Claire E. Wakefield

A systematic review of psychological interventions for adolescents and young adults living with chronic illness.

OBJECTIVE There is increasing recognition that adolescents and young adults (AYAs) with chronic illnesses experience common psychological challenges. This article reviewed published psychological interventions for AYAs with cancer, diabetes, juvenile idiopathic arthritis, sickle cell disease, and asthma. Common, efficacious intervention components were examined to generate clearer recommendations for future age-appropriate, evidence-based intervention development. METHODS Five databases including MEDLINE, MEDLINE In Process & Non-Indexed Citations, PsycINFO, EMBASE, and CINAHL, were searched for studies involving AYAs aged 10-30 years, using quantitative two-group methods, published from 1979-2010. Of 1,233 abstracts, 87 were extracted for further analysis and a final 25 studies were eligible for inclusion. Thirteen of these studies included AYAs with diabetes, 7 studies involved AYAs with cancer, and 5 included AYAs with other illnesses. RESULTS Educational interventions showed some significant positive results, particularly when targeted knowledge outcomes were measured. Several skills-based programs, some including parents, showed positive results, with moderate effect sizes. Interventions which taught communication skills, incorporated practical components (e.g., role-plays, homework), involved ≥6 sessions, and spanned at least 3 months in length, appeared more likely to achieve positive outcomes. CONCLUSIONS Skills-based interventions delivered over multiple sessions may yield the most positive results in AYAs with chronic illness. Given the few peer-support groups eligible for review, their efficacy remains unclear. This review points to the need for intervention development that teaches adaptive coping skills, is grounded in theoretical frameworks, and adheres to strict randomization and independent assessments to evaluate efficacy in assisting AYAs adjust to chronic illness.

Assessment of Psychosocial Outcomes in Genetic Counseling Research: An Overview of Available Measurement Scales

The aim of the present paper was to describe and evaluate many of the measurement scales currently used in genetic counseling outcomes research. A team of three researchers reviewed the available literature and selected a variety of validated instruments suitable for measurement of genetic counseling outcomes. There are numerous scales to assess each of the following outcomes among counselees: satisfaction with genetic counseling; knowledge; decision-making; psychological adjustment; coping; perceived personal control; perceptions of disease risk; and family communication about genetic risk. However, the strengths and limitations inherent to each instrument warrant careful consideration prior to implementation. In the genetic counseling context, scale selection should be undertaken with thought directed towards the characteristics of the research sample (e.g. levels of literacy, culture, medical condition), the practicalities of the research setting (e.g. available funding and resources, time restrictions, researcher expertise), the purpose of the research (i.e. the specific aspect of the genetic counseling experience to be studied), and the science underlying the scale (e.g. theoretical framework, psychometric properties).

Family information needs at childhood cancer treatment completion

Despite the recognized importance of information provision across the cancer trajectory, little research has investigated family information needs recently after childhood cancer. This mixed‐methods, multiperspective, study explored the information needs of families of childhood cancer survivors in the first year post‐treatment.

Randomized Trial of a Decision Aid for Individuals Considering Genetic Testing for Hereditary Nonpolyposis Colorectal Cancer Risk

Despite the potential benefits of genetic testing for hereditary nonpolyposis colorectal cancer (HNPCC) risk, individuals can find the genetic testing decision‐making process complicated and challenging. The goal of the current study was to measure the effectiveness of a tailored decision aid designed specifically to assist individuals to make informed decisions regarding genetic testing for HNPCC risk.

Dietary intake after treatment in child cancer survivors

Childhood cancer survivors (CCS) are at increased risk of complications such as obesity, diabetes, and osteoporosis which have the potential to, in part, be controlled with dietary interventions. To allow the development of appropriate dietary interventions for younger cancer survivors data on their dietary intake as well as information on parental nutrition views and practices need to be assessed.

Cognitive compensations for blindness in children: an investigation using odour naming.

Historically, blindness has been associated with compensation for the loss of vision by the other senses. However, research to date has focused on perceptual compensations, largely ignoring possible cognitive compensations. We explored the notion that cognitive skills of blind children may facilitate performance in apparently perceptual tasks, by investigating the cognitive factors related to naming a familiar odour. Eighty-three children participated in olfactory and cognitive tasks (thirty-two early-blind, five late-blind, fourteen low-vision, and thirty-two sighted). In the olfactory tasks, the early-blind children performed significantly better than the sighted children on the odour-naming task but not on the odour-sensitivity task. From the cognitive tasks, scores on a nonvisualisable word-pairs task and a sound – word-pairs task were significantly higher for early-blind children and were highly correlated with odour-naming score. The early-blind children outperformed the sighted controls on a task of directed attention. The groups did not differ on memory for a story or for visualisable word pairs. The results suggest that blind children enjoy an advantage in tasks that assess nonvisual memory for paired associates and directed attention, and that superiority on these tasks facilitates performance in the odour-naming task. Other data suggest that sighted children rely on visualisation as a strategy to aid their performance on the cognitive tasks, and are disadvantaged when these strategies cannot be utilised.

