Psychosocial Care for Adolescent and Young Adult Hematopoietic Cell Transplant Patients

Abstract

Psychological issues following Hematopoietic Cell Transplantation (HCT) are unfortunately common. Literature specific to the transplant experience for the needs of adolescents and young adults (AYA) is lacking. The purpose of this article is to 1) describe the allogeneic transplant experience for AYA transplant patients during the first year following transplantation including demographic and treatment characteristics, 2) present AYA data obtained during and following a six-part post transplant discharge study, 3) illustrate typical AYA experiences using case studies and 4) propose AYA intervention strategies within Erickson’s Stages of Psychosocial Development. A Quality of Life (QOL) model provided both the research conceptual framework, and the content analysis framework for the qualitative research. Themes that emerged within each domain were the following: sexuality/fertility, fatigue, depression/poor coping/habits, adherence issues, use of technology, dependency issues, changes in roles/relationships, issues with school/education, financial issues, family problems/issues, miscellaneous, religion/spirituality, fear of future, uncertainty, life, death, more life appreciation. These data guide us for providing targeted interventions for the needs of this AYA population. This paper has presented literature and developmental theory, qualitative and qualitative data from an intervention study, and clinical cases in order to propose a developmental treatment model for AYA transplant patients. A coordinated and multidisciplinary approach is needed for the HCT patient who is an AYA.

Unlike other experiences with oncology patients, hematopoietic stem cell transplantation (HSCT) is an intense, complex, uncertain and unique experience with some patients experiencing prolonged psychological distress following transplant. (Andrykowski, 1994a, 1994b; Cooke, Gemmill, Kravits, & Grant, 2009). The literature reports a range of psychological issues among HCT patients such as depression, anxiety, delirium, Post Traumatic Stress Disease (PTSD), and sexual dysfunction (Cooke, et al., 2009; Wells, Booth-Jones, & Jacobsen, 2009). The recovery after transplant may come with prolonged physical and psychological set-backs, and extreme social strain on the patient’s caregiver, friends and family members (Cooke, et al., 2009; Gaston-Johansson, Lachica, Fall-Dickson, & Kennedy, 2004). In addition, the transplant experience may include multiple readmissions and complications, slow recovery and long-term issues. Often the psychological and social issues surrounding the transplant experience can be more challenging for the health care team than the medical issues (Eldredge, et al., 2006). Although we know that some adults after the transplant process experience psychological and social issues, there is an absence in the literature about the “adolescents and young adult” (AYA) HCT population. However literature provides information or challenges for AYA cancer patients in general and it is reasonable to assume AYA HCT patient would at least face similar issues if not more(Eiser, et al., 2007; Schultz, et al., 2007; Wells, et al., 2009; Zebrack, Chesler, & Kaplan, 2009).

Literature Review

The AYA cancer population is a vulnerable group due to variety of social, psychological and developmental reasons. Socially, young adults are twice as likely to go without insurance. (Allen, Reuters 2/24: CDC report, Feb 2010). Coupled with an untimely diagnosis of cancer AYA patients may deal with issues of no insurance, higher insurance rates, challenging communication with insurance companies, difficulty finding work and lower incomes (Eiser, et al., 2007). The cancer literature identifies clearly that AYA patients experience a gap in service in terms of their psychosocial needs (Zebrack, 2008, 2009). Issues of depression, anxiety, PTSD, social difficulties, body personal identity disruptions, impaired relationships with peers, reintegration challenges into “normal life” and higher psychosocial distress as compared to norms are all listed as AYA cancer issues (Thompson, Palmer, & Dyson, 2009). Physically AYA cancer patients may experience host of late physical effects such as learning, memory, and attention issues from the cognitive effects of the treatment which may affect school and work performance. AYA patients also can have disturbed endocrine function, body image disruptions and sexual problems, obesity, osteopenia, poorer outcomes and secondary malignancies (Eiser, et al., 2007; Thomas, Seymour, O’Brien, Sawyer, & Ashley, 2006).

Developmental challenges are understandable since this is a population having to take on independent responsible management of their health care when they may not be developmentally ready. These patients deal with issues of follow-up visits, survivorship concerns, health education access, and promotion of healthy lifestyle expectations while experiencing their developmental need for autonomy and independence (Eiser, et al., 2007; Thomas, et al., 2006).

