10 Family Experience and Relationships

Kim Mooney-Doyle, Meghan L. Marsac, Elissa G. Miller, Janet A. Deatrick, and Melissa A. Alderfer

Families are crucial to the development, well-being, and health of children. When a child is diagnosed with a serious medical condition, all members of the family, as well as the overall functioning of the family, are affected. The delivery of effective family-centered pediatric palliative care requires attention to the family experience of the diagnosis, treatment, and course of the medical condition, as well as the impact of these factors on family relationships and functioning.

While the role of the family may shift and change over time, seriously ill children generally depend on their family for physical care, medical decision-making, implementation of treatment plans, and emotional support. As a result, the ways in which a family responds to a serious pediatric health condition affects the ill child’s experience with healthcare and health outcomes.^2,3 Stable and secure family environments support behaviors needed for appropriate management of the condition, help buffer negative emotional reactions to the illness and treatment, and ensure that normative developmental goals are accomplished by the family and its members. For example, adherence to treatment and medical outcomes are better for children with serious illnesses when families function well.⁴ Red flags in family functioning include difficulty problem-solving and/or managing and integrating the treatment regimen into daily routines; poor communication, oversight, and monitoring; and family relationships characterized by conflict, hostility, and emotional overinvolvement.^5,6,7,8,9 In short, the health and well-being of children with serious illness are inextricably woven into the functioning of the family system while the child’s medical condition and its treatment impacts the functioning of the family.

The overall purpose of this chapter is to describe the experiences of families throughout their child’s illness trajectory and to outline the implications of these experiences for the delivery of pediatric palliative care (PPC). The chapter begins by describing three guiding frameworks that can help conceptualize the experience of the family at different levels. First, the social ecology model provides an overarching framework for understanding the various social systems within which a developing child is embedded and with which their family interacts. How this framework applies specifically to children with serious illness and their families is explained. Second, family systems theory is described with reference to specific models of family functioning in the context of serious pediatric illness. These models provide guidance regarding important aspects of family functioning and describe patterns of family-system level responses across time. The third model places the focus on individual family members and their relationships with one another within the frameworks of loss and traumatic stress. While presenting these conceptual models, the chapter presents examples from the empirical literature illustrating the impact of serious pediatric health conditions on the family members and the family system. Finally, the chapter concludes by presenting implications of these models and the empirical evidence for the delivery of trauma-informed, family-centered PPC.

A substantial body of literature supports the value of using the social ecology model to organize our understanding of the experiences of families of children with serious medical conditions.^10,11 This model provides a theory-based framework for understanding how different layers of social systems impact the everyday lives of children and their families. According to the social ecological model, the development of every child is influenced by personal characteristics (e.g., gender, biological predispositions, thoughts, beliefs, and behaviors), social settings, and contexts in which they are embedded.¹² Bronfenbrenner’s model defines four layers of social systems that impact the developing child differentially across time and the child’s life span. These systems are referred to as the macrosystem, exosystem, mesosystems, and microsystems (Figure 10.1).

The broadest context in which the child is embedded is termed the macrosystem and is defined by the society and culture in which the child lives. Examples of macrosystem influences include cultural and ideological values and forces (e.g., individualism, systemic racism), the global and national economy, health, housing, education and public policy (e.g., universality of healthcare), and governmental regulations and law. Of special concern for children with serious medical conditions are the social determinants of health and the structural impediments (e.g., health policy, racism, health inequities) that influence the health outcomes of children.¹³ More proximal to the developing child is the exosystem, those social systems with which the child may not have direct day-to-day contact but that impact the child in a broader way. For example, these social systems include the parent’s workplace (e.g., benefits, leave policies), mass media, and community resources (e.g., local economics, availability of fresh food, neighborhood safety). Recent attention to the social determinants of health (Figure 10.2)¹³ focuses on factors acting on the health of individuals arising from the macro- and exosystems. There is increased awareness of these forces and the belief by some that they may be of equal or greater importance than biological mechanisms for preventing and treating disease.¹⁴

The microsystems most proximal to children (i.e., the ones in which children are embedded and interact regularly with) include their family, school, and peer group, among others. These microsystems and the individuals within them influence and are influenced by the developing child in a reciprocal fashion. When a child has a serious illness, the hospital or healthcare team becomes a microsystem within which the child develops.^10,11 Finally, mesosystems are conceptualized as linkages between microsystems. Examples of mesosystems include the extent to which the family and school communicate and work together to foster the child’s development or the degree to which the healthcare team and family work together in a family-centered way to meet the needs of the ill child. These connections between microsystems are important in the coordination of efforts to promote better child outcomes.

