How can advance care planning tools help young people's voices be heard?

The integration of the child or young person (CYP) in conversations around advance care planning (ACP) is an important area of paediatric practice. These discussions provide CYP with the opportunity to voice their values, goals and preferences, enabling health-care professionals to ensure they are aligned with their planned course of treatment. This process, often undertaken within the context of the child's family, empowers children to participate in decisions and experience the dignity of self-determination. It also facilitates an increased understanding between the CYP and those involved in their care. The objectives of this paper are to highlight the importance of these conversations for paediatricians and identify barriers, both real and perceived, that may prevent them from engaging with a CYP about their preferences for future care including focusing more on discussion with the parents, and concern about or not having the skills to engage the child in such sensitive conversations. Triggers that can prompt clinicians to undertake ACP are also discussed. A further complexity is that after seeking their perspective, it may become apparent that the CYP may hold different views and perspectives to their parents and/or clinician. This review article will especially examine elements of end-of-life conversations that are critical to support the important goal of listening to the voice of the CYP. This includes considerations around timing, legal aspects, ethical tensions that arise when amplifying a child's voice, clinician/team-member roles, clinical process considerations, and the use of specific interventions and ACP tools to facilitate these conversations with CYP.</p

The experiences of young people living with cancer in regional and remote Australia: a qualitative study

There is limited qualitative research specifically exploring the experiences of young people living with cancer in nonmetropolitan Australia. This article reports on an in-depth qualitative study exploring young people’s experiences of diagnosis, treatment, and postcancer care and support, focusing on the impact of living in regional and remote Queensland, Australia. Thematically coded data from in-depth interviews were managed using NVivo 12 qualitative software. Connections with place, knowledge, people, support, lifestyle, and peers were key themes. Travelling for treatment interrupted these connections, with participants desiring treatment closer to home. Preventive social work in metropolitan and nonmetropolitan areas that supports maintaining connections for young patients from regional and remote areas is recommended. Further research, including the impact on young Aboriginal and Torres Strait Islander people with cancer and on the role of social workers, will inform improvements in social work practice

Experiences of young people living with cancer in nonmetropolitan areas: a review of the literature

This review explores the literature on experiences of young people (15–39 years) living with cancer from nonmetropolitan areas, given most available research has focused on those living in major metropolitan areas. The purpose of the review was to inform (a) clinical practice and (b) future research on young people living with cancer in nonmetropolitan areas. An integrative review method explored peer-reviewed publications in CINAHL, Medline, PsycINFO, SSCI, PsycARTICLES, Socindex, and Google Scholar for literature published over the past 20 years. Twelve studies (reported in 17 articles) were eligible for inclusion, of which most (n = 8) had been conducted in Australia. Findings highlighted “the tyranny of distance” from metropolitan specialist cancer care centers negatively affected young people's health (e.g., delayed diagnoses), with financial distress1, psychosocial, cultural, and other challenges resulting. Negative effects were heightened during major treatment transitions at diagnosis, during, and after cancer treatment. One study found some Indigenous Australians did not report symptoms and refused referrals if it necessitated travelling long distances. Five studies did not report greater challenges experienced by nonmetropolitan compared with metropolitan respondents. Health care professionals helping young people can mitigate negative challenges through education and support at diagnosis about financial distress and psychosocial challenges. We recommend further research target ways to minimize delays in diagnosis, reporting of symptoms or accepting allied health referrals, psychosocial upheaval, financial distress, and explore issues particular to First Nations people, to inform services how to meet unique needs of young people living with cancer from nonmetropolitan areas

"This is the first time I've talked about this": considerations when conducting qualitative research interviews with adolescents and young adults with cancer

ualitative research is a useful and important way to describe and analyze the experiences of adolescents and young adults (AYAs) with cancer. However, undertaking qualitative research with AYAs living with, or beyond, a cancer diagnosis requires careful planning and a well-informed approach for participants with a high level of vulnerability and who are at a crucial stage developmentally. This article reflects on the challenges of including AYAs with cancer between the ages of 16 and 25 years in qualitative research. By drawing on each author's own experiences of engaging in qualitative research interviews with AYAs with cancer, the article provides suggestions regarding how best to manage challenges and yield valuable data describing their experiences. Insights that are shared between qualitative researchers in this field may assist in preparing for the challenges posed by conducting qualitative research with this group and may help researchers to manage this activity successfully

Psychological distress and illness perceptions in thyroid cancer survivors: Does age matter?