Given the social, psychological, and developmental challenges that can occur, what does the AYA cancer literature say about successful interventions? The literature that does address this population suggests interventions that offer more information on health access, are developmentally focused and timely, promote better communication within the health care team, use more current technology, use more social support and access to other AYA survivors, recommend competent health professionals in adolescent and young adult health, offer educational resources, including advocacy training, and promote daily healthy life style adherence education (Eiser, et al., 2007; Morgan, 2009; Smith, Davies, Wright, Chapman, & Whiteson, 2007; Thomas, et al., 2006; Zebrack, Bleyer, Albritton, Medearis, & Tang, 2006; Zebrack, et al., 2009). In summary, HCT AYA cancer patients who undergo transplant have a high potential for social, psychological, and developmental challenges in addition to the complex problems faced by all transplant patients. Few tested interventions exist which address this population from a developmental psychosocial approach despite knowledge of difficulties with cancer AYA patients in general. This article will use the Erickson theory (see table 1) of developmental stages to propose a framework for building an intervention built on descriptive data obtained in a research study involving AYA HCT patients.

Table 1.

Erickson’s Stages of Psychosocial Development

Stage	Age	Tasks	Result if task not met
I. Trust vs. Mistrust	Infants, 0-1 year	To learn whether or not people, especially primary caregivers, regularly satisfy basic needs	Mistrust, that the world is undependable, unpredictable and possibly a dangerous place
II. Autonomy vs. Shame and Doubt	Toddlers, 2-3 years	To learn a sense of autonomy with daily tasks of self-care, to do things for themselves	Development of shame and doubt about their ability to handle problems
III. Initiative vs. Guilt	Preschool, 4-6 years	Development of courage, judgment, leans to take initiative, leadership, goals, and may involve risk-taking behaviors	Frustration for not being able to achieve goals, and guilt about their needs and desires
IV. Industry vs. Inferiority	Childhood, 7-12 years	Development of success with productivity, eager to learn, learning complex skills, development of independence, moral values begin to form, formation of self-confidence.	If unable to achieve the expectations of others, the children develop feelings of inferiority about their capabilities
V. Identity vs. Role Confusion	Adolescents, 13-19 years	Development of superego identity, sexual identity, and sense of purpose of future roles and goals	Identify confusion
VI. Intimacy vs. Isolation	Young Adults, 20-34 years old	After identity is formed, they are eager to blend their identifies with friends, becoming capable of forming intimate, reciprocal relationships, being able to make the sacrifices and compromises in relationships	Inability to form intimate relationships that are reciprocal, isolation results.
VII. Generativity vs. Stagnation	Middle Adulthood, 35-65 years	Establishing generativity, contributing to society and helping to guide future generations	A person who is self-centered and unable or unwilling to help society develops a feeling of stagnation, and dissatisfaction with productivity
VIII. Ego Integrity vs. Despair	Seniors, 65 and older	Contemplation and retrospection of our accomplishments and development of integrity with seeing ourselves as leading an accomplished life.	Dissatisfaction with the inability to accomplish life’s goals, and accomplishments leads to despair

(Kirk H. W., 2003)

Purpose

The purpose of this article is to 1) describe the allogeneic transplant experience for AYA transplant patients during the first year following transplantation including demographic and treatment characteristics, 2) present AYA data obtained during and following a six-part post transplant discharge study, 3) illustrate typical AYA experiences using case studies and 4) propose AYA intervention strategies within Erickson’s Stages of Psychosocial Development.

The conceptual model for the study and data organization was developed by Ferrell and Grant and called the City of Hope (COH) Quality of life (QOL) schema (See Figure 1) (Ferrell, et al., 1992a, 1992b; Grant, et al., 1992). This model is based on quality of life research with transplant recipients, in which emerged from individual interviews and focus group data from HCT survivors. The quality of life model includes 4 domains: physical, psychological, social, and spiritual (See Figure 1).

Figure 1.

Quality of Life/HCT Model (Ferrell, et al., 1992a, 1992b; Grant, et al., 1992)

Methods

Design

The design is a mixed-methods longitudinal clinical trial testing the effects of a standardized teaching intervention on quality of life outcomes for allogeneic HCT patients at discharge, 3, 6, and 12 months post hospitalization (See Figure 2)

Figure 2.

