The challenges of parenthood are well-documented and well-understood. Even in the best of cases, meeting the needs of children can be stressful for parents; ensuring that children are fed properly, clothed adequately, educated effectively, and otherwise provided for requires extensive emotional and financial resources. Children do not come with owner’s manuals; parents must not only meet the needs of their children, they must also adapt and respond to the ever-changing nature of such needs as children move through various developmental stages on their path toward adulthood. Parents whose children are physically and psychologically healthy may still feel ill-prepared for the responsibilities of parenthood, but they can take many of their cues fro the examples set by other parents and the surrounding societal and cultural environment. Parents of children with chronic illnesses may face challenges for which they have no way to prepare, leading to stresses on the entire family. In such families the ill child may receive the bulk of the as far as their illness is concerned; at issue here is what effects the chronic illness –and all its ramifications and repercussions- will have on siblings of the ill child.
It seems self-evident that families with a chronically ill child face different -and ostensibly greater- stresses than do families with children who are generally healthy. Numerous studies have shown that significant numbers of parents report an array of problems manifesting in their children when one sibling has a chronic illness (Ferrari, 1999). These reported negative manifestations run the gamut from mild emotional or mood disturbances to serious psychological-developmental disorders and psychopathologies. Many parents also self-report about the emotional and psychological tolls that having a chronically ill child can produce (Dauz-Williams, 2010). Compound these sorts of problems with the financial burden illnesses can place on families and it is clear that having a chronically ill child can be enormously difficult for parents and siblings alike.
Statement of Purpose
The purpose of the proposed study is to delineate some of the most commonly-seen pressures that having a chronically ill sibling can place on the well siblings, and to explore the potential benefits of designing an intervention paradigm based on an applicable nursing theory.
Family Nursing Theory will provide the primary contextual basis for the proposed area of inquiry regarding the ill-sibling/well-sibling dichotomy. Many different contributors have helped to shape Family Nursing Theory; the definition of this theory varies from one contributor or set of contributors to the next, but all are underpinned by the same basic concepts. Family Nursing Theory primarily revolves around an examination of how families deal with illness within the family, and provides a framework for codifying the various ways in which families can cope with having an ill member in a healthy and positive manner (Hartrick, 1995).
While Family Nursing theorists seek to explore all of the behavioral, emotional, and psychological manifestations within families that have a member with an illness, the primary focus of these theorists is to examine those families that deal with the illness in positive ways, and to determine what commonalities are found in such families (Hartrick, 1995). The prevailing goal for Family Nursing theorists is to help families that are responding negatively to having a family member with an illness to apply or incorporate those techniques and behaviors that have helped other families to effectively cope with and manage the stresses wrought by such illnesses.
Why does having an ill family member cause some families to grow apart or to completely break down, while other families are able to turn the existence of an illness within the family unit into an opportunity to grow closer and to support each other as they cope with the illness? That is the fundamental question for Family Nursing theorists, the answers to which are at the heart of how Family Nursing Theory can be applied in practical terms. This topic will be further discussed in the context of the proposed research.
When looking for information about how having a chronically ill child as a member affects the entire family, it is clear that the majority of the available literature focuses primarily on the ill child and the parents (Sharpe, 2002). Siblings, when mentioned at all, are often relegated to mere statistical status or mentioned practically as an afterthought (Ferrari, 1995). The areas which receive the most focus are the psychological effects of illness on the ill child, and discussions about how stressful and problematic it can be for parents to raise a sick child while juggling the needs of their well children as well (Dauz-Williams, 2010; Sharpe, 2002).
A smaller percentage of studies on the subject make siblings the focus; a close examination of such studies reveals the presence of several common, recurring themes. While there are, of course, significant variances from one study to the next, the common themes present in these studies are worthy of consideration. The following material contains a discussion of some of these common themes:
When reading through some of the available literature on the subject of how a child’s chronic illness affects that child’s siblings, certain fundamental assumptions and premises are seen again and again. According to the authors of many such articles, there is a general consensus that having a chronically ill child in a family is more likely to create problems and stresses within that family than it is to engender close bonds or a sense of unity (Ferrari, 1995; Dauz-Williams, 2010).
