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Author: Claire Wakefield (100)


Apr
2018

Many childhood cancer survivors are disengaged from cancer-related follow-up care despite being at high risk of treatment-related late effects. Innovative models of long-term follow-up (LTFU) care to manage ongoing treatment-related complications are needed. 'Re-engage' is a nurse-led eHealth intervention designed to improve survivors' health-related self-efficacy, targeted at survivors disengaged from follow-up.

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Mar
2018

Survivors of pediatric cancer are prone to late effects which require ongoing medical care. Young adult survivors often transition from specialist pediatric care to adult-oriented or community-based healthcare. This study aims to describe the attitudes and experiences of survivors and their parents towards transition barriers and enablers.

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Feb
2018

We conducted a systematic review to identify the strategies that have been recommended in the literature to facilitate shared decision-making regarding enrolment in pediatric oncology clinical trials.
We searched seven databases for peer-reviewed literature, published 1990-2017. Of 924 articles identified, 17 studies were eligible for the review.

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Jan
2018

Genetic testing is becoming increasingly available for adolescents who are undergoing cancer treatment or at risk of cancer predisposition syndromes. With this narrative review, we aimed to synthesize the evidence on psychosocial outcomes and adolescents' understanding of genetic testing-thus far, an underresearched topic. Both psychological benefits and harms of predictive testing were reported in adolescents from high-risk families.

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Mar
2018

Parent interventions delivered in the home represent a valuable approach to improving children's diets.
This review aims to examine the effectiveness of parent-targeted in-home interventions in increasing fruit and vegetable intake in children.
Five electronic databases were searched: MEDLINE, Embase, PubMed, CINAHL, and PsycINFO.

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Apr
2018

Adolescents and young adults (AYAs) with cancer have unique cancer care needs that differ significantly from younger and older cancer patients. There has been an increasing appreciation for this unique group of patients internationally, with a rise in research and establishment of innovative models of care dedicated to addressing their needs. This narrative review identifies common elements and barriers to care for AYA cancer patients and survivors, and offers recommendations for developing clinical care models for this age-defined population.

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Apr
2018

There is growing impetus for increased genetic screening in childhood cancer survivors. Family history-taking is a critical first step in determining survivors' suitability. However, the family history-taking practices of providers of pediatric oncology survivorship care and the confidence of these providers to discuss cancer risks to relatives are unknown.

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Dec
1969

Parents with cancer have high rates of psychological morbidity, and their children are at risk of poor psychosocial outcomes, particularly in the context of parental distress and poor family communication. Parents express concerns about the impact of cancer on their children and report a lack of professional guidance in meeting their children's needs. Few parenting interventions exist and current interventions have extensive infrastructure demands making them unsuitable for routine use in most health settings.

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Mar
2018

Exercise has been shown to improve the health and well-being of people who have survived cancer. Yet, less than 40% of cancer survivors in Australia meet the recommended 150 min of moderate-intensity physical activity per week. Our objective was to systematically review the literature regarding barriers, facilitators and preferences for exercise for survivors of cancer.

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Nov
2017

Enteral tube feeding (ETF) is an important part of treatment for paediatric cancer patients. Without nutritional therapy, the prevalence of under-nutrition during treatment for childhood cancer may be as high as 50%. To ensure that the appropriate initiation of ETF is optimised, information on the views of key stakeholders regarding ETF is needed.

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Apr
2018

Adolescents and young adults (AYAs) with cancer have unique needs around education and vocation during and after treatment. This narrative review series aims at documenting the unique needs of AYAs from the current literature and at providing recommendations to inform an update of the Australian National Service Delivery Framework for AYAs with Cancer. AYAs with cancer may experience impairments to cognitive, physical, and psychological functioning and health, which can adversely affect their academic grades, peer relationships, and likelihood of entering the workforce.

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Apr
2018

Surgery in children can be difficult for patients and parents. We aimed to summarize pediatric patients' and parents' psychosocial experiences and needs in surgery.
We used the Ovid search engine and screened 877 abstracts across three databases to extract data on pediatric patients' and parents' surgical experiences.