Teaching and Rehabilitation Program Outline

Sample

The sample consisted of 24 AYA patients, a subset of the total sample of 282 allogeneic hematopoietic transplant patients recruited from one large medical center on the Western Coast of the United States. This population was selected because our preliminary work provided strong evidence for their susceptibility for post hospitalization complications involving physical care and psychosocial responses. The sample is divided into participants from the intervention (N=10) and control (N=14) groups.

Eligibility criteria for this sample include:

1. Diagnosis of a hematologic cancer (e. g. leukemia, lymphoma)

2. Scheduled for a single allogeneic bone marrow or stem cell transplant

3. Age 18-25 years

4. Living within a 50 mile radius of the City of Hope National Medical Center

5. No previous hematopoietic cell transplant

6. English-speaking

Variables and Data Analysis

A detailed schematic diagram of the relationships of the study variables to the intervention are found in Figure 3. For the purpose of this article, all AYA patients’ from both the control and intervention patient groups were selected. Qualitative and quantitative data were included. The quantitative data consisted of demographic, treatment, mortality, readmission, and complications data. The qualitative data was obtained from patients in the intervention group (N = 10) using information from post-teaching debriefing tools, field notes, and extra session content recorded by the intervention nurses. To identify themes from the qualitative data we used the following content analysis strategies: 1) analysis of interview questions, 2) extraction and identification of data from the entire corpus of the qualitative data, 3) and validation of themes between the authors.

Figure 3.

Design and Study Variables

Results

Quantitative data

The mean age of this cohort of patients at the time of transplant was 21.5 with the youngest being 19 and the oldest, 24 years of age. Eleven patients were male and 13 were female; 13 patients were Hispanic. There were 19 Caucasians, and 5 Asian patients. The most common insurance was Medi-cal/ Medicaid insurance (34.3%) followed by private insurance (31.4%). See Table 2 for other sociodemographic factors.

Table 2.

Demographic and Treatment Variables (n = 24)

Variables	Percentage
Age Mean (sd)	21.5 (1.6)
Gender
Male	45.8 (n =11)
Female	54.2 (n = 13)
Hispanic ethnicity %	54.2 (n = 13)
Race
Asian/Pacific Islander	20.8 (n =5)
Caucasian	79.2 (n = 19)
Religious preference %
Catholic	41.7 (n = 10)
Protestant	25 (n = 6)
None	25 (n = 6)
Mormon	4.2 (n = 1)
Other	4.2 (n = 1)
Insurance %*
Medi-Cal/Medicaid	34.3 (n =12)
Private/Contract	31.4 (n = 11)
Kaiser BMT	11.4 (n = 4)
Medicare	2.9 (n = 1)
Other	20 (n = 7)
Hematological diagnosis %
Acute leukemia	83.3 (n = 20)
Hodgkin’s disease	8.3 (n = 2)
Chronic leukemia	4.2 (n = 1)
Myelodysplastic syndrome	4.2 (n = 1)
Type of Transplant %
Related (sibling)	62.5 (n = 15)
Unrelated	37.5 (n = 9)
Type of Myelosuppression %
Full	70.8 (n = 17)
Reduced-Intensity	29.2 (n = 7)
Remission status at the time of transplant %
First remission	41.7 (n = 10)
Persistent disease	29.2 (n = 7)
Second remission	16.7 (n = 4)
Third remission	4.2 (n = 1)
Chronic phase	4.2 (n = 1)
Inconclusive	4.2 (n = 1)
First readmission % (n = 12)**
Unscheduled	33.3 (n = 8)
Scheduled	12.5 (n = 3)
Unknown	4.2 (n = 1)
Reason for first readmission %**
Infections	16.7 (n = 4)
GVHD	16.7 (n = 4)
Organ failure/insufficiency	16.7 (n = 4)
Gastrointestinal	12.5 (n = 3)
Relapse	12.5 (n = 3)
Other	25 (n = 6)
Mortality rate %	12.5 (n = 3)
Psychological consult referral %	83.3 (n = 20)

^*Some people had more than 1 type of insurance

^**50% of the patients had at least one readmission, and one patient had at least six readmissions.