The following vignette provides an account of a family’s experience after the birth of a child with a severe form of congenital heart disease. The case illustrates that as a child with a serious illness grows and develops, changes happen within the child (e.g., desire for autonomy, failing health) and within their environments.¹² Individuals who have a direct influence on the child and who are influenced by the child exist within microsystems. The family system (e.g., JJ’s mother and sibling), school setting and peer network (e.g., JJ’s teacher and friend), religious/community organizations (e.g., JJ’s family pastor), and healthcare teams are examples of these microsystem environments. Mesosystems are important in the coordination of efforts to promote better outcomes (e.g., family and home hospice regarding symptom management). Finally, aspects of the exosystem (e.g., closest major hospital 2 hours away) and macrosystem (e.g., health insurance tied to employment; high healthcare cost) also have a significant impact on families.

As illustrated by the quotation that opens this chapter, family microsystems can vary greatly. The composition and structure may vary substantially from one family to the next or within a family over time. In addition to biological, adopted, extended, and step relatives, families may include friends and “created” relatives including important community members such as religious leaders or educators. Families may also be termed multigenerational or transracial; parents may be termed single or partnered; partners may be cisgender, same-sex, or nonbinary.^15,16 The composition and structure of the family may change day to day, depending on the challenges they face and the resources that they need to meet those challenges. When caring for children with serious illness, it is important not to make assumptions about who is considered family or how the family is organized. Each child and caregiver should be asked who they consider to be family.

Family systems theory views families as operating like biological systems: organized units with component parts (members), interacting in relation to one another in rule-governed patterns. Families are comprised of a collection of individuals, each with his or her own biological predispositions, attitudes, characteristics, and personal histories. These individuals interact with one another in specific subsystems within the family defined by specific roles. Each individual has a specific role within each subsystem and may hold multiple roles simultaneously (e.g., partner and parent; son and sibling). Individual family members are interdependent, such that a change in one family member has an impact on all other family members and the family system. As with any system, families self-regulate to maintain stability while also accommodating changes in individuals.^17,18,19 The process of altering the composition, organization, and/or structure of the family requires flexibility, open, clear communication, renegotiation of roles and responsibilities, and effective management of the emotional turmoil that these changes can produce. To understand the family experience of serious medical conditions, it is important to conceptualize the impact on individual family members, their relationships, and the functioning of the family as a whole.

Serious Illness in Children: A Need to Reorganize the Family System

The impact on roles, responsibilities, relationships, and the structure of the family when a child is seriously ill has been well-documented in the qualitative literature. The most obvious change to the structure of the family is the need to fulfill a new role: medical caregiver. Often a responsibility of parents, medical caregiving includes a range of responsibilities from learning about the condition, making medical decisions, scheduling and attending medical appointments, negotiating with healthcare providers, managing treatment, considering treatment pathways, ensuring adherence, arranging ancillary services (e.g., therapies, educational plans), and optimizing physical and psychosocial outcomes. Some aspects of medical caregiving may be spread across family members and fall to siblings²⁰ or extended family members. Of note, families comprised of single parents or lone caregivers (those with no secondary caregiver or support) face particularly great difficulties in fulfilling the medical caregiver role.²¹

Other organizational changes within the family may include expanding the family to help manage the increased needs resulting from a new serious illness. Families may enlist extended family to care for sibling and friends and community members to provide meals or help with other tasks. Modifications to household rules such as laxer parenting, and changes in relationship patterns such as closer bonds being formed between the primary caregiver and the patient may also occur.^20,22,23 The qualitative studies that produce such findings attest to the need for families to adjust daily life to accommodate the demands of a child’s illness and treatment.

Quantitative research has found that roles are less clear and more difficult to establish and maintain when a family member is ill. These patterns have been documented in families of children with diabetes,²⁴ spina bifida,²⁵ and pediatric cancer.²⁶ Some evidence suggests that families managing illness are likely to be dysregulated in terms of their flexibility. Families of children with cancer are more likely than those with healthy children to be either chaotic (very high in flexibility) or rigid (very low in flexibility).^27,28 Families of children with diabetes have been found to be more rigid than is the norm²⁹ and to become less flexible across the first few months after diagnosis.³⁰ What remains unclear is whether these differences are truly “dysfunctional” or if they are adaptive in the process of ensuring that the medical needs of the child are being met.

