Keywords

Introduction

The psychosocial assessment , also termed psychosocial evaluation, plays an important role when evaluating a child for pediatric transplantation.

History

Psychological assessments have been around for quite some time, with most scholars believing assessments first occurred approximately 2,000 years ago in China when the Chinese began testing the linguistic abilities of potential civil servants. Psychosocial assessment further developed in 1905 by Alfred Binet and Theodore Simon. Both Binet and Simon were psychologists who sought to identify developmental issues within children. Modern psychosocial assessment continued to progress primarily through the psychological testing of the military. During World War I, military and government officials believed that understanding a soldier’s mental abilities was an important factor in improving military warfare.

Upon proving successful, American colleges and universities implemented intelligence tests within the admissions process. From there, psychological and psychosocial assessments began spreading into other industries and vectors of society and have become a component used in the field of social work.

Depending on the context of the treatment, a psychosocial assessment can be relatively simple or extremely complex. Whether simple or complex, a good assessment should cover all the aspects of a person’s life in order to get a picture of his or her mental state (University of New England, Online Masters of Social Work Brochure).

When gathering the assessment data, the social worker is also using one of her/his principle skills as a social worker, which is the ability to develop a helping relationship with the client, family, and others with significant involvement in the client’s situation.

The goal of the psychosocial assessment in the pediatric transplant setting is to obtain a well-rounded knowledge of the candidate and the family but to then provide the family with supportive resources to not only aid in the transplant process but to aid the candidate and family as a whole.

This author was at the forefront of pediatric transplantation, when in 1981 Dr. Thomas Starzl came to the Children’s Hospital of Pittsburgh to perform liver transplantation on children. He had performed a small number annually at the University of Colorado Medical Center during the preceding two decades. A few other surgeons had also attempted liver transplantation without success. Only Professor Roy Calne working in the United Kingdom had had significant experience with this procedure. Development of a team of various professionals to move transplantation forward evolved in those early years.

A master of social work is well equipped with the tools to attain a psychosocial assessment but from those very first evaluations it became quite clear that these families coming from all over the world had enormous needs in addition to their child needing a liver transplant. They had financial and insurance needs. (No insurance paid for what was considered an experimental procedure at that time.) They had needs for: housing, for schools in the area for siblings, interpreter services, transportation (to get to the hospital in under 6 h for transplant), and medical care for the parent(s) as several came to Pittsburgh pregnant or with other medical conditions. These are just a few examples of the daily occurrences that the social worker was faced with when assessing the needs of a transplant family.

The United Network of Organ Sharing (UNOS), the federally contracted organization that today regulates organ allocation, organ procurement, and transplantation network bylaws did not exist, thus, there were no guidelines or regulations to follow, so the medical team, of which the social worker was a member, had to break new ground. The psychosocial evaluation for transplantation at this time was not different from the standard format evaluation used throughout most pediatric hospitals. This included, demographics, insurance and financial status, education and employment history of the parent(s), history of household family members and extended family, family psychiatric history, history of drug or alcohol abuse, history of potential sources of support, including religious affiliation, diagnosis of the patient, and medical background of the patient and the parent(s).

The assessment, like today, was not used to rule out a candidate for transplant but instead to obtain knowledge of the family’s needs so that resources could be put in place to help ensure better outcomes of the transplant.

The issues at hand were that there was no resource base for the family’s needs. There were no interpreter services as we have in place today. There were no agencies to assist financially or supportively. The majority of the families had to move to the area in order to be within the 6 h limit, and there was no housing except for a small Ronald McDonald House which was at a distance from the hospital.

Today, at many pediatric transplant centers worldwide, the evaluation for solid organ transplantation involves a multidisciplinary assessment of which the psychosocial evaluation is a component. In the United States, a psychosocial assessment is one of the several multidisciplinary evaluations required by the United Network of Organ Sharing and Centers for Medicare and Medicaid Services (CMS). These components are a welcome addition to what the assessment was in 1981. The multidisciplinary assessment is now overseen and governed by UNOS and CMS. Currently, most transplant centers have a multidisciplinary team comprised of surgeons, nurse coordinators, social workers, pediatric physicians, psychologists, financial coordinators, nutritionists, pharmacists, and child life specialists (Lefkowitz et al. 2014; Organ Procurement and Transplantation Network Bylaws 2013).