Most of the patients admitted for transplant had a diagnosis of acute leukemia (83.5%), and had a sibling transplant (62.5%). (Table 2) For conditioning, most of the patients had full myelosuppression 70.8%, and 29.2% had reduced intensity. Most of the patients were in remission (n = 15), whether it was first, second or third remission. Of the 50% of patients who were readmitted at least once within the first year after transplant, 33.3% were unscheduled readmissions with the reasons for admissions being: other (25%), infection (16.7%), GVHD (16.7%), organ failure/insufficiency (16.7%), GI (12.5%), and relapse (12.5%) respectively. The mortality rate for the first year after transplant was 12.5%. Of the 24 patients in the study, 20 (83.3%), were seen by a psychologist for psychological issues within the first year after transplant.

Qualitative data

Qualitative data were obtained from post teaching debriefing comments and nurses’ field notes created following each teaching session for Group 1 participants. Content analysis was used to classify comments into the four domains of the QOL model. Codes within each domain emerged and comments were positioned within the codes. (Figure 4) Codes related to each domain are found in Table 3. Qualitative comments were written by the teaching nurses and thus reflect the view of the situation by the nurse.

Figure 4.

Content Analysis Example

Table 3.

Qualitative Domains and Codes

Physical

Sexuality/Fertility issues including precautions during intimacy

Fatigue

Psychological

Depression/Poor coping habits

Adherence issues

Use of technology

Dependency issues

Social

Changes in roles/relationships

Issues with school/education

Financial issues

Family problems/issues

Miscellaneous: How can the patient vote in an election when he is in isolation?

Existential/Spiritual

Religion/Spirituality

Fear of future, uncertainty, life, death

More appreciate in life, “don’t sweat the small stuff”

Physical

The issues that were identified as “physical” were sorted into two codes: sexuality issues, and fatigue.

Sexuality/Fertility issues including precautions during intimacy

Many of the patients brought up sexual concerns with the intervention nurses, but felt uncomfortable with the MD: “The patient told me that she does not want to talk about sexual activity with her MD”. In one case the parent looked uncomfortable with the topic: “Patient brought up sexuality issues and father looked down during the discussion.” Some patients called the nurses on the phone to discuss sexual issues: “Patient called me because he was worried about a sexual interaction he had with someone who had HPV. We talked about transmission and sexual practices during the time of immunosuppression” and “talked about sex on the phone with me when his family was not present”. One fiancé’ wanted a special session to discuss fertility and sexuality issues to expect, another patient disclosed issues with her husband: “Patient states that she has not had sexual relations with her husband since the transplant. The patient thinks that her husband is afraid to hurt her. We discussed her concerns and offered to have another session with her husband present to discuss the concerns.”

Fatigue

Some of the patients expressed frustration with their fatigue: “The patient wasn’t feeling well and is frustrated with his fatigue. He seems receptive but I don’t’ know if it will change his point of view on exercise.”

Psychological

Several codes were identified within the psychological domain.

Depression/Poor coping habits

While many of the patients experienced some sad feelings only a few met the criteria for depression: “Patient verbalized clear depressive symptoms.” One patient did not have insurance coverage for a psychological assessment so the nurse was coached by the psychologist informally to conduct an extra session: “Spent an extra session on the topic of depressions for over an hour.” Identification of past maladaptive coping was discussed with some of the patients: “Drug use and maladaptive coping habits were discussed with suggestions of other ways to cope with depression such as journal writing, social support, and distraction, online support, developing a new interest, cutting down school workload, realistic expectations, and Post-traumatic stress versus Post-traumatic growth.” This population often slept in late, and was late for appointments: “Patient was late”; “Session was rushed because patient was late.”

Adherence issues

Adherence issues with this population centered around the mask precautions, being on time for clinic appointments, and medication adherence. The patients often did not want to wear masks for infection protection: “Patient did not wear a mask, I scolded her and she was upset with me.” “Patient did not wear a mask; I counseled the patient and mother”. “Did not want to wear the mask in public places.” Compliance issues also occurred with medications. This population often slept in late, and was late for appointments: “patient was late”; “session was rushed because patient was late.”

