Support after brain tumor means different things: Family caregivers\u27 experiences of support and relationship changes

Shorter hospital stays and greater emphasis on outpatient care means that family members have the primary responsibility for supporting a person with brain tumor to manage the physical, cognitive, behavioral, and emotional effects of the illness and its treatment. Given the integral role of family caregivers, it is essential to understand their experience of the impact of brain tumor and their own support needs. Accordingly, this qualitative study aimed to investigate family caregivers\u27 experiences of support and relationship changes in the context of brain tumor. In-depth interviews were conducted with 11 family caregivers (8 spouse/partner, 3 parents) of people with malignant or benign tumor. A thematic analysis of interview transcripts identified two major themes, namely, Meanings of Support and Relationship Impacts. The Meanings of Support theme was characterized by intertwined and distinct support needs, varied expectations of support and factors influencing support expectations. The Relationship Impacts theme depicted mixed experiences of strengthened, maintained, and strained relations with the person with brain tumor. Overall, the findings highlight that there is considerable variability in caregivers\u27 experiences and expectations of support and the impact of brain tumor on relationships. The implications of these findings for the provision of caregiver support are discussed

Prostate cancer survivorship care: If not now, when?

Prostate cancer is the most common cancer diagnosed in Australian men, excluding non-melanoma skin cancer, and it is estimated that there are over 220 000 Australian men living with a diagnosis of prostate cancer [1]. Survival for men with prostate cancer is excellent in countries that have accessible screening and treatment services, and in Australia 5-year relative survival is over 95% [1]. High incidence, coupled with improving long-term survival, leads to a correspondingly high prevalence rate and high community disease burden. Many men with prostate cancer experience long-term decrements in their mental and physical quality of life, overall they have a greater suicide risk than their non-cancer peers, and unmet supportive care needs are pervasive [2]. In this context, survivorship care for men with prostate cancer is crucial in both the short and long term. The recent development of a Prostate Cancer Survivorship Essentials Framework in the Australian and New Zealand setting provides an example of a regional response to this issue that delivers guidance for policy makers, clinicians, community and consumers on what is essential for step change in prostate cancer survivorship outcomes [3]

Episodic volunteering and retention: An integrated theoretical approach

Episodic volunteers (EVs) are vital for non-profit organization activities. However, theory-based research on episodic volunteering is scant and the determinants of episodic volunteering are not well understood. This study integrates the volunteer process model and three-stage model of volunteers’ duration of service to explore determinants of EV retention. A cross-sectional survey of 340 EVs assessed volunteering antecedents, experiences, and retention. Social/enjoyment (β =.17) and benefit (β = −.15) motives, social norm (β =.20), and satisfaction (β =.56) predicted Novice EV (first experience) retention, satisfaction (β =.47) and commitment (β =.38) predicted Transition EV (2-4 years intermittently) retention, and supporting the organization financially (β =.31), social norm (β =.18), satisfaction (β =.41), and commitment (β =.19) predicted Sustained EV (5-6 years consecutively) retention. Integrated theoretical approaches appear efficacious for understanding EV retention. An Episodic Volunteer Engagement and Retention model is proposed for further testing in prospective work. © 2015, © The Author(s) 2015

A systematic review of episodic volunteering in public health and other contexts

Background: Episodic volunteers are a critical resource for public health non-profit activities but are poorly understood. A systematic review was conducted to describe the empirical evidence about episodic volunteering (EV) in the public health sector and more broadly. Study location, focus and temporal trends of EV research were also examined. Methods. Twelve key bibliographic databases (1990-April week 2, 2014) were searched, including Google Scholar. Empirical studies published in English in peer-reviewed journals that identified participants as EVs who volunteered to support Not-for-Profit organisations in the health and social welfare sectors were included. EV definitions, characteristics, economic costs, antecedents and outcomes and theoretical approaches were examined. Results: 41 articles met initial review criteria and 20 were specific to the health or social welfare sectors. EV definitions were based on one or more of three dimensions of duration, frequency, and task. EVs were predominantly female, middle aged, Caucasian (North American) and college/university educated. Fundraising was the most common EV activity and 72% had volunteered at least once. No studies examined the economic costs of EV. There was little consistency in EV antecedents and outcomes, except motives which primarily related to helping others, forming social connections, and self-psychological or physical enhancement. Most studies were atheoretical. Three authors proposed new theoretical frameworks. Conclusions: Research is required to underpin the development of an agreed consensus definition of EV. Moreover, an EV evidence-base including salient theories and measures is needed to develop EV engagement and retention strategies for the health and social welfare sectors

The partnering with patients model of nursing interventions : A first step to a practice theory

The development of a body of knowledge, gained through research and theory building, is one hallmark of a profession. This paper presents the “Partnering with Patients Model of Nursing Interventions”, providing direction towards how complex nursing interventions can be developed, tested and subsequently adopted into practice. Coalescence of understanding of patient-centred care, the capabilities approach and the concept of complex healthcare interventions led to the development of the model assumptions and concepts. Application of the model to clinical practice is described, including presentation of a case study, and areas for future research including understanding both patients’ and nurses’ perceptions and experiences when the model is in use, and testing the effect of nursing interventions based on the model are recommende

