Pandora Patterson

CanTeen

(1) Background: The COVID-19 global pandemic has impacted people worldwide with unique implications for vulnerable groups. In this cross-sectional study, we examined the impact of the early pandemic on children undergoing active cancer treatment and their parents. (2) Methods: In May 2020, 30 parents of children undergoing active cancer treatment c...

Background: Consumer engagement in health care is recognized as a critical strategy to minimize healthcare-associated harms, however, little research has focussed on strategies to engage young people in healthcare safety. This study explores the suitability of commonly used engagement strategies, such as brochures, interactive bedside charts or ap...

Adolescents and young adults (AYAs) diagnosed with cancer experience disrupted engagement in education and employment, which can have profound and long-term impacts on their quality of life. It is therefore vital to offer AYAs access to tailored, evidence-based services to help them to achieve their education and employment goals. However, few such...

PEER is a four‐day residential program for adolescents impacted by their own or a relative's cancer, with both psychosocial (acceptance and commitment therapy, self‐compassion) and recreational components. This study aimed to determine whether previously observed improvements in quality of life amongst highly distressed participants were mediated b...

Objective: Most adolescents and young adults (AYA) can expect to survive a cancer diagnosis and treatment, but all will be left with the potential of long-term negative effects that can impact their ability to reach their full potential in life. Understanding aspects of psychological, functional, and social health and well-being outcomes, is pivot...

Objective Routine psychosocial screening and assessment of people diagnosed with cancer are crucial to the timely detection of distress and provision of tailored supportive care; however, appropriate screening tools have been lacking for adolescents and young adults (AYAs), who have unique needs and experiences. One exception is the recently valida...

Background Adolescent and young adult (AYA; 13 to 39 years) survivors of childhood cancer may be especially vulnerable to physical health and mental health concerns during the pandemic. We investigated the impact of COVID-19 on the mental health status of AYA survivors (Aim 1) and shared tailored, evidence-based health-related information on COVID-...

Purpose: Fertility is a major concern for adolescents and young adults (AYAs, 15-30 years) diagnosed with cancer, yet they often report a lack of information and understanding about fertility impacts and preservation options. This study aimed to evaluate the acceptability and preliminary efficacy of Maybe Later Baby (MLB), an oncofertility informat...

Engaging young people in organisational leadership offers opportunities for them to contribute and make a positive difference to their communities, benefitting both the young people and the organisations with which they are involved. However, best practices for engaging and supporting young leaders in cancer support organisations remain unclear. Th...

Adolescent and young adult (AYA) cancer patients report a need for support to stay in contact with loved ones after diagnosis. In response to this the Dutch AYA ‘Young & Cancer’ Care Network co-created the mobile application ‘AYA Match’. This study describes the cocreational process, the characteristics of the users and their expectations regarding...

Aim: Nonadherence to oral chemotherapy (OC) can lead to health complications, including premature death. Mobile phones are increasingly used to deliver medication adherence interventions. However, there is limited evidence about mobile phone-based interventions to increase adherence to OC, specifically. This study explores the proof-of-concept of...

Not monitoring adherence to oral anticancer therapies (OAT) can lead to poor clinical outcomes, including premature death as reported by Foulon et al. (Acta Clin Belg 66(2):85-96, 2011) and Greer et al. (Oncologist 21(3):354-76, 2016). Barriers to the implementation of supportive cancer care interventions in medication adherence occur with multiple...

Purpose Given the large number of adolescents and young adults (AYAs) impacted by parental cancer and the potential for negative psychosocial outcomes in this vulnerable population, this study examined the mediating role of offspring unmet needs with regard to parental cancer and the relation between AYAs psychosocial adjustment and perceived illne...

Adolescent and young adults (AYAs) impacted by their own or familial cancer require information and peer support throughout the cancer journey to ameliorate feelings of isolation. Online Health Communities (OHC) provide social networks, support, and health-related content to people united by a shared health experience. Using a participatory design...

People with intellectual disability have unmet health needs and experience health inequalities. There is limited literature regarding cancer care for children, adolescents, and young adults (AYA) with intellectual disability despite rising cancer incidence rates in this population. This systematic review aimed to identify the psycho-social and info...

Background: Adolescent cancer patients experience considerable absence from their education, contributing to poorer academic attainment and isolation from peers, and impacting wellbeing. Telepresence robots have been used to support the educational and social needs of young people with chronic illness. This article presents the results of the devel...

We conducted a three-armed trial to assess Cascade, a four-module group videoconferencing cognitive behavior therapy (CBT) intervention for parents of childhood cancer survivors currently aged <18 years. We allocated parents to Cascade, an attention control (peer-support group), or a waitlist. The primary outcome was parents’ health-related quality...

Adolescents impacted by their own or a relative’s cancer diagnosis experience significant psychosocial needs. Residential programmes provide opportunities to address these, yet limited evaluation research and unclear reporting of therapeutic and theoretical underpinnings complicate efforts to understand programme effects. This paper reports the dev...

