Family risk factors
Promoting protective factors
Closed communication, e.g., family members are not kept informed and there are limited opportunities for involvement and discussion in decision-making
Encourage open communication among family members; keeping each other informed provide opportunities for negotiation and open decision-making
Avoidance of sharing of feelings, e.g., there is an overemphasis on positive thinking or fear that sharing feelings may upset or worry others
Teach family members to express feelings and feel comfortable doing so
Unbalanced cohesion, e.g., families may be enmeshed and may be dependent and reactive to each other, relying heavily on each other for support
Work with the family to achieve healthy boundaries; remaining close to each other, but also maintaining their own independence
Low levels of adaptability, e.g., difficulty accepting or adapting to change
Increase psychological flexibility among family members allowing them to respond and reorganize themselves well in times of change/stress
Loss of familiarity, e.g., disruptions to family life over an extended period of time can bring instability and lack of familial support
Work with the family to restore previous family activities and priorities. Also allow for the possibility to develop new ways of being as a family
Lack of a social support network, e.g., families who are socially isolated are likely to rely heavily/exclusively on immediate family members for emotional and practical support
Promote the development of, and access to, a social support network to provide adequate emotional and practical support outside of the immediate family
Parental distress, e.g., parents experiencing elevated levels of psychological distress, finding it difficult to adjust and cope with the difficulties a cancer diagnosis brings
Foster effective parental adjustment by assisting parents to be aware of their levels of distress and to seek psychological assistance where needed; provide coping strategies and increase psychological flexibility to allow acceptance of their situation
Financial instability (existing or as a result of the cancer diagnosis), e.g., due to medical costs, time out of work, travel
Link family with financial services to assist in ameliorating the financial impact associated with the cancer diagnosis
Poor parenting skills, e.g., focus on negative behaviors with little acknowledgment of positive behaviors, inconsistent discipline techniques, and expectations placed on each young person
Encourage parenting competence by teaching effective and consistent disciplining and monitoring of AYAs, good conflict resolution skills, and reinforcement of positive behaviors
Preexisting stressors, e.g., mental health issues, domestic violence, drug and alcohol issues, or care duties of other family members
Address stressors to nurture a stable family environment where additional stressors are well managed. This may involve referring to other services as appropriate
AYAs as Parents
Some AYA patients will already be parents when they are diagnosed with cancer. Pressing concerns include when, how, and how much to tell their children about the cancer diagnosis as well as changes in the parent’s appearance and family routines. Parents, especially single parents with cancer, will also worry about who can help care for their children during treatment or if they do not survive their cancer. AYA patients who are parents can benefit from specific guidance about how to talk with their children about cancer and what to watch for in terms of signs of child distress (Maynard et al. 2013). More information about addressing AYA parent’s concerns about their children can be found at www.mghpact.org.
Managing and Comprehending Information
Health-care providers should ask AYAs directly about how they would prefer to receive this information, be it verbal, written, and audiovisual instruction. Doing so becomes one way to restore a sense of control to AYAs, for whom lost control and autonomy are major challenges. The main topics AYA patients want information about are their cancer and its treatment, the decision-making process, the health-care system, and survivorship issues such as what can be done to manage persistent, worsening, or late adverse effects (Palmer et al. 2007; Zebrack 2008). Many AYAs also want information about healthy diet, exercise, infertility, complementary and alternative approaches, and insurance. Addressing AYAs’ information needs requires health professionals to (1) use a caring manner and understandable language, (2) allow time for AYAs to process information, (3) not assume AYAs are confident to ask questions, and (4) expect AYA and parent concerns to differ (Palmer et al. 2007). Many AYAs independently access cancer-related information and support online. With online usage prevalent in this age group, the development of evidence-based, developmentally appropriate Web-based information for AYA patients is essential. For example, the website www.nowwhat.org.au supports young people affected by cancer, whether they are dealing with their own or an immediate family member’s cancer. This website sets an international benchmark, combining access to professional counselors and youth-specific information and providing interactive, personalized online peer support community (Patterson et al. 2014).