Purpose:  To examine the role of differentiated thyroid cancer (DTC) patients' age in illness perceptions and psychological distress, and the potential moderating role of age in the relationship between illness perceptions and psychological distress.  Methods:  We used the Netherlands Cancer Registry to select all patients diagnosed with thyroid cancer between 1990 and 2008 (n = 568). Patients filled out the Hospital Anxiety and Depression Scale (HADS) and Brief Illness Perception Questionnaire. Levels of psychological distress and illness perceptions were compared between the different DTC survivor age groups (adolescents and young adults [AYAs; 18-39 years], middle-aged adults [40-64 years], and older survivors [65-84 years]).   Results:  Among 293 respondents with DTC, AYAs (n = 84) had more faith in the fact that their treatment can help them, and reported a stronger belief in understanding their illness compared to middle-aged (n = 172) and older adults (n = 37). No differences regarding age were seen on the other six illness perception subscales. AYAs did report significantly less distress (HADS caseness = 13.8%) compared to middle-aged (28.7%) and older adults (22.2%). Most illness perception subscales were associated with distress and the associations with age were mixed. AYAs and older patients who believed that their illness would continue for a long time reported more distress, but this association was not found for the middle-aged group.  Conclusion: Illness perceptions play a key role in the experience of distress years after diagnosis and this is related to age. AYA and older cancer patients may be particularly vulnerable to distress related to maladaptive cancer-related beliefs/perceptions

Psychological Distress and Illness Perceptions in Thyroid Cancer Survivors:Does Age Matter?

Contains fulltext : 220532.pdf (Publisher’s version ) (Closed access)Purpose: To examine the role of differentiated thyroid cancer (DTC) patients' age in illness perceptions and psychological distress, and the potential moderating role of age in the relationship between illness perceptions and psychological distress. Methods: We used the Netherlands Cancer Registry to select all patients diagnosed with thyroid cancer between 1990 and 2008 (n = 568). Patients filled out the Hospital Anxiety and Depression Scale (HADS) and Brief Illness Perception Questionnaire. Levels of psychological distress and illness perceptions were compared between the different DTC survivor age groups (adolescents and young adults [AYAs; 18-39 years], middle-aged adults [40-64 years], and older survivors [65-84 years]). Results: Among 293 respondents with DTC, AYAs (n = 84) had more faith in the fact that their treatment can help them, and reported a stronger belief in understanding their illness compared to middle-aged (n = 172) and older adults (n = 37). No differences regarding age were seen on the other six illness perception subscales. AYAs did report significantly less distress (HADS caseness = 13.8%) compared to middle-aged (28.7%) and older adults (22.2%). Most illness perception subscales were associated with distress and the associations with age were mixed. AYAs and older patients who believed that their illness would continue for a long time reported more distress, but this association was not found for the middle-aged group. Conclusion: Illness perceptions play a key role in the experience of distress years after diagnosis and this is related to age. AYA and older cancer patients may be particularly vulnerable to distress related to maladaptive cancer-related beliefs/perceptions

Examining the Cultural Appropriateness of Advance Care Planning Tools for Adolescents and Young Adults With Cancer: An Example of Cross-Cultural Adaptation of the Voicing My CHOiCES Tool

