Adolescent end of life preferences and congruence with their parents' preferences: Results of a survey of adolescents with cancer

Jacobs, Shana; Pérez, J.A. Martínez; Cheng, Yao I.; Sill, Anne; Wang, Jichuan; Lyon, Maureen E.

doi:10.1002/pbc.25358

Cited by 107 publications

(159 citation statements)

References 20 publications

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“…These findings support prior research and highlight the important role that parents continue to play during an adolescent's cancer treatment and at the end-of-life [24,12]. While older children and adolescents are seeking autonomy from their parents, they also rely on their parents to filter information and free them from the burdens of hearing overly difficult information.…”

Section: Discussionsupporting

confidence: 74%

“…In addition, although communication is the most common 'procedure' in medicine, the art of communicating with pediatric patients is rarely formally taught [6] and is an area in which health care providers feel poorly prepared [7]. Previous literature has evaluated child and adolescent preferences for learning about the cancer diagnosis [8], engaging in decision-making [9,10], receiving bad news [11] and making plans for end-of-life care [12,13]. We know little about their preferences for learning about possible outcomes of their illness, including whether cure is possible and what their future life may be life.…”

Section: Introductionmentioning

confidence: 99%

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Communication preferences of pediatric cancer patients: talking about prognosis and their future life

Brand

Fasciano

Mack

2016

Support Care Cancer

104

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Purpose-The American Academy of Pediatrics recommends that healthcare providers communicate information to patients in a truthful and developmentally appropriate manner. However there is limited guidance about how to translate these recommendations into clinical practice. The aim of this study was to explore how young cancer patients experienced communication around their illness, especially communication about possible outcomes from disease or treatment.Methods-Participants included young people ages 8 to under 18 years with cancer (N=16). Semi-structured interviews focused on their expectations about the future, the process of information exchange, and their preferences for communication within the pediatric oncology setting.Results-Overall, participants wanted medical information to be provided to them by their healthcare providers and wanted to be direct participants in medical conversations. However, many participants displayed some ambivalence or conveyed conflicting wishes for prognostic information. For example, some participants reported that they were satisfied with what they knew, but later raised lingering questions. While not the focus of the study, almost every participant discussed social concerns as a key concern for their present and future life.Conclusions-While most pediatric cancer patients want to be involved in conversations about their cancer care, including conversations about prognosis, this is an individual and sometimes fluctuating decision, and healthcare providers should be encouraged to discuss preferences for involvement with patients and families. This study highlights the importance of understanding the HHS Public Access

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Section: Discussionsupporting

confidence: 74%

Section: Introductionmentioning

confidence: 99%

Communication preferences of pediatric cancer patients: talking about prognosis and their future life

Brand

Fasciano

Mack

2016

Support Care Cancer

104

View full text Add to dashboard Cite

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“…watching my leg.respond to the chemo.''). In contrast, reports of physical distress were the most common burden identified overall (32% [95% CI [25][26][27][28][29][30][31][32][33][34][35][36][37][38][39]), with the majority of participants identifying physical distress related to receiving chemotherapy, surgery, and radiation (''just the first time getting [chemotherapy]-that's the hardest thing I've ever done-in my seventeen years''). Less concrete burdens were also commonly identified, including the threat of disability, new illness, intimacy issues, and infertility.…”

Section: Analysis By Themementioning

confidence: 99%

The benefits and burdens of cancer: A prospective, longitudinal cohort study of adolescents and young adults.

Straehla

Shutske

Yi‐Frazier³

et al. 2016

JCO

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Background: Adolescents and early young adults (AYAs) with cancer are at high risk for poor outcomes. Positive psychological responses such as benefit-finding may buffer the negative impacts of cancer but are poorly understood in this population. Objective: We aimed to prospectively describe the content and trajectory of benefit-and burden-finding among AYAs to develop potential targets for future intervention. Patients and Methods: One-on-one semistructured interviews were conducted with English-speaking AYA patients (aged 14-25 years) within 60 days of diagnosis of a noncentral nervous system malignancy requiring chemotherapy, 6-12 and 12-18 months later. Interviews were coded using directed content analyses with a priori schema defined by existing theoretical frameworks, including changed sense of self, relationships, philosophy of life, and physical well-being. We compared the content, raw counts, and ratios of benefit-toburden by patient and by time point. Setting/subjects: Seventeen participants at one tertiary academic medical center (mean age 17.1 years, SD = 2.7) with sarcoma (n = 8), acute leukemia (n = 6), and lymphoma (n = 3) completed 44 interviews with >100 hours of transcript-data. Results: Average benefit counts were higher than average burden counts at each time point; 68% of interviews had a benefit-to-burden ratio >1. Positive changed sense-of-self was the most common benefit across all time points (44% of all reported benefits); reports of physical distress were the most common burden (32%). Longitudinal analyses suggested perceptions evolved; participants tended to focus less on physical manifestations and more on personal strengths and life purpose. Conclusions: AYAs with cancer identify more benefits than burdens throughout cancer treatment and demonstrate rapid maturation of perspectives. These findings not only inform communication practices with AYAs but also suggest opportunities for interventions to potentially improve outcomes.

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“…Neoplasms occupied the second position (7%) of deaths of children and adolescents in 2011 [1,6]. Therefore patients and their families are often forced to confront end-of-life (EOL) issues [7,8,9] and although the specific impact of the loss of a child may differ for parents, a child's death is often considered the ''ultimate loss'' [10,11].…”

mentioning

confidence: 99%

“…The Institute of Medicine acknowledged that a critical component of the definition of a "good death" generally accords with the wishes of patients and families [42,44]. Moreover, Regardless of the preferred location, when families are able to choose and plan the location of death, the dying process and bereavement experience both go more smoothly [7,45].…”

mentioning

confidence: 99%

Obstacles to the promotion of dialogue between parents, children and health professionals about death and dying in pediatric oncology

Filho¹,

Neto²,

Januário³

et al. 2015

Int Arch Med

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Despite advances in cancer treatments and improved prognosis, the number of deaths from the disease is high in the world. In Brazil, cancer is the second leading cause of death among children and adolescents, forcing family members, patients and professionals to deal with the issues of human finitude. The multidisciplinary team considers the discussions at the end of life as a difficult task to be performed on pediatric patients. The family is essential to overcome the communication barriers, acting as liaison between the multidisciplinary team and the patient. Children should be invited to participate in the decisionmaking process and their wishes should be honored at the end of life. Professionals should to be able to meet the physical, psychosocial, spiritual, social and cultural rights of patients and families. Discussions at the end of life with pediatric patients are key to promoting a "good death", however there are few studies that address this issue.

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Adolescent end of life preferences and congruence with their parents' preferences: Results of a survey of adolescents with cancer

Cited by 107 publications

References 20 publications

Communication preferences of pediatric cancer patients: talking about prognosis and their future life

Communication preferences of pediatric cancer patients: talking about prognosis and their future life

The benefits and burdens of cancer: A prospective, longitudinal cohort study of adolescents and young adults.

Obstacles to the promotion of dialogue between parents, children and health professionals about death and dying in pediatric oncology

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