Online group-based cognitive-behavioural therapy for adolescents and young adults after cancer treatment: a multicenter randomised controlled trial of Recapture Life-AYA.

BackgroundA cancer diagnosis is 2.9 times more likely to occur during the adolescent and young adult years than in younger children. This spike in incidence coincides with a life stage characterised by psychological vulnerability as young people strive to attain numerous, critical developmental milestones. The distress young people experience after cancer treatment seriously jeopardises their ability to move into well-functioning adulthood.Methods/DesignThis article presents the protocol of the Recapture Life study, a phase II three-arm randomised controlled trial designed to evaluate the feasibility and efficacy of a new intervention in reducing distress and improving quality of life for adolescent and young adult cancer survivors. The novel intervention, “ReCaPTure LiFe” will be compared to a both a wait-list, and a peer-support group control. Ninety young people aged 15–25 years who have completed cancer treatment in the past 1–6 months will be recruited from hospitals around Australia. Those randomised to receive Recapture Life will participate in six, weekly, 90-minute online group sessions led by a psychologist, involving peer-discussion around cognitive-behavioural coping skills (including: behavioural activation, thought challenging, communication and assertiveness skills training, problem-solving and goal-setting). Participants randomised to the peer-support group control will receive non-directive peer support delivered in an identical manner. Participants will complete psychosocial measures at baseline, post-intervention, and 12-months post-intervention. The primary outcome will be quality of life. Secondary outcomes will include depression, anxiety, stress, family functioning, coping, and cancer-related identity.DiscussionThis article reviews the empirical rationale for using group-based, online cognitive-behavioural therapy in young people after cancer treatment. The potential challenges of delivering skills-based programs in an online modality are highlighted, and the role of both peer and caregiver support in enhancing the effectiveness of this skills-based intervention is also discussed. The innovative videoconferencing delivery method Recapture Life uses has the potential to address the geographic and psychological isolation of adolescents and young adults as they move toward cancer survivorship. It is expected that teaching AYAs coping skills as they resume their normal lives after cancer may have long-term implications for their quality of life.Trial RegistrationACTRN12610000717055

A randomized trial of a breast/ovarian cancer genetic testing decision aid used as a communication aid during genetic counseling

Objectives: To evaluate the impact of a decision aid for women considering genetic testing for breast/ovarian cancer risk given during genetic counseling.

It's More than Dollars and Cents: The Impact of Childhood Cancer on Parents’ Occupational and Financial Health

Few studies have evaluated the impact of childhood cancer on parents’ occupational/financial status. This study explored parents’ occupational/financial experiences posttreatment. Semistructured interviews were administered to 78 parents (44 mothers) of childhood cancer survivors diagnosed in the preceding 5 years. Transcripts were organized into themes using QSR NVivo8. Parents reported familial, psychological, and practical factors affecting their ability to return to work. Prioritizing family, reinstigating career progression, and negative workplace attitudes were particularly challenging. Parents of children with cancer experience substantial work—family conflict after their childs physical recovery from cancer. Family friendly policies and further research are recommended.

Hospital-based bereavement services following the death of a child: A mixed study review

Background: There has been a breadth of research on the grief experience of parents following the death of a child. However, the role and impact of hospital-based bereaved services remain unclear. Aim: To identify services offered to bereaved families in perinatal, neonatal, and pediatric hospital settings and summarize the psychosocial impact of these services and published recommendations for best practice hospital-based bereavement care. Design: Systematic review of qualitative, quantitative, and mixed method studies guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses checklist and methodological quality appraised in accordance with the Mixed Method Appraisal Tool. Data sources: MEDLINE, EMBASE, Cumulative Index to Nursing and Allied Health, and PsychINFO were searched to find studies describing hospital-based bereavement services/interventions for parents, siblings, and grandparents. Results: In all, 14 qualitative, 6 quantitative, and 10 mixed method studies were identified. Nine descriptive articles were also included. Qualitatively, family members described feeling cared for and supported by staff, a reduction in sense of isolation, and improved coping and personal growth. Quantitatively, bereavement services have most effect for parents experiencing more complex mourning. It is recommended that bereavement services be theoretically driven and evidence based, offer continuity of care prior to and following the death of a child, and provide a range of interventions for the “whole family” and flexibility in service delivery. Conclusions: There is a role for transitional hospital-based services/interventions for families in the lead up to and following the death of a child. Further mixed method research is required to inform best practice bereavement care guidelines in the perinatal, neonatal, and pediatric hospital settings.