Maureen E. Lyon
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View article: Research metrics of Australian eating disorders researchers
Research metrics of Australian eating disorders researchers Open
Building the research capacity and capability of Australia’s eating disorder (ED) research workforce has been identified as a key strategy to respond to the increasing prevalence of EDs. However, there is currently a limited understanding …
View article: Pediatric Advance Care Planning and Adolescent Preparedness and Quality of Life: An RCT
Pediatric Advance Care Planning and Adolescent Preparedness and Quality of Life: An RCT Open
BACKGROUND AND OBJECTIVE To evaluate the efficacy of Family-Centered Advance Care Planning for Teens With Cancer (FACE-TC) on adolescents’ quality of life. METHODS A clinical trial randomized adolescent-family dyads at a 2:1 ratio to eithe…
View article: Impact of mental health in persons living with rare disease: Findings from the AMCP Market Insights Program
Impact of mental health in persons living with rare disease: Findings from the AMCP Market Insights Program Open
Within the framework of its Market Insights Program, AMCP convened a panel of experts representing diverse stakeholders to identify alterations to plan design and/or coverage options geared toward improving the diagnosis and treatment of m…
View article: Advance Care Planning for Children With Rare Diseases: A Pilot RCT
Advance Care Planning for Children With Rare Diseases: A Pilot RCT Open
BACKGROUND AND OBJECTIVE Pediatric rare diseases are often life-limiting conditions and/or require constant caregiving. Investigators assessed the initial efficacy of the FAmily CEntered (FACE) pediatric advance care planning (pACP), FACE-…
View article: Effect of Family Centered Pediatric Advance Care Planning for Children with Rare Diseases on Meaning/Peace (CO101B)
Effect of Family Centered Pediatric Advance Care Planning for Children with Rare Diseases on Meaning/Peace (CO101B) Open
View article: PP16.002 Effect of Face®-TC on adolescents’ decisional support, preparedness, and symptoms at 3 and 12-months post-intervention
PP16.002 Effect of Face®-TC on adolescents’ decisional support, preparedness, and symptoms at 3 and 12-months post-intervention Open
Background and Aims Pediatric advance care planning (pACP) is a process of preparation and skill development to facilitate discussions about future medical care choices. We evaluated the efficacy of FACE®-TC on adolescents' decisional supp…
View article: BOS5c.003 FACE-rare: a novel palliative care intervention for family caregivers of children living with a rare disease
BOS5c.003 FACE-rare: a novel palliative care intervention for family caregivers of children living with a rare disease Open
Background Pediatric patients with rare diseases experience high mortality. Pediatric advance care planning (pACP) has been proven to improve communication and spiritual and emotional well-being. Few empirically validated interventions exi…
View article: Recruitment and retention challenges and strategies in randomized controlled trials of psychosocial interventions for children with cancer and their parents: a collective case study
Recruitment and retention challenges and strategies in randomized controlled trials of psychosocial interventions for children with cancer and their parents: a collective case study Open
Objective In pediatric oncology there are few examples of successful recruitment and retention strategies in psychosocial care research. This study aims to summarize experiences, challenges, and strategies for conducting randomized control…
View article: Special Issue: Psychosocial Considerations for Children and Adolescents Living with a Rare Disease
Special Issue: Psychosocial Considerations for Children and Adolescents Living with a Rare Disease Open
This Special Issue of the journal Children constitutes an opportune moment to reflect on the psychosocial needs of children living with rare diseases and of their families [...]
View article: Effect of the Family-Centered Advance Care Planning for Teens with Cancer Intervention on Sustainability of Congruence About End-of-Life Treatment Preferences
Effect of the Family-Centered Advance Care Planning for Teens with Cancer Intervention on Sustainability of Congruence About End-of-Life Treatment Preferences Open
ClinicalTrials.gov Identifier: NCT02693665.