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Jan
2018

Primary care physicians (PCPs) are essential for healthcare delivery but can be difficult to recruit to health research. Low response rates may impact the quality and value of data collected. This paper outlines participant and study design factors associated with increased response rates among PCPs invited to participate in a qualitative study at Sydney Children's Hospital, Australia.

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Oct
2017

This review aimed to determine the feasibility of distance-delivered physical activity (PA) interventions in childhood cancer survivors (CCS), and assess the effect on PA levels, and physical, physiological and psychological outcomes. We searched electronic databases until May 2016, including studies following intensive treatment. Meta-analyses were conducted on randomized controlled trials.

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Feb
2018

Cancer in adolescents and young adults (AYAs) can interrupt important developmental milestones. Absence from school and time lost from work, together with the physical impacts of treatment on energy and cognition, can disrupt educational and vocational goals. The purpose of this paper is to report on AYA cancer survivors' experiences of reintegration into school and/or work and to describe perceived changes in their educational and vocational goals.

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Feb
2018

To qualitatively examine the experiences of diagnosis and treatment, and attitudes toward ongoing healthcare of adolescent and young adult (AYA) survivors of AYA cancer, to determine barriers to healthcare engagement in the early survivorship period.
Forty-two participants aged between 15 and 25 years were recruited between February 2013 and October 2015 as part of a larger Australia-wide study. This study analyzed data collected through a semistructured telephone interview.

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Dec
2017

Childhood cancer survivors remain at risk of developing life-altering and/or life-threatening health conditions following the completion of curative treatment. However, no uniform model of care for childhood cancer survivors exists in Australia and New Zealand (ANZ). This study reports on current childhood cancer survivorship care in ANZ, highlighting the challenges childhood cancer survivor long-term follow-up (LTFU) clinics face.

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Dec
2017

Understanding challenges in familial communication of cancer risk has informed genetic service delivery. Parent-child interactions have received considerable attention, but few studies focus on young adulthood experiences within BRCA1/2 families. Young adults are approaching, or at a life stage where awareness of hereditary cancer risk is vital for informed choice of risk management options.

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Dec
2017

Psychological support services for adolescent and young adults (AYAs) with cancer are moving online and are increasingly peer based. It is unclear whether online service delivery impacts critical therapeutic elements such as collaborative patient-therapist rapport and group cohesion. AYA cancer survivors (N = 39) participating in a six-week online cognitive-behavioral therapy group program-"Recapture Life"-rated their perception of therapeutic alliance and group cohesion.

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Dec
2017

PurposeRecommendations for BRCA1 and BRCA2 mutation carriers to disseminate information to at-risk relatives pose significant challenges. This study aimed to quantify family dissemination, to explain the differences between fully informed families (all relatives informed verbally or in writing) and partially informed families (at least one relative uninformed), and to identify dissemination barriers.MethodsBRCA1 and BRCA2 mutation carriers identified from four Australian hospitals (n=671) were invited to participate in the study.

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Jun
2017

Childhood cancer survivors are at risk of developing late treatment-related complications. In response, many hospitals worldwide have established follow-up clinics to monitor survivors as they age. However, there is limited evidence of the efficacy of these clinics in meeting the lifelong healthcare needs of survivors.

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Oct
2017

Estimates of the number of childhood cancers with a genetic basis range from 5-8.5% found in germline samples to 29% based on clinical criteria. Family history-taking practice is a fundamental first step in detecting at risk individuals and families.

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Mar
2017

Quality-of-life and psychosocial oncology studies that have low participation might have less precision, less statistical power, and can have non-response bias. In this systematic Review, we searched MEDLINE, Embase, and PsycInfo, for paediatric studies published in 2010-15 and adults studies published 2014-15. Studies were eligible if they were original studies published in a peer-reviewed journal; recruited children (aged 0-18 years at diagnosis) with cancer or their parents, or adult patients with cancer; and assessed psychosocial outcomes, including quality of life, depression, anxiety, wellbeing, distress, coping, or adjustment as a primary or secondary outcome.

