Protocol for a pilot randomised controlled trial of an online intervention for post-treatment cancer survivors with persistent fatigue

INTRODUCTION: Many post-treatment cancer survivors experience persistent fatigue that can disrupt attempts to resume normal everyday activities after treatment. Theoretical models that aim to explain contributory factors that initiate and sustain fatigue symptoms, or that influence the efficacy of interventions for cancer-related fatigue (CrF) require testing. Adjustment to fatigue is likely to be influenced by coping behaviours that are guided by the representations of the symptom.OBJECTIVES: This paper describes the protocol for a pilot trial of a systematically and theoretically designed online intervention to enable self-management of CrF after cancer treatment.METHODS AND ANALYSIS: This 2-armed randomised controlled pilot trial will study the feasibility and potential effectiveness of an online intervention. Participants will be allocated to either the online intervention (REFRESH (Recovery from Cancer-Related Fatigue)), or a leaflet comparator.PARTICIPANTS: 80 post-treatment cancer survivors will be recruited for the study.INTERVENTIONS: An 8-week online intervention based on cognitive-behavioural therapy.PRIMARY AND SECONDARY OUTCOME MEASURES: The primary outcome is a change in fatigue as measured by the Piper Fatigue Scale (revised). Quality of life will be measured using the Quality of Life in Adult Survivors of Cancer Scale. Outcome measures will be collected at baseline, and at completion of intervention.RESULTS: The feasibility of trial procedures will be tested, as well as the effect of the intervention on the outcomes.CONCLUSIONS: This study may lead to the development of a supportive resource to target representations and coping strategies of cancer survivors with CrF post-treatment.SETTING: Recruitment from general public in Ireland.ETHICS AND DISSEMINATION: This trial was approved by the Research Ethics Committee at National University of Ireland Galway in January 2013. Trial results will be communicated in a peer-reviewed journal.TRIAL REGISTRATION NUMBER: ISRCTN55763085; Pre-results.</p

Adolescent adjustment to maternal cancer: an interpretative phenomenological analysis (IPA)

Purpose As an Interpretative Phenomenological Analysis (IPA), the purpose of this paper is to provide an in-depth understanding of adolescent experiences of maternal cancer to identify the individual and contextual factors that shape adolescent experiences and evaluates the potential applicability of the Family Ecology Model to the illness context. Design/methodology/approach This analysis is focussed on three female adolescents who completed semi-structured interviews, which were subjected to IPA. Maternal illness is a challenge for adolescents, which can be improved or undermined by their contexts. The analysis yielded three sub-themes: family structure, social supports, experiencing maternal cancer at a time of transition and the lasting impact of cancer. Findings This study found that adolescent experiences of maternal cancer depend on their contexts from an ecological perspective the type and quality of adolescent interactions determine coping and adjustment. Maternal cancer can be difficult as adolescents are already facing specific developmental challenges. Future research can benefit from adopting an ecological perspective to further understand adolescent experiences to support adolescent that may be more vulnerable and benefit from additional supports. This is not a generalisable piece of research but it provides a very deep and detailed understanding of the impact of maternal cancer on adolescents’ developmental course and determines how the complexity of their contexts can serve as a risk or a protective factor at this challenging time. Originality/value This paper contributes to the body of research by providing a comprehensive understanding of adolescents facing maternal cancer. The Ecological Model supports the findings of this research and proves to be a good model to understand the complex interplay between adolescents and their environments when facing a difficult challenge like maternal cancer is

Survivorship care for postmenopausal breast cancer patients in Ireland: What do women want?

Purpose: The aim of this study was to identify the concerns of postmenopausal breast cancer patients in Ireland and inform the development of a survivorship care plan.Method: A qualitative participatory approach was used. Focus group interviews (n = 6) with 51 women were undertaken. Following analysis of the focus group discussions, two nominal group technique (NGT) (consensus workshops) involving representatives (n = 17) from each of the six focus groups were held.Results: Ten key issues were highlighted by women in the focus groups and these were prioritised at the consensus workshops. The most important issues in survivorship care planning prioritised by the women were as follows: meet the same healthcare professional at each review visit; contact number of a named person that you can contact if you have any concerns between review visits; at each review visit, have a physical examination and blood tests and explanation from health care professional outlining if follow up scans needed and if not, why not; information on signs and symptoms of recurrence; advice on diet, exercise, healthy lifestyle and advice on coping and pacing yourself; information and management of side effects of therapy-long and short term.Conclusion: Survivorship care planning for breast cancer is underdeveloped in Ireland. There is a lack of consensus regarding its provision and a lack of structured approach to its implementation. This study demonstrates the role of postmenopausal breast cancer patients\u27 involvement in identifying their needs and reports that continuity of care was their top priority and the need for an adoption of a survivorship care plan was emphasised by participants. (C) 2017 The Authors. Published by Elsevier Ltd