Use of technology for distraction: music, iPod, phones, texting, computer

Many patients used a great deal of technology in the hospital room and at home. Some examples were: “Taking online classes on his computer during transplant” and” “Listens to his IPod quite a bit to help him cope with his experience.”

Dependency issues

Each patient had to have a dedicated caregiver throughout the transplant experience. For most of the patients, the mother was the caregiver. However, some tension was noted between the caregiver and the patient surrounding dependency issues. Some mothers were protective: “Mother continued to be the one to lead the conversation”, and “Mother is protective and does not let him go outside for a walk.” Other young adults had conflicts with the dependence: “Some conflict with the mom in regard to dependence and independence balance.” One patient verbalized that it was “Hard to be dependent on others.”

Social

Changes in roles/relationships

Some of the role change comments: “Notices a slight shift in roles with her husband” and “She noticed that she was sleeping more when she got home, and had a hard time not keeping up with her roles, she is usually the one who cleans the house and it was hard for not to be able to do it.” “Family role shifting was probably worse as her illness occurred over the holidays.”

Issues with school/education

There were many concerns about return to school. Some were financial: “We discussed scholarship and grant opportunities when he returns to school.” Some concerns centered on cognitive dysfunction: “Concerned regarding cognitive dysfunction and learning in college”; much of the teaching time of the nurse centered on the need to begin slowly with school reintegration, and the consideration of learning disability allowances. Some concerns reflected the adjustment to post-transplant life: “how she was going to cut back on both working and going to school.” Most of the patients were very motivated to return to school: “very much wants to get back to school”; “Going to continue to work on prerequisites to get into the nursing program during the year after transplant,” and “Signed up for online courses.”

Financial issue

Much of the teaching time centered on financial issues because many patients had severe financial concerns. Comments from the nurses included: “lots of questions on financial issues”; “interested in the financial aid assistance for school because her current medication co pays runs about $200/month; “she will be losing her medical insurance at the end of the month because her father is losing his job”; “we discussed other resources should she need more financial assistance in covering the medications”; “She has been paying out-of-pocket for her medications and was very interested in learning about resources that help off the cost”; and “She is leaving the village (on-site apartments) because she does not have the money to stay any longer; she is not receiving her disability checks because they are having to route through to her mother’s address.”

Changes/losses/”Being in limbo”

Some of the patients experienced multiple losses during the transplant course including friendships during transplant: “We discussed multiple topics during our session together regarding changes with friends’ ability to cope with the transplant course, lots of existential young adult issues, loss, friends not understanding, frustrations, wanting to get back into school, and work, feeling that life was on hold.” Many patients expressed the desire to “catch up with the rest of their friends.” Often they felt that the transplant experience took them out of the mainstream of life and they wanted to return as quickly as possible.

Family problems/issues

Some of the families had conflicts during the transplant time. One patient had a sister in drug rehabilitation that affected the life of the patient: “Sister is in drug rehabilitation facility for drug addiction issues. Mother and stepfather were not living together due to conflict over the sister’s issues. Patient has had to move several times in several months due to sister’s issues.” Another patient had conflict with her parents over her desire to move up her wedding date: “She and fiancée have moved up the wedding date, because she has lost her medical insurance. She is having conflicts with her father regarding her relationships with her fiancée and feels that it would be best to marry and get settled as a couple as soon as possible to iron out some of the financial issues. Her parents are not accepting her choice of her fiancée.”

Miscellaneous: How can the patient vote in an election when he is in isolation?

“He wants to vote in the presidential election. Since the lines are projected to be long, is there a way that he can vote? A letter was written so that someone from the poling station came to the car to give him the voting ballot.”

Existential/Spiritual

Religion/Spirituality

Some patients did get support from their faith. “Their Christian faith is a big support so we all discussed it very openly”; “Very much appreciates the support of church friends”; “She does not practice her Catholic faith, but prays and reads the Bible regularly”; and “Her faith has become stronger since the transplant.”

Fear of future, uncertainty, life, death

Some verbalized fears about death: “Patient spent a lot of time discussing young adult issues, uncertainty, life, death, existential concerns, fear of the future, fear of relationships, and spiritual issues.”

Meaning in life and role /more appreciate in life, “don’t sweat the small stuff”

Some patients experienced benefit finding from the transplant experience: “The patient states that he has been taking life as it comes, he does not get stressed over much. He has learned that he does not dwell on the small things in life.” and “She is learning that the small things in life aren’t as important, facing a life-threatening illness has changed her perspective.”