Serious Illness in Children: Impact on the Emotional Climate of the Family

The emotional climate of the family refers to the degree of their connectedness and emotional closeness (cohesion), the extent of emotional expression and responsiveness (affective involvement), and the amount of conflict. Many families affected by childhood serious illness report a sense of increased emotional closeness and cohesion. That being said, family reactions to illness are actually quite variable, both within and across families; reports of increased sibling rivalry and family conflict have also emerged.^20,31 For example, Blair, Freeman, and Cull found that families of children with cystic fibrosis were more emotionally involved compared to families with healthy children.³² Families of children with diabetes³³ and cancer³⁴ show higher than average levels of cohesion shortly after diagnosis and throughout the illness. Increased cohesion is a common theme in qualitative studies of families of children with cancer.³⁵ A meta-analysis of the influence of pediatric cancer on family functioning revealed higher levels of maternal-reported conflict in these families compared to those families with healthy children.³⁶ Similarly, Liakopoulou and colleagues observed mothers of children with diabetes to express more critical comments, hostility, and overinvolvement with their children.³⁷ Greater difficulties in affect management, affective responsiveness, and affective involvement have been reported for families of children with diabetes²⁴ and adolescent cancer survivors.²⁶ It is important to pay attention to the family’s emotional climate (i.e., conflict, cohesion, and emotional expressiveness) as it has a demonstrated effect on child psychological health.^38,39 In sum, although families of children with illness seem to be more emotionally connected, they may also experience difficulties managing appropriate levels of affective involvement and responsiveness and may be prone to conflict.

Communication is a key component of family functioning.⁴⁰ Communication, both verbal and nonverbal, is the means through which roles and responsibilities are negotiated and agreed upon; relationships are established, maintained, and changed; emotional needs are expressed; and support is provided. Overall, difficulties with communication within the family impact the health and well-being of all family members.^38,41 The way a family communicates about a child’s serious illness can impact the formation of goals of care, decisions regarding care, and how they survive the threatened or actual death of the child. In the following quote, we see how a sibling’s understanding of a child’s illness and prognosis unfolds and is shaped by parents’ nonverbal communication.

While children and adolescents describe wanting honest communication about their disease or their sibling’s disease,^43,44 many families face barriers to this disclosure. Families may have unofficial rules about what topics are taboos (e.g., death) and with whom such topics can be discussed (e.g., discussion limited with children). These rules can become barriers to important conversations because particular topics may be disallowed for fear of diminishing hope, increasing burden, or fueling conflict.⁴⁵ Other barriers to communication may arise out of specific challenges related to the child’s illness.⁴⁶ For example, the physical separation engendered by extended hospitalizations may impact the opportunity for family conversations. Finally, family may have limited knowledge about children’s developmental understanding of serious illness and death. They may not know what to say in such a conversation with their children.

Loss and Traumatic Stress: Impact on Individual Family Members and on the Family as a Whole

A wealth of research shows that the diagnosis of a medical problem in a child causes enormous distress for family members and that the death of a child is one of the most difficult experiences a family can face.⁴⁷ Generally, distress is greatest at the times of diagnosis and then at the child’s death. This distress typically diminishes with time,^30,48 although for some individuals, it may persist long term.⁴⁹ Those individuals who experience more anger and negative appraisals may be more at risk for persistent distress; additional factors that are associated with increased long-term distress include ongoing health and financial challenges.⁵⁰ Central to the experience of individual family members are the concepts of loss and traumatic stress.

When a child is seriously ill, the threat of loss becomes the defining framework for the family’s experience (as well as for the child’s). Day-to-day losses may include loss of perceived “normalcy,” loss of family and child developmental milestones, and loss of feelings of security. Such ongoing losses, both small and large, impose a cumulative burden that gradually erodes hope and shapes worries. The story of Baby S highlights a few of the many losses the family had to grieve, including their birth plan and expectations for their child.

When a child dies, the family faces the ultimate loss—as well as their image for the future of their family.⁵¹ Grief becomes a defining emotion, pivotal to their experience. Although loss and grief impact the family as a unit, they are also experienced individually by its members within the context of family relationships.

Some families, or individual members, may seek to make sense of and find meaning in their child’s death. This process may result in positive understanding (e.g., posttraumatic growth, benefit finding), negative understanding (e.g., non-benefit finding; “this is an insurmountable tragedy”), or neutral understanding (e.g., “brain tumors just happen”) of their family’s new realities.⁵²

There is growing recognition of the potentially traumatic impact of life-threatening illness on the child and family. Models of traumatic stress have emerged as useful frameworks for capturing the range of their responses. Pediatric medical traumatic stress (PMTS) is defined as “a set of psychological and physiological responses of children and their family members to pain, injury, serious illness, medical procedures, and invasive or frightening treatment experiences.”⁵³ PMTS symptoms include intrusive thoughts, hyperarousal, avoidance of trauma-related stimuli, and negative thoughts or feelings. More specifically, PMTS may include negative emotional reactions (e.g., guilt, sadness, anger, complicated grief), physical symptoms (somatic complaints, sleep difficulties), cognitive disturbances (intrusive thoughts or memories, dissociation, difficulty concentrating), and behavioral issues (poor school or work performance, risky actions). It can also involve difficulties within social or interpersonal relationships.⁵⁴

The latest revision of the Integrative (Trajectory) Model of PMTS illustrates and emphasizes different trajectories of PMTS response over time.^55,56 Informed by recent longitudinal studies, the updated model proposes four possible trajectories of PMTS: Resilient, Recovery, Chronic, and Escalating (Box 10.1).

