Evidence of associations between cytokine gene polymorphisms and quality of life in patients with cancer and their family caregivers

PURPOSE/OBJECTIVES: To identify latent classes of individuals with distinct quality-of-life (QOL) trajectories, to evaluate for differences in demographic characteristics between the latent classes, and to evaluate for variations in pro- and anti-inflammatory cytokine genes between the latent classes. DESIGN: Descriptive, longitudinal study. SETTING: Two radiation therapy departments located in a comprehensive cancer center and a community-based oncology program in northern California. SAMPLE: 168 outpatients with prostate, breast, brain, or lung cancer and 85 of their family caregivers (FCs). METHODS: Growth mixture modeling (GMM) was employed to identify latent classes of individuals based on QOL scores measured prior to, during, and for four months following completion of radiation therapy. Single nucleotide polymorphisms (SNPs) and haplotypes in 16 candidate cytokine genes were tested between the latent classes. Logistic regression was used to evaluate the relationships among genotypic and phenotypic characteristics and QOL GMM group membership. MAIN RESEARCH VARIABLES: QOL latent class membership and variations in cytokine genes. FINDINGS: Two latent QOL classes were found: higher and lower. Patients and FCs who were younger, identified with an ethnic minority group, had poorer functional status, or had children living at home were more likely to belong to the lower QOL class. After controlling for significant covariates, between-group differences were found in SNPs in interleukin 1 receptor 2 (IL1R2) and nuclear factor kappa beta 2 (NFKB2). For IL1R2, carrying one or two doses of the rare C allele was associated with decreased odds of belonging to the lower QOL class. For NFKB2, carriers with two doses of the rare G allele were more likely to belong to the lower QOL class. CONCLUSIONS: Unique genetic markers in cytokine genes may partially explain interindividual variability in QOL. IMPLICATIONS FOR NURSING: Determination of high-risk characteristics and unique genetic markers would allow for earlier identification of patients with cancer and FCs at higher risk for poorer QOL. Knowledge of these risk factors could assist in the development of more targeted clinical or supportive care interventions for those identified.

The psychology of containment : mis/representing emotional and behavioural difficulties in Australian schools

The number of students in special schools has increased at a rapid rate in some Australian states, due in part to increased enrolment under the categories of emotional disturbance (ED) and behaviour disorder (BD). Nonetheless, diagnostic distinctions between ED and BD are unclear. Moreover, despite international findings that students with particular backgrounds are over-represented in special schools, little is known about the backgrounds of students entering such settings in Australia. This study examined the government school enrolment data from New South Wales, the most populous of the Australian states. Linear and quadratic trends were used to describe the numbers and ages of students enrolled in special schools in the ED and BD categories. Changes between 1997 and 2007 were observed. Results showed an over-representation of boys that increased across the decade and a different pattern across age for boys and girls. Consistent with international findings, these results indicate that trends in special school placements are unrelated to disability prevalence in the population. Rather, it is suggested that schools act to preserve time and resources for others by removing their more challenging students: most typically, boys.

Supporting family caregivers with palliative symptom management: A qualitative analysis of the provision of an emergency medication kit in the home setting

Purpose The purpose of this qualitative analysis was to examine the experiences of family caregivers supporting a dying person in the home setting. In particular, it explores caregivers’ perceptions of receiving palliative care at home when supplied with an emergency medication kit (EMK). Results Most family caregivers described preexisting medication management strategies that were unable to provide timely intervention in symptoms. The EMK was largely viewed as an effective strategy in providing timely symptom control and preventing readmission to inpatient care. Caregivers reported varying levels of confidence in the administration of medication. Conclusion The provision of an EMK is an effective strategy for improving symptom control and preventing inpatient admissions of home-dwelling palliative care patients.

