The experiences of cancer survivors as they transition from chemotherapy treatment to life after cancer

This study explored and described the experience of people with a diagnosis of cancer, as they transitioned from life as a chemotherapy patient to life after treatment as a cancer survivor. The purpose of this study was to ultimately improve the care of people as they transitioned into life after completion of chemotherapy treatment. There is minimal information related to this phase of the cancer trajectory, therefore this study was intentionally exploratory and descriptive. To achieve the proposed outcome a two-phased approach was undertaken. In Phase One a qualitative approach was followed using Grounded Theory to the descriptive level of data analysis. The study was undertaken in a large tertiary hospital in Western Australia. The sample comprised of 14 cancer survivors who had completed chemotherapy treatment in the previous four to twelve weeks. Data was collected via semi structured telephone interviews. Descriptors of issues and experiences that arose in the first six months following completion of chemotherapy were elicited. Data was subsequently transcribed, coded and organised into themes of congruent relevance. Cancer survivors were found to transition through two stages in the early weeks following completion of chemotherapy. When physical symptoms and emotional losses were all encompassing, the survivors displayed vulnerability due to the loss of the treatment environment and a range of challenging emotions. As the weeks passed and physical symptoms began to abate, the survivors began to display characteristics of resilience, self empowerment and information seeking strategies which both informed and protected the survivor. The domains that challenged the survivor throughout this transition period encompassed physical, social, psychological and spiritual issues. In Phase Two of the study, key findings from Phase One were utilised to inform the adaptation of an existing quality of life tool, Quality of life – Cancer Survivor, which was identified following an extensive literature review. The adapted tool, Quality of Life – Chemotherapy Cancer Survivor, was assessed for clarity, content validity and apparent internal consistency by an expert panel of six oncology nurses who were employed within the same tertiary hospital setting. Feedback from this process was used to further amend the original tool. The researcher intends to pilot test the revised tool with cancer survivors in preparation for a larger scale population based study following this Masters study. This study has provided an insight into the survivorship issues as people transition to life after chemotherapy and findings begin to fill a gap in understanding which has not previously be addressed in the available literature. Implications for future research and clinical practice including, gaps in survivor’s knowledge and transition process issues, are provided

Systematic review and meta-analysis of patient reported outcomes for nurse-led models of survivorship care for adult cancer patients

Purpose: This systematic review aimed to determine the effectiveness of nurse-led cancer survivorship care, compared with existing models of care, on patient reported outcomes for cancer survivors. Methods: Randomised and non-randomised controlled trials and controlled before-after studies published in English between 1 January 2007 and 28 July 2017 were identified in bibliographic databases including Medline, Pubmed and PsychINFO. Included studies described nurse-led cancer care after treatment to adults (age ≥18 years) \u3c2 years post treatment completion. Risk of bias was assessed using Joanna Briggs Institute’s tools and meta-analysis was undertaken. Results: Twenty one publications were included describing 15 tumour-specific trials involving 3278 survivors of breast (n = 5), gynecological (n = 3), head and neck (n = 2), colorectal (n = 2), upper gastrointestinal (n = 2) and prostate (n = 1) cancers. Seven trials reported quality of life (QoL) using the EORTC QLQ-C30; participants receiving nurse-led care (4–6 months) had better cognitive (4 trials, 463 participants; mean difference [MD] = 4.04 [95% CI, 0.59–7.50]; p = 0.02) and social functioning (4 trials, 463 participants; MD = 3.06 [0.14–5.97]; p = 0.04) but worse appetite loss (3 trials, 354 participants; MD = 4.43 [0.08–8.78]; p = 0.05). After intervention completion, intervention participants had reduced fatigue (4 trials, 647 participants; MD = −4.45 [−7.93 to −0.97]; p = 0.01). Conclusion: This systematic review synthesised outcomes of models of nurse-led survivorship care and contributes a meta-analysis of patient QoL to survivorship evidence. This review was limited by the risk of bias in many included studies for blinding of treatment personnel and outcome assessors. Nurse-led care appears beneficial for cancer survivors for some QoL domains

A qualitative study of the post-treatment experiences and support needs of survivors of lymphoma

Purpose: To explore the post-treatment experiences and preferences for follow-up support of lymphoma survivors. Methods: Two focus groups were conducted with 17 participants to explore informational, psychological, emotional, social, practical and physical needs, 6-30 months post-treatment for lymphoma. Perceptions regarding a potential model of survivorship care were also elicited. Results: Thematic content analysis revealed five key themes: Information; Loss and uncertainty; Family, support and post-treatment experience; Transition, connectivity and normalcy, and Person-centred posttreatment care. Participants described a sense of loss as they transitioned away from regular interaction with the hospital at the end of treatment, but also talked about the need to find a “new normal”. Establishing post-treatment support structures that can provide individualised information, support, reassurance and referrals to community and peer support were identified as a helpful way to navigate the transition from patient to post-treatment survivor. Conclusions: Participants in our study articulated a need for a flexible approach to survivorship care, providing opportunities for individuals to access different types of support at different times posttreatment. Specialist post-treatment nurse care coordinators working across acute and community settings may offer one effective model of post-treatment support for survivors of haematological malignancies

Click - connect - converse - collaborate: Extending the reach of education and professional development opportunities through webinar series

AIMS: There are ongoing challenges in the provision of education/networking and professional development opportunities in health care. An innovative way to address these shortfalls led to a national webinar initiative for cancer care coordinators.<br/

Spatial autocorrelation in uptake of antenatal care and relationship to individual, household and village-level factors: results from a community-based survey of pregnant women in six districts in western Kenya

