Anna Boltong

Journal of Medical Internet Research - International Scientific Journal for Medical Research, Information and Communication on the Internet

Introduction Cancer is often considered a chronic disease, and most people with cancer have a caregiver, often a family member or friend who provides a significant amount of care during the illness trajectory. Caregivers are frequently in need of support, and a range of interventions have been trialled to improve outcomes. Consensus for optimal ways to support caregivers is not known. The aim of this protocol paper is to describe procedures for a modified Delphi study to explore expert consensus about important factors when developing caregiver interventions. Methods and analysis Online modified Delphi methodology will be used to establish consensus for important caregiver intervention factors incorporating the Patient problem, Intervention, Comparison and Outcome framework. Round 1 will comprise a free-text questionnaire and invite the panel to contribute factors they deem important in the development and evaluation of caregiver interventions. Round 2 is designed to determine preliminary consensus of the importance of factors generated in round 1. The panel will be asked to rate each factor using a 4-point Likert-type scale. The option for panellists to state reasoning for their rating will be provided. Descriptive statistics (median scores and IQR) will be calculated to determine each item’s relative importance. Levels of consensus will be assessed based on a predefined consensus rating matrix. In round 3, factors will be recirculated including aggregate group responses (statistics and comment summaries) and panellists’ own round 2 scores. Panellists will be invited to reconsider their judgements and resubmit ratings using the same rating system as in round 2. This will result in priority lists based on the panel’s total rating scores. Ethics and dissemination Ethics for this study has been gained from the Deakin University Human Ethics Advisory Group. It is anticipated that the results will be published in peer-reviewed journals and presented in a variety of forums.

Objective: nformal caregivers provide substantial support for people living with cancer. Previous systematic reviews report on the efficacy of cancer caregiver interventions but not their potential to be implemented. The aim of this systematic review was to explore the potential for cancer caregiver interventions to be implemented into practice.Methods: We searched three electronic databases to identify cancer caregiver interventions on 5 January 2018. We operationalised six implementation outcomes (acceptability, adoption, appropriateness, feasibility, fidelity, and costs) into a tool to guide data extraction.Results: The search yielded 33 papers (27 papers from electronic databases and six papers from other sources) reporting on 26 studies that met review criteria. Fewer than half the studies (46%) contained evidence about the acceptability of interventions from caregivers' perspectives; only two studies (8%) included interventions developed with input from caregivers. Two studies (8%) addressed potential adoption of interventions, and no studies discussed intentions, agreement, or action to implement interventions into practice. All studies reported on intervention appropriateness by providing a rationale for the interventions. For feasibility, on average less than one‐third of caregivers who were eligible to be involved consented to participate. On fidelity, whether interventions were conducted as intended was reported in 62% of studies. Cost data were reported in terms of intervention delivery, requiring a median time commitment of staff of 180 minutes to be delivered.Conclusions: Caregiver intervention studies lack components of study design and reporting that could bridge the gap between research and practice. There is enormous potential for improvements in cancer caregiver intervention study design to plan for future implementation.

Informal caregivers provide extended support to people with cancer but they receive little support from the health care system to assist them in their caring role. The aim of this single-blind, multi-centre, randomised controlled trial was to test the efficacy of a telephone outcall program to reduce caregiver burden and unmet needs, and improve psychological well-being among cancer caregivers, as well as evaluating the potential impact on patient outcomes. Cancer patient/caregiver dyads (N = 216) were randomised to a telephone outcall program (n = 108) or attention control group (n = 108). The primary outcome was self-reported caregiver burden. Secondary endpoints included depressive symptoms, unmet needs, self-esteem, self-empowerment, and health literacy. Data were collected at baseline and at both 1 and 6 months post-intervention. An intention to treat analysis was performed. The intervention had no effect on the primary outcome (caregiver burden), but reduced the number of caregiver unmet needs (intervention group baseline, mean = 2.66, 95% confidence interval (CI) [1.91–3.54]; intervention group 1 month post intervention, mean = 0.85, 95%CI [0.42–1.44]; control group baseline, mean = 1.30 95%CI [0.80–1.94], control group 1 month post intervention, mean = 1.02 95%CI [0.52–1.69]; p = 0.023). For caregivers at risk for depression, the intervention had a significant effect on caregivers’ confidence in having sufficient information to manage their health (p = 0.040). No effects were found for patients’ depressive symptoms, unmet needs, self-empowerment, and other health literacy domains. While caregiver burden was not reduced, the outcall program was effective in reducing unmet needs in caregivers. Provision of cancer information and support via a telephone service may represent a feasible approach to reducing unmet needs among cancer caregiver populations. ACTRN12613000731796 ; prospectively registered on 02/07/2013.

Purpose The aim of this study was to develop an in-depth understanding of the rationale, experiences, evaluation and outcomes of using Cancer Information and Support (CIS) services in Australia, the UK and USA. Methods Semi-structured interviews were used to gather data between November 2015 and January 2016. Telephone interviews were recorded, de-identified, transcribed and thematically analysed. Ten users from each of three international CIS services (n = 30 in total) were recruited. Participants were eligible for inclusion if they had utilised the CIS in 2015 via telephone contact with a cancer nurse and identified as a patient or cancer survivor, or friend or family member of such a person. Results Four major themes were derived and included a total of 25 sub-themes. Key themes included (i) drivers for access, (ii) experience of the service, (iii) impact and (iv) an adjunct to cancer treatment services. Conclusions Cancer Information and Support nurses internationally act as expert navigators, educators and compassionate communicators who ‘listen between the lines’ to enable callers to better understand and contextualise their situation and discuss it with their healthcare team and family and friends. Use of the service can result in reduced worry, extend support repertoires and enable use of new knowledge and language as a tool to getting the most from the healthcare team. The positioning of CIS alongside cancer treatment services aids fuller integration of supportive care, benefiting both patients and clinicians.