View article: Adolescent and Young Adult Initiated Discussions of Advance Care Planning: Family Member, Friend and Health Care Provider Perspectives
Adolescent and Young Adult Initiated Discussions of Advance Care Planning: Family Member, Friend and Health Care Provider Perspectives Open
Background and Aims End-of-life (EoL) discussions can be difficult for seriously ill adolescents and young adults (AYAs). Researchers aimed to determine whether completing Voicing My CHOiCES (VMC)—a research-informed advance care planning …
View article: The Transition to Adulthood for Youth Living with Rare Diseases
The Transition to Adulthood for Youth Living with Rare Diseases Open
More children with rare diseases survive into adulthood. The transition period to adult healthcare presents many challenges for pediatric rare diseases. Few adolescents or their families receive any transitional support for the transition …
View article: An Intervention in Congruence for End-of-Life Treatment Preference: A Randomized Trial
An Intervention in Congruence for End-of-Life Treatment Preference: A Randomized Trial Open
BACKGROUND AND OBJECTIVES There is a gap in family knowledge of their adolescents’ end-of-life (EOL) treatment preferences. We tested the efficacy of Family Centered Advance Care Planning for Teens with Cancer (FACE-TC) pediatric advance c…
View article: Family-Centered Advance Care Planning: What Matters Most for Parents of Children with Rare Diseases
Family-Centered Advance Care Planning: What Matters Most for Parents of Children with Rare Diseases Open
Few studies have described the goals and wishes of parents caring for their children with rare diseases, specifically when children are unable to communicate their preferences directly. The purpose of this study was to describe the parent’…
View article: “It Is a Whole Different Life from the Life I Used to Live”: Assessing Parents’ Support Needs in Paediatric Palliative Care
“It Is a Whole Different Life from the Life I Used to Live”: Assessing Parents’ Support Needs in Paediatric Palliative Care Open
Aims: This feasibility study aimed to systematically identify and address the support needs of parents of children with life-limiting illnesses and to assess whether the systematic approach was acceptable and relevant to parents. Methods: …
View article: Voicing their choices: Advance care planning with adolescents and young adults with cancer and other serious conditions
Voicing their choices: Advance care planning with adolescents and young adults with cancer and other serious conditions Open
Objectives To determine whether engaging in advance care planning (ACP) using a formal tool, Voicing My CHOiCES (VMC), would alleviate adolescent and young adults (AYAs) anxiety surrounding ACP and increase social support and communication…
View article: The intersectionality of gender and poverty on symptom suffering among adolescents with cancer
The intersectionality of gender and poverty on symptom suffering among adolescents with cancer Open
Background To determine if the intersectionality of gender and poverty is associated with health disparities among adolescents with cancer. We hypothesized unobserved latent classes of patients exist with respect to cancer‐related symptoms…
View article: Pediatric Advance Care Planning and Families’ Positive Caregiving Appraisals: An RCT
Pediatric Advance Care Planning and Families’ Positive Caregiving Appraisals: An RCT Open
BACKGROUND AND OBJECTIVES: Little is known about how families respond to pediatric advance care planning. Physicians are concerned that initiating pediatric advance care planning conversations with families is too distressing for families.…
View article: Advance Care Planning—Complex and Working: Longitudinal Trajectory of Congruence in End-of-Life Treatment Preferences: An RCT
Advance Care Planning—Complex and Working: Longitudinal Trajectory of Congruence in End-of-Life Treatment Preferences: An RCT Open
Context: The effect of advance care planning (ACP) interventions on the trajectory of end-of-life treatment preference congruence between patients and surrogate decision-makers is unstudied. Objective: To identify unobserved distinctive pa…
View article: What Do Adults With HIV Want? End-of-Life Care Goals, Values and Beliefs by Gender, Race, Sexual Orientation
What Do Adults With HIV Want? End-of-Life Care Goals, Values and Beliefs by Gender, Race, Sexual Orientation Open
Objective: We examined factors influencing end-of-life care preferences among persons living with HIV (PLWH). Methods: 223 PLWH were enrolled from 5 hospital-based clinics in Washington, DC. They completed an end-of-life care survey at bas…
