Ursula M. Sansom‐Daly
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View article: Advance Care Planning in Multicultural Communities: A Document Analysis of Resources to Support Healthcare Staff and Consumers in Australia
Advance Care Planning in Multicultural Communities: A Document Analysis of Resources to Support Healthcare Staff and Consumers in Australia Open
Introduction Advance care planning (ACP) provides a person‐centric approach for discussing future care wishes that is responsive to individual preferences and needs. People from culturally and linguistically diverse (CALD) backgrounds have…
View article: Social Participation Among Long‐Term Survivors of Childhood and Adolescent Cancer
Social Participation Among Long‐Term Survivors of Childhood and Adolescent Cancer Open
Background The impact of cancer treatment on the social participation of childhood and adolescent cancer survivors remains understudied. Social participation is an important determinant of long‐term social outcomes. Therefore, this study a…
View article: Codesigning the iCanPlan Program to promote advance care planning among consumers from ethnic minority backgrounds in cancer care
Codesigning the iCanPlan Program to promote advance care planning among consumers from ethnic minority backgrounds in cancer care Open
Purpose Collaboration between medical interpreters and clinicians is crucial in conducting advance care planning (ACP) with people from ethnic minority backgrounds affected by cancer who require language support; however, limited opportuni…
View article: What constitutes optimal care coordination for primary brain tumors and how do we assess it in Australia and Aotearoa New Zealand? A Delphi consensus study
What constitutes optimal care coordination for primary brain tumors and how do we assess it in Australia and Aotearoa New Zealand? A Delphi consensus study Open
Background People with primary brain tumors (PBT) and their carers experience diverse issues and functional impairments, which can form barriers to accessing tailored health care. Care coordination (CC) addresses this dual challenge and is…
View article: The Rhythm of Connection: Describing the Heartbeats Intervention for Patients and Families Receiving Paediatric Palliative Care
The Rhythm of Connection: Describing the Heartbeats Intervention for Patients and Families Receiving Paediatric Palliative Care Open
Music therapy in paediatric palliative care offers a unique opportunity for emotional support, legacy creation, and therapeutic connection for children and their families. This paper describes the Heartbeats Intervention, as delivered by a…
View article: Exploring the impact of cancer on adolescents' and young adults' relational worlds
Exploring the impact of cancer on adolescents' and young adults' relational worlds Open
Background: Adolescent and young adult cancer survivors (referred to as “survivors” hereafter) experience their transition from childhood to adulthood alongside a cancer experience. Limited research has qualitatively assessed Australian su…
View article: Bridging the Gap: Embedding Psychosocial Oncology Research into Comprehensive Cancer Care for Children and Young People
Bridging the Gap: Embedding Psychosocial Oncology Research into Comprehensive Cancer Care for Children and Young People Open
The National Cancer Institute designated models of comprehensive cancer care centres endeavour to enable the delivery of high-quality, holistic cancer care, informed by research evidence across the cancer care trajectory. These comprehensi…
View article: What can we learn from the evidence of psychosocial support for carers of people with cancer and how do we advance our efforts? A meta-review study
What can we learn from the evidence of psychosocial support for carers of people with cancer and how do we advance our efforts? A meta-review study Open
Purpose Literature concerning programmes to support the well-being of carers of cancer survivors is vast, complex, and difficult to navigate, posing difficulties for identifying and translating relevant evidence. This study will advance th…
View article: Siblings in families of children with chronic disorders: a model of risk and protective factors
Siblings in families of children with chronic disorders: a model of risk and protective factors Open
Objective We empirically tested a family systems model’s ability to explain variance in psychosocial adjustment among siblings of children with chronic developmental and physical disorders (CDs). The model included the impact of CD severit…
View article: Identifying components of care coordination for primary brain tumor: A scoping review
Identifying components of care coordination for primary brain tumor: A scoping review Open
For people with primary brain tumors (PBT) and their carers, care coordination (CC) offers comprehensive, timely, person-centered care. This review aimed to systematically scope the breadth of literature relevant to approaches to CC for PB…
View article: A randomized controlled trial of a telehealth group cognitive intervention (LaTCH-BRAINS) to improve cognition after primary brain tumor diagnosis
A randomized controlled trial of a telehealth group cognitive intervention (LaTCH-BRAINS) to improve cognition after primary brain tumor diagnosis Open
