INTRODUCTION
Despite the numerous descriptions of parents' behavior and self-reported experience during the serious or life-limiting illness of a child, our understanding of underlying parental psychological processes during a child's end-of-life period remains underdeveloped. This is related in part to common challenges in research on this topic, including design, measurement, recruitment, and sampling issues (Davies et al., Reference Davies, Widger, Steele, Wolfe, Hinds and Sourkes2011). Beyond these, the lack of a coherent theoretical approach hinders our ability to move forward with respect to the systematic development of targeted interventions with these families. Broad developmental and contextual differences between child and adult populations make it inappropriate to extrapolate from the adult palliative care literature in order to clarify these processes. What is needed is an approach that considers the parent's psychological status within the context and primacy of their caregiver identification and role.
To this end, we propose social attachment theory (Bowlby, Reference Bowlby1969/1980) as a broadband model for examining parental processes in pediatric palliative care. In the few studies that address attachment constructs in serious pediatric illness and parental reactions to the child's illness and death, the focus is on adult attachment style (Berant et al., Reference Berant, Mikulincer and Florian2001a ; Reference Berant, Mikulincer and Florian2001b ; Reference Berant, Mikulincer and Shaver2008; Meert et al., Reference Meert, Donaldson and Newth2010; Reference Meert, Shear and Newth2011; Wijngaards-de Meij et al., Reference Wijngaards-de Meij, Stroebe and Schut2007). Although these studies provide insight into the importance of adult attachment style relative to immediate and long-term parental outcomes, they highlight the adult relational or peer/romantic partner tradition and do not focus on the developmental model or nuclear family tradition of attachment. Discussion of the developmental model is crucial to understanding parental internal representations of their child, the child's reality, and the implications for parental caregiving behaviors, parental coping, and parent–child outcomes.
In this paper, we focus on the developmental model of attachment theory as it addresses a number of important parental functions and behaviors that can be observed readily in the clinical setting. The emphasis on the importance of this tradition notwithstanding, selected findings from studies employing the adult attachment model will be addressed, as they serve to inform the use of the attachment model in general and parent–provider functioning in particular.
As referenced in a previous paper describing the development of a parental screening tool in serious pediatric illness (Kearney & Byrne, Reference Kearney and Byrne2011), the developmental attachment framework is contextually relevant across the spectrum of parent–child experience, including a child's life-limiting illness. At the same time, it allows for application of other conceptual frameworks that are significant in this group of parents, particularly the well-studied grief and traumatic stress models (Kazak et al., Reference Kazak, Baxt and Kazak2007; Stuber & Shemesh, Reference Stuber and Shemesh2006). In the current paper, we review the tenets of attachment theory with particular attention to the caregiving system (George & Solomon, Reference George, Solomon, Cassidy and Shaver2008; Solomon & George, Reference Solomon and George1996). In addition, we explore the clinical relevance of these conceptual anchors and their resonance with the extant research in pediatric palliative care.
BACKGROUND
Attention to the psychosocial needs of families as well as communication between families and providers have been emphasized as targeted goals for provision of pediatric palliative care by key national organizations (American Academy of Pediatrics, 2000; Center for Applied Ethics, 2007; National Institutes of Health, 2005; Institute of Medicine, 2004; Malloy et al., Reference Malloy, Sumner and Virani2007). To this end, social attachment theory (Bowlby, Reference Bowlby1969/1980) provides a well-established model for examining parent–child functioning that has relevance across the health and illness spectrum (Marvin & Pianta, Reference Marvin and Pianta1996). This paradigm allows for assessment of parents and children at both the behavioral and psychological levels, informing our understanding of a parent's broader relational sphere. In this way, it may be extended in clinically relevant ways to study the intersection between families and providers.
Foremost among the foundational concepts of social attachment theory, which are central to all work with parents and children, are the notions of the organized attachment and caregiving systems (Bowlby, Reference Bowlby1958; Reference Bowlby1969/1980; George & Solomon, Reference George, Solomon, Cassidy and Shaver2008; Solomon & George, Reference Solomon and George1996) and internal working models (Bowlby, Reference Bowlby1969/1980; Bretherton & Munholland, Reference Bretherton, Munholland, Cassidy and Shaver2008). An understanding of these notions is crucial in clinical parent–child work, particularly in the context of significant impact or threat to the child and family. Other significant concepts are schematically placed within attachment theory and have relevance here. These include parental resolution (Marvin & Pianta, Reference Marvin and Pianta1996; Pianta et al., Reference Pianta, Marvin and Britner1996) and secure-base and safe-haven phenomena (Bowlby, Reference Bowlby1969/1980; Cassidy et al., Reference Cassidy, Ehrlich, Sherman, Mikulincer and Shaver2014; Collins & Feeney, Reference Collins and Feeney2000; Feeney & Collins, Reference Feeney, Collins, Cassidy and Shaver2004). The following paragraphs briefly explain each.
