Introduction to a Novel Palliative Care Intervention for Family Caregivers of Children and Adolescents Living with Rare Diseases (TH308)
advance care planning; adolescent; pediatrics; feasibility study; palliative therapy; major clinical study; needs assessment; videorecording; caregiver; nonhuman; Human immunodeficiency virus; human experiment; malignant neoplasm; wellbeing; skill; conference abstract; human; child; female; male; controlled study; interview; comorbidity; uncertainty; medical care; social isolation; rare disease; health disparity; rigor
Objectives: *Establish the need for a family caregiver intervention for parents of children with rare diseases.*Introduce the intervention and its components.*Disseminate findings from the piloting of this intervention. In the U.S. a rare disease is defined as a condition affecting fewer than 200,000 persons. Pediatric patients with rare diseases experience high mortality. Pediatric advance care planning (pACP), a key component of pediatric palliative care, has been proven to improve communication and spiritual and emotional well-being for children with cancer and HIV and their families. For providers, pACP, involves preparation and skill development to facilitate discussions about goals of care and future medical care choices. Due to the uncertainty surrounding a rare disease diagnosis, social isolation and the likelihood of parents being asked to make complex medical decisions for their child, rare diseases exact a severe emotional toll on families. There is an urgent need for interventions to ease the suffering of these families, yet few empirically validated interventions exist to address these issues. Moreover, children with rare diseases are a heterogeneous group who because of co-morbidities are often excluded from research, thereby creating a health disparity. Available research lacks scientific rigor. Our consultation with families of children with rare diseases and with the National Organization for Rare Disorders revealed that basic palliative care needs should be addressed prior to a pACP intervention. Thus, we pilot tested the innovative FACE-Rare intervention, integrating two, previously adapted for pediatrics, evidence-based interventions: Carer Support Needs Assessment Tool (Sessions 1 & 2) plus Respecting Choices (Sessions 3 & 4). For acceptability, feasibility and safety purposes, we pilot tested the 4-session intervention, conducted exit interviews, baseline and 2-week post-intervention assessments. This session will review the existing research on the palliative care needs of family caregivers of children with rare diseases, introduce this innovative intervention and its components, disseminate findings from the beta testing and pilot testing, and discuss future directions for research. Video clips will also be presented.
Friebert S; Fratantoni K; Wiener L; Needle J; Fraser J; Gaines J; Alderfer M; Lyon M
Journal of Pain and Symptom Management
2019
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<a href="http://doi.org/10.1016/j.jpainsymman.2018.12.037" target="_blank" rel="noreferrer noopener"> 10.1016/j.jpainsymman.2018.12.037</a>
Courageous conversations: Advance care planning and family communication
follow up; cooperation; conference abstract; human; controlled study; adult; young adult; advance care planning; conversation; anxiety assessment; anxiety disorder; social media
Background/Objectives: Discussing end-of-life (EoL) care is very challenging for adolescents and young adults (AYA) living with cancer. While many helpful documents exist to facilitate EoL conversations with adults, few resources exist to aid AYA in communicating their preferences for their care while they are living and how they want to be remembered after their death. Research completed at the National Cancer Institute, NIH LED to the development of an advance care planning (ACP) guide, Voicing My CHOiCESTM (VMC). The objectives of this study are to determine 1) the perceived helpfulness of VMC; 2) whether further revisions are needed, and 3) whether engaging in ACP using VMC is associated with reduced anxiety and/or improved communication about ACP with family. Design/Methods: AYA ages 18-39 (NCI definition of AYA) complete a baseline assessment of anxiety and communication. Participants review VMC and rate the helpfulness, stressfulness and changes needed for each page and complete 3 pages of the document. Assessment of anxiety and communication is repeated 1 month later. Results: Ninety AYA participated at baseline; 73 at follow up. Fifty-five percent had not previously discussed their wishes/preferences for EoL care with their family at baseline. Of those, 50% shared what they wrote in VMC at follow-up. For the 45% that had an initial conversation at baseline, 76% discussed what was written in the VMC. Among those who did not have the conversation, specific barriers were identified. Over 90% reported the VMC questions to be somewhat helpful/helpful/very helpful. Several changes were suggested, including remembrance on social media. Both general anxiety and anxiety around end of life planning decreased significantly (p<.01) between baseline and follow up. Conclusions: Introducing a developmentally appropriate ACP guide can facilitate EoL discussions with AYA family members. Our data suggests such discussions can lead to reduced generalized anxiety and anxiety specific to EoL planning.
Wiener L; Zadeh BS; Battles H; Leonard S; Fasciano K; Heath C; Lyon M; Donovan KA;De Arruda Colli MNF; Pao M
Pediatric Blood and Cancer
2018
<a href="http://doi.org/%2010.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>