Background Cognitive changes are common following primary brain tumor (PBT), impacting employment, independence, relationships, and quality of life (QoL). Despite this, tailored cognitive interventions are unavailable within Australia. The…
View article: Alignment of Palliative Care Service Structure and Standards of Care for Adolescents and Young Adults with Cancer: An International Survey of Clinical Practice
Alignment of Palliative Care Service Structure and Standards of Care for Adolescents and Young Adults with Cancer: An International Survey of Clinical Practice Open
Background: Access to timely, age-appropriate palliative care services and end-of-life communication are two standards of care for adolescents and young adults (AYAs) living with cancer where cure is uncertain or unlikely. Health professio…
View article: Adapting a Preparatory Skills‐Building Programme for Carers of People With Cancer Through Co‐Design: The iCanSupport Project
Adapting a Preparatory Skills‐Building Programme for Carers of People With Cancer Through Co‐Design: The iCanSupport Project Open
Introduction Health services rely upon carers to provide care for loved ones with cancer, yet many carers often feel ill‐prepared for this role. Despite a multitude of programmes to support carer mental health, programmes that help carers …
View article: Supporting Carers: Study Protocol of a Meta-Review of Psychosocial Interventions for Carers of People With Cancer
Supporting Carers: Study Protocol of a Meta-Review of Psychosocial Interventions for Carers of People With Cancer Open
Background While there is a clear need for psychosocial interventions that promote the well-being of carers of patients with cancer, the corresponding evidence base is disparate, complex, and difficult for end users to navigate and interpr…
View article: Attachment as a mechanism influencing end-of-life communication: An analogue investigation
Attachment as a mechanism influencing end-of-life communication: An analogue investigation Open
Talking about dying when faced with end-of-life may be important for achieving optimal outcomes for young people and their families. Given the lack of research on young people’s communication around end-of-life and death, this analogue stu…
View article: Adapting a preparatory skills-building program for carers of people with cancer through co-design: The iCanSupport Project.
Adapting a preparatory skills-building program for carers of people with cancer through co-design: The iCanSupport Project. Open
Introduction: Health services rely upon carers to provide care for a loved one with cancer, yet carers often feel ill-prepared for this role. Despite a multitude of programs to support carer mental health, programs that help carers feel be…
View article: Exploring Web-Based Information and Resources That Support Adolescents and Young Adults With Cancer to Resume Study and Work: Environmental Scan Study
Exploring Web-Based Information and Resources That Support Adolescents and Young Adults With Cancer to Resume Study and Work: Environmental Scan Study Open
Background Adolescents and young adults (AYAs) diagnosed with cancer experience physical, cognitive, and psychosocial effects from cancer treatment that can negatively affect their ability to remain engaged in education or work through can…
View article: Supporting carers: Study protocol of a meta-review of psychosocial interventions for carers of people with cancer
Supporting carers: Study protocol of a meta-review of psychosocial interventions for carers of people with cancer Open
Background While there is a clear need for psychosocial interventions that promote cancer carer wellbeing, the corresponding evidence base is disparate, complex and difficult for end-users to navigate and interpret. Carers remain under-sup…
View article: Supporting Carers: Study Protocol of a Meta-Review of Psychosocial Interventions for Carers of People With Cancer (Preprint)
Supporting Carers: Study Protocol of a Meta-Review of Psychosocial Interventions for Carers of People With Cancer (Preprint) Open
BACKGROUND While there is a clear need for psychosocial interventions that promote the well-being of carers of patients with cancer, the corresponding evidence base is disparate, complex, and difficult for end users to navigate and interp…
View article: Anticipatory anxiety and participation in cancer screening. A systematic review
Anticipatory anxiety and participation in cancer screening. A systematic review Open
Objectives To synthesize current evidence on the association between anticipatory anxiety, defined as apprehension‐specific negative affect that may be experienced when exposed to potential threat or uncertainty, and cancer screening to be…
View article: Specialty Palliative Care for Adolescents and Young Adults With Cancer—Developmental Considerations and an Agenda for Future Research
Specialty Palliative Care for Adolescents and Young Adults With Cancer—Developmental Considerations and an Agenda for Future Research Open
Sumit Gupta, MD, PhD; Qing Li, MMath; Alisha Kassam, MD, MPH; Adam Rapoport, MD, MHSc; Kimberley Widger, RN, PhD; Karine Chalifour, BSW, BA; Nancy N. Baxter, MD, PhD; Paul C. Nathan, MD, MSc; Natalie G. Coburn, MD, MPH; Rinku Sutradhar, PhD
View article: A Scoping Review Exploring Access to Survivorship Care for Childhood, Adolescent, and Young Adult Cancer Survivors: How Can We Optimize Care Pathways?