Case Studies

Two case studies were created that combined data from several participants to illustrate psychosocial development in the adolescent and young adult population experiencing challenges during the HCT transplant. The first focuses on the stage of “Identity vs. Role Confusion”, the stage in which adolescence begins with puberty, relationships change, and ego identity integration occurs with the future expectation of adult roles and sexual identity (Erikson, 1950). The second case study focuses on “Intimacy vs. Isolation”, the stage in which the young adult is ready for intimacy and fusing his identity with others and learning to develop relationships(Erikson, 1950).

Case study 1: Erickson’s Stage of Identity vs. Role Confusion

Linda C. is a bilingual, Hispanic young independent ambitious single 18 year old acute leukemia who feels that “had her life changed forever with the diagnosis of leukemia and the urgent fast paced treatment toward allogeneic stem cell transplant”. Like many young adults Linda had plans about her future, and she described herself as a social person who longed to connect with people. She specifically had dreams about being a make-up artist, and had just started school for the goal to work in the fashion industry. She was concerned about missing her first year in school and was hoping to do some on-line classes during the first year after transplant. Linda was in a committed relationship with her boyfriend of 2 years and found a great deal of emotional and practical support from him. Although he worked full-time, he would still visit Linda in the evenings and weekends. She would describe their relationship as “We would hang out, watch a movie, talk, play board games and he would hold me.” Although Linda was close with her boyfriend they did not engage in sexual activity. She did talk about her fertility concerns, and her inability to have children. Her mother was her main caregiver, and her parents were divorced.

When Linda was admitted to the hospital for her transplant she began to exhibit symptoms of depression when placed in isolation. With the weeks after the infusion of stem cells she had multiple physical side effects of hair loss, muscle wasting, skin discoloration, and rashes which affected her body image. Her physical appearance was a major component in her identity and self-worth. As her outer appearance changed, so did her mood. She would sleep later, keep the room dark, and not engage in any physical, recreational or occupational therapy.

After her transplant discharge, she had multiple complications within the first year post transplant and several readmissions with extended lengths of stay. Fortunately throughout the experience, her mother and boyfriend remained steady support. Despite this support, she became worried about her death and discussed her spirituality a great deal, trying to make meaning from the chaos of the year after transplant. One of her complications was chronic pain from the body aches after transplant. She was treated with opioids for pain management. The medical team was concerned that she was using the medications to psychologically withdraw instead of taking them appropriately, and called the social worker many times the first year to help manage the depression, body image concerns, and adherence issues, and spiritual crisis.

Case study 2: Erickson’s stage of Intimacy vs. Isolation

Ken H. was a 25 year old single Caucasian male with a diagnosis of lymphoma who was admitted for an unrelated allogeneic transplant. He described himself as “having a strong desire to fight and live.” He was in a long-term committed relationship with his fiancée Cathy who was completely dedicated to him. She stayed by his bedside throughout his entire hospital stay. When he was asleep, she would be doing homework outside his room. Prior to transplant he worked full-time as a construction worker and after discharge was in long-term disability. He only had MediCal insurance and was very concerned about financial strain following the transplant and his ability to return to the workforce. Ken was an active, social young adult; however after admission for the transplant he withdrew from most of his friends and selectively limited his support system to Cathy and his mother.

His follow up bone marrow aspiration indicated that he had persistent disease in the bone marrow after transplant, and he suffered multiple critical infections. He became more and more dependent on his fiancé’, mother and the nursing staff. His physical condition continued to worsen, but he refused to acknowledge that his cancer was not in remission, and continued to believe that he was cured. He limited his emotional expressions, and communicated less and less. His male friends pulled back from him because they were not able to deal with his denial in the face of persistent disease and illness. His mother and girlfriend became more protective of him as he moved toward end-of-life and did not want the medical team to discuss end-of-life options with him because they were afraid that he would “lose hope and not fight anymore’. Social work was called to assess him for depression, and help with his loss of independence, denial, fear of death.