The assessment tool today is very similar to the one used in 1981 but with the changes and advancements in medicine and techniques of transplant there have been changes and refocusing on specific psychosocial issues .

Today, there are numerous financial resources available to families and almost all insurances cover transplantation. In addition, there is a financial coordinator on the transplant team to assist with any issues that may arise in this very dire situation. Most transplant centers now have many housing options available, but with multiple transplantation centers often near the patients home there is no longer the immense need for housing near the transplantation center that there was in 1981. Similarly, the lack of transportation to the transplant center is no longer a major obstacle to transplantation because of the presence of transplantation centers near most patient’s homes, the development of improved organ preservation, and the development of a national organ allocation organization. In those instances when transportation is an issue, the presence of government aided transportation is useful.

This chapter will detail those psychosocial factors that today can accompany the complexity of the transplantion.

“Most surgical team’s reluctance to deny the chance of survival to any child regardless of a pretransplant psychosocial assessment. The assessment provides a series of alternative proposals that guarantee adequate support designed to overcome psychosocial problems, as well as medical and surgical ones” (Frabrizi and Pecoraro 2006). The importance of the psychosocial evaluation is as a tool that identifies the psychosocial issues of the patient and family and introduce resources to support them rather than identify issues that may lead to transplantation being denied. As Lefkowitz (2014) states “when potentially problematic health behaviors (i.e., non-adherence) are viewed through a lens that accounts for possible biologic, socioeconomic (i.e., access to resources), or religious (i.e., health beliefs) differences, better-tailored, culturally sensitive pretransplant intervention can result.”

The psychosocial assessment may vary from center to center but the overarching goal is to identify patient and family strengths and risk factors that may impact posttransplant outcomes (Fung and Shaw 2008; Stone et al. 2006, Annuziato et al. 2010).

“Where by in many adult centers, psychosocial evaluation findings are often considered as part of the criteria of whether or not to list the patient for transplant, it is less commonly used as decision-making tool in pediatrics” (Annuziato et al. 2010). Instead, the evaluation can point out the strengths but also risk factors that can be useful in the targeting of the psychosocial services needed (Lefkowitz et al. 2014). For example, if the patient frequently misses doctor appointments and the assessment reveals that transportation is an issue, then transportation resources can be provided to the family.

The psychosocial evaluation would not prevent the pediatric patient from undergoing transplantation but instead, it is a tool that can detect possible issues pertaining to nonadherence , insurance shortfalls, financial constraints, family discord , cultural and/or religious concerns, and cognitive/educational concerns. The evaluator also needs to assess the family’s understanding of the psychosocial impact and the anticipated responsibilities of transplantation and the post-transplantaion period.

In this chapter, these components of the psychosocial evaluation will be expanded for the reader to better understand the psychosocial complexities of transplantation.

Family

“Organ transplantation comes with a variety of changes experienced by all members of the family. Many of these changes come from the altered roles that family members take on during the transplantation process and the high level of stress that comes at many points along the way” (Aldridge 2008).

“Family members, especially parents, are crucial participants in all stages of the transplant and together with the doctor, play a fundamental role in the decision-making process” (Frabrizi and Pecoraro 2006). The family is an important component of transplantation success (Demaso et al. 2004).

“Parents will have to devote themselves to their sick child, often at the expense of their job and, at times their other children. In many cases, all family members of the transplant patient are forced to reorganize and adapt their own lives around a long period of hospitalizations” (Soliday et al. 2000).

Given the important role that parents play in offering emotional and instrumental support to children undergoing transplantation, aspects of the family environment can be helpful to assess within the context of the pretransplant evaluation (Lefkowitz et al. 2014).

Anxiety about death, uncertainty about the survival and future health of the child, serious economic and social difficulties, and the emotional repercussions on other family members constitute a high risk of crises in the nuclear family and its break-up (Reynolds et al. 1993).

“Further, there is growing awareness of the effects of illness on sibling relationships. Some well siblings may develop impressive maturity because of illness in one member of the family, but chronic illness can place tremendous pressure on well children, and can sometimes create serious challenges to adjustment” (DiMatteo 2004).