A Scoping Review Exploring Access to Survivorship Care for Childhood, Adolescent, and Young Adult Cancer Survivors: How Can We Optimize Care Pathways? Open
Childhood, adolescent, and young adult (CAYA) cancer survivors are at risk of developing late effects associated with their cancer and its treatment. Survivors' engagement with recommended follow-up care to minimize these risks is suboptim…
View article: The effects of cancer clinical decision support systems on patient-reported outcomes: A systematic review
The effects of cancer clinical decision support systems on patient-reported outcomes: A systematic review Open
Including patient-reported outcomes in the evaluation of DSS is critical to understand their impact. Inconsistencies in reporting of interventions may, however, be a contributing factor to heterogeneous effects of clinical DSS regarding a …
View article: Beyond Medical Care: How Different National Models of Care Impact the Experience of Adolescent and Young Adult Cancer Patients
Beyond Medical Care: How Different National Models of Care Impact the Experience of Adolescent and Young Adult Cancer Patients Open
Patient experience is positively associated with clinical effectiveness, quality care, and patient safety. This study examines the experience of care of adolescents and young adult (AYA) cancer patients from Australia and the United States…
View article: Exploring Web-Based Information and Resources That Support Adolescents and Young Adults With Cancer to Resume Study and Work: Environmental Scan Study (Preprint)
Exploring Web-Based Information and Resources That Support Adolescents and Young Adults With Cancer to Resume Study and Work: Environmental Scan Study (Preprint) Open
BACKGROUND Adolescents and young adults (AYAs) diagnosed with cancer experience physical, cognitive, and psychosocial effects from cancer treatment that can negatively affect their ability to remain engaged in education or work through ca…
View article: Adapting the Voicing My CHOiCES Advance Care Planning Communication Guide for Australian Adolescents and Young Adults with Cancer: Appropriateness, Acceptability, and Considerations for Clinical Practice
Adapting the Voicing My CHOiCES Advance Care Planning Communication Guide for Australian Adolescents and Young Adults with Cancer: Appropriateness, Acceptability, and Considerations for Clinical Practice Open
Background: Adolescents and young adults (AYAs) with life-threatening illnesses need support to discuss and voice their end-of-life choices. Voicing My CHOiCES (VMC) is a research-informed American advanced care planning guide designed to …
View article: ‘Like ships in the night’: A qualitative investigation of the impact of childhood cancer on parents’ emotional and sexual intimacy
‘Like ships in the night’: A qualitative investigation of the impact of childhood cancer on parents’ emotional and sexual intimacy Open
Background Childhood cancer is highly distressing for families and can place strain on parents’ relationships. Parental functioning and cohesiveness are important predictors of family functioning and adaptation to stress. This qualitative …
View article: New Frontiers in Child, Adolescent and Young Adult Psycho-Oncology Survivorship Care
New Frontiers in Child, Adolescent and Young Adult Psycho-Oncology Survivorship Care Open
The landscape of cancer survivorship has changed considerably from Fitzhugh Mullan’s conceptualization of the three sequential phases or ‘seasons of survival’ that an individual might expect to pass through, from the acute (cancer diagnosi…
View article: Thinking globally to improve care locally: A Delphi study protocol to achieve international clinical consensus on best-practice end-of-life communication with adolescents and young adults with cancer
Thinking globally to improve care locally: A Delphi study protocol to achieve international clinical consensus on best-practice end-of-life communication with adolescents and young adults with cancer Open
For the sizeable subset of adolescents and young adults whose cancer is incurable, developmentally appropriate end-of-life discussions are critical. Standards of care for adolescent and young adult end-of-life communication have been estab…