Advance care planning (ACP) is crucial in supporting optimal, patient-centered care for adolescents and young adults (AYAs) with life-limiting illnesses and can reduce unwanted outcomes at end-of-life. While several ACP tools and interventions have been designed for AYAs, most of these were developed in the United States of America (USA). This paper describes a study designed to adapt the AYA ACP tool, Voicing My CHOiCES (VMC), for the Australian population. A 2-stage mixed methods approach was used. Stage 1 involved a multiperspective interview to determine changes for the new Australian VMC. Participants were AYAs between the ages of 15 to 25, healthcare professionals, and parents. For each section, participants responded to questions targeting the helpfulness and usefulness of the items as well as open-ended questions about any suggested content or formatting changes. Stage 2 used think-aloud interviews asking AYA cancer patients and survivors aged between 15 and 39 years to respond to proposed changes for the Australian VMC. Stage 1 participants suggested changes to all pages of VMC, with proposed changes being based around language, content, and format. Stage 2 participants qualitatively confirmed the acceptability of these changes. Our data suggests that even between similar Western cultures, significant adaptations can be made to make ACP tools more culturally appropriate. More research is needed to further adapt ACP tools like VMC for culturally and linguistically diverse groups and to ensure these tools can be accessed by all AYAs with life-limiting illness

Effective integration of caregivers and families as part of the care team for people with cancer

BACKGROUND: Informal caregivers (family or friends of people with cancer) are a group of highly important people who support those diagnosed with cancer to remain at home and out of hospital, but this comes at a significant personal cost. Understanding strategies to support cancer caregivers is critical. OBJECTIVE: This article will present an overview of cancer caregiving and how the caregivers involved can be assisted by general practitioners (GPs). Two key approaches to general practice teams supporting caregivers will be explored: acknowledging and integrating caregivers as part of the care team and providing referrals into services and supports. DISCUSSION: The general practice team is ideally positioned to assist in the support of cancer caregivers. GPs can assist caregivers by acknowledging them as valid and important members of the care team and referring them into existing support programs. These strategies are central to supporting this important, but often forgotten, group of people affected by cancer

Post-traumatic growth in parents of long-term childhood cancer survivors compared to the general population: A report from the Swiss childhood cancer survivor study-Parents.

OBJECTIVE Post-traumatic growth (PTG) describes perceived positive changes following a traumatic event. We describe (i) PTG in parents of long-term childhood cancer survivors (CCS-parents) compared to parents of similar-aged children of the general population (comparison-parents), (ii) normative data for the Swiss population, and (iii) psychological, socio-economic, and event-related characteristics associated with PTG. METHODS CCS-parents (aged ≤16 years at diagnosis, ≥20 years old at study, registered in the Childhood Cancer Registry Switzerland (ChCR), and the Swiss population responded to a paper-based survey, including the PTG-Inventory (total score 0-105). We carried out (i) t-tests, (ii) descriptive statistics, and (iii) multilevel regression models with survivor/household as the cluster variable. RESULTS In total, 746 CCS-parents (41.7% fathers, response-rate = 42.3%) of 494 survivors (median time since diagnosis 24 (7-40) years), 411 comparison-parents (42.8% fathers, 312 households), and 1069 individuals of the Swiss population (40.7% male, response-rate = 20.1%) participated. Mean [M] total PTG was in CCS-parents M = 52.3 versus comparison-parents M = 50.4, p = 0.078; and in the Swiss population M = 44.5). CCS-parents showed higher 'relating-to-others' (18.4 vs. 17.3, p = 0.010), 'spiritual-change' (3.3 vs. 3.0, p = 0.038) and 'appreciation-of-life' (9.3 vs. 8.4, p = 0.027) than comparison-parents, but not in 'new-possibilities' and 'personal-strength'. Female gender, older age, higher post-traumatic stress, and higher resilience were positively associated with PTG. Individuals reporting events not typically classified as traumatic also reported growth. CONCLUSIONS Our findings highlight that mothers and fathers can experience heightened growth many years after their child's illness. Being able to sensitively foreshadow the potential for new-possibilities and personal development may help support parents in developing a sense of hope