“Research has demonstrated that high levels of conflict and poor communication within families have been associated with lower quality of life among youth undergoing transplantation” (Devine et al. 2011, Taylor et al. 2009). “Additionally, parental stress , poor family cohesion, and lower illness related quality of life appear to be related to poor treatment adherence among youth undergoing transplantation” (Fredericks et al. 2007). “Evidence suggests that problematic early childhoods are predictive of poor adherence. The family is an important component of transplantation success” (Shemesh et al. 2007).

“All of the aforementioned familial variables can offer meaningful clinical insight as to how the family may approach the transplantation process and posttransplant care. Likewise, it can identify those families who may benefit from therapeutic intervention” (Lefkowitz et al. 2014).

The issues of diversity in culture , socioeconomic status, and religion are essential considerations during the psychosocial assessment process and throughout the transplant process (Lefkowitz et al. 2014). These factors can impact family’s knowledge and beliefs about transplant, their health behaviors, and their relationships with medical providers (Maloney et al. 2005).

The assessment needs to evaluate the parents’ understanding of the transplant and the responsibilities that go with it.

“Although transplantation may rectify acute illness, it results in a psychosocial phenotype similar to other chronic conditions. Solid organ transplantation is a lifesaving procedure, but it also marks the start of a chronic medical condition” (Shemesh 2008).

“Regardless of the type of transplant, it is important to clarify the child/family’s expectations for transplant, and correct any misconceptions that they may have. For example, families need to understand that transplantation is not a cure, but rather a treatment option that extends life. Some families expect that transplantation will end a long road of persistent medical intervention and are disappointed to learn that transplantation is a different, albeit hopefully better, road with ongoing need for medical management. Families are also surprised by the “longevity” of transplanted organs. For most types of transplants, the new organ is not expected to last throughout the remainder of the child’s life, thus the child may face the need for another transplant in the future. For patients that are headed toward transplant because of chronic illness, transplant can be conceptualized as exchanging one chronic illness for another” (Green et al. 2011; DeGeest et al. 2005).

Parents need to understand that transplantation will be the “new family member” that will have to be incorporated into their lives, as there will be the never ending medical and labs appointments and medications.

In severe cases of familial dysfunction where all resources and/or therapeutic interventions have failed, the child needing the transplant may and has been removed from the home as to not deny the child a lifesaving transplant.

Financial

Transplantation can bring with it a financial hardship . Almost all children that come to transplantation, come with insurance that pays for the costs related to the transplant, (i.e., evaluation, surgery, on-going post op care, and medications) but in many instances, there is not 100% coverage for these services. Beyond medical costs, there may be the cost for transportation, meals, lodging, and for siblings. In many cases, a parent may have to stop working to care for their sick child, which may mean there is no income or the household income is decreased. The bills and daily living expenses do not stop when a child is sick.

In the case of pediatric kidney or liver transplantation , a parent, in many instances, is a living donor, which will keep that parent from being able to work or their role of supporter taken from them, as they will need to recover. These are the additional stressors that coincide with transplant and must be recognized and assessed at the time of the transplant evaluation. Most transplant centers as mentioned previously have a financial coordinator that can assist the family with insurance and needs for additional finances. It is not uncommon for families to have a fund to help offset the extra costs. The financial coordinator and/or the psychosocial evaluator is also equipped with resources regarding fundraising.

Cultural and Religious Diversity

Cultural and religious preferences should be discussed during the evaluation and then assessed for any need for variations in the transplant process. “A growing multicultural society presents healthcare providers with a difficult task of providing appropriate care for individuals who have different life experiences, beliefs, value systems, religions, languages and notions of healthcare. Cultural practices and spiritual beliefs are the foundations on which many lives are based, and quality care requires medical providers to be both culturally sensitive and culturally competent” (Wiener 2013).

“It is important to understand how a family’s culturally mediated strengths can service as protective factors. Assessing these factors is critical to developing collaborative relationships with families and may help to prevent misconceptions later on” (Lefkowitz et al. 2014).

In a medical situation, the parents attempt to do what is in the best interest of their child, which may be different from those assumed in the biomedical, cultural perspective. Healthcare providers need to be aware of these values and be sensitive to the values assumed in the spiritual and cultural worldview with which the parents are attempting to live their lives (Coward and Hartrick 2000). “There may be cultural differences in how patients interpret the importance of taking medication doses on time or in the specific cultural factors that impinge on one’s ability to take medications regularly in a particular setting” (Freeman and Bernatb 2012).