Patient-Provider Relationships and Communication
The quality of the patient-provider relationship and therapeutic bond, specifically between the oncologist and AYA patient, has been shown to demonstrate a great impact on the psychosocial well-being of the patient, which, in turn, can have implications on treatment adherence and quality of life (Trevino et al. 2013). Special consideration of how information is communicated is essential to AYA patients who will engage most effectively with providers who present information in a direct yet genuine, non-authoritative manner (Trevino et al. 2013). Clinicians should demonstrate a sense of self-awareness and exhibit a clear sense of professional boundaries when working with AYAs, who might be inclined to question authority. Flexibility and patience on the part of the clinician are critical to the development of a trusting patient-provider relationship.
AYA health communications and collaborative decision-making can be sensitive issues. Some AYAs prefer to be shielded from discussions about their cancer, treatment options, and potential late effects and/or to assume a dependent position with regard to decision-making. Others want a prominent or fully independent role. Respecting AYAs’ preferences for autonomy can be agonizing for their parents. AYAs over age 18 years are legal adults in the United States and are expected to provide informed consent for both their medical treatment and participation in biomedical research. Their parents are deemed to have no rights to their health information without specific patient agreement, which could be a blanket agreement or vary by the nature and complexity of the decision being made.
AYAs under age 18 years should be engaged in health communications and decision-making and asked to provide assent. Although most AYAs lack experience to guide communications and decisions about cancer treatment and rely heavily on parental advice about how to proceed, others prefer to function independently of their parents. Parents, however, can feel responsible to protect and advocate for their children and thus struggle with their child and their child’s clinician over access to health information and control of decisions and other aspects of care.
Clinicians must determine, as early as feasible, the extent to which the AYA patient wishes to involve parents in health communications and treatment decision-making and then acknowledge that these wishes may change over time. Health-care providers must be mindful of the potential conflict and tension that might arise between AYAs and their families in decisions concerning medical care (Grinyer 2009). Should a patient wish for an individual(s), such as a parent or spouse/partner, to have access to her medical information, the treating health-care provider should implement procedures (Health Insurance Portability and Accountability Act (HIPAA) release form in the United States) and establish specific parameters for doing so. One approach is for the clinician to give information to the patient first and then, with patient permission and to the extent specified, to parents or other designated individuals with the patient together (Grinyer 2003). This approach also provides AYAs with opportunities to hear complex and significant information repeated and to learn from parent questions. However, it is also important to note that there may be a history of problems between a parent and child that will complicate the AYA’s cancer experience. Assessment is required to determine the best approach for integrating parents and other individuals into AYA care. This approach can also promote development of an open, trusting health-care relationship between AYAs, their social network members, and their oncology care providers.
Case Vignette : Patient-Provider Communication and Shared Decision-Making
A 22-year-old woman received chemotherapy and radiation for a brain tumor. During the course of her treatment, she took a medical leave from college and moved home to live with her mother, who served as her primary caregiver. The patient’s parents were divorced. The patient included her mother in the initial discussions with the patient’s primary medical team in order to review her diagnosis and proposed treatment plan. From the outset, it was evident that the patient displayed a full range of capacity to make medical decisions. Following the consultation, the social worker met with the patient individually to perform a psychosocial assessment. The primary goal of the interview was to educate the patient about her legal rights to make medical decisions and the confidential and protected nature of her health information. Moreover, the social worker aimed to glean an understanding of the patient’s communication style and preferences. The following questions were posed to the patient:
How do you learn best (i.e., verbal, written, and audiovisual formats)?
How much information would you like to know about your medical condition?
With whom have you engaged in the past when making important decisions, such as those concerning your health?
Are there others with whom you wish to have access to your medical information?
The patient stated that while she would be in charge of her health care, she wanted her mother to be engaged in all levels of her care from daily medical rounds to meetings with the medical team about changes in her medical condition and treatment planning. Moreover, the young woman was emphatic that she did not wish for her father, from whom she was estranged, to have access to her medical information or be involved in any aspect of her care. To formalize the patient’s wishes about who could be granted access to her health information, the social worker facilitated the implementation of a HIPAA release form, which established that her mother could have access to her health information. A copy of this document was included in the patient’s medical records so that health-care providers were properly informed of her wishes.