OVERVIEW OF RELEVANT CONCEPTS
The two core systems outlined in attachment theory are the caregiving and attachment systems. These behavioral systems are comprised of parent and child thoughts, feelings, and behaviors, which, over time, are increasingly driven by internal psychological states. These two systems operate with the goal of protection for the child (Bowlby, Reference Bowlby1969/1980; Cassidy, Reference Cassidy2000; Reference Cassidy, Cassidy and Shaver2008). Child and parent attachment/caregiving behaviors will differ based on the child's developmental stage and functional status, real or perceived threat to the child, and parental variables. Both systems are considered relationship-specific between each parent and child.
The attachment system is an infant/child behavioral system that ensures survival of the young by maintaining proximity to the caregiver. The parental caregiving system is complex, flexible, and forms a circuitry with the child attachment system to maintain the welfare of the child (George & Solomon, Reference George, Solomon, Cassidy and Shaver2008; Solomon & George, Reference Solomon and George1996). There is a complex balance between parent and child caregiving and attachment systems, and they have direct behavioral effects on each other. For example, there is a feedback loop in which child attachment behaviors are activated in the absence of caregiving behaviors and vice versa.
Caregiving System
The caregiving system consists of a number of behaviors designed to achieve proximity and comfort to the child in situations of real or potential danger (George & Solomon, Reference George, Solomon, Cassidy and Shaver2008; Solomon & George, Reference Solomon and George1996). The core elements of the system—cognitive, emotional, and behavioral—are in continual interaction. The caregiving system is not only active with respect to protection and care for the child; it is flexible and responsive to myriad competing forces. These include other parental roles and responsibilities, as well as other demands within the caregiving framework (e.g., the care and well-being of the parent's other children). Parents change their behavior continuously based on a balance of internal psychological signals, children's needs, and multiple other demands. However, the caregiving system itself remains organized.
Internal Working Models
The caregiving system, like the attachment system, operates on a psychological level through internal working models (Bretherton & Munholland, Reference Bretherton, Munholland, Cassidy and Shaver2008) of the self and others. Our working models, in large part, consist of mental representations comprising thoughts, affects, and perceptions about ourselves, others, and relationships in general. Internal working models of the self, the child, and the parent–child relationship provide a roadmap for parental behavior within the caregiving system. When these models are challenged or stressed, as they are in a parenting crisis such as the life-limiting illness of a child, they go through a process of change and reestablishment as they incorporate a new reality. Attachment researchers call this achievement resolution (Marvin & Pianta, Reference Marvin and Pianta1996; Pianta et al., Reference Pianta, Marvin and Britner1996).
Resolution
Resolution indicates that a parent has reworked previous internal models of their child to concur with the current realty of their child's condition (Marvin & Pianta, Reference Marvin and Pianta1996; Pianta et al., Reference Pianta, Marvin and Britner1996). Resolution is considered a form of parental psychological coping within the attachment paradigm and has associations with classic coping constructs such as emotion regulation and problem-solving strategies (Lazarus & Folkman, Reference Lazarus and Folkman1984; Lazarus, Reference Lazarus1993). Prior difficulties in a parent's own early attachment system may be elicited during the crisis of a child's illness and impede the parent's ability to resolve their child's diagnosis and illness.
Resolution does not mean that a parent never becomes distressed or is fully accepting of the inevitability of a child's death, but rather that they manage their negative emotions to a useful degree and are not in denial of the situation. When a parent is resolved with respect to their child's illness, they understand the limitations the illness may bring but see the child in totality, not simply through the lens of the illness (Oppenheim et al., Reference Oppenheim, Dolev, Koren-Karie, Oppenheim and Goldsmith2007). Attachment theory and methods allow for assessment of parental resolution during the illness of a child. This conceptual lens provides an innovative approach to develop better clinical understanding of parental adjustment and coping. We are testing this approach by currently conducting a study, the first of its kind, to examine parental resolution during a child's end-of-life period.
