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It takes a village to raise a child. —Igbo Proverb
This well-known Igbo proverb highlights the key role played by the community in the healthy development of its members. Such a community takes an active role in the transmission of its beliefs, values, priorities, and practices. It provides the conditions that help infants, toddlers, children, and adolescents develop into responsible, emotionally healthy adults who form respectful and collaborative relationships with others, cope with adversities, and are mindful of the well-being of their community. The quality of life of an individual within such a society is directly related to the quality of life of the entire community.
In the case of children with life-threatening illness and their families one could paraphrase, “It takes a team to care for a child with a life-threatening illness.” Such a team relies on the close collaboration of its members to address the needs of the ill child as well as those who are part of the child's larger network, including parents, grandparents, siblings, peers, and teachers. For many of these significant people in the ill child's life, this is the first time they are confronted with the possibility, and in some cases the eventuality, of a child's death.
The team's role is to accompany the child and family during the course of the illness and through bereavement. In so doing the team pursues an active and comprehensive approach to care, with the goal of helping the child and family cope with the challenges of the disease and treatment. The team acts to alleviate the patient's physical discomfort and endeavors to temper the suffering caused by the uncertainties of the prognosis and outcomes of treatment. The team works with the child and family in their quest for a life worth living, that is, a life characterized by quality and meaning regardless of whether or not the child lives. When a child dies, the team offers or recommends services to those who had been involved with the child's life that are aimed at facilitating their adjustment to the death.
In this chapter we focus on the development and structure of teams, a major feature of the care that is provided to children with life-threatening illnesses and their families. We do so with the caveat that the literature on teamwork in pediatric palliative care is rather limited. Conspicuously absent are systematic empirical studies of how teams develop and operate and their effects on team members, patients, families, institutions, and communities. The literature that does exist is descriptive and of varying depth and breadth. Articles that deal with teams focus on the educational background of professionals who make up the team, their roles, and responsibilities. With few exceptions little attention is given to team development, team functioning, and team support in the face of serious illness and death. The purpose of this chapter is to draw attention to these issues in order to enhance our understanding of the team's role in the care of children with life-threatening illnesses and determine what is needed to ensure the highest quality of care. Also, we hope to point the way toward further research and training.
Our discussion and recommendations are rooted in a relationship-centered approach that focuses on relationships among children, adolescents, and families who receive care services, and professionals who offer them. Such an approach recognizes the reciprocal influence between children and families on the one hand, and professionals, teams, and organizations on the other. These professionals, affected by their interactions, seek creative ways to contain, reduce, or transform suffering, and in so doing enhance the quality of care for a child who may never grow into adulthood. In other words, the relationship-centered approach is concerned with the establishment of relations that are potentially enriching, and are rewarding for all involved. Achievement of this goal requires understanding not only the patient's and family's subjective views and experiences so as to provide them with appropriate care, but also the professionals' and team's subjectivity, which shapes interactions with children and parents, and affects the quality of services.
This view perceives care-giving as a social affair that is determined by the relations among care seekers and care providers. All of them are inevitably affected by the serious illness and death of the child, and as a result, their relationships are impacted by feelings that must be recognized and addressed as they affect the process and quality of care.
For a group of people to become a team they must share a common purpose, be strongly committed to the achievement of specific tasks, and value teamwork through which they expect to accomplish more by cooperating. Setting a clear task that is owned by each member and sharing outcomes are central to the transition from a group to a team.
Another characteristic that distinguishes groups from teams is their size and leadership. While groups vary in size, teams contain no more than a few members who share leadership in clinical practice, although at an administrative level they are led by a senior member. Depending on a child's condition and family's situation, for example, different professionals may take the lead at any time and make a special contribution in order to achieve the team's goal and tasks. Regardless of whether the team uses a manager to facilitate the coordination of actions or it chooses to be self-managed, the importance is that responsibility for outcomes be shared. By contrast, in a group, leadership is assigned to one person who imposes his or her leadership style that usually remains unchanged despite the changing focus or work activity.
We view teams as dynamic systems that have the potential to evolve, grow, and function with increasing degrees of openness, communication, and collaboration among care providers. A team's development is not linear. It is characterized by cycles of forward vs. regressive movement, as well as by periods of stability, disorganization, being stuck, and growth. What determines a team's level of development is related to the ability of its members to establish and maintain collaborations that ensure quality care and are enriching to both families and team members.
Among the available models for understanding team development, and especially applicable to palliative care, are those proposed by Papadatou and Morasz. They take the position that over the course of development, team members experience periods of co-existence, mutual acknowledgment and parallel collaboration, and of collaborative alliance with concomitant changes in disciplinary boundaries ( Fig. 6-1 ).
When functioning in the mode of co-existence , professionals work more as a group than as a team. Goals are generally shared, specific roles are identified, and tasks are divided among care providers who provide services that are fragmented and compartmentalized. Not infrequently a predetermined package of medical, nursing, psychological, social, and spiritual services is offered to families of seriously ill children, who are then introduced or referred to different experts. Transactions among professionals tend to be rigid and communication limited. They rarely report to their colleagues about the nature and outcomes of their intervention or observations—information that could be useful to others in their interactions with the families. Each care provider is focused on his or her field of expertise and communicates achievements through brief reports that are usually included in the patient's file.
In the mode of parallel collaboration , care providers begin to work as a team. They acknowledge each other's knowledge and skills, and work in parallel yet independent ways toward shared goals and tasks. Transactions are richer and communication is more open, but it remains superficial. The team members accomplish their job, but lack the ability to integrate the richness of existing services into an explanatory and comprehensive framework.