This consensus, as determined by various polls and surveys of a random sampling of people, hews very closely to the actual statistics as reported by parents of chronically ill children; in this instance, perception and reality are practically one and the same (Sharpe, 2002). A majority of parents who are queried about the effects on siblings (and/or the family unit as a whole) of raising a chronically ill child indicate that their physically-well children demonstrate a variety of negative behaviors and other negative outcomes as a result of having an ill child in the family (Ferrari, 1999).
The problems for well children who have a chronically ill sibling can vary in type and severity from one family to the next, but generally speaking several of the same issues are present in many of the studies on the subject. Determinations about the effects of illness on well siblings can be difficult to make; in many studies such determinations are proffered by parents in response to various questionnaires and surveys (Ferrari, 1999). Other studies have attempted to interview or otherwise question the individual members of entire families; regardless of approach, common themes emerge in these studies.
The most-often reported negative outcomes for well siblings in families with a chronically ill child are behavioral, emotional, and psychological disorders (Sharpe, 2002). The severity of these disorders varies widely from family to family; in some cases, parents report occasional “acting out” by their well children (Ferrari, 1999), while in others, parents report disorders that are serious enough to warrant psychological or medical intervention (Sharpe, 2002).
Reported with less frequency, but at statistically significant rates, are developmental delays in well children who are siblings of a chronically ill child (Dauz-Williams, 2010). Just as is the case with the aforementioned behavioral and emotional disorders, the severity and type of delays vary widely. In some instances parents report that their well children are not developing intellectually or academically at the same rate as their same-age peers; other parents indicate that the developmental delays they perceive in their well children have more to do with their children’s emotional development or maturity.
There are many more specific negative outcomes reported in studies on this subject; detailing each of them here is outside the scope of this discussion. Though there are myriad ways in which negative outcomes can manifest in the context discussed herein; the bulk of these manifestations can be generally categorized into the several aforementioned disorders and delays.
Causes of Negative Outcomes
There is no clear consensus among researchers about what specific factors lead to or otherwise cause negative outcomes for well children with chronically ill siblings. As is the case with the discussions about those negative outcomes, discussions about the related causes tend to focus on several common theories and assumptions.
Much of the prevailing literature on this subject offers a simple and direct explanation for how negative outcomes are caused in families with a chronically ill child. It is generally assumed that well children in these families either receive less parental attention than do their ill siblings, or that well children must compete for parental attention in a manner that exceeds typical attention-seeking behavior in healthy children (Ferrari, 1999; Terzo 1995). It is hypothesized by many that the simple lack of parental attention can lead to well children developing disorders and delays; these children, it is asserted, lack the necessary guidance to develop normally, or rely so emphatically on negative behaviors that those behaviors become actual disorders (Sharpe, 2002).
An adjunct to this perspective offers a slightly different take on the family dynamics that can lead to negative outcomes for these well children. This alternative theory still emphasizes the parental connections to well children’s negative outcomes, but does not focus on the relative amount of attention that children in the family receive. The primary factor, as seen from this perspective, is not children’s behavior; it is parental behavior. According to this theory, the difficulties involved in raising a chronically ill child place so much strain and pressure on parents that they “distort” the parents’ abilities to properly take on the roles of “mother” or “father” (Ferrari, 1999).
In this context, it is not a lack of attention that leads to disorders and delays in well children; negative outcomes in these children are a result of “distorted” parenting. Regardless of what causes negative outcomes, it is clear that several common problems are often seen in the siblings of chronically ill children.
The Need for a Comprehensive Approach to Counter Negative Outcomes
It is not the sole purview of Family Nursing theorists to assert that the siblings of chronically ill children must be seen as equally-significant components of a healthy family; most relevant studies and articles discuss a more-or-less holistic approach to avoiding or overcoming dysfunction in well siblings (Hartrick, 1995; Sharpe, 2002). It is necessary for family members to understand and support each other -and to avoid having the ill child’s illness become the family’s sole focus- if the family unit is to avoid or overcome negative outcomes among its members.