Systematic review of interventions to improve the provision of information for adults with primary brain tumors and their caregivers

Background: Adults with primary brain tumors and their caregivers have significant information needs. This review assessed the effect of interventions to improve information provision for adult primary brain tumor patients and/or their caregivers. Methods: We included randomized or nonrandomized trials testing educational interventions that had outcomes of information provision, knowledge, understanding, recall, or satisfaction with the intervention, for adults diagnosed with primary brain tumors and/or their family or caregivers. PubMed, MEDLINE, EMBASE and Cochrane Reviews databases were searched for studies published between 1980 and June 2014. Results: Two randomized controlled, one non-randomized controlled, and 10 single group pre-post trials enrolled more than 411 participants. Five group, four practice/process change and four individual interventions assessed satisfaction (12 studies), knowledge (four studies) or information provision (2 studies). Nine studies reported high rates of satisfaction. Three studies showed statistically significant improvements over time in knowledge and two showed greater information was provided to intervention than control group participants, although statistical testing was not performed. Discussion: The trials assessed intermediate outcomes such as satisfaction, and only 4/13 reported on knowledge improvements. Few trials had a randomized controlled design and risk of bias was either evident or could not be assessed in most domains.

Confirmatory factor analysis and invariance testing of the Young Carer of Parents Inventory (YCOPI)

Objective Research into youth caregiving in families where a parent experiences a significant medical condition has been hampered by a lack of contextually sensitive measures of the nature and breadth of young caregiving experiences. This study examined the factor structure and measurement invariance of such a measure called the Young Carer of Parents Inventory (YCOPI; Pakenham et al., 2006) using confirmatory factor analysis across 3 groups of youth. The YCOPI has 2 parts: YCOPI-A with 5 factors assessing caregiving experiences that are applicable to all caregiving contexts; YCOPI-B with 4 factors that tap dimensions related to youth caregiving in the context of parent illness. Design Two samples (ages 9–20 years) were recruited: a community sample of 2,429 youth from which 2 groups were derived (“healthy” family [HF], n = 1760; parental illness [PI], n = 446), and a sample of 130 youth of a parent with multiple sclerosis). Results With some modification, the YCOPI-A demonstrated a replicable factor structure across 3 groups, and exhibited only partial measurement invariance across the HF and PI groups. The impact of assuming full measurement invariance on latent mean differences appeared small, supporting use of the measure in research and applied settings when estimated using latent factors and controlling for measurement invariance. PI youth reported significantly higher scores than did HF youth on all YCOPI-A subscales. The YCOPI-B requires some modifications, and further development work is recommended. Conclusion The factor structure that emerged and the addition of new items constitutes the YCOPI-Revised. Findings support the use of the YCOPI-Revised in research and applied settings.

Navigating emotion research during a paradigm shift in psychology

Human emotional responses are highly individual. A comprehensive analysis of emotion research in cognitive psychology and physiology, including laboratory-based experiments, showed that understanding human emotions requires a dynamic systems approach incorporating insights from scientific disciplines beyond psychology. Importantly, subjective and automatic evaluations of emotive information are context-sensitive and changeable, confirming the dynamic nature of emotion and role of individual differences. Furthermore, a comparison of different statistical approaches established that statistical estimation, rather than averages, best captures our highly individual emotional responses. Emotion research needs a cross-disciplinary approach.

Understanding caregivers’ intentions for their child to walk to school : further application of the theory of planned behaviour

Increases in childhood obesity have coincided with declines in active transportation to school. This research builds on largely atheoretical extant literature examining factors that influence walk to school behavior through application of the Theory of Planned Behavior (TPB). Understanding caregivers’ decision for their child to walk to/from school is key to developing interventions to promote this cost-effective and accessible health behavior. The results from an online survey of 512 caregivers provide support for the TPB, highlighting the important role of subjective norms. This suggests marketers should nurture caregivers’ perception that important others approve of walking to school.