It is important to note that this model was not developed specifically for those individuals and families facing the unique challenges of life-threatening illness. Thus, while it may elucidate some of the child and family’s emotional reactions, it does not fully account for the depth of anticipatory grief, including the child’s, or the long-term grief that becomes part of a family’s journey.

The Impact of a Child’s Serious Illness on Parents/Caregivers

When a child has a serious medical condition, the stress of supporting the child, worrying about the child’s health, managing complex medical regiments, maintaining typical caregiving roles, and making medical decisions can take a toll on caregivers. Although research that focuses specifically on families who have a child who is currently receiving palliative care services is somewhat limited, PMTS symptoms have been documented within family members of patients experiencing a range of serious medical conditions (e.g., cancer, injury, diabetes, asthma, and congenital heart disease). Across these diagnoses, approximately 30% of caregivers experience moderate to severe PMTS,⁵⁵ with higher rates near the time of diagnosis. For example, within 1 month of diagnosis, about 60% of parents of children with diabetes meet clinical cutoffs for depression and anxiety,⁵⁷ and 40–50% of parents of children with cancer qualify for a diagnosis of acute stress disorder.⁵⁸

Many parents report long-term effects of losing a child, regardless of the cause. For example, parents may experience posttraumatic stress (PTS) reactions,^59,60depressive symptoms, diminished overall well-being, and health problems.⁶¹ In a study of 872 parents, 59% reported high levels of complicated grief symptoms 6 months after their child’s death in the pediatric intensive care unit (PICU).⁶² However, some parents may experience posttraumatic growth following the loss of a child: in a recent systematic review of 13 articles, Waugh and colleagues concluded that mothers identify more growth than fathers, that culture may play a role in the experience of growth, and that growth is often identified after some time has passed. Domains of posttraumatic growth included changes in self-perception, relationships, recognizing new possibilities, an appreciation for life, and existential views (i.e., “changes in how living in the world is viewed and understood”)⁶³ (see Chapter 15).

When a child has a serious illness, the roles and responsibilities of being a parent change. Parents describe a new definition of “Being a Good Parent” when their child is seriously ill and strive to achieve this definition.^{51,64,65,66,67} For example, parents of children with advanced cancer described that a “good parent makes informed, unselfish decisions in the child’s best interest; provides the basics of food, shelter, and clothing; remains at the child’s side regardless of circumstances; shows the child that he or she is cherished; tries to prevent suffering and protect health; teaches the child to make good choices, to respect and have sympathy for others, and know God; advocates for the child with medical staff; and promotes the child’s health.”^{66(p. 5982)} Parents also talk about the need for “intense parenting:” the evolving, laborious roles that parents assume at home in caring for their ill child, including the ability to be ready to provide care at a moment’s notice.⁶⁸ This provision of extensive, intensive care means that parents have less time to address other important facets of life, such as their own health, relationships with partners, and a social life. They devote their time and energy to ensure their child’s health, safety, and quality of life while acting in the role of nurse, case manager, teacher, and advocate in addition to loving parent.

When the family has multiple children, as parents learn to parent the seriously ill child, they are simultaneously adjusting and relearning their approach to parent the healthy siblings. Parents may have similar overall goals or beliefs about what is important in being a parent to both their seriously ill and healthy children. For example, parents describe that it is most important that all their children know they are loved; in particular, they do not want healthy siblings to feel neglected. They also want to minimize disruption for the siblings, maintain normalcy, and promote their health.⁵¹ Parents describe trying to juggle competing demands as a process of trading-off one child’s needs over those of another, with those of the ill child frequently taking precedence. For example, a parent may want to attend a sibling’s sporting event but fears leaving the ill child unattended. The discrepancy between what parents want to do and what they can do may be a source of significant distress.^69,70,71

