Sima Zadeh

Allowing Adolescents and Young Adults to Plan Their End-of-Life Care

OBJECTIVE: The objective of this study was to assess and compare the usefulness, helpfulness, and stress associated with reviewing a previously adapted advance care planning guide, My Thoughts, My Wishes, My Voice, in comparison with the widely used adult document Five Wishes by adolescents and young adults (AYAs) living with a serious illness. METHODS: Fifty-two participants (age 16–28) living with metastatic or recurrent cancer or HIV infection (acquired at birth or early in life) were presented pages randomly from My Thoughts, My Wishes, My Voice and, Five Wishes, and asked to rank 25 items on several factors, including how likely they would be to complete each statement. Participant opinion on suggested changes in content, design, format, and style was obtained and resulted in development of a new document. RESULTS: AYAs living with a life-threatening illness want to be able to choose and record (1) the kind of medical treatment they want and do not want, (2) how they would liked to be cared for, (3) information for their family and friends to know, and (4) how they would like to be remembered. CONCLUSIONS: AYA views of what should be included in an advance care planning guide were incorporated into a new document, Voicing My Choices, that provides youth, families and providers an opportunity to reduce the silence around the dying process by allowing an opportunity to share one’s voice. We provide guidance on how to incorporate this tool into care.

Psychosocial Assessment as a Standard of Care in Pediatric Cancer

This paper presents the evidence for a standard of care for psychosocial assessment in pediatric cancer. An interdisciplinary group of investigators utilized EBSCO, PubMed, PsycINFO, Ovid, and Google Scholar search databases, focusing on five areas: youth/family psychosocial adjustment, family resources, family/social support, previous history/premorbid functioning, and family structure/function. Descriptive quantitative studies, systematic reviews, and meta‐analyses (n = 149) were reviewed and evaluated using grading of recommendations, assessment development, and evaluation (GRADE) criteria. There is high quality evidence to support a strong recommendation for multifaceted, systematic assessments of psychosocial health care needs of youth with cancer and their families as a standard of care in pediatric oncology. Pediatr Blood Cancer

Opening end-of-life discussions: How to introduce Voicing My CHOiCES™, an advance care planning guide for adolescents and young adults

OBJECTIVE Each year, more than 11,000 adolescents and young adults (AYAs), aged 15-34, die from cancer and other life-threatening conditions. In order to facilitate the transition from curative to end-of-life (EoL) care, it is recommended that EoL discussions be routine, begin close to the time of diagnosis, and continue throughout the illness trajectory. However, due largely to discomfort with the topic of EoL and how to approach the conversation, healthcare providers have largely avoided these discussions. METHOD We conducted a two-phase study through the National Cancer Institute with AYAs living with cancer or pediatric HIV to assess AYA interest in EoL planning and to determine in which aspects of EoL planning AYAs wanted to participate. These results provided insight regarding what EoL concepts were important to AYAs, as well as preferences in terms of content, design, format, and style. The findings from this research led to the development of an age-appropriate advance care planning guide, Voicing My CHOiCES™. RESULTS Voicing My CHOiCES™: An Advanced Care Planning Guide for AYA became available in November 2012. This manuscript provides guidelines on how to introduce and utilize an advance care planning guide for AYAs and discusses potential barriers. SIGNIFICANCE OF RESULTS Successful use of Voicing My CHOiCES™ will depend on the comfort and skills of the healthcare provider. The present paper is intended to introduce the guide to providers who may utilize it as a resource in their practice, including physicians, nurses, social workers, chaplains, psychiatrists, and psychologists. We suggest guidelines on how to: incorporate EoL planning into the practice setting, identify timepoints at which a patients goals of care are discussed, and address how to empower the patient and incorporate the family in EoL planning. Recommendations for introducing Voicing My CHOiCES™ and on how to work through each section alongside the patient are provided.

When silence is not golden: Engaging adolescents and young adults in discussions around end-of-life care choices

Managing end-of-life care (EoL) is always emotionally taxing. Honest discussions about prognosis and EoL decision-making are often delayed due to questions about the legal competence of adolescents and young adults (AYA) to make decisions for themselves [1], providers feeling unprepared or without adequate skills to guide EoL discussions, or parental concern that discussing plans, including life support options or presenting an EoL planning document may send the message that the medical team wishes to withdraw care or that death is imminent. Data suggest that allowing AYA involvement in EoL planning can help parents and healthcare providers make informed decisions, alleviate distress, avoid decisional regret, and perhaps improve the patient’s quality of life (QoL) by respecting their values, beliefs, and preferences [2–4]. This commentary addresses recent progress in the field and focuses on how healthcare professionals can approach advance care planning (ACP) with AYA, involve their family members, and engage the entire health care team.