Secure Base and Safe Haven Phenomena
Two additional concepts from attachment theory that are relevant to parental behavior and parent–provider relationships are the concepts of secure base and safe haven (Ainsworth et al., Reference Ainsworth, Blehar and Waters1978; Bowlby, Reference Bowlby1969/1980). These concepts were originally formulated as they applied to the actual caregiver–child system, and later in revised ways to close intimate relationships in adulthood (Collins & Feeney, Reference Collins and Feeney2000; Feeney & Collins, Reference Feeney, Collins, Cassidy and Shaver2004). In addition, modifications have been applied to specialized, close therapeutic alliances such as the psychotherapeutic relationship (Mallinckrodt, Reference Mallinckrodt2010; Obegi & Berant, Reference Obegi and Berant2009). We also see their operation in parent–clinician relations, particularly during severe caregiving system crises such as a serious or life-limiting illness of a child, the emergent nature of which often creates a power differential or dependency relationship with providers.
Secure Base
In attachment theory, the “secure base” refers to the use of the attachment figure/significant other as a base or psychological anchor from which to explore the world. In our model, we modify and apply these principles to clinical work in pediatric palliative care and speak of the trusted healthcare provider as a secure base on whom caregivers can rely when faced with healthcare challenges for their child. We propose that, the more the provider can serve as a secure base for the caregiver, the more that caregiver can engage in effective exploration of the difficult options and clinical realities facing them.
Safe Haven
The concept of the “safe haven” in attachment theory refers to the use of the caregiver as a refuge or haven from danger, a safe shelter to retreat to in case of distress, threat, or fear of harm. In our model, we see the emotional presence and availability of the trusted healthcare provider as a safe haven for parents in times of confusion, uncertainty, and duress. Furthermore, we propose that availability of the provider as a secure base and safe haven has positive parental effects that extend far past the child's end-of-life period.
The understanding of these concepts and their complex circuitry is made simpler by framing them through the lens of commonly seen and documented events, behaviors, and practices. In the following sections, we discuss clinical exemplars as well as the extant research and literature that support our use of developmental social attachment theory as a model for understanding parent–child experience in pediatric palliative care.
Parental Behavior and Experience in Life-Limiting Pediatric Illness: Applying Attachment Theory
In order for providers to fully understand parental behavior in serious and life-limiting childhood illness, it is crucial to understand the core operational feature of the caregiving system, which we repeat here: it is activated when there is a real or perceived threat to the child. This sentinel characteristic is fundamental to our current conceptual formulations and has important implications for using them to inform education and training of clinicians as well as our research base. If we understand that this evolutionary system is adaptively built to act under situations of real or perceived threat, we begin to reframe many parental behaviors in normative context with allowance for a broad repertoire that may otherwise have been perceived as maladaptive, inconsistent, or erratic. At the very least, these behaviors begin to make sense within a general conceptual frame that is broad enough to consider healthy as well as pathological parental reactions.
It is also important to understand that parents' internal working models of the child as well as of themselves as parents fuel parental behavior across all contexts. Although amenable to change, these working models are vulnerable to early insults, loss, and difficulties with caregivers in a parent's own early life. At times of stress, particularly in the context of the parent–child relationship, these early insults can elicit parental distress, emotional decompensation, avoidance, immobilization, disorganization, and functional failure. The caregiving system is often stronger in parents who have not experienced significant difficulties with their own caregivers early in life, but such parents can still be overwhelmed by intense threat such as the life-limiting illness of a child. In both these situations, providers need to recognize and identify the problem and take action to bolster the caregiving system.
CLINICAL EXEMPLARS
What is interesting is that clinical practice is often synergistic with the model presented here, but not conspicuously so. Our clear understanding of the underlying principles and the associated rational for clinical interventions requires articulation in order to understand and deliberately influence outcomes. If we can succeed in this, it will allow for advancement of a developmentally sensitive approach to work with parents and families. To illustrate how we might conceptualize certain situations and practices in the pediatric palliative care context from a developmental attachment perspective, we consider the following exemplars.