Clinical Trials
Pediatric and adult settings can each lack opportunities for AYA enrollment in clinical trials, particularly trials that consider the unique biology and behavior of some AYA cancers. Much of the improvement that has been made in survival rates for children with cancer has been attributed to their high rates of enrollment in national collaborative or institutional clinical trials. More than 60 % of pediatric cancer patients in the United States (most under the age of 15 years) are treated on research protocols (http://www.childrensoncologygroup.org/index.php/what-is-a-clinical-trial; accessed 13 Feb 2015). In contrast, 10–15 % of 15- to 19-year-olds and about 2 % of 20- to 29-year-olds with cancer are enrolled in such trials in the United States (Bleyer et al. 2006), with similar low figures observed in other Western countries (Fern and Whelan 2010; Ferrari et al. 2008). While disparities in clinical trial participation for 20- to 29-year-olds are similar across racial and ethnic groups, gender disparity with lower male participation stands out (Fern and Whelan 2010).
Some psychosocial barriers to AYA enrollment in clinical trials include intense emotional responses to the cancer diagnosis; lack of experience making important decisions, especially medical decisions; concerns about further loss of control and quality of life due to clinical trial requirements; lack of information about available clinical trials or complexity of the information; beliefs that community providers can offer the same level of care, monitoring, and services as what they would receive through clinical trial participation; misconceptions about clinical trials and fears of being “treated as a guinea pig”; and the costs that can be associated with being treated outside the local community (Buchanan et al. 2014). AYAs, however, report that they participate in clinical trials for both the therapeutic benefits that they hope to accrue for themselves and as a means to help other people like them (Miller et al. 2013). AYAs might need assistance identifying clinical trial options, comprehending trial requirements and implications and, for those who want to participate in a trial, ongoing emotional and practical support for accessing the trial and adhering to its requirements. Without improving AYA access and participation in clinical trials, improving medical outcomes for AYA cancer patients will continue to be limited.
Psychosocial Screening, Assessment, and Care Planning
A biopsychosocial approach requires the use of developmentally appropriate assessment tools to identify AYAs at risk for psychosocial distress or other conditions that may disrupt their care or compromise survival and quality of life. Given the dearth of instruments available (Wakefield et al. 2013), an AYA Oncology Psychosocial Care Manual (CanTeen Australia 2011a) was developed which includes an AYA-modified version of the National Comprehensive Cancer Network (NCCN) Distress Thermometer and Psychosocial Problem Checklist (areas related to practical, family, emotional, social, physical information) and a comprehensive assessment of cancer experience inclusive of physical systems review, family, education, employment, social activities, substance use (e.g., alcohol, drugs, tobacco), sexuality and sexual relationships, religious and spiritual beliefs, mental health, current stressors, strengths, and support. These instruments screen, assess, and assist in identifying patients at risk for psychosocial challenges managing their cancer (Evan and Zeltzer 2006; Hedstrom et al. 2006). Consideration should be given to acute stress symptoms along with risk factors including lower socioeconomic status, prior exposure to trauma, history of childhood adversity such as parental death, family psychiatric history, and protective factors such as social support and resilience that can affect AYAs’ emotional responses to cancer and its treatment.
The screening tool, care plan, and assessment measure were developed to be administered at key time points along the AYA psychosocial care pathway, aiming to support the young person throughout their treatment by addressing current support needs and taking into consideration needs that may be most significant posttreatment for healthy survivorship. In addition to the screening and assessment tools, the AYA Oncology Psychosocial Care Manual includes a care plan pro forma to provide a means for clinicians to collate relevant screening and assessment information and develop a strategy to manage issues raised. It enables treating teams to identify patients at risk, monitor the progressive coping of the patient, identify areas of need requiring additional care and support, and guide counseling so that AYAs receive the support they need, even as their needs change (CanTeen Australia 2011a; Palmer et al. 2014). Table 12.2 outlines how the patient moves through the pathway as described in the AYA Oncology Psychosocial Care Manual (pp. 5–6) (CanTeen Australia 2011b).
