. Many of these changes can also be supported by research on the relationships between family-centered care and health care utilization, lengths of stay, and health care outcomes. The interview concludes as follows: "What is good for families and patients is often good for the health care system as well. Family-centered care is a winning proposition for all concerned."     

Transition to home from the newborn intensive care unit: applying the principles of family-centered care to the discharge process

Increasingly newborn intensive care units (NICUs) are embracing family-centered care principles. Family-centered newborn intensive care requires that families are welcomed as partners in caregiving and decision making. Traditionally, discharge planning has been done without significant family involvement. In fact, parent participation in caregiving may still be limited until discharge is imminent. By increasing parental involvement in caregiving throughout hospitalization and working with families to facilitate the discharge process, parents may emerge from the NICU experience with increased competence and confidence in infant caregiving. This article reviews common discharge practices and processes in the NICU and offers strategies to assist nurses in integrating a family-centered approach into discharge planning.     

Parent consultants in the health-care system: a new approach in the care of children with special needs.

A unique and innovative role for parents has emerged from the recent emphasis on family-centered, community-based health care for children with special health-care needs. The role of parent consultant is described in the following article. Identified are the characteristics of the consultant role, benefits as well as challenges, how the role is enacted, and ways to finance the position. Nurses can serve to support and nurture the parent consultant role to ensure positive role development. Parent consultants have a unique and important perspective to offer in the delivery of a family-centered approach.     

A study of role negotiation between nurses and the parents of hospitalized children

The role of the parent of a hospitalized child has changed considerably over the past 30 years. Where parents were previously expected to had responsibility for care over to their child's nurses, there is now an expectation that parents will be extensively involved in the care of their hospitalized children. The negotiation of roles between nurses and parents has been advocated by workers concerned about conflicts between nurses and parents. However, it is not known whether such negotiation takes place between nurses and parents. It is clear that power is not evenly distributed between nurses and parents: issues of territory, stress, anxiety, uncertainty, control and conflicts arising from parental competence all place the parent in a weaker position. It is argued that the nurse holds the initiative in the decision about whether negotiation takes place. A small study is described in which nurses were invited to describes their response to their perception that a parent wanted to increase or decrease her or his involvement in her or his child's care. The critical incident technique (Flanagan 1954) was used to collect data. Nurses' responses were categorized into categories of 'encouragement', 'explanation/advice' and 'negotiation'. Responses were then placed in more specific subcategories. The inter-rater reliability of the categorization was measured. Owing to the limitations of the study, the results can only be regarded as suggestive. Nevertheless, significant association was found between the category of response and the grade of staff, with a stratified pattern of category of response demonstrated. The implications of the study for future research are discussed.     

Family-centered care in the NICU

Family-centered care is a philosophy of care that embraces a partnership between staff and families. Families, patients, and staff benefit in a family-centered care environment and the design of the newborn intensive care unit (NICU) must not interfere with its successful implementation. Unrestricted parental presence in the NICU, parental involvement in infant caregiving, and open communication with parents are basic tenets of family-centered care. By virtue of their continual presence and role in the NICU, nurses are in a unique position to support family-centered care.     

Parental autonomy and consent to treatment

This paper discusses the principle of autonomy in relation to minors and considers the complexities of parental responsibility regarding consent to treatment. The author considers the case of a child with leukaemia and draws on her own experiences as a parent to highlight the ethical dilemmas for health care professionals who may be in a position to support parents in consenting to treatment on behalf of their child.     

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.     

Developing a literature base to understand the caregiving experience of parents of children with cancer: a systematic review of factors related to parental health and well-being

Goal of work This paper describes a literature review conducted to identify important factors that have been investigated as explanations of variability in the health and well-being of parents of children with cancer. Our purpose was to build a literature base that could be used to guide and direct future research. Materials and methods Medline, Cinahl, EMBASE, PsycINFO, and Sociological Abstracts were searched from 1980 to 2005 using the keywords neoplasms; child(ren) aged 0–18 years; parent(s), caregiver(s), mother(s), or father(s). For papers that met the study inclusion criteria, sample characteristics and information about factors related to caregiver health, or the relationship between such factors, were extracted. The findings were organized according to the six main constructs that form the caregiving process and caregiver burden model: background/context variables; child characteristics; caregiver strain; self-perception; coping factors; and caregiver physical and psychological health. Main results Articles meeting the inclusion criteria totaled 57. We found substantial research showing that certain child characteristics (e.g., child behavior; time since diagnosis) and indicators of coping (e.g., family cohesion, social support, stress management) are related to parental psychological health. Other aspects of the caregiving process (e.g., parental self-perception, family-centered care, and physical health) have received less research attention. Conclusion Various limitations and gaps in the current literature were identified in our review. Future research to understand the complex interrelationships between factors involved in the caregiving process should examine hypotheses that are guided by a theoretical framework and tested using advanced statistical techniques.     

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.     

Promoting family-centered visitation makes a difference

Promoting parental and sibling visitation of the critically ill child can positively influence the resolution of a crisis when a child is admitted to the pediatric intensive care unit. There are many benefits as well as barriers to incorporating family-centered visitation into the plan of care. Understanding the needs, stressors, and coping styles of the entire family will help the nurse provide a positive experience when parents or siblings visit the critically ill child.     

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.     

Family-centered care: current realities in parent participation

Family-centered care is currently one of pediatric nursing's most dynamic and challenging philosophies. The concept of parent participation in family-centered practice has become a central tenet of pediatric nursing for the 21st century. Inhospital and home health care interventions have shifted now to recognize families' involvement in care as central to a child's care. Despite roots dating as early as the 1950s, the family-centered care approach still carries with it a myriad of challenges related to parental participation, including issues of role stress, negotiation failure, and power struggles. Although the application of theory in family-centered care practice has been discussed in the literature, implementing parent participation in family-centered care still needs to be refined. Case examples provide an educational strategy for nurses to discuss facilitating effective practice of family-centered care. This strategy also includes developing expertise in communication using models such as the LEARN framework to promote collaborative nurse-family relationships.     

Growing up with a spinal cord injury

Much of what we need to know to be independent adults is learned in the first five years of life. In the toddler, instead of reteaching learned skills, as we do with older spinal cord injury persons, we are teaching skills for the first time. It is therefore imperative to have a creative therapeutic team who can teach skills which were never acquired and encourage the child's cognitive growth as well as growth towards independence. This paper will include a case report of a 2 year-old C3-4 quadriplegic child rehabilitated through an interdisciplinary family-centered model of care. We will share some of the issues our team has encountered when "rehabilitating" very young children with spinal cord injuries based on the observations of the team members as well as the scant literature available. This will also include a parent's reflections of modification needed in family structure and roles.