The importance of collaborative decision making between providers and parents in pediatric palliative care and serious illness is widely acknowledged (Feudtner, Reference Feudtner2007; Himelstein, Reference Himelstein2006; Levetown, Reference Levetown2002). We view this practice within the purview of attachment theory as a necessary support of adaptive caregiving system functions. This is an activity that allows parents the opportunity to fulfill their executive caregiving function as protectors and guides for their children, particularly during times of danger. When we do not allow parents this opportunity to actively join with us in directing their child's care by giving them clear information, support, respectful attention, and space to do so, we interfere with this fundamental, instinctual goal-directed function of the system. By working against this basic caregiving system need, we immediately create heightened risk of caregiving system perturbations or, ultimately, failure. We may find ourselves at an impasse with parents who are instinctively responding to, but not quite fully understanding, what they perceive as a new level of threat in the environment that is now superimposed on the child's illness. This new situation might best be called “provider as threat,” where the provider is perceived as threatening and thwarting the natural process of parental protection.
In another common practice, providers often make every effort to involve parents in making decisions while supporting and helping them with the actual care of their child, no matter how complex, to the extent the parent is able and willing. The parent's natural inclination to increase caregiving, physical closeness, and contact with a child during serious and life-threatening illness has been documented in other literature (Jones, Reference Jones2011) and is significant in that it addresses one of attachment theory's central mandates of the caregiving system: that the parent maintain proximity to the child under conditions of threat (Bowlby, Reference Bowlby1969/1980; Cassidy, Reference Cassidy2000; George & Solomon, Reference George, Solomon, Cassidy and Shaver2008; Solomon & George, Reference Solomon and George1996). This includes psychological proximity or emotional presence when the parent is incapable of providing actual physical care. Thwarting the goal-directed nature of this core principle only adds to the family's suffering and places the provider himself at risk for heightened stress and suffering. When a provider does not make every effort to acknowledge this principle and act accordingly, we might well say that he or she is “swimming against the current.”
Additionally, consider the clinical situation where parents' statements and behaviors may appear contradictory regarding a child's treatment. They may seek out numerous opinions, often changing course unpredictably. This can leave providers feeling confused, helpless, or frustrated, which can lead to failures in communication and standoffs between parents and providers. How do we interpret this behavior from the vantage point of social attachment theory? We start with the premise that, in most relatively normal caregiving systems, the system functions in the service of its primary reason for being, that is, protection of the child. To this end, this type of clinical situation resonates with Bluebond-Langner's (Bluebond-Langner et al., Reference Bluebond-Langner, Belasco and Goldman2007) maxim that parents will leave no stone unturned when faced with the possibility of their child's death. In a normative context, parents will do whatever they perceive must be done to protect and save their child, and they will do so in multiple ways and with whomever they believe can help them. They do not do this because they are “difficult”; they do it because from the caregiving system imperative the drive to protect their young is their supraordinate function.
Moreover, these situations require us to consider the issue of parental resolution, which serves to mediate caregiving system functions and parent–child outcomes and, by extension, to parent–provider outcomes as well. Those parents who are resolved may still actively look for all help and signs of hope but gradually come to an understanding of which interventions are in the best interests of and meet the very specific needs of their child. This is not to be confused with complacency; it simply means that they can, over time, process the reality of the situation. We must realize that this is a progressive journey, a psychological passage, which may take some time and sensitive intervention on our part. It is our position that providers must be educated and inform their practice from this posture. In doing so we may see greater family and provider satisfaction.
In situations where parents are clearly unresolved with respect to their child's illness, internal working models are persistently out of line with the reality of the child's situation and caregiving behaviors are problematic. Parents may behave in noncontingent, disorganized, or otherwise unhealthy ways toward their child and the providers. Many of these parents are compromised by their own past and/or current histories of trauma; some have psychiatric disorders, while others are severely burdened by social isolation and severe, chronic stress. In each case, parents may be immobilized by the crisis of their child's illness. They may avoid decision making, distance themselves, or engage in highly conflictual relationships with providers and, most disturbingly, create distress in, or avoid and distance themselves from, the child. In situations such as these, the caregiving system is clearly fragile or in danger of complete collapse, attempting to cope and defend against overwhelming internal threat. Supportive mental health interventions should be used here in order to maximize the parent's chances of adaptation and the child's experience of a good death. Current anecdotal work supports the importance of mental health providers as part of the treatment team, and further study of their clinical intervention strategies with respect to the caregiving system is necessary (Wolfe et al., Reference Wolfe, Grier and Klar2000a ; Reference Wolfe, Klar and Grier2000b ).