Table 12.2
The AYA psychosocial care pathway
Elements | Process |
|---|---|
Initial Psychosocial Screen | Every young person should receive a psychosocial screen, ideally within 2 weeks of diagnosis and/or first treatment cycle. It identifies the level of distress currently experienced by the patient and the nature of such distress. Information should also be provided about clinical trials, support organizations, entertainment, home comforts, websites, alcohol and drug use, fertility preservation, communication tools, sexual health, educational support, and the lead clinician |
Development of Care Plan | Within 2 weeks following the administration of the screening tool, a care plan based on the outcomes of the screening tool should be developed by the treating team in collaboration with the patient. It focuses on addressing the current needs of the patient through referral, information provision, further assessment, and/or standard patient management |
Second Screen and Psychosocial Assessment | This is conducted once treatment is established. Approximately 8 weeks post diagnosis and/or treatment commencement is a significant period for the patient. Given it is often a time of changing and/or increasing need, a second screen is conducted. Resources permitting, it is beneficial for patients to also receive a full psychosocial assessment during this stage of their cancer journey to further inform care planning and the provision of psychosocial support |
Development of Working Care Plan | While the template for the Working Care Plan is the same as that used for the initial care plan, the information documented differs due to the clinician’s increased knowledge of the patient, their family, and environment. Developed within 2 weeks of the Second Screen and Psychosocial Assessment, the Working Care Plan should have further depth of detail than the initial care plan and incorporate patient-specific strategies to manage adherence, identify risks, and plan for survivorship |
Progress Screen | A Progress Screen is conducted approximately 6 months post diagnosis and/or treatment commencement to address any changes in the patient’s experience, illness trajectory, family, or environment throughout the cancer journey |
Revision of Working Care Plan | Any changes in need identified by the Progress Screen should be incorporated into a revised care plan to allow continued patient support in a relevant and effective manner |
Further Screening and Care Planning | Any further screening and care planning should take place at the clinician’s discretion or the patient’s request. At a minimum, this should occur at remission, recurrence, or progression. Additional time points to consider include changes in treatment, changes in treatment goals, treatment completion, and during significant times in the young person’s life (e.g., moving into a new school year, relationship breakups, family breakdown) |
The initial psychosocial assessment should also include attention to substance abuse risk factors including personal, family or peer group history of substance abuse (e.g., illicit drugs, prescription drugs, alcohol), and personal or family history of psychological problems especially depression. This is especially important since most AYA patients will be prescribed opioid therapy for cancer-related pain. Abuse risk factors are dynamic and must be carefully monitored over the cancer trajectory (Pergolizzi et al. 2012). Overall, AYAs are more likely to abuse opioids than adults (Pergolizzi et al. 2012), and opioid abuse can develop through experimentation or legitimate opioid use. AYAs who use more than one opioid concurrently seem to merit particularly close monitoring for abuse (Ehrentraut et al. 2013).
Treatment Adherence
Whether or not an AYA patient is eligible for or opts to enroll in a clinical trial, treatment adherence is a significant issue. Less than 90 % adherence to oral therapy has been associated with 3.9-fold higher risk of relapse among children and adolescents with acute lymphoblastic leukemia (Bhatia et al. 2012). Adolescents are among the groups at highest risk for suboptimal adherence to oral cancer therapy. One small study found that adolescents took less than 75 % of prescribed doses and had perfect adherence to their oral regimen post-stem cell transplant on fewer than 4 days per week (McGrady et al. 2014). Adolescent difficulties with adherence to oral therapy tend to become more pronounced over time (McGrady et al. 2014; Rohan et al. 2015). Adolescent adherence can be adversely affected by factors that include wanting to be like their peers, cognitive decline, and lower parental involvement (Buchanan et al. 2014; Malbasa et al. 2007). Factors associated with perfect adherence include having future-oriented goals, family support, and a second “overprotective” parent caregiver (Hullman et al. 2015).