View article: Provider Discussion about Lifestyle by Cancer History: A Nationally Representative Survey
Provider Discussion about Lifestyle by Cancer History: A Nationally Representative Survey Open
Background: Providers are uniquely positioned to encourage health-promoting behaviors, particularly among cancer survivors where patients develop trust in providers. Methods: We utilized the National Health Interview Survey to identify adu…
View article: The Effect of FAmily-CEntered (FACE<sup>®</sup>) Pediatric Advanced Care Planning Intervention on Family Anxiety: A Randomized Controlled Clinical Trial for Adolescents With HIV and Their Families
The Effect of FAmily-CEntered (FACE<sup>®</sup>) Pediatric Advanced Care Planning Intervention on Family Anxiety: A Randomized Controlled Clinical Trial for Adolescents With HIV and Their Families Open
Clinicians fear pediatric advance care planning (pACP) for adolescents is too distressing for families. Multisite longitudinal randomized controlled trial of adolescents with HIV tested the effect of FAmily-CEntered (FACE ® ) pACP interven…
View article: Shared spiritual beliefs between adolescents with cancer and their families
Shared spiritual beliefs between adolescents with cancer and their families Open
Background FAmily CEntered (FACE) Advance Care Planning helps family decision makers to understand and honor patients’ preferences for future health care, if patients cannot communicate. Spiritual well‐being is a key domain of pediatric on…
View article: Weaver et al's Response to Morrison: Advance Directives/Care Planning: Clear, Simple, and Wrong (DOI: 10.1089/jpm.2020.0272)
Weaver et al's Response to Morrison: Advance Directives/Care Planning: Clear, Simple, and Wrong (DOI: 10.1089/jpm.2020.0272) Open
View article: “Living life as if I never had cancer”: A study of the meaning of living well in adolescents and young adults who have experienced cancer
“Living life as if I never had cancer”: A study of the meaning of living well in adolescents and young adults who have experienced cancer Open
Background Cancer diagnoses pose challenges to adolescents’ and young adults’ (AYA) physical, mental, and emotional health, and developmental tasks. In order for AYAs, caregivers, clinicians, and other collaborators to optimize health outc…
View article: Association of Religious and Spiritual Factors With Patient-Reported Outcomes of Anxiety, Depressive Symptoms, Fatigue, and Pain Interference Among Adolescents and Young Adults With Cancer
Association of Religious and Spiritual Factors With Patient-Reported Outcomes of Anxiety, Depressive Symptoms, Fatigue, and Pain Interference Among Adolescents and Young Adults With Cancer Open
In this study, multiple facets of spirituality and religiousness were associated with anxiety, depression, and fatigue, all of which were indirectly associated with the participant's sense of meaning and peace, which is a modifiable proces…
View article: Congruence Gaps Between Adolescents With Cancer and Their Families Regarding Values, Goals, and Beliefs About End-of-Life Care
Congruence Gaps Between Adolescents With Cancer and Their Families Regarding Values, Goals, and Beliefs About End-of-Life Care Open
Many families had a poor understanding of their adolescent's values regarding their own end-of-life care, such as when to initiate end-of-life conversations and preference for being off machines that extend life. Pediatric advance care pla…
View article: Effect of FAmily CEntered (FACE®) Advance Care Planning on Longitudinal Congruence in End-of-Life Treatment Preferences: A Randomized Clinical Trial
Effect of FAmily CEntered (FACE®) Advance Care Planning on Longitudinal Congruence in End-of-Life Treatment Preferences: A Randomized Clinical Trial Open
View article: Abstinence-Only-Until-Marriage: An Updated Review of U.S. Policies and Programs and Their Impact
Abstinence-Only-Until-Marriage: An Updated Review of U.S. Policies and Programs and Their Impact Open
Adolescence is marked by the emergence of human sexuality, sexual identity and the initiation of intimate relations; within this context, abstinence from sexual intercourse can be a healthy choice. However, programs that promote abstinence…
View article: The role of religiousness and spirituality in health-related quality of life of persons living with HIV: A latent class analysis.
The role of religiousness and spirituality in health-related quality of life of persons living with HIV: A latent class analysis. Open
Understanding how religiousness and spirituality influence HRQoL can help the medical community develop holistic, patient-centered and culturally-sensitive interventions that could improve outcomes for PLWH and potentially mitigate the imp…