Deciding to enrol in a cancer trial: A systematic review of qualitative studies

© 2020 Viljoen et al. Background: Clinical trials are essential for the advancement of cancer treatments; how-ever, participation by patients is suboptimal. Currently, there is a lack of synthesized qualitative review evidence on the patient experience of trial entry from which to further develop decision support. The aim of this review is to synthesise literature reporting experiences of participants when deciding to enrol in a cancer clinical trial in order to inform practice. Methods: A systematic review and meta-synthesis of qualitative studies were conducted to describe the experiences of adult cancer patients who decided to enrol in a clinical trial of an anti-cancer treatment. Results: Forty studies met eligibility criteria for inclusion. Three themes were identified representing the overarching domains of experience when deciding to enrol in a cancer trial: 1) need for trial information; (2) trepidation towards participation; and (3) justifying the decision. The process of deciding to enrol in a clinical trial is one marked by uncertainty, emotional distress and driven by the search for a cure. Conclusion: Findings from this review show that decision support modelled by shared decision-making and the quality of a shared decision needs to be accompanied by tailored or personalised psychosocial and supportive care. Although the decision process bears simila-rities to theoretical processes outlined in decision-making frameworks, there are a lack of supportive interventions for cancer patients that are adapted to the clinical trial context. Theory-based interventions are urgently required to support the specific needs of patients deciding whether to participate in cancer trials

Trajectories of quality of life, life satisfaction, and psychological adjustment after prostate cancer

Background: To describe trajectories of health-related quality of life (QoL), life satisfaction, and psychological adjustment for men with prostate cancer over the medium to long term and identify predictors of poorer outcomes using growth mixture models. Methods: One-thousand sixty-four (82.4% response) men diagnosed with prostate cancer were recruited close to diagnosis and assessed over a 72-month (6-year) period with self-report assessment of health-related QoL, life satisfaction, cancer-related distress, and prostate specific antigen anxiety. Urinary, bowel, and sexual function were also assessed using validated questionnaires. Results: Poorer physical QOL was predicted by older age, lower education, lower income, comorbidities, and receiving hormone therapy. Lower life satisfaction was related to younger age, lower income, not being partnered, and comorbidities. Poorer psychological trajectories were predicted by younger age, lower income, comorbidities, and receiving radical prostatectomy or brachytherapy. Better urinary, bowel, and sexual function were related to better global outcomes over time. Anxiety about prostate specific antigen testing was rare. Conclusions: Distinct trajectories exist for medium- to long-term QoL, life satisfaction, and psychological adjustment after prostate cancer; with age and socioeconomic deprivation playing a differential role in men\u27s survivorship profile and the impact of functional status on outcomes increasing over time. These results reinforce the need for an appraisal of men\u27s life course in addition to treatment side effects when planning survivorship care after cancer

The potential role of exercise in neuro-oncology

Patients with brain and other central nervous system cancers experience debilitating physical, cognitive, and emotional effects, which significantly compromise quality of life. Few efficacious pharmacological strategies or supportive care interventions exist to ameliorate these sequelae and patients report high levels of unmet needs in these areas. There is strong theoretical rationale to suggest exercise may be an effective intervention to aid in the management of neuro-oncological disorders. Clinical research has established the efficacy of appropriate exercise in counteracting physical impairments such as fatigue and functional decline, cognitive impairment, as well as psychological effects including depression and anxiety. While there is promise for exercise to enhance physical and psychosocial wellbeing of patients diagnosed with neurologic malignancies, these patients have unique needs and research is urgently required to explore optimal exercise prescription specific to these patients to maximize safety and efficacy. This perspective article is a discussion of potential rehabilitative effects of targeted exercise programs for patients with brain and other central nervous system cancers and highlights future research directions

A Longitudinal Study Of Post-traumatic Growth And Psychological Distress In Colorectal Cancer Survivors

The stability of post-traumatic growth overtime and the relationship between post-traumatic growth and traditional distress outcomes remains unclear. We tracked post-traumatic growth in a population-based sample of colorectal cancer patients from soon after diagnosis to five years subsequently to assess the heterogeneity of a post-traumatic growth response to cancer over time and describe the simultaneous and longitudinal relationships between post-traumatic growth and psychological distress. 1966 colorectal patients who were five months post diagnosis were assessed six times over a five year period. There was considerable heterogeneity associated with both psychological distress and benefit finding scores over time. However, both for benefit finding and psychological distress, the variation in individual scores suggested an underlying positive linear trend and both lagged and lagged change components. Specifically, benefit finding and psychological distress are mutual leading indicators of each other. First, benefit finding served as a leading indicator of distress, in that increases in reported benefit finding from year to year predicted higher future increases in psychological distress. As well, in an inverse relationship, psychological distress served as a leading indicator of benefit finding, such that increases in reported distress from year to year predicted lower future increases in benefit finding. Post-traumatic growth may reflect patients coping efforts to enhance perceptions of wellbeing in response to escalating cancer-related threats, acting as harbinger of increasing trajectories of psychological distress. This explanation is consistent with a cognitive dissonance response in which threats to the integrity of the self then lead to a tendency to accentuate positive aspects of the self

Episodic volunteering and retention: an integrated theoretical approach

Episodic volunteers (EVs) are vital for non-profit organization activities. However, theory-based research on episodic volunteering is scant and the determinants of episodic volunteering are not well understood. This study integrates the volunteer process model and three-stage model of volunteers’ duration of service to explore determinants of EV retention. A cross-sectional survey of 340 EVs assessed volunteering antecedents, experiences, and retention. Social/enjoyment (β = .17) and benefit (β = −.15) motives, social norm (β = .20), and satisfaction (β = .56) predicted Novice EV (first experience) retention; satisfaction (β = .47) and commitment (β =.38) predicted Transition EV (2-4 years intermittently) retention; and supporting the organization financially (β = .31), social norm (β = .18), satisfaction (β = .41), and commitment (β = .19) predicted Sustained EV (5-6 years consecutively) retention. Integrated theoretical approaches appear efficacious for understanding EV retention. An Episodic Volunteer Engagement and Retention model is proposed for further testing in prospective work