Clinicians should expect that AYAs will have difficulties with adherence and that adherence will deteriorate over time (Bhatia et al. 2012). Means of assessing adherence include self-report, pharmacy records, pill counts, and laboratory tests such as leukocyte counts and drug metabolite assays. Self-report tends to overestimate adherence for reasons that include social desirability and recall bias. Clinicians can elicit more reliable self-reports by using nonjudgmental, understanding, and optimistic approaches that normalize less than perfect adherence and include questions about doses missed during specific time frames and the circumstances. Clinicians can also explore strategies to improve adherence and reinforce good adherence. Parents might help by obtaining and organizing medications and establishing reminder systems to maximize adherence (Malbasa et al. 2007). However, given their drive for independence, AYAs can be irritated by parental involvement. Also, parents with high demands on their time and low levels of social support might prematurely delegate sole responsibility for medication adherence to the AYA (Bhatia et al. 2012). Clinicians can coach AYAs in explicating what they need from their parents with regard to supporting positive health behaviors such as helping AYAs stay organized with medications and fostering engagement in decisions about medical care.
At diagnosis, health literacies and reading abilities in English and the AYA family’s primary language also should be assessed. AYAs, and when applicable their parents and partners, should be encouraged to discuss their understandings of the disease and its prognosis, treatment goals, and beliefs about treatment efficacy and to define their roles and responsibilities in adherence considering AYA development and routines (Williams 2001). AYAs routinely should be provided with precise verbal and written information, in both English and their primary language, about the treatment that has been prescribed and copies of treatment calendars.
Information is not sufficient to promote optimal adherence. Regular reminders via mobile devices using Internet applications such as “Pillbox” and “MedCoach” could help promote AYA adherence by using the normative means that AYAs use to communicate and manage their lives (Santacroce and Crandell 2013). Reminders can be sent by short message service (SMS) or text messaging, or personal devices can be set to alarm or display an image at predetermined times when medication is due. Other possibilities include medication adherence-oriented applications that AYAs can download to their smartphones (e.g., MyMedSchedule) and provide means for recording doses and side effects (Dayer et al. 2013).
Technology and social media should not be overlooked as effective tools for addressing adherence in the adolescent and young adult population. For example, the videogame “Re-Mission,” which conceptualizes chemotherapy as battling cancer, has been shown to improve adolescents’ understanding of and engagement in cancer treatment (Kato et al. 2008). The facilitation of social media such as Facebook and Twitter, when utilized in a safe and HIPAA-compliant manner, also may serve as effective platforms of engagement with AYAs in medication adherence and other important aspects of cancer care.
Case Vignette : Medication Adherence
A 17-year-old female patient with acute lymphoblastic leukemia who was in the middle of her treatment regimen reported to her primary oncologist that she was no longer taking her oral chemotherapy medication as prescribed. The social worker met with her to explore the patient’s attitudes and behaviors as they might relate to nonadherence. The patient talked about increased stress related to her returning to school and her mother working longer hours. With the transition back to school, the patient indicated a heightened sense of wanting to feel “normal” again and a desire to spend more time with friends. She endorsed the belief that continuing to take chemotherapy meant that she was still sick, an identity that she wanted desperately to break away from in an attempt to return to “normal.” She also talked about “forgetting” to take her medication and about not being reminded to do so by her mom. After the meeting, the social worker met with the patient’s mother to gain a better understanding of the family system. The patient’s mother reported that her job had become more demanding and as a result, she was less focused on her daughter’s medication adherence. Based on these separate encounters, the team decided to meet with the patient and her mother to address how to better support the patient’s efforts toward improved medication adherence. Psychoeducation about the critical importance of medication adherence to overall survival was provided verbally and with educational pamphlets. In addition, medication organizational systems were suggested including a weekly pillbox and electronic medication calendars. Moreover, the social worker began to provide counseling to the patient on a regular basis to address her beliefs about her identity as a cancer patient and connected her with programs to meet other teens living with cancer, including the Ulman Cancer Fund for Young Adults and the Leukemia & Lymphoma Society.
Stay updated, free articles. Join our Telegram channel
Full access? Get Clinical Tree