In families with two adults in a partner relationship, the child’s illness impacts their identity and functioning as a couple. While not broadly studied, a systematic review of couples’ functioning after a diagnosis of pediatric cancer indicated that most couples adapt well across domains such as emotional closeness, marital support, marital satisfaction, and general marital adjustment. However, they can be challenged by issues related to marital conflict, communication, and sexual intimacy.⁷² In exploring family functioning and risks to the couple relationship in families caring for a child with serious congenital malformations, Brenner and colleagues found that families do not seem to be at greater risk for dysfunction or separation over the first several years of the child’s life. However, couples experienced greater challenge and risk when the child with the congenital malformation was a second or subsequent child.⁷³ Thus, factors internal and external to the relationship can impact the health of the couple’s relationship. Research suggests that it is important to address the couple’s dyadic coping with stressors, given the potential impact on overall family health and care of the ill child and siblings.^74,75,76 Such assessment is called for in recent standards for psychosocial assessment.^77,78

In two-parent families, both parents are often involved in the medical caregiving of the child. The quality of the relationship between parents is of vital importance as they negotiate the challenge. Typical areas of discordance include differences of opinion about the child’s care, worries about the child’s care in the future, and how past interpersonal conflicts or unfulfilled needs complicate the present situation.⁷⁹ At their child’s end of life, parents in medical caregiving roles may have different goals. While it is common for goals to change between the time of illness diagnosis and end of life, the relationship between parent caregivers becomes complicated when one parent changes their goals and the other parent does not⁸⁰ (see Chapter 15).

The Impact of a Child’s Serious Illness on Siblings

Recent estimates indicate that more than two-thirds of children receiving palliative care services have at least one sibling.⁸¹ Thus, if there are nearly 400,000 children who would benefit from palliative care, there are at least 250,000 children facing the possible death of their brother or sister.⁸² A recent meta-analysis found that siblings of children with chronic health conditions are at greater risk for emotional and behavioral problems than siblings of healthy brothers and sisters.⁸³ These negative effects were more pronounced for siblings of children with life-threatening or highly intrusive conditions than for siblings of children with less severe conditions.⁸³ Systematic reviews of the literature regarding siblings of children with cancer^84,85 reveal that siblings may experience poor quality of life in emotional, family, and social domains; school problems including poorer academic functioning and more absenteeism; and strong negative emotions (e.g., shock, fear, worry, sadness, helplessness, anger, and guilt). While rates of psychiatric disorders such as generalized anxiety disorder and major depression are not usually elevated, symptoms of worry and sadness are common, and many siblings report high rates of cancer-related PTS. In one study, two-thirds of siblings of children with cancer within 3 years of diagnosis reported moderate to severe levels of cancer-related PTS, and a quarter met diagnostic criteria for posttraumatic stress disorder.⁸⁶A recent review of the literature regarding siblings of children with congenital heart disease also documented parent reports of increased symptoms of anxiety, depression, anger, and behavioral problems in siblings, along with declines in school performance.⁸⁷ However, despite the challenges that siblings of children with serious medical conditions may face, new research has highlighted some potential positive outcomes: one pilot study found that approximately 75% of siblings of children with cancer exhibited a resilient or recovery trajectory of PMTS, with 25% experiencing chronic or escalating symptoms.⁸⁸

Studies of bereaved siblings indicate that up to 50% can have prolonged grief disorder, and 10–50% meet criteria for posttraumatic stress disorder.^89,90 Furthermore, bereaved siblings experience particular physical,^91,92 psychological, and social risks including anxiety, depression, substance abuse, academic performance concerns, and emotional distress.^93,94 These risks increase when the seriously ill child’s life is at grave risk or when illness management strains family time and routines.⁹⁵ Adolescent and young adult (AYA) siblings in particular may opt to engage in risky behavior, withdraw from peer and family relationships, and decline sharing concerns with parents whom they perceive to be overburdened.⁴⁵

Siblings of children with serious illness can experience a range of role changes. Some take on aspects of medical caregiving such as helping administer medication or treatment components²⁰ or take on a designated role of treatment companion, entertainer, or source of distraction. These new roles are added at a time when rules that once governed that relationship may be changing. In qualitative studies, for example, siblings of children with cancer have discussed how they struggle to know how to appropriately interact with their brother or sister. Rough and tumble play may be restricted, or infectious disease precautions may place greater distance between siblings. Additionally, feelings of jealousy, anger, and guilt may complicate the sibling relationship.²⁰ As described by a teenager who lost her twin at age 7, feelings about a sibling’s illness and death can be intense and long-lasting and can also lead to post-traumatic growth over time.

Related posts:

Quality in Pediatric Palliative Care Program Development The Language of Pediatric Palliative Care Relationships with Children and Ensuring Their Voices in Decision-Making Oncological Illnesses Children’s Voices: The Experience of Patients and Their Siblings

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