For instance, a family that is a practicing Jehovah’s Witness, discuss the use of blood products with the surgical team as The Watchtower Society, the official agency of the Jehovah’s Witnesses, maintains that “transfusions are synonymous with eating blood, which is in the Bible in Genesis 9:4 and Acts 15:28-29 Watchtower and Bible Tract Society. Accepting a blood transfusion disobeys God’s commandments and may lead to eternal damnation” (Watchtower web site).

An Orthodox Jew, for example, may practice certain rituals in regards to food and/or worship that may need to be addressed while their child is admitted to the hospital for the transplant. A Muslim mother may not be comfortable speaking to a male doctor or staff person alone in her child’s room especially if her head is not covered.

The decision-making role is diverse among different cultures. For example, it is usual in the Amish Community, for the head of the community along with other members, to participate in the medical discussions and decisions for a member needing medical care. This may also be the case among Native Americans. As Mazanec and Tyler (2003) found that “many African Americans prefer that conversations be initiated with the eldest member of the family, typically the male.” Himelstein et al. 2004; Phan and Tran (2007) found that “gender often plays a role in the decision making process. In both Asian and Latino families, the mother is typically regarded as the primary caregiver; therefore, decisions will often be placed in her hands.”

Language can also be a critical barrier when obtaining an assessment. There can be miscommunication and misunderstanding if the family does not speak the language of the medical professional. A trained medical interpreter should be used to facilitate in the process. “In addition to the spoken word, nonverbal cultural variations may impede accurate communication. Nodding the head in many Asian and Latino communities simply indicates listening, not agreement to what a healthcare professional is saying” (Phan and Tran 2007). “Direct eye contact may be interpreted as aggressive or hostile in the Chinese and African American communities” (Campbell 2006).

The above, are just a few examples of the many cultural and religious values that need to be assessed and taken into consideration when performing the evaluation and then developing a plan. A plan that to be effective needs to involve the family. Once agreed upon it should be mapped out and then implemented at the time of transplantation.

Cognitive/Educational

It is important to assess the cognitive function of both the pediatric patient as well as the parent(s). The assessment of the child will vary depending on age. In the younger child, developmental delays are important to note so that the appropriate therapies can be incorporated into the medical plan posttransplant. In the preschool and school age child, there should be an assessment of cognitive delays as well as the child’s understanding of his/her illness and coping skills. It is important in this age group to assess the child’s social activities and involvement with friends for there may be a need for change in these activities and the child may need some help with talking with his/her friends about the transplant. In some cases, a full assessment by a child psychologist may be warranted.

If school age, take notice if the child has missed a lot of school, been held back a grade(s), or is home schooled due the medical condition. This knowledge will help the transplant staff and the parent plan for the needs of the child during the transplant process.

The cognitive level of understanding of the parent is also very significant. The parent will be given a great amount of information about their child’s medical condition and the care the parent will need to provide after transplantation. They may need to make critical decisions during the process. Once the cognitive level of the parent is determined, the transplant team will have a better understanding of how best to educate and work with the family.

Noncompliance

Noncompliance or as many term it today “nonadherence” is one of the leading reasons for graft loss in children and adolescents.

Compliance with medical prescriptions remains the biggest long-term problems (Griffin and Elkin 2001).

In the pediatric population, there are parents who are noncompliant with clinic appointments posttransplant and/or antirejection medications. This population also has the adolescent and young adult (under 21 years of age), who for reasons of not wanting to be different from their peers stop taking or miss doses of critical medications. This is a period of “risk taking” for this age group which does not bode well with transplant. Adolescents have a sense of being indestructible. They miss doses or stop all together and do not see any change in their health until in many instances the damage cannot be reversed or the damage overtime will weaken the function of the organ. The need to adhere every day to medical interventions can sometimes be overwhelming, making life seem like an endless cycle of medications, treatments, procedures, and medical visits. “For chronically ill children and adolescents, health behavior can be an incessant and awesome daily task, the poor management of which can lead to further morbidity and even death. Generally, the adherence of children and adolescents can be particularly complex because it involves intricate family relationships and perspectives and because regimens can be demanding both behaviorally and psychologically, particularly when the illness is serious. The demands of the illness can overwhelm the developmental abilities of the child and/or emotional and physical resources of the family. Family conflict, negative feelings in the family, and poor psychological adjustment, can serve as powerful factors in patient non-adherence. Other developmental issues can affect adherence as well, such as separation/individuation, limited abilities in risk assessment, conscious risk taking and peer group pressures” (DiMatteo 2004).