Alternately, perhaps by all accounts the parent appears to be resolved with respect to their child's illness but is turning away from or, at the very least, evidencing diminished involvement with their child. This has been discussed in the literature as it relates to coping and trauma in parents (Jones, Reference Jones2011). However, there is a basis for examining this behavior in the attachment model as it specifically pertains to the operation of the caregiving system. Since the caregiving system is, of necessity, flexible as it deals with a number of competing demands, it sometimes happens that a parent is overwhelmed by these demands, as they stand in stark relief against the likely loss of the ill child. Consequently, a parent may then focus or refocus on their other children. In evolutionary terms, we would say that the parent is maximizing the chances for survival of one offspring in the face of the loss of another. In more proximal terms, the parent is marshaling what psychological and physical resources they have to deal with the reality of the situation and move forward to parent their healthy children, who also need them. In many cases like this, we may see some degree of this behavior rather than absolute abrogation of the child on the part of the parent. Other authors have noted the ebb and flow quality to the behavior (Jones, Reference Jones2011). Of course, this sort of behavior is multidetermined and cannot be assessed with any degree of accuracy if all variables are not considered. It requires that the clinician fully understand the motivations, competing systems, coping status, and stress response behaviors of the parent.
For all of these examples and the myriad others that present themselves, we need to understand the pathways and mechanisms by which caregiver behavior achieves relative levels of success or failure in its core functions. We can then forge informed alliances with parents that reinforce or help to modify the caregiving system, bolstering it when necessary and, in many cases, allowing it to remain intact. The vehicle for this is the relationship with providers. This is clear to us in our analysis of current descriptive research and is in keeping with current research and theory on attachment (Browning, Reference Browning2002; Heller & M. Solomon, Reference Heller and Solomon2005; Kreicbergs et al., Reference Kreicbergs, Valdimarsdottir and Onelov2004; Reference Kreicbergs, Valdimarsdottir and Onelov2005; Reference Kreicbergs, Lannen and Onelov2007).
PSYCHOSOCIAL RESEARCH IN PEDIATRIC PALLIATIVE CARE: ILLUSTRATING CAREGIVING SYSTEM OPERATIONS
There are numerous qualitative findings in the pediatric palliative care literature that describe the importance of parental behaviors that, although not presented as such, are clearly elements of the caregiving system repertoire. In this section, we present representative psychosocial research in pediatric palliative care and interpret it as it reflects the paradigm we present in this paper. This research coalesces around a few important areas that overlap and are interrelated: parental psychological risk and long-term negative sequelae post-bereavement, parent–provider relationships, and parental coping and behavior during the child's illness. We discuss these in an integrated manner, as they impact each other and are often studied relative to one another, and we show how they ultimately reflect the principles from attachment theory outlined herein. Within these general categories, we see the importance of caregiver system function support, including the all-important protective function, the enduring nature of the attachment bond, the need for provider as secure base and safe haven, the issue of resolution, and adult attachment style as it impacts parental functioning.
Parental Psychological Risk and Long-Term Negative Sequelae
The existing research reveals a profile of continuing risk for bereaved parents with high physical and psychological morbidity and mortality rates, including unresolved or complicated grief, depression, and PTSD or trauma symptoms (Hagedoorn et al., Reference Hagedoorn, Kreicbergs and Appel2011; Li et al., Reference Li, Precht and Mortensen2003; Rosenberg et al., Reference Rosenberg, Baker and Syrjala2012; Reference Rosenberg, Dussel and Kang2013). Descriptive qualitative studies with these parents reveal their retrospective emphasis on the importance of caring for and protecting their dying child in the context of a sensitive, communicative relationship with providers (Hinds et al., Reference Hinds, Oakes and Hicks2009; Hinds et al., Reference Hinds, Schum and Baker2005; Kars et al., Reference Kars, Grypdonck and van Delden2011). These interview data show that parents focus on and repeatedly state the importance of knowing that they have protected and done everything possible as parents for their child. Parents talk about wanting to know that their child knew how much they loved them, and that others knew they tried to be “good” parents, a role that includes advocacy, role modeling, and engaging in effective decision making. Moreover, these parents reported that they wanted assurance that providers made all attempts possible to save their child in the most beneficial way to the child.