Objective Adolescents and young adults (AYAs) diagnosed with cancer commonly experience elevated psychological distress and need appropriate detection and management of the psychosocial impact of their illness and treatment. This paper describes the multinational validation of the Distress Thermometer (DT) for AYAs recently diagnosed with cancer an...

Adolescents and young adults (aged 15–25 years) diagnosed with cancer have unique medical and psychosocial experiences and care needs, distinct from those of paediatric and older adult patients. Since 2011, the Australian Youth Cancer Services have provided developmentally appropriate, multidisciplinary and comprehensive care to these young patient...

Telehealth interventions offer a practical platform to support adolescent and young adult (AYA) cancer survivors’ mental health needs after treatment, yet efficacy data are lacking. We evaluated an online, group-based, videoconferencing-delivered cognitive-behavioral therapy (CBT) intervention (‘Recapture Life’) in a 3-arm randomized-controlled tri...

Purpose: Adolescent and young adult (AYA) cancer survivors' families can face ongoing challenges into survivorship. Families' adjustment and functioning as a unit can subsequently impact AYAs' mental health and quality of life. This study examined AYA cancer survivors' perceived family functioning, compared with their peers, and investigated factor...

Background Adolescents and young adults (AYAs) bereaved by the death of a parent or sibling from cancer report unique psychosocial needs and can have difficulty adjusting to their loss. Unaddressed, this can result in poor long-term bereavement outcomes. This paper describes the development and evaluation of Good Grief – a 3-day camp-based program...

For individuals impacted by their own or a family member’s cancer, connecting with other people in similar situations can be an invaluable source of informational and emotional support. Online spaces provide opportunities for peer support that may be more accessible, given the medical and logistical restrictions on face-to-face socialisation associ...

Purpose: Receiving a cancer diagnosis for young people is likely to adversely impact the individual's quality of life. Mindfulness-based interventions (MBIs) are an emerging strategy used to improve psychosocial well-being. However, challenges have been reported in relation to adherence and accessibility of face-to-face mindfulness programs among y...

Background Adolescents diagnosed with cancer experience unique psychosocial concerns that persist beyond treatment completion into longer-term survivorship. Camp-based, group Acceptance and Commitment Therapy (ACT) programs are a potential model for providing evidence-informed psychological and peer support to adolescent cancer survivors.Objective...

Background Psychological suffering is ubiquitous with cancer and frequently presents as an unmet supportive care need. In clinical practice, distress-related needs are often addressed by nurses and non-psychologist allied healthcare professionals who may have limited training in psychological therapeutic frameworks, particularly more recently devel...

Objective: Serious childhood illnesses such as cancer affect all family members. Siblings experience strong emotions and disruptions to their routines as families reorganize to confront the disease and manage treatment. Addressing siblings' psychosocial needs is a standard of care in pediatric oncology, but siblings' needs are rarely met because o...

Introduction: Health literacy has been conceptualised as acquired and used via family and clinician networks that surround adolescents and young adults with cancer (AYAs). However, the role of family members and clinicians in the AYA process of becoming health literate is not well understood. We explored the distributed nature of health literacy in...

Introduction: Health literacy has been identified as an essential asset required for adolescents and young adults with cancer (AYAs) to become empowered in their healthcare. However, best-practice guidelines do not currently address clinical approaches to build health literacy in this group. As such, we investigated clinician approaches to building...

Objective The purpose of this study was to examine how cancer‐related fertility concerns impact on couple relationships from the perspectives of people with cancer (PWC) and partners of people with cancer. Methods A qualitative research design was used, drawing data from open‐ended responses to a survey and in‐depth individual interviews. Eight hu...

PurposeAdherence to oral antineoplastic drugs is a complex phenomenon, and knowledge about the reasons that people with cancer do not adhere to their prescriptions is essential to inform adherence-related support in clinical and research contexts. This study aims to provide an up-to-date summary of the key reasons for non-adherence to oral antineop...

Objective This study aimed to validate the Bereaved Cancer Needs Instrument (BCNI), an instrument designed to assess the unmet psychosocial needs of adolescents and young adults (AYAs, 12–25 years) who have experienced the death of a parent or sibling to cancer. Methods In total, 335 participants aged 12 to 25 (M = 15.80, SD = 3.32) who had experi...

Background: Mindfulness-based interventions (MBIs) have demonstrated benefits for adults with chronic illness and are becoming increasingly popular among children and young people. Mindfulness-based interventions could have benefits for young people with cancer throughout the treatment journey, through to survivorship. Objective: The aim was to...

Purpose This study uses the newly developed Bereaved Cancer Needs Inventory to identify the unmet psychosocial needs of adolescents and young adults who have experienced the death of a parent or sibling to cancer, and to explore the relationship between unmet needs and psychological distress. Methods In total, 278 bereaved offspring and 38 bereave...