Because nonadherence is so prevalent in transplantation, the psychosocial evaluation attempts to assess possible predictors to nonadherence which could lead to a contract between the transplant center and parent and/or adolescent patient or in many instances, it will be a “red flag” for the postoperative care.

Literature suggests that adherence can directly or indirectly be related to communication between the patient and the family and the patient and/or family and the transplant team. “Effective health professional-patient communication is critically important to fostering adherence and positive health outcomes” (DiMatteo 2004). Thus the importance of the open and good communication of the evaluator at the initial time of the psychosocial evaluation and moving forward through the transplant process. When the medical team working with the patient and family are informative, honest, sensitive to their needs, and nonjudgmental, there are more positive adherence outcomes, which lead to working collaboratively with each other.

Resources

Upon completion of the evaluation, there should be increased knowledge of the strengths and weaknesses of the family. When appropriate, it is at this point in the evaluation that any resources that may be helpful should be communicated to the family. This may include insurance information, fund raising, transportation services, housing, counseling, and support groups.

“In circumstances in which the child becomes acutely ill, the psychosocial evaluation process may have to be curtailed or be less comprehensive than planned, such as if a child’s condition deteriorates rapidly, requiring urgent transplant listing. When this occurs, parents and other family members will likely already be experiencing high levels of stress and will have to confront possibly for the first time – that their child’s illness is life threatening and that prognosis, even with a transplant, is uncertain. In these times of extreme duress, parents may have to make difficult decisions without having been able to absorb all of the information given to them or to be prepared as sufficiently as is ideal. For these families, the psychosocial team may need to be flexible and conduct an evaluation that focuses on the most necessary components and will likely include an element of crisis management” (Lefkowitz et al. 2014).

Conclusion

“While the pre-transplant psychosocial evaluation is not often used in the actual determination of eligibility for pediatric transplant, it typically serves as a method of identifying patient and family strengths as well as risk factors for poor post-transplant outcome, in particular non-adherence, which can result in medical morbidity and mortality. It is believed that a standardized, comprehensive evaluation process can provide the most useful information for transplant teams as to interventions needed. However, at the current time there is a dearth of prospective research examining the impact of pre-transplant psychosocial findings on posttransplant patient outcome or of the benefit of pre-transplant intervention in areas in which patients are deemed high risk. As such, evaluation design often relies on knowledge of research findings specific to the domains of the assessment, or, likely more commonly, on clinical experience” (Lefkowitz et al. 2014).

Lefkowitz et al. (2014) lists below the important components of the evaluation as identified in the literature:

  • Establishing rapport with the patient and family

  • Clearly communicating with families at the onset the type of information

  • collected and the manner in which it will be used

  • Developing center wide policies with regard to the use of psychosocial evaluation findings in the decision-making

  • Utilizing a standard assessment process, assessing all domains in all patient/families as feasible

  • Assessing adherence, patient and family psychological, and cognitive functioning

  • Variation in the assessment procedures based on patient age and developmental level, illness factors (e.g., urgency of transplant), and location of evaluation (inpatient or outpatient)

  • Being mindful of cultural factors that may affect health beliefs, relationships with medical providers, and health behavior

“The purpose and use of the pre-transplant psychosocial evaluation are an often discussed area of ethical conflict in the transplant process; this can be tempered by the development of clear policies around the use of information gathered in the pre-transplant evaluation and communication with the family at the outset of the purpose of the evaluation. Finally, patients presenting for transplant and their families represent tremendous diversity across socioeconomic, cultural, racial, religious, and other dimensions. Consideration of these dimensions is necessary for establishment of effective working relationships with families, for conducting a thorough and useful evaluation, and for increasing the likelihood of the effectiveness of any psychosocial intervention utilized to improve health outcomes” (Lefkowitz et al. 2014).

Cross-References