Implications for Clinical Practice: Treatment Model Recommendations

The case studies mentioned above are based on actual patients’ experiences, and highlight some of the unique challenges of the AYA population. In addition to the normal standard of care, the following recommendations are recommended based on theory, the literature, and clinical cases.

1. Peer to peer connection: An important task in healthy development of the two Erickson stages for AYA patients is to blend with other peers, and become capable of forming intimate reciprocal relationships. The shared experience and mutual understanding is highly valued in this AYA population (Zebrack, et al., 2009) Knapp et al, 2010 clearly state that peer to peer support may even provide both comfort and support that parents and siblings can not provide (C. Knapp, Quinn, Murphy, Brown, & Madden) Zebrack (2006) in his study of AYA patient found that indeed more young adults ranked the relative importance of opportunities to meet other AYA patients greater than family and friend support (Zebrack, et al., 2006). Often connections with peers who have similar diagnosis, age and sex are helpful. In the case of the first case study, this intervention did help to combat the depression when Linda C was able to assist another younger patient.

2. Recognition of the Independence/Dependence Struggle: Throughout the cancer trajectory the AYA patient is faced with the increasing need for dependence on parents which can be a direct conflict to gaining dependence and autonomy (Smith, et al., 2007). In an interesting study comparing the perspective of AYA patients and their parents, a sharp contrast exists between the priorities of the AYA patients and the parent (Grinyer, 2009). Parents found it difficult to allow the AYA patient freedom to maintain or regain independence, and also had a difference is priorities in treatment (Grinyer, 2009). Knapp et al 2010 identifies the challenges of dealing with adolescents with life-threatening disease in the United States due to the fact that the legal system does not commonly recognize adolescent as a decision-maker(C. W. Knapp, Zhang, Sturm, & Graham, 2010). Also there is evidence to suggest that AYA patients may not have fully developed executive functioning due to regression, emotional development delay and cognitive and self-esteem issues(Kaufman, 2006). In virtually all the patients in this study, parents, mostly mothers, played a dominant role in decision-making and caregiving. Understanding the tension between parents and AYA patients is essential, and providing a “dialogue of care” between the health care team, parents, and AYA patient can be beneficial to all.

3. Dedicated Young Adult Support Group: The needs of AYA patients differ significantly from other patients, and the literature is clear that support groups may be helpful because of the shared experience, ability to increase hope and combat the sense of isolation (Juvakka & Kylma, 2009; Zebrack, et al., 2006; Zebrack, et al., 2009). Although the need for social support is higher in cancer survivors compared to population norms, few hospital and clinic young adult peer groups exist (Barrera, Andrews, Burnes, & Atenafu, 2008). A number of on-line support groups have grown over the last several years and may provide the link this population needs (Cancer, 2010; Unite, 2009-2010).

4. Parental/Caregiver Support: Overall transplant caregiving for transplant patients is exhaustive. However, coupled with the dependence-independence struggle, and the preference for peer support over parental support, caregivers can make a difficult experience very taxing. The simple support of other parents who also face the difficulty of watching their teen or young adult struggle through a procedure with a high to moderate risk of mortality can provide a shared common experience for intense emotions. Parental perspectives are vastly different than their AYA children, and having a place and space to express issues may actually assist with the transition home, and long-term functioning of the family (Grinyer, 2009). Often families and friends in this study were unprepared for the rocky course that can accompany transplant. Teaching common reactions, medications, how to support emotionally, and expectations of the first year may be very helpful.

5. Awareness of the AYA “Style”: Young adults have a different culture in relating to each other and the environment, and they also use technology much more than past generations. Tailoring support groups environments, dedicated unit or clinic space or common areas with high tables, a coffee bar, couches, beanbags, web-based technology access, and music, will provide a safe comfortable welcoming environment for interaction and support. More transplant units are beginning to understand the needs unique to this population. One center developed a Therapeutic Music Video unique to the concerns of the AYA patients to test whether is affects the resilience in this population (Haase, 2009). The use of technology was very common for the population in this study.