Background: Adolescents and young adults (AYAs) given a diagnosis of cancer who experience infertility concerns often report having poorer quality of life (QoL). However, the role of infertility-related stressors and illness acceptance on QoL is not clear. Objective: The aim of this study was to describe the impact of psychosocial factors surrou...

Although illness perceptions have significant implications for psychological morbidity in those diagnosed with a physical illness, the strength of this relationship in their family members remains understudied. The validity of findings is dependent on the quality of the instruments used; therefore, it is essential that psychometrically robust measu...

Issue addressed: Given the increasing prevalence of cancer, there is a growing need for health interventions educating individuals about the disease and its impacts, risk reduction strategies, and how to support others who are affected. School-based programs are a promising medium addressing these issues in adolescents, yet no comprehensive cancer...

Purpose: To describe the theoretical, evidence-based and consumer-informed development of a smartphone self-management program aiming to support adherence to oral chemotherapy in adolescents and adults diagnosed with cancer. Methods: The design of the program followed two frameworks for the development and evaluation of mHealth interventions and...

Purpose: Breast cancer (BC) accounts for 24% of female cancers, with approximately one-quarter of women likely to have offspring aged <25 years. Recent publications demonstrate negative psychosocial well-being in these offspring. We prospectively assessed for psychological distress and unmet needs in offspring of BC patients. Patient and Methods E...

Objective: Parents with cancer want information about maintaining family functioning despite cancer. This scoping review assesses what online information resources are available to help parents with cancer maintain family functioning, the quality of the available information, and whether resources provide specific advice for parents of adolescent...

A growing evidence base highlights the negative impact of poor psychosocial care at end-of-life. Adolescents and young adults (AYAs) 15-39 years of age with cancer face unique medical and psychosocial challenges that make them especially vulnerable when treatment is not successful. Although the importance of age-appropriate medical and psychosocial...

Purpose: This study examined Adolescent and Young Adult (AYA) cancer patients’ experiences with friends and cancer friends (peers) throughout their cancer journey. Research approach: Qualitative, thematic analysis. Participants: Twelve AYA diagnosed with cancer, treated within the past five years. Methodological approach: Individual semi-structured...

Objectives To assess the availability and efficacy of interventions open to adolescents and young adults (AYAs; 15-25 years) bereaved by a parent’s or sibling’s cancer. Methods A systematic review of peer-reviewed literature on interventions available to AYAs bereaved by a parent’s or sibling’s cancer was conducted through searches of six online d...

Purpose: To explore and highlight the opportunities and challenges that underlie the development of survivorship care for adolescent and young adult cancer. Methods: A multimethod approach was used, with perspectives of survivors, relatives, and health care professionals elicited through an online survey, focus group, and semistructured interview...

This poster describes the evidence and theoretical-based development of a smartphone intervention to support adherence to oral chemotherapy in young and adult cancer patients

Background Individuals construct beliefs about an illness based on their own perceptions, interpretation, and understanding of the illness and its treatment. These beliefs (collectively referred to as “illness cognitions” or “representations”) can have implications for psychological outcomes in family members and carers of an individual with an ill...

Purpose: This article describes the formation and first meeting of a community adolescent and young adult oncology council (AYAOC), which was created to promote patient and stakeholder involvement in research and programmatic initiatives within community-based cancer centers. Methods: The AYAOC (comprising patients/survivors, family members, resea...

Objective Engaging in shared decision‐making may be particularly difficult for adolescents and young adults with cancer (AYAs), possibly due to lower levels of health literacy. Family members of AYAs are likely to support decision‐making about their healthcare by contributing to health literacy skills/practices, however the nature of this process i...

Objective: Parental cancer is a significant problem for adolescent and young adult offspring. To understand the extent of the problem of parental cancer for Australian offspring, data regarding those impacted are required. The aim of this study was to enumerate and describe the characteristics of Western Australian adolescent and young adult offspr...

The sibling cancer needs instrument (SCNI) is the first developed specifically for assessing psychosocial unmet needs of adolescents having a sibling with cancer. The aim of this study is to evaluate the psychometric properties of its Persian version. Methods For this methodological study, the SCNI was translated into Persian using back-translatio...

Plenary presentation

The impact of a young person's cancer diagnosis extends to siblings, yet support services to address siblings’ needs are limited. This study explores healthcare professionals’ (HCPs’) perspectives on engaging and supporting adolescent and young adult (AYA, 12–25 years) siblings of young cancer patients in hospital settings. Semi‐structured intervie...

General practitioners (GPs) are often the first point of contact adolescents and young adults (AYAs, aged 10–29) with cancer have with the health system, and they are well‐placed to coordinate their complex medical and psychosocial care. This study is the first to report characteristics of patients, GPs and cancers involved in AYA cancer management...