Compassionate Family Care Framework (CFCF)
The description of compassionate care is underexplored in the neonatal setting. Examining the concept of compassionate care through the perspective of parents with infants residing in the NICU could assist with clarifying how it can be better provided to the entire family unit. The Compassionate Family Care Framework (Figure 1) attempts to incorporate several of Lown et al.'s characteristics of compassionate care. Three characteristics, or the ABC's of the Compassionate Family Care Framework, are described as "A" Affiliative relationships, "B" Bidirectional communication, and "C" Compassionate partnerships. The CFCF begins with recognizing a family's suffering, internally responding to the suffering and then addressing that suffering through presence, word and action.
(Enlarge Image)
Figure 1.
Compassionate Family Care Framework.
Affiliative behavior is defined as "any sort of behavior that is enacted with the intent of supporting or improving one's individual union with others or which is connected more so with a drive to build, upkeep, and improve close individual partnerships with others." Affiliative relationships address the families' innate need for connections and relationships (being present) and are based on attentive listening and a desire to understand the families' context and perspective. Bidirectional communication is defined as communication that moves in two directions. Bidirectional communication addresses families suffering through words (verbal and non-verbal). Compassionate partnerships are based on choices; which include the facilitation of a family's choice of participation in decisions and the care for their infant. Compassionate partnerships address a family's suffering through actions (doing something about the suffering).
The Compassionate Family Care Framework pulls these three concepts together and is defined as affiliative relationships (connected respectful relationships between healthcare providers and families, as well as families and their infant) supported through bidirectional communication (two-way open communication) to create compassionate partnerships (emotionally attending to the families' distress). Each individual concept is further described below.
Affiliative Relationships: Caregivers and Parents/Families
Affiliative relationships occur between caregivers and infants/parents/families, as well as between parents and their infant. Affiliative relationships between caregivers and families are supportive connected respectful relationships based on empathy, emotional support, and efforts to understand and relieve the families' distress and suffering. Establishing an empathic connection involves intense focus from caregivers to actively listen to parents and seek to understand their concerns and what they are experiencing. The evolution of attachment and affiliative behavior helps explain how it is possible to be emotionally invested in parents, motivated to care for them, and moved by their distress, yet be able to maintain empathy, make sense of it, and become compassionate. Having secure attachments and relationships is one of the most important contributors to empathy. Caregivers must understand that therapeutic affiliative relationships have very important effects on physiological regulation in both parents and their infant.
Affiliative Relationships: Parents and Infant
Affiliative relationships between parents and their infant are based on attachment and bonding principles. Early life attachment has at least two functions: to keep the baby in the proximity of the mother and to guide brain development. Affiliative relationships suggest that compassion is an aspect of the same abilities that primates evolved for parenting and for developing affiliative relationships that enable group survival. Mammalian mothers are sensitive to distress in their infant and will try to reduce that distress. Bowlby's model of attachment developed out of his animal studies and infant observations, and more specifically highlights how we form (and break) affiliative relationships. Bowlby's attachment theory suggests that because of the critical importance of attachment for survival, evolution has led children to become biologically preprogrammed to form attachments to their mother. Bowlby describes that the attached child exhibits proximity-seeking behavior to the mother because she provides protection and a sense of safety to the child. Once the attachment is formed, the child uses the mother as a secure base to explore the world and develop other relationships. Bowlby believed that the child's attachment was built during the first year of life as the child forms a representational mental model of the self and others based on his or her earliest relationship to the mother.
The quality of care received from the mother programs the infant's emotional and cognitive development by helping to sculpt the developing brain. Newborns show specific, highly specialized behavior that can be characterized as attachment or bonding that is influenced by learning and experience. This behavior begins in utero, and adapts to accommodate the changing world as the infant is born and matures. Premature infants are vulnerable to forming lower-quality attachments to their mothers as a result of separation; which disrupts the critical experience with the mother during prenatal and postnatal development.Table 1 depicts benefits to infants when care is provided within a compassionate family care framework.
Affiliative relationships between a mother and her infant have psychological and neurophysiological properties of affiliative relating. For example oxytocin and opiates are known to be biological mediators of care affiliation, with oxytocin linked particularly with feelings of affiliation, trust, soothing and calmness. Oxytocin receptors in the amygdala influence threat-processing and important modifications of sympathetic and parasympathetic activity which have enabled mammals to engage in close personal relationships and soothe each other.