In one particularly poignant finding, parents whose children suffered unrelieved physical pain during the end-of-life period are a group at heightened long-term risk (Kreicbergs et al., Reference Kreicbergs, Valdimarsdottir and Onelov2005). We see here that, even when death is certain, the parent's charge is to protect. In this case, it is the wish to protect against suffering, a commonly observed parental goal in pediatric end-of-life care (Edwards et al., Reference Edwards, Neville and Cook2008). When this is unsuccessful, the caregiving system is adversely impacted, which reverberates into the future.
In these data, we see a focus on the central protective function as well as those supportive executive functions that are components of an effective caregiving system. These elements include instrumental, protective, and executive (decision-making) caregiving functions (Bluebond-Langner et al., Reference Bluebond-Langner, Belasco and Goldman2007; Hinds et al., Reference Hinds, Schum and Baker2005; Hinds & Kelly, Reference Hinds and Kelly2010; Hinds et al., Reference Hinds, Oakes and Hicks2009) that encompass the range of parental activities and operate with the ultimate goal of ensuring the welfare and protection of the child (Cassidy, Reference Cassidy2000; Reference Cassidy, Cassidy and Shaver2008; George & Solomon, Reference George, Solomon, Cassidy and Shaver2008). We see this over the continuum of the child's illness and through to the bereavement period and beyond, reflecting the enduring nature of this bond with the child.
Parent–Provider Relationships and Parental Coping
Bereaved parents emphasize the importance of a consistent, caring relationship with their child's providers during their child's end-of life-period (Heller & Solomon, Reference Heller and Solomon2005; Solomon & Browning, Reference Solomon and Browning2005). Staff presence and sensitive support during this time have been associated with better long-term outcomes for parents. Conversely, enmeshed or avoidant relationships between parents and providers are associated with poor parental coping during the child's end-of-life period. This association extends to provider coping outcomes as well.
For example, in the absence of a supportive relationship with the provider, parents report post-bereavement frustration and mistrust regarding the quality of care their child received (Heller & Solomon, Reference Heller and Solomon2005). In addition, their perception of insensitive, uncaring, or insufficient provision of information by providers left them with heightened emotional distress during bereavement (Contro et al., Reference Contro, Larson and Scofield2002). The importance of this supportive relationship with providers is clear in published interviews with bereaved parents. In one such interview, we can see the intimacy with which a parent views this critical relationship, referring to the team as “family” (Jones et al., Reference Jones, Gilmer, Parker-Raley, Wolfe, Hinds and Sourkes2011, p. 145). We saw this in our research as well. Indeed, we propose that providers become a family of sorts in this situation, providing a safe and consistent holding environment for parents and therefore knowingly, or not, a secure base and safe haven.
These findings illustrate the importance of a strong parent–provider bond, one on which a parent can rely during this most severe challenge and one in which they can find psychological safety and sensitivity to their child and themselves. This bolsters the caregiving system to the extent that it allows for better parental coping during the child's end-of-life period and promotes long-term adjustment. Furthermore, it appears to benefit providers as well. In these data, we see the operation of secure-base/safe-haven phenomena as they drive coping outcomes.
A parent's realistic acceptance of their child's illness is also a predictor of coping outcomes. Unresolved grief and continuing high-level distress in parents of children with life-limiting illness is a risk factor for long-term maladjustment (Kreicbergs et al., Reference Kreicbergs, Valdimarsdottir and Onelov2005; Reference Kreicbergs, Valdimarsdottir and Onelov2004; Reference Kreicbergs, Lannen and Onelov2007; Rosenberg et al., Reference Rosenberg, Baker and Syrjala2012; Sloper, Reference Sloper2000). In contrast, parents who absorb or appropriately process the information they are given regarding their child's status are better able to cope (Lannen et al., Reference Lannen, Wolfe and Mack2010). In these findings, we see elements of resolution, which may be loosely thought of as “coming to terms” with the situation (Hinds et al., Reference Hinds, Birenbaum and Clarke-Steffen1996), an idiom often used in the pediatric literature. In addition to emotion regulation and problem-solving strategies, resolution has links to newer conceptualizations around positive coping and meaning making (Folkman, Reference Folkman2008; Reference Folkman2010; Park, Reference Park2010). Those parents who engage in meaning-focused coping, which includes benefit finding, goal revision, and the reordering of priorities (Folkman, Reference Folkman2008), are better equipped to process the situation and cope over the long term (Wu et al., Reference Wu, Bonanno and Duhamel2008). These data, with their correlations to the resolution construct in attachment literature, are most likely tapping into related processes through a different conceptual and measurement lens.