ShopTalk: a pilot study of the feasibility and utility of a therapeutic board game for youth living with cancer

PurposeShopTalk is a therapeutic game, created to help youth living with cancer talk about their illness in a non-threatening way. The aim of this study is to learn how the game is being used in clinical settings and to gather information regarding the usefulness of ShopTalk in establishing a therapeutic relationship and in assessing key psychosocial issues in the childs life.MethodsShopTalk was distributed at a social work pediatric oncology conference and to 70 sites. Game holders were asked to complete a survey regarding their clinical experience using ShopTalk.ResultsResponses came from 110 professionals. ShopTalk has been found to be as an effective tool in identifying coping skills and psychological adjustment, as well as issues related to family relationships, depression/sadness, stress, prognosis, peer relationships, and self-esteem. Respondents found ShopTalk useful from diagnosis to end of life. Qualitative feedback suggested therapeutic value along with discomfort with specific questions.ConclusionShopTalk appears to be a beneficial therapeutic tool in building rapport and identifying and discussing difficult issues with medically ill children. Areas for future versions of the game and research exploring patient/therapist outcomes are discussed

Taking Care of Care Providers: A Wellness Program for Pediatric Nurses

The cumulative effect of professional stress and compassion fatigue within the health care profession has been receiving increasing attention. The impact can be especially worrisome for nurses who work with chronic illness populations, such as oncology. While interventions targeted at reducing nurses stress and promoting wellness are cited as necessary, they are often lacking in busy medical environments. In this article, the authors describe a newly developed 10-session wellness program that was offered on 2 occasions to both inpatient and outpatient nursing staff. The nursing staff chose the content areas, and each session used a combined approach of hands on and didactic learning. A description of the activity offered during each session along with the core competency and objectives measured are provided. Overall, staff found the wellness series very helpful to themselves and to their ability to positively change their job performance.

Validity, specificity, feasibility and acceptability of a brief pediatric distress thermometer in outpatient clinics

Psychosocial distress is under‐recognized in children with cancer and other serious medical illnesses because of a focus on pressing medical concerns.

A worldview of the professional experiences and training needs of pediatric psycho‐oncologists

Thirty years after the origin of the field of psycho‐oncology, limited data exist about the work practices of professionals providing psychosocial care to children with cancer and their families.

Healthcare Professionals’ Preferences and Perceived Barriers for Routine Assessment of Patient‐Reported Outcomes in Pediatric Oncology Practice: Moving Toward International Processes of Change

Using patient‐reported outcomes (PROs) in clinical practice has been shown to enhance detection of health‐related quality of life problems and satisfaction with care in children with cancer. This study seeks to identify which PRO information healthcare professionals (HCPs) find useful and what the perceived barriers for routinely assessing PROs are.

Impact of Caregiving for a Child With Cancer on Parental Health Behaviors, Relationship Quality, and Spiritual Faith Do Lone Parents Fare Worse?

Caregiving stress has been associated with changes in the psychological and physical health of parents of children with cancer, including both partnered and single parents. While parents who indicate “single” on a demographic checklist are typically designated as single parents, a parent can be legally single and still have considerable support caring for an ill child. Correspondingly, an individual can be married/partnered and feel alone when caring for a child with serious illness. In the current study, we report the results from our exploratory analyses of parent self-reports of behavior changes during their child’s treatment. Parents (N = 263) of children diagnosed with cancer were enrolled at 10 cancer centers. Parents reported significant worsening of all their own health behaviors surveyed, including poorer diet and nutrition, decreased physical activity, and less time spent engaged in enjoyable activities 6 to 18 months following their child’s diagnosis. More partnered parents found support from friends increased or stayed the same since their child’s diagnosis, whereas a higher proportion of lone parents reported relationships with friends getting worse. More lone parents reported that the quality of their relationship with the ill child’s siblings had gotten worse since their child’s diagnosis. Spiritual faith increased for all parents.