While infant–parent caregiver dyads are biologically predisposed to attach, learning about the parent is an additional determinant of the success and quality of attachment formation. The biological predisposition for attachment in infants seems to be mediated by a unique learning circuit that produces rapid, robust learning about the parent caregiver in both nurturing and abusive situations. Attachment occurs because the infant is programmed to ensure his or her own survival, which can only be achieved via continued contact with the parent caregiver. Attachment also contributes to infant developmental outcomes, such as emotionality, cognition, and overall mental health, as it is associated with specific caregiving patterns and levels of parent caregiving intensity. These specific patterns and intensity levels of stimulation to the infant's sensory systems can directly influence brain development. Of course there is more to compassion than hormones and mammalian affiliation. Humans are unique to the extent that our compassion depends on a number of other abilities such as empathy and the ability to stand back, think and reflect. Compassion is more than just caring: we can care for inanimate objects such as a new car, but we can't have compassion for inanimate objects. Understanding the dual role of attachment in ensuring care and sculpting infant neural and behavioral development provides a unique perspective when determining the level of care required for premature infants and their families. It remains difficult, however, to separate the effects of disrupted early-life attachment from the critical health issues associated with care of the preterm infant.
Bidirectional Communication
Effective communication between the healthcare team and family members has been described as bidirectional or bilateral. Bidirectional communication includes both interpersonal and informational communication. Interpersonal communication, both verbal and nonverbal, involves two-way communication which is based on respectful interactions that occur over time. One of the most important qualities that both staff and families value is time for listening. Engaging in basic communication exchanges and providing some normalcy in everyday conversations shows respect for parents as individuals. Sitting at eye level during this exchange encourages caring conversations that allow the development of knowledge about the parents that provides insights into who they are and what matters to them. Positive verbal and non-verbal communication behaviors has been correlated with outcomes such as trust, patient satisfaction, and malpractice claims.
Parents are a rich source of information and experiences, and also value sharing key information and perspectives on health conditions. Bilateral informational communication is not just a one-way flow from the health caregivers to the parents, because caregivers need continuous feedback from parents to be aware of whether parents are fully understanding the information received. With our complex acronym-driven medical terminology, many parents are shy and feel reluctant to speak up, which can hamper communication. The value of explaining what is happening to their infant and why, not in medical terminology, during every single interaction cannot be underestimated. This type of communication refers to the provision of education or preparatory information that parents need to become partners in care. Informational communication also includes communication among care providers which helps to provide improved continuity of care and avoids mistakes.
While informational communication is important, parents' perception of staff competence during infant–caregiver interactions and treatment is also a critical element in providing compassionate care. The provision of competent care inspires trust and a sense of safety. When caregiving professionals are accountable and perform job tasks correctly with confidence, parents perceive staff as being competent. The ability of the staff to work together as a whole and be consistent (preserving continuity of care) is also seen as demonstrating competence. All of these elements assist parents to relax more while at the bedside and promote feelings that their infant is in a safe environment.
There is a growing trend for open access into the NICU for parents of premature and critically ill infants and visitation frequency is higher now compared with 20 years ago. Successful bidirectional communication, both between parents and the healthcare team and parents and their infant, can only be achieved through increased parental presence. Eliminating the word "visitation" or visiting from signs, policies, and our communications is a first step in promoting an open, inviting and welcoming environment. Creating an open, inviting and welcoming environment that fosters bilateral communication will help facilitate compassionate family care.
Establishing the early infant–parent relationship is difficult at best, with the infant now residing in the NICU. Many parents cope with the enormous stress of a premature birth through emotional and sometimes even physical withdrawal; which may be a reflection of anxiety, exhaustion, anger, guilt and/or depression. Failing to visit and bond with the preterm infant interferes with the early attachment process. Low frequency visits between parents and their hospitalized premature infants have been associated with suboptimal outcomes like child abuse and abandonment and adverse emotional functioning. Parental access less than every day is a marker for adverse behavioral outcomes.
Compassionate Partnerships
The philosophy of compassionate partnerships has evolved over time, beginning with the concept of "allowing" parents access to visit their infant, to participating in care, to becoming a partner in the healthcare team. It is important for parents to understand that while there's an open invitation for a full partnership in the NICU, they have a choice regarding their level of participation; which must be supported. Parents' preference for involvement undoubtedly varies; however, as parents take a more active role in care, new opportunities to improve clinical and quality of life outcomes are created.
Nurses have an advantage when it comes to providing compassionate care, because of their intimate relationship with patients and families. It is essential that those who care for a premature and/or critically ill infant feel that they are not only "cared for" but also "cared about". Parents, along with their infant, must be recognized as care recipients. Care that is planned around the whole family, not just the infant, facilitates compassionate partnerships.
Compassionate partnerships with families strengthen a parents' sense of control and promotes their developing parent identity in a senseless, overwhelming and frightening environment, but parents won't participate unless they perceive genuine caring from the team. To successfully engage parents in care, a trusting, open and respectful relationship must exist; which is contingent upon establishing and maintaining caring connected relationships. Engaging parents as partners through medical rounds and shift changeover report can provide an opportunity for true collaboration and shared decision-making. This level of partnership is vital in the NICU and embodies the essence of family partnershipsTable 2 illustrates the many benefits to parents and families when care is provided within a compassionate family care framework.