The Challenged Family: Issues and Insights

Janet Brandt RN, MS, FNP-C

INTRODUCTION

Childhood disability results in 26 million office visits and 5 million hospital days annually (Newacheck & Halfon, 1998). Childhood disability profoundly impacts the health care system, just as the health care system deeply affects family adaptation, functioning, and quality of life. Families with disabled children confront continual and daily stresses, many of which reflect the chronicity of care rather than the underlying disorder. These stresses may burden the family emotionally, socially, and financially. They also may necessitate dealing with complex and often bureaucratic systems to obtain health care, rehabilitation, education, and health insurance benefits.

The increased survival rate of low–birth-weight infants, children with spinal cord injuries and head trauma, and children with congenital disorders, such as heart disease and cystic fibrosis, has contributed significantly to the growing percentages of disabled children. The shift away from institutional care to care in the home environment requires exploration if new health care delivery models that focus on the family are to be developed. Creative, collaborative parent–provider approaches are necessary to meet the needs of these children. The clinician needs to be aware of critical issues that parents face when caring for a chronically ill or challenged child, while also recognizing the condition’s potential impact on the family system itself. This chapter describes how a family might feel about and respond to the needs of their ill or developmentally challenged child, while underscoring the importance of the provider’s role in helping that family manage the needs of all members.

THE ROLE OF THE PRIMARY CARE PROVIDER

Primary care providers are in the unique position of assisting disabled and ill children to reach their full potential. They can achieve this goal best by facilitating the integration of the child and family into the community, while minimizing the effects of the disability on the child’s overall growth and development.

All the provisions of the Americans With Disabilities Act (ADA) apply to children and adolescents with disabilities (American Academy of Pediatrics, 1996). The provider who is familiar with these provisions can educate and counsel parents and patients about their rights, connecting them with appropriate resources. Furthermore, the practitioner can augment the intent of the ADA by increasing community sensitivity through advocacy: reducing barriers in and maximizing the child’s interaction with the community. Chapter 18 may provide the reader with further insight.

The Message and the Messenger

From the moment parents suspect that something is not right with their child, they may seek answers in the hope of satisfying their angst with a reasonable explanation. Behind their questions may lie the fear that something is, in fact, seriously wrong. Worry and self-doubt prevail, part of the precariousness of parenthood. One parent described it in the following way:

When your child has a problem it shakes the foundations of your relationships, your confidence in your own parenting, your faith in God, and your conviction that any problem is surmountable if only you work hard enough. The search for answers can be draining and frustrating as you slam against dead ends, and you may find yourself swinging between high motivation and inertia. Even when you are fortunate enough to find an answer, the journey has changed you forever. For better or worse, it has changed you (Unknown parent, Redbook Magazine, 1996, p.77).

Although parents may have had every indication that a problem existed and may have actively pursued the evaluation and diagnosis, hope protected them from their worst fears, which suddenly are made real in the conclusions rendered by the provider. In that moment, parents must begin to grieve the loss of their “perfect” child. Agitation, confusion, and repetitive questioning are part of the emotional response. The provider can and should acknowledge and validate feelings of shock, fear, sadness, and anger.

Clinical Warning

Breaking bad news to a family about a child’s condition is a challenging responsibility. The family will remember this news and its telling forever. They will painfully relive the memory of these few minutes again and again. The provider should not tell bad news to a parent who does not have a support system present or in an environment or manner unworthy of this solemn moment. This initial encounter will influence the parent’s perception of health professionals, setting the tone for future trust and communication. Because much of this family’s well-being hinges on the parents’ ability to relate to and collaborate with needed professionals, a meaningful, positive connection is imperative.

Sad news is received initially in its emotional context. Expression of shock and distress is expected. Without explicit permission to be frightened and emotional, parents may conceal their feelings to maintain decorum and avoid embarrassment. The energy they direct toward suppressing these feelings distracts parents from attending to the information being communicated.