6. Changing systems to accommodate health care learning and delivery: Providing age-appropriate and available information is valued by this population, and also can modulate the uncertainty (Corbeil, Laizner, Hunter, & Hutchison, 2009; Zebrack, et al., 2009) Information also needs to take into account developmental stage, and be tailored to the individual (Zebrack, et al., 2006). Since this age-group often feels “invincible”, gearing education with in depth teaching on the risk of infection, 50% readmission rate statistics, and reasons for adherence may assist with expectations. Gibson, et al, piloted an advanced symptoms management system utilizing mobile phone technology to report symptoms (Gibson, Aldiss, Taylor, Maguire, & Kearney, 2009). Feedback from the AYA patients said that it helped patients remember the symptoms to report to health care professionals, and health care professionals liked the fact that it gave AYA patients ability to take responsibility for symptoms. (Gibson, et al., 2009). Pamphlets, DVDs, and books focused on the needs of AYA patients are also helpful, and this study did use DVDs with young adults discussing issues of sexuality, peer issues, and coping. Adherence issues in this study centered on mask precautions, being on time for clinic appointments, and medications. Inpatient and clinic appointments scheduled to accommodate the complicated AYA patterns of late wake-up times, and more afternoon and evening attention peaks may help with patient involvement and adherence. It was not uncommon in this study for patients to be late to appointments or to reschedule them to later times.

7. Difficult topics: Spirituality and End-of Life: Strong spiritual support for the existential and identity crisis that can occur during this time may be very helpful in patient coping with isolation, identity issues, peers who do not understand, distraught families, and a sense of meaning of the experience. Factors that build hope may include God, future and organizing life in a new way (Juvakka & Kylma, 2009). In an exquisite model proposed by Corbeil, et al (2009), the cancer diagnosis causes a deviation from the normal developmental path. The cancer journey causes a detour in which uncertainty can be helpful, for example “looking at things differently” and has potential for an enlightened path, such as “believing”. Many patients in this current study expressed existential crisis such as “why did this transplant happen to me?”, “why am I alive, and what does it mean?” Frustration with losses, spiritual questions, fear of the future, finding meaning and other existential issues were mentioned in the qualitative data. We found that using trained chaplains can be very effective; often it is the “being present” with the suffering that is therapeutic in this crisis rather than offering solutions to unanswerable questions.

   Likewise, the information preparation for the end-of-life transition has been identified as important to AYA patients as they cope with uncertainty (Corbeil, et al., 2009). Up-front palliative discussion: inclusion of palliative care principles before the beginning of transplant to assist with end-of-life issues may help prepare the family and patient who face mortality.

8. Comprehensive Survivorship Support: Severe gaps exist in this population in regard to survivorship issues. Health care access for this population is a known problem due to limited insurance coverage, transition to independence, and multiple medical barriers(Fortuna, Robbins, Mani, & Halterman, 2010). Also, many patients in this study were either going to school or trying to go to school, looking for scholarships, navigating financial aid issues, and struggling with present and future work issues. In a pilot project Thompson, et al, (2009) formulated services for young adults in Australia to transition from treatment to follow-up care (Thompson, et al., 2009). A framework was developed which included the development of a transitional care plan, assistance with re-integration, and support for school and vocational preparation and opportunities. Strong social work support is vital for reintegration into society after transplantation with a comprehensive treatment plan including school and work reintegration, financial aid information, financial support from medical coverage, and life expenses, and ongoing assessment for social quality of life concerns.

9. Psychological Support: The need to have psychological and behavioral risk assessment and counseling to manage distress has been identified in the literature as an AYA need (Zebrack, et al., 2006) Adolescent cancer survivors, when compared to siblings were more likely to have difficulties with depression, anxiety, attention deficit and antisocial behavior (Schultz, et al., 2007) A high number of patients in this study did make use of the psychological services (80%). In addition, families in our group also were dysfunctional and a few parents were either divorced or separated. Psychology evaluations for all patients are imperative.

10. Dedicated Staff: The availability of a multidisciplinary team of providers who are knowledgeable about specific of treatment for AYA patients is ranked high as a biomedical treatment need during cancer therapy (Zebrack, et al., 2006). In addition, there is evidence to suggest that concentrating expertise in the AYA population can effect survival (Thomas, et al., 2006). To have a dedicated staff trained to deal with AYA needs is certainly a deficit in today’s health care environment. MDs, nurses, social workers, chaplains, and other allied health care professionals who are united in approach and their understanding of the needs of this population may be very helpful especially in all areas of needs including sexuality, education, psychological support, adherence, family planning, and career development.