Consulting with citizens in the design of wellbeing measures and policies: lessons from a systems science application

Internationally, there is increasing interest in, and analysis of, human wellbeing and the economic, social, environmental, and psychological factors that contribute to it. Current thinking suggests that to measure social progress and national wellbeing we need more than GDP. Experts across a range of disciplines have increasingly highlighted a number of key values and domains of measurement that are influencing the way governments in different countries are thinking about wellbeing measures and policies. Most agree that it is important to involve citizen consultation in the design of wellbeing measures and policies. There is no real consensus on how to best do so. There are, however, the warnings of recent case studies that underscore the dangers of failing to consult with citizens adequately. The current paper examines the value of citizen consultations and considers how best to optimize deliberation and co-design by experts, citizens, and politicians using systems science tools that facilitate collective intelligence and collective action. The paper opens with an overview of the international wellbeing movement and highlights key issues in the design and application of wellbeing measures in policy practice. Next, an applied system science methodology, Interactive Management (IM), is described and affordances of IM considered in relation to the challenge of facilitating citizen consultations in relation to wellbeing measurement and policy design. The method can be used to provide insight into the values, goals, and preferences of citizens; engaging all stakeholders in a democratic, consensus building process that facilitates buy-in and enhances the legitimacy of decision-making groups; facilitating transparent understanding of the reasoning that informs the systems thinking of groups. A recent application of our applied system science methodology to the design of a notional national wellbeing index for Ireland is outlined. The paper closes by highlighting the importance of adopting a wider social science toolkit to the challenge of facilitating social progress

Measuring a new facet of post traumatic growth: development of a scale of physical post traumatic growth in men with prostate cancer

Purpose This study developed a measure of physical post traumatic growth (physical post traumatic growth inventory; P-PTGI) in men with prostate cancer. Methods A pool of items was created from themes identified in a qualitative study. A quantitative study was then conducted to assess the psychometric properties of the P-PTGI in a sample of 693 prostate cancer survivors. Results Tests of dimensionality revealed that the 20-item P-PTGI contained two factors: Health Autonomy and Health Awareness. Results demonstrated that scale score reliability for the P-PTGI and its subscales was excellent. In support of the scale's convergent validity, scores on the P-PTGI correlated positively with mindfulness and quality of life, and correlated negatively with depression and anxiety. A statistically significant correlation between the P-PTGI and another robust indicator of post traumatic growth attests to its concurrent validity. Conclusions While further investigation of the P-PTGI's psychometric properties is required, preliminary findings are promising

Measuring a new facet of post traumatic growth: development of a scale of physical post traumatic growth in men with prostate cancer

Purpose This study developed a measure of physical post traumatic growth (physical post traumatic growth inventory; P-PTGI) in men with prostate cancer. Methods A pool of items was created from themes identified in a qualitative study. A quantitative study was then conducted to assess the psychometric properties of the P-PTGI in a sample of 693 prostate cancer survivors. Results Tests of dimensionality revealed that the 20-item P-PTGI contained two factors: Health Autonomy and Health Awareness. Results demonstrated that scale score reliability for the P-PTGI and its subscales was excellent. In support of the scale\u27s convergent validity, scores on the P-PTGI correlated positively with mindfulness and quality of life, and correlated negatively with depression and anxiety. A statistically significant correlation between the P-PTGI and another robust indicator of post traumatic growth attests to its concurrent validity. Conclusions While further investigation of the P-PTGI\u27s psychometric properties is required, preliminary findings are promising

Measuring a new facet of post traumatic growth: Development of a scale of physical post traumatic growth in men with prostate cancer.

This study developed a measure of physical post traumatic growth (physical post traumatic growth inventory; P-PTGI) in men with prostate cancer.A pool of items was created from themes identified in a qualitative study. A quantitative study was then conducted to assess the psychometric properties of the P-PTGI in a sample of 693 prostate cancer survivors.Tests of dimensionality revealed that the 20-item P-PTGI contained two factors: Health Autonomy and Health Awareness. Results demonstrated that scale score reliability for the P-PTGI and its subscales was excellent. In support of the scale's convergent validity, scores on the P-PTGI correlated positively with mindfulness and quality of life, and correlated negatively with depression and anxiety. A statistically significant correlation between the P-PTGI and another robust indicator of post traumatic growth attests to its concurrent validity.While further investigation of the P-PTGI's psychometric properties is required, preliminary findings are promising