One last area of research with clear associations to the attachment model in pediatric palliative and end-of-life care is that concerning the findings regarding adult attachment patterns and parental behavior. Of particular interest is their relevance to parental behavior and coping over the continuum of the child's illness and the bereavement period. Adult attachment patterns are proposed as grounded in early relationships with caregivers, which then shape our expectations and experiences in adult relationships (Hazan & Shaver, Reference Hazan and Shaver1987; Reference Hazan and Shaver1994; Shaver & Clark, Reference Shaver, Clark and Masling1994). They are seen as related to those seen in young children and are categorized using the same terminology. Although not orthogonal with respect to the developmental model, the adult attachment literature has developed somewhat separately and employs a different measurement framework than developmental attachment theory. This model uses adult self-report questionnaires that tap into styles of relating and one's beliefs about their significant relationships. The behavioral component of adult attachment style (secure or insecure) is seen in various contexts, but especially during times of stress when important others are seen as available, or not, for support and safety (Mikulincer & Shaver, Reference Mikulincer, Shaver and Zanna2003). Secure parental style is associated with effective distress management during the serious illness of a child as well as the ability for positive self- and situation appraisal and active support seeking. The secure pattern is seen as protective for coping (Mikulincer & Shaver, Reference Mikulincer, Shaver and Zanna2003; Reference Mikulincer, Shaver and Baldwin2005; Reference Mikulincer and Shaver2007). Conversely, insecure attachment style (i.e., anxious or avoidant patterns) has been associated with decreased resilience, including complicated parental grief reactions, guilt, negative self-appraisal, and negative psychological sequelae and marital distress over the long term (Berant et al., Reference Berant, Mikulincer and Florian2001a ; Reference Berant, Mikulincer and Florian2001b ; Reference Berant, Mikulincer and Shaver2008; Meert et al., Reference Meert, Donaldson and Newth2010; Wijngaards-de Meij et al., Reference Wijngaards-de Meij, Stroebe and Schut2007). We see here cross-linkages with the conceptual anchors from developmental social attachment theory—particularly resolution, secure-base and safe-haven phenomena, and their importance for coping outcomes.
In examining these findings, it is important to note that these parental styles also extend to provider relationships. A parent who is highly dependent and immobilized by their distress presents a different challenge from one who appears to be in total control, quite cerebral, or dismissive of emotion. We are currently engaged in a preliminary study to examine these patterns and their associations with other known risk factors in this group of parents. Moreover, these adult attachment styles also characterize providers, thus adding another layer of complexity. However, it is our belief that providers can be taught and mentored in this regard, allowing them to monitor and understand these processes and intervene in clinically adaptive and positive ways with parents regardless of pattern.
CONCLUSION
We have presented an overview and discussion of attachment theory as a framework for research and practice in pediatric palliative care. The innovation of this approach lies in its application of a contextually relevant framework to the study of a critically significant area of child and family health with considerable immediate and long-term impact.
A dynamic system of parent–child processes, external forces (including interactions with healthcare providers and systems), and clinical realities are synergistic and create each family's “story” during a child's illness and end-of-life period. Moreover, they co-create the larger story, including the internal and interactive experience of providers who work with each family. According to the attachment model, all interactions and relationships bring with them an underlying organic tapestry of our own relationship experiences and attachment history, which serves to model and direct behavior. This is highly significant in that, as we begin to understand these principles, we also begin to understand not only our patients' behaviors but our own, even in the clinical setting, which has often been considered separately from our outside social functioning. This understanding is crucial to building consistently “present” relationships with families.
The promise for developing integrated, conceptually based interventions from construction through implementation is of urgent importance to these children and families. Systematically focusing on key parental behaviors and processes will inform this task. Parental characteristics and behaviors of particular significance for clinical intervention within the attachment framework presented here include internal models and resolution, secure-base and safe-haven behaviors, and attachment style, as well as relevant coping strategies. Examining these constructs and their clinical relevance offers an innovative, conceptually sound approach through which we can build our empirical base, inform our practice, and, most importantly contribute to the well-being of these children and families.