The provider can modify some of the suspense inherent in such a visit by encouraging the parents’ involvement in the diagnosis throughout the appointment. The provider can ask parents to verbalize their observations about the child’s condition, behavior, and development. Thus, the clinician confirms and further clarifies what the parents already know. This behavior also serves as a good first message to the parents, assuring them that they are knowledgeable about their child and that their instincts are correct and reliable.

Once the parents have reacted and described their feelings, they may be receptive to the basic information they need about the diagnosis. Only then can the provider begin to meet the present needs of the child and family. While the parents are likely to need a great deal of information, the presentation and timing of information are important considerations. The language used in this initial interaction is very meaningful.

As parents become accustomed to the medical terminology used in conjunction with describing their child, knowledge of specific diagnostic terminology may be empowering (Abrams & Goodman, 1998). Such knowledge helps them to speak openly with their provider about the diagnosis, the family’s expectations, and their means of coping. Diagnostic terminology also facilitates access to educational materials and helps direct parents to the resources of specific support groups.

Abrams and Goodman (1998) analyzed how parents and professionals engaged in a process of negotiating what labels should be used and what developmental meaning should be ascribed in the diagnosis of disorders in young children. Their psycholinguistic analysis showed that professionals shied away from explicit use of labels, preferring to describe children’s deficits with rate descriptors (eg, “slow”). Parties wavered between optimistic and pessimistic statements. When parents seemed despairing, professionals would try to offer hope; when parents were unrealistic, professionals gave more blunt statements. Parents who received the most ambiguous interpretations seemed left with diagnostic questions still unanswered. Those who received more forthright information appeared better able to move on to issues of prognosis.

The Value of Genetic Counseling

Recognized and commonly occurring syndromes have established networks of parent support with publications, treatment updates, conferences, and legislative and funding information. Knowing “what happened” can relieve some of the guilt, pain, and blame, as well as fear of outcomes for future children. Despite the fact that there are more than 1000 recognizable causes for mental retardation and developmental syndromes, in many instances the desired label is not currently ascertainable (Hirsch & Rader, 1998). Parents for whom no clear diagnosis can be offered report that they are driven to search for a conclusion (Redbook Magazine, 1996). They report that this is disturbing and distressful, distracting from the work of acceptance and adjustment.

The negative aspect of a definitive genetic diagnosis is the tendency to forget that the child is an individual whose presentation may not fit consistently with the syndrome. Hirsch and Rader (1998) describe the “syndrome, syndrome” in which parents and providers limit treatment, observation, and expectations based on anticipated outcomes. The reader is referred to Chapter 5 for more information on genetic counseling.

THE ROLE OF THE FAMILY

The diagnosis of a chronic illness or disability is just one point in the family’s ongoing evolution. Over time, the family must learn a constellation of adaptive tasks to cope successfully and meet individual and family needs. Some tasks are practical, while others are emotional. Collectively, they represent a framework the provider can use in assessing the family and planning interventions. Display 17-1 identifies adaptive tasks that can assist parents to deal successfully with their child’s disorder.

Coming to terms with their child’s illness or disability is the initial difficult task. Shock and disbelief often are followed by a useful and purposeful period of denial in which the family masters the presenting threat. Prolonged denial impedes successful adaptation; a realistic view promotes it. Parents also need to become socialized into the health care system, because it is apt to become a major part of the family’s environment. Its successful negotiation can reduce obstacles to care.

Cautious, subconscious grief begins the moment parents suspect a problem in their child’s well-being or development. When suspicions are confirmed, the parents experience profound, often debilitating grief. This anguish is not linear, and parents must move through the stages of grief before they eventually accept their child’s diagnosis.

• Clinical Pearl

For families with children who have chronic illness or physical or developmental disabilities, grief has no end point. The provider and parents should be aware of the cyclical nature of the grief process to understand better the family’s needs over time.

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