Abstract Background The majority of maternal deaths, stillbirths, and neonatal deaths are concentrated in a few countries, many of which have weak health systems, poor access to health services, and low coverage of key health interventions. Early and consistent antenatal care (ANC) attendance could significantly reduce maternal and neonatal morbidity and mortality. Despite this, most Kenyan mothers initiate ANC care late in pregnancy and attend fewer than the recommended visits. Methods We used survey data from 6,200 pregnant women across six districts in western Kenya to understand demand-side factors related to use of ANC. Bayesian multi-level models were developed to explore the relative importance of individual, household and village-level factors in relation to ANC use. Results There is significant spatial autocorrelation of ANC attendance in three of the six districts and considerable heterogeneity in factors related to ANC use between districts. Working outside the home limited ANC attendance. Maternal age, the number of small children in the household, and ownership of livestock were important in some districts, but not all. Village proportions of pregnancy in women of child-bearing age was significantly correlated to ANC use in three of the six districts. Geographic distance to health facilities and the type of nearest facility was not correlated with ANC use. After incorporating individual, household and village-level covariates, no residual spatial autocorrelation remained in the outcome. Conclusions ANC attendance was consistently low across all the districts, but factors related to poor attendance varied. This heterogeneity is expected for an outcome that is highly influenced by socio-cultural values and local context. Interventions to improve use of ANC must be tailored to local context and should include explicit approaches to reach women who work outside the home

Development of the Western Australia Cancer Nurse Coordination Service

The cancer care coordinator role is a rapidly emerging one, whose mandate is to achieve some potentially far-reaching reforms to systems of care. To ensure these developments realise their potential, it is timely to consider the most effective ways to design and implement models of care coordination that achieve the improvements being sought for the Australian cancer care system. The National service improvement framework for cancer delivered 19 critical intervention points, one of which addressed coordination of care. This recommended that people with cancer have a designated coordinator of care who knows about all aspects of their disease, treatment and support. The care coordinator will help people with cancer move between treatment components, and ensure they have access to appropriate information and support and that the treatment team is fully aware of a person\u27s preferences and situation. This paper provides an insight into the development of the West Australian Cancer Nurse Coordination Service and a variety of the factors that have been considered and addressed in striving towards improving care coordination. Information about the West Australian health context and components of the role development to date will inform the reader of the complexity associated with this system reform. Copyright © 2008 Cancer Nurses Society of Australia. All rights reserve

Effects of a support group leader education program jointly developed by health professionals and patients on peer leader self-efficacy among leaders of scleroderma support groups: a two-arm parallel partially nested randomised controlled trial

Abstract Background More people with rare diseases likely receive disease education and emotional and practical support from peer-led support groups than any other way. Most rare-disease support groups are delivered outside of the health care system by untrained leaders. Potential benefits may not be achieved and harms, such as dissemination of inaccurate information, may occur. Our primary objective was to evaluate the effects of a rare-disease support group leader education program, which was developed collaboratively by researchers, peer support group leaders, and patient organization leaders, compared to waitlist control, on peer leader self-efficacy among scleroderma support group leaders. Methods The trial was a pragmatic, two-arm partially nested randomised controlled trial with 1:1 allocation into intervention or waitlist control. Eligible participants were existing or candidate peer support group leaders affiliated with a scleroderma patient organization. Leader training was delivered in groups of 5–6 participants weekly for 13 weeks in 60–90 min sessions via the GoToMeeting® videoconferencing platform. The program included 12 general leader training modules and one module specific to scleroderma. Primary outcome was leader self-efficacy, measured by the Support Group Leader Self-efficacy Scale (SGLSS) immediately post-intervention. Secondary outcomes were leader self-efficacy 3 months post-intervention; emotional distress, leader burnout, and volunteer satisfaction post-intervention and 3 months post-intervention; and program satisfaction among intervention participants post-intervention. Results One hundred forty-eight participants were randomised to intervention (N = 74) or waitlist (N = 74). Primary outcome data were provided by 146 (99%) participants. Mean number of sessions attended was 11.4 (standard deviation = 2.6). Mean program satisfaction score (CSQ-8) was 30.3 (standard deviation = 3.0; possible range 8–32). Compared to waitlist control, leader self-efficacy was higher post-intervention [SGLSS; 16.7 points, 95% CI 11.0–22.3; standardized mean difference (SMD) 0.84] and 3 months later (15.6 points, 95% CI 10.2–21.0; SMD 0.73); leader volunteer satisfaction was significantly higher at both assessments, emotional distress was lower post-intervention but not 3 months later, and leader burnout was not significantly different at either assessment. Conclusions Peer support group leader education improved leader self-efficacy substantially. The program could be easily adapted for support group leaders in other rare diseases. Trial registration: NCT03965780 ; registered on May 29, 2019

Living With Multiple Myeloma

Purpose: To describe the unmet informational, psychological, emotional, social, practical, and physical needs and preferences for posttreatment survivorship care of individuals living with multiple myeloma to inform the development of relevant, person-centered, survivorship services. Methods: An exploratory, descriptive study using 2 focus groups with 14 participants, 6 to 49 months postdiagnosis. Results: Thematic analysis revealed 7 key themes: information needs, experience with health-care professionals, coping with side effects, communicating with family and friends, dealing with emotions, support needs, and living with the chronicity of myeloma. Participants described key characteristics of survivorship care relevant to their needs and indicated they would like a more whole of person approach to follow-up when the main treatment phases had completed. Conclusion: Participants in this study described unmet needs across a breadth of domains that varied over time. The development of flexible, person-centered approaches to comprehensive survivorship care is needed to address the considerable quality-of-life issues experienced by people living with multiple myeloma. Nurse-led care may offer 1 viable model to deliver enhanced patient experience—providing the vital “link” that people described as missing from their survivorship care