In parallel collaboration, teamwork is often multidisciplinary and team members do not necessarily adapt their roles and responsibilities to those of other professionals. Information is usually communicated via the patient's file or in staff meetings where each provider reports his or her work that is added rather than integrated into the plan of care that is offered to a child and family.
In the mode of collaborative alliance , emphasis is placed on effective and open communication among professionals who plan, offer, and evaluate their collective services. Information circulates and team members learn from each other, broaden their horizons of understanding, and critically review their work by acknowledging their strengths and limitations. A reflective process is central to their collaboration and evaluation is periodic both with regard to the outcomes as well as to the process by which services are provided and goals are achieved.
Teamwork now becomes interdisciplinary in nature and is based upon the close collaboration among professionals who set clear goals, decide upon a course of action, and assume the responsibility of care as a team—not as individuals. Team members are characterized by a high degree of interconnectedness and a sense of belonging. The identity of the team is set above their personal identities. Mutual support becomes essential in the pursuit of collective goals and in coping with challenges and difficulties that are inherent in care. Leadership, responsibility, and accountability in interdisciplinary teams are usually shared.
In well-balanced and experienced teams, teamwork often takes the form of a transdisciplinary alliance. Care providers train one another in some domains of their expertise to broaden the horizon of knowledge and skills and become competent in assessing and responding to a wide range of needs without necessarily duplicating their services. This is particularly important when caring for children who are terminally ill and whose families choose to limit the number of relationships with professionals, and focus on the dying child and themselves.
For a collaborative alliance to develop, care providers must spend time working together, sharing experiences, exploring different points of views, and developing a common language that does not exclude any member. Interdisciplinary and transdisciplinary teamwork require interdependent collaboration and are possible only if the team functions as an open system that makes use of relevant information. Relevant information is any information that helps members to understand how they operate as a system, how they manage suffering and adversities, and how they make use of their resources. Such information helps team members learn from experience, consider alternative ideas and coping patterns, embrace new initiatives, take risks, implement changes, and grow as a team. Unless there is opportunity to share information about what is happening in the day-to-day work, how things are accomplished, and how professionals think, feel and behave, team members cannot be in control of the quality of services they provide, and the system cannot be self-correcting. Such openness is not simply limited to the disclosure and airing of feelings and thoughts, but demands a reflective openness that enables team members to challenge their own and others' thinking, suspend a sense of certainty, and share experiences with a receptiveness to having them challenged or changed.
In such a team, care providers derive satisfaction from both the provision of services that are helpful and meaningful to patients and families, as well as from their collaborations with one another in the pursuit of a common purpose.
A team's development is not solely determined by its members. The social and organizational context in which it provides services has a major impact on how it develops and functions. For example, in some places pediatric palliative care services are delivered by teams in the community through home, respite, or hospice programs. In others, they are introduced in the hospital and offer consultation services to professionals, families, and other teams. In many countries that lack resources or are reluctant to acknowledge the needs of dying children and grieving families, palliative care teams are either non-existent or encounter major social, institutional, and legal obstacles in the provision of interdisciplinary services. Even in resource-rich countries that acknowledge the needs of dying children and grieving families, provision of interdisciplinary and palliative care services may be hampered by the country's healthcare system.
The value system of a given social context affects the culture of the organization or service to which a team belongs, which, in turn, influences the services it provides. The organization's culture plays a major role in how seriously ill children are perceived, how they are cared for, and how they are integrated into the organization or service. Organizational culture also has an impact on how suffering is regulated, hope is instilled, and time is managed when a child's life is threatened.
Some organizations that assume a cure-oriented approach tend to dismiss or downplay the role of palliative care services, and instead adopt a protective approach by concealing the possibility of death from the child and occasionally from parents. Other organizations strive to integrate curative, life-prolonging and palliative care services and create a space for mutual collaborations among several teams and family members who are actively involved in the decision-making process.
Hence, the culture of an organization or service may promote or hinder different forms of teamwork, depending on its philosophy of care, its values, goals, and priorities. This does not mean that teams do not shape their own course of development, rather, some are helped and supported through this process, while others have to work harder to fully develop and pioneer their approach through the healthcare system.
We take the position that teams are active and dynamic systems with potential to change, develop, and grow. Teams, like the individuals who compose them, are not passive agents. Teams, like their members, are active agents who both shape and are shaped by their individual and collective responses to life-threatening illnesses, loss, suffering, and those whom they encounter in their work. Teams, like their members, are both subject to and react to internal and external stressors associated with the care of seriously ill patients and their families. Affected by the wider social and organizational context of work, team members, consciously or unconsciously, decide how to operate and collaborate with each other in order to meet the challenges of life-and-death situations. The team's development, functionality and effectiveness are reflected in the patterns by which its members manage team boundaries and team operations as well as suffering and time.
Teams with defined but flexible and permeable boundaries facilitate interdisciplinary collaborations and promote open teamwork. In contrast, teams with rigid boundaries tend to function as closed systems in which transactions are tightly controlled and collaboration is limited. In a parallel way, teams with diffused or blurred boundaries expose their members to intrusions and invasions from within or outside the team, and sustain chaotic transactions that render intra- and inter-team relationships a source of constant distress. This compromises their development because they become more absorbed by their conflicts than by opening up to opportunities for learning, collaborating, and expanding.
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