The subjects for this study will consist of multi-sibling families with chronically ill children who are seeking regular health care in a common clinical setting. An effort will be made to closely examine various aspects of the families’ individual and group dynamics, behaviors, and dysfunctions in the context of Family Nursing Theory, and to determine if interventions based on that theoretical model are of noticeable or significant benefit to the participating families.
The samples for this study will consist of two groups of relatively equal size. Each group must have the same number of families, and an effort will be made to create a balanced ratio of the overall number of well siblings in each group of families. One group will participate in a series of ten weekly “interventions” with a Family Nursing theorist who will offer advice and suggestions to each family in the group; the advice and suggestions will be derived from the basic concepts that underpin Family Nursing Theory.
The purpose of the interventions will be to discuss Family Nursing Theory with each family and to offer ideas about how families can best work together and support each other in the face of chronic illness. Self-reported determinations about the rate (if any) of individual and group disorders among each family in this group will be gathered at the beginning and the end of the ten week period. The control group in this study will not participate in the same interventions; self-reported determinations will also be conducted with each family in this group.
The interventions will be conducted in the privacy of each family’s home.
The primary instruments for this study will consist of theory-based interventions for the study group and a questionnaire administered to all the participating families. The interventions will be built around informal, conversational and interactive family discussions. These discussions will be guided by a Family Nursing theorist; this theorist will steer the discussion with a series of prompts and questions based on the fundamental concepts of Family Nursing Theory, with an emphasis on the ways that families can and do find unity and avoid negative outcomes when dealing with a chronically ill child.
The questionnaire will be a simple list of questions that are intended to determine how family members rate their individual and group behaviors, as well as asking parents to discuss any relevant information about problems and disorders in their well children that those parents believe are a result of having a chronically ill child. As noted, the questionnaire will be administered to all families at the beginning and end of the ten-week study period. After the study results are gathered, the hard copies of the answers will be destroyed; only the anonymous statistical information will remain.
The information gathered from each of the two groups will be assessed on a per-family basis. Some of the information gathered from the questionnaires will be quantifiable (example: “have you sought psychological counseling or other treatment for any of your well children in the last twelve months?”) while some will be subjective (example: “would you say that having a chronically ill child has been the underlying cause of any behavioral issues in your well children?”). In light of this, each set of responses will have to be analyzed in as objective a manner as possible, with an eye towards ending up with easily-comparable information. The ultimate goal of the study will be to identify common problems (if any) seen in each family, and to determine if the theory-based interventions helped to foster any improvements in the self-reported statuses of each family in the study group.
This study is significant to any family that has a member with a chronic illness, and is of even greater significance to multi-sibling families with a combination of ill and well children. While there is a growing body of literature available that examines the effects of chronic illness on well siblings, there is a dearth of material that attempts to determine how families with a chronically ill child can be helped in any effort to avoid or overcome problems and negative outcomes that arise as a result of the child’s illness. While it is important to understand the problems families face when one child is ill, it is of much greater importance to learn how best to help such families to unite and grow in the face of adversity.
Dauz-Williams, Phoebe et al. Developmental disabilities: effects on well siblings. Issues in Comprehensive Pediatric Nursing. 33(1). March 2010. pp 39-55.
Ferrari, Michael. Chronic illness: psychological effects on siblings. Journal of Child Psychology and Psychiatry. 25(3). July 1999. pp 459-476.
Hartrick, Gwen A. Transforming family nursing theory: from mechanicism to contextualism. Journal of Family Nursing. 1(2). May 1995. pp 134-147.
Sharpe, Donald and Rossiter, Lucille. Siblings of children with a chronic illness: a meta-analysis. Journal of Pediatric Psychology. 27(8). 2002. pp 699-710.
Terzo, Holly. The effects of childhood cancer on siblings. Pediatric Nursing. 25(3). May/June 1999. pp 309-311.