The quality of life and caregiving burden among caregivers of people with dementia in Hanoi, Bac Ninh and Hai Phong, Vietnam

This three phase study aimed to describe dementia carer's quality of life (QoL) and perceived burden, and explore the associations between family carer characteristics, burden and perceived QoL in Vietnam. Dementia carers in the capital, Hanoi, in Phase 1 (N= 153) and from Hanoi, Hai Phong and Bac Ninh in Phase 2 (N=347) completed questionnaires. Survey results showed dementia carers reported low QoL, predicted by high perceived burden. Other carer characteristics including age, gender, family income and perceived experience were significantly associated with QoL. Filial piety contributed to only a single domain of QoL. Phase 3 employed qualitative methods to explore the specific issues faced by daughter carers. Findings suggested that filial gratitude and positive aspects of the role may influence the caring experience of daughter carers. Further investigation of the specific support needs of general dementia carers, and daughter carers in particular, in Vietnam is warranted.

The development of an instrument for assessing cognitive ability and screening for the cognitive decline associated with dementia in people with moderate to profound intellectual disability

Individuals with intellectual disability have a greater risk of developing dementia.The diagnosis of dementia relies on accurate testing of cognitive function however existing tests have limited utility in people whose intellectual disability is moderate or greater. A new test was developed and underwent preliminary testing to determine use across a wider ability spectrum. The Cognitive Baseline & Screener for People with Intellectual Disability (CBS-ID) was administered to a sample of 17 dyads (n=34) (people with intellectual disability (who completed CBS-ID) and caregivers (who provided an independent rating of function)).The CBS-ID performed well on several usability metrics across all intellectual disability level and was highly correlated with existing measures of cognitive function to which it was compared.Further research with a larger sample is needed to assess the test's ability to detect change in cognition over time & determine if it aids the process of diagnosing dementia.

Using the TARL Model in Psychology: Supporting First and Final Year Students to Compose Reflections

Reflective thinking is an important skill in psychology, both as a tool in the therapeutic process and in professional development. The adapted 4Rs Model provides reflective writing structure and highlights the importance of Reporting & Responding, Relating, Reasoning and Reconstructing to students who are new to writing reflections. This chapter presents a case in which the 4Rs model (modified from the 5Rs model in Chap. 2 of this edition) was adopted to support reflective writing skills of undergraduate psychology students in a first year unit and in a final year unit. Although all students reflected on their learning within the units, the support activities leading up to the reflective tasks were adjusted to account for differences in the abilities of the cohorts and the focus of the units. In an evaluation survey, both groups of students endorsed statements about the importance of reflections and the utility of using the model. First year students also reported some difficulties understanding the 4Rs. This chapter will explore how first and final year students can be supported to develop reflection skills through scaffolding and modification of the same approaches and model.

Extending the validity of the Feeding Practices and Structure Questionnaire

Background Feeding practices are commonly examined as potentially modifiable determinants of children’s eating behaviours and weight status. Although a variety of questionnaires exist to assess different feeding aspects, many lack thorough reliability and validity testing. The Feeding Practices and Structure Questionnaire (FPSQ) is a tool designed to measure early feeding practices related to non-responsive feeding and structure of the meal environment. Face validity, factorial validity, internal reliability and cross-sectional correlations with children’s eating behaviours have been established in mothers with 2-year-old children. The aim of the present study was to further extend the validity of the FPSQ by examining factorial, construct and predictive validity, and stability. Methods Participants were from the NOURISH randomised controlled trial which evaluated an intervention with first-time mothers designed to promote protective feeding practices. Maternal feeding practices (FP) and child eating behaviours were assessed when children were aged 2 years and 3.7 years (n=388). Confirmatory Factor analysis, group differences, predictive relationships, and stability were tested. Results The original 9-factor structure was confirmed when children were aged 3.7±0.3 years. Cronbach’s alpha was above the recommended 0.70 cut-off for all factors except Structured Meal Timing, Over Restriction and Distrust in Appetite which were 0.58, 0.67 and 0.66 respectively. Allocated group differences reflected behaviour consistent with intervention content and all feeding practices were stable across both time points (range of r= 0.45-0.70). There was some evidence for the predictive validity of factors with 2 FP showing expected relationships, 2 FP showing expected and unexpected relationships and 5 FP showing no relationship. Conclusions Reliability and validity was demonstrated for most subscales of the FPSQ. Future validation is warranted with culturally diverse samples and with fathers and other caregivers. The use of additional outcomes to further explore predictive validity is recommended as well as testing construct validity and test-retest reliability of the questionnaire.