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Mar
2017

Siblings of children with chronic illness have unique experiences that can affect their school functioning, such that they may miss ongoing periods of school, experience difficulties with schoolwork or experience changes in their peer and teacher interactions. This review provides an overview of these siblings' school experiences.
Six databases (Medline, PsychINFO, CINAHL, ERIC, Embase and The Cochrane Library) were systematically searched for studies examining the school experiences and peer relationships of siblings of children with chronic illness, as well as school-based interventions for these siblings.

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Apr
2017

Cranial radiation and glucocorticoids are associated with an increase in body mass index (BMI) z-score in survivors of childhood acute lymphoblastic leukemia (ALL). We aimed to investigate the impact of a contemporary treatment protocol that omitted prophylactic cranial radiation and glucocorticoids from the maintenance phase on longitudinal BMI, height, and weight z-scores in children with ALL.
We retrospectively studied 184 children with standard- and medium-risk ALL treated without cranial radiation or glucocorticoids.

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Mar
2017

Health literacy is a critical determinant of health and an emerging public health concern. Little is known about the health literacy of adolescents and young adults (AYAs) or about the ability of young patients to communicate health needs and critically evaluate information. We used qualitative methods to investigate the three aspects of health literacy (functional, communicative, and critical) in Australian AYA cancer survivors.

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Feb
2017

This mixed-method study assessed 1) survivors' and parents' information needs; and 2) associations between unmet information needs and clinical and socio-demographic characteristics.
Stage 1: CCS and parents of CCS, >5years post-diagnosis completed a questionnaire on information needs, overall health and perceived risk. Predictors for unmet information needs were assessed by multivariable regression.

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Aug
2016

Nutritional interventions for survivors of childhood cancer.

Cochrane Database Syst Rev 2016 Aug 22(8):CD009678. Epub 2016 Aug 22.
Jennifer E Cohen, Claire E Wakefield, Richard J Cohn
Childhood cancer survivors are at a higher risk of developing health conditions such as osteoporosis, and cardiovascular disease than their peers. Health-promoting behaviour, such as consuming a healthy diet, could lessen the impact of these chronic issues, yet the prevalence rate of health-protecting behaviour amongst survivors of childhood cancer is similar to that of the general population. Targeted nutritional interventions may prevent or reduce the incidence of these chronic diseases.

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Nov
2017

Despite the importance of nutrition support in preventing malnutrition in pediatric oncology, the decision to initiate and choose which nutrition support method is most appropriate can be difficult for parents and healthcare professionals. Decision aids are decision-focused patient information materials. They can improve knowledge, reduce decisional conflict, improve patients' risk perception, and increase patient participation in the decision-making process.

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Nov
2017

This study examined the feasibility of implementing the Psychosocial Assessment Tool (PAT2.0) from the perspectives of families and health-care providers (HCPs). PAT2.

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Nov
2017

Cancer diagnoses and treatment may have long-term effects on fertility. Semistructured interviews were administered to young cancer survivors (<20 years) and their parents (n = 97). Fertility related concerns were reported by 45 participants (46.

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Dec
1969

Genetic testing to determine cancer survivors' risk of developing late effects from their cancer treatment will be increasingly used in survivorship care. This 2-stage study with 64 survivors of childhood cancer and their parents investigated the preferences and acceptability of testing among those who may be at risk of developing late effects.
The first stage (Stage 1) identified the most commonly perceived benefits and concerns regarding genetic testing for the risk of late effects among 24 participants.

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Oct
2016

As survival rates improve, cancer is increasingly considered a chronic illness associated with significant long-term burden and sequelae, both physical and psychological. Various models of cancer care, including primary care physician (PCP)-led and shared-care, have been proposed, though a systematic review of PCPs' perspectives of their role and challenges in providing cancer care remains lacking. This systematic review summarises available literature on PCPs' perspectives of their role in cancer care.

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May
2016

Online technologies may reduce barriers to evidence-based mental health care, yet they also create numerous ethical challenges. Recently, numerous professional organizations and expert groups have produced best-practice guidelines to assist mental health professionals in delivering online interventions in an ethically and clinically sound manner. However, there has been little critical examination of these international best-practice guidelines regarding appropriate electronic mental health (e-mental health) service delivery via technologies such as videoconferencing (including Skype), particularly for specific, vulnerable populations.