Experiences of male patients and wife-caregivers in the first year post-discharge following minor stroke: A descriptive qualitative study

Background Most patients with minor stroke are discharged directly home from acute care, under the assumption that little will be required in the way of adaptation and adjustment because informal caregivers will manage the stroke recovery process. We explored male patients with minor stroke and their wife-caregivers' perceptions of factors affecting quality of life and caregiver strain encountered during the first year post-discharge. Methods Data were obtained from responses to two open-ended questions, part of quality of life and caregiver strain scales administered to participants in a larger descriptive study. Conventional content analysis was used to assess narrative accounts of living with minor stroke provided by 26 male patients and their wife-caregivers over a period of 1-year post-discharge. Results Two major themes that emerged from these data were 'being vulnerable' and 'realization'. Subthemes that arose within the vulnerability theme included changes to patients' masculine image and wife-caregivers' assumption of a hyper-vigilance role. In terms of 'realization' patients and their wife-caregivers shared 'loss' as well as 'changing self and relationships'. Patients in this study focused primarily on their physical recovery and their perceptions of necessary changes. Wife-caregivers were actively involved in managing the day-to-day demands that stroke placed on individual, family and social roles. Conclusions We conclude that patients and wife-caregivers expend considerable time and energy reestablishing control of their lives following minor stroke in an attempt to incorporate changes to self and their relationship into the fabric of their lives.

Quantum cognition: A new theoretical approach to psychology

What type of probability theory best describes the way humans make judgments under uncertainty and decisions under conflict? Although rational models of cognition have become prominent and have achieved much success, they adhere to the laws of classical probability theory despite the fact that human reasoning does not always conform to these laws. For this reason we have seen the recent emergence of models based on an alternative probabilistic framework drawn from quantum theory. These quantum models show promise in addressing cognitive phenomena that have proven recalcitrant to modeling by means of classical probability theory. This review compares and contrasts probabilistic models based on Bayesian or classical versus quantum principles, and highlights the advantages and disadvantages of each approach.

The trajectory of minor stroke recovery for men and their female spousal caregivers: Literature review

Title The trajectory of minor stroke recovery for men and their female spousal caregivers: literature review Aim This paper is a report of a narrative review to examine the current state of knowledge regarding the impact of minor stroke on male patients and their female spousal caregivers’ recovery trajectory and quality of life. Background Minor stroke survivors are often discharged early in the recovery process. The perception of the healthcare community that these patients and their female spousal caregivers will experience an uneventful recovery may lead to inadequate preparation for the postdischarge period. Methods A range of databases was searched to identify papers addressing ‘minor stroke’, ‘transitions’, ‘quality of life’, ‘chronic disease’, ‘caregivers’ and ‘spouse caregivers’, including AARP Ageline, AMED, CINAHL, Evidence Based Medicine Reviews, MEDLINE and PsychInfo. Papers published in English from 1990 to December 2006 were included. Thirty-four papers were in the final data set. Results Minor stroke survivors and their female spousal caregivers may experience major challenges in adaptations postdischarge. The trajectory of minor stroke recovery may necessitate a re-evaluation of life plans, rethinking of priorities and integration of resulting disabilities into current and emerging life situations for both stroke survivors and their female spousal caregivers. In many cases these adaptations are compounded by transitions associated with the normal ageing process. Conclusion While there is extensive literature on stroke recovery and the role of caregivers in general, there is little available describing the recovery of minor stroke survivors in relation to the normal ageing process. Further research is needed examining recovery from a transitional perspective, to support nurses and other health professionals discharge planning.

Post traumatic success: Positive psychology and solution-focused strategies to help clients survive and thrive

I am an academic who has spent a career using a strengths-based approach in researching ways to promote and maintain mental health in people who have experienced trauma. When I read the title of the book, the notion of “post traumatic success” immediately brought many questions to my mind. What is success anyway? How do we measure success following trauma? Who decides if a person has been successful? However, as I started to read, the intention of the book became clear and my bias regarding the title lessened...