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Sep
2016

Improvements in cancer diagnosis and treatment in patients of a reproductive age have led to significant improvements in survival rates; however, a patient's fertility can be affected by both cancer and its treatment. As survival rates improve, there is an expectation by clinicians and patients that patient's reproductive potential should be considered and protected as much as possible. However, there is a lack of data about current fertility preservation (FP) uptake as well as accurate data on the acute or permanent reproductive risks of cancer treatment, complications of FP in cancer patients, and the use and success of assisted reproductive technology by cancer survivors.

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Sep
2016

In Australia and New Zealand, there has not been a national systematic development of oncofertility services for cancer patients of reproductive age although many cancer and fertility centers have independently developed services. A number of barriers exist to the development of these services, including a lack of clear referral pathways, a lack of communication between clinicians and patients about fertility preservation, differences in the knowledge base of clinicians about the risk of cancer treatment causing infertility and fertility preservation options, a lack of national health insurance funding covering all aspects of fertility preservation, and storage costs and cultural, religious, and ethical barriers. The development of strategies to overcome these barriers is a high priority for oncofertility care to ensure that equitable access to the best standard of care is available for all patients.

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Sep
2016

This study examined the quality and satisfaction of sexual/romantic relationships of adolescents/young adults (AYAs) who recently completed cancer treatment. AYAs between 16 and 26 years old (62.5% female) and less than 24 months post-treatment were interviewed using the Psychosocial Adjustment to Illness Scale (PAIS) interview.

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Dec
1969

Malnutrition is common in both adult and pediatric patients undergoing treatment for cancer. Patients commonly attribute difficulties maintaining food intake to an altered taste developed during treatment. This review summarizes what is known about taste and smell dysfunction in patients with undergoing chemotherapy as their main treatment modality.

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Jun
2016

Health literacy is important for health outcomes in adults. However, little is known about the health literacy of adolescents and young adults (AYAs). The purpose of this study was to provide an updated systematic review examining health literacy among AYAs with and without chronic illness.

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Dec
1969

The aim of this study was to evaluate the feasibility and acceptability of "Cascade": an online, group-based, cognitive behavioral therapy intervention, delivered "live" by a psychologist, to assist parents of children who have completed cancer treatment.
Forty-seven parents were randomized to Cascade (n = 25) or a 6-month waitlist (n = 22). Parents completed questionnaires at baseline, 1-2 weeks and 6 months post-intervention.

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Dec
1969

This review assessed the psychological impact that acquiring personal and familial genetic information has on children. We also examined the concordance between the available empirical data and clinical guidance/perspectives articles.
We screened 591 abstracts and identified 13 studies, representing 966 children.

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Dec
1969

The needs of grandparents of children with cancer are often overlooked. This study evaluated a new educational resource (booklet) targeted toward grandparents of children with cancer. A multidisciplinary committee developed a printed booklet targeting grandparents' information needs identified in a previous study.

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Sep
2015

This paper presents the rationale and study protocol for a pragmatic controlled effectiveness trial of Truce, a prevention-based selective intervention targeting the significant mental health needs of young people who have a parent with cancer.
Truce is a seven week, facilitated, face-to-face group program. The design is a 2 groups (intervention vs control) x 3 (pre-treatment vs post-treatment vs 2 month follow-up) repeated measures.

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Apr
2016

There are few support programs with evidence-based practices which address the needs of cancer survivors from indigenous populations. This systematic review analysed the experiences and current support services for cancer survivors from indigenous populations following the cessation of cancer treatment.
The data sourced for this article was identified from a systematic search of five databases (MEDLINE, MEDLINE In-Process, PyscINFO, CINAHL, and EMBASE).

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Jul
2015

The patient-reported depression measures that perform best in oncology settings have not yet been identified. We did a meta-review to integrate the findings of reviews of more than 50 depression measures used in adults with, or recovering from, any type of cancer. We searched Medline, PsycINFO, Embase, and grey literature from 1999 to 2014 to identify 19 reviews representing 372 primary studies.

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Dec
1969

Individuals with health anxiety report experiencing a strong sense of vulnerability to illness. Such beliefs may be driven by the biased recollection of past illness-related events. However, little research has explored the role of memory in health anxiety.

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