Goals of workThe diagnosis and treatment of a brain tumour may result in long-term changes in a patient’s functional and social abilities and/or in a greatly reduced life span. A qualitative investigation was conducted to examine the supportive care needs of patients with brain tumour and their carers.Materials and methodsOverall, 18 patients and 18 carers participated in focus groups or telephone interviews, following a structured interview guide to elicit supportive care services of importance to these patients and carers.Main resultsSix major themes were identified using the framework analysis method, including needs for information and coping with uncertainty, practical support, support to return to pretreatment responsibilities or prepare for long-term care, support to deal with social isolation and organize respite care, support to overcome stigma/discrimination and support to discuss potentially reduced life expectancy.ConclusionsFive recommendations to improve service delivery include: assignment of a dedicated member of the care team or case manager; proactive dissemination of information, education and psychosocial support; access to objective assessment of neuropsychological functioning; facilitating easier access to welfare payments; and services facilitating communication about difficult illness-related topics. Provision of services along these recommendations could improve supportive care of brain tumour patients and their carers.

Supportive Care Needs of People with Brain Tumours and Their Carers

Forty years ago, three quarters of adults and children diagnosed with cancer died. Today, almost half of adults and three quarters of children survive. Survival, however, is rarely psychologically simple. Life after cancer can be characterised by an altered relationship with bodily perception: in particular an anxious uncertainty about the meaning of new or recurrent sensations such as pain. Cancer survival is an altered context in which pain can make one fear the worst. To date, research on the experience of pain in cancer survival has existed largely within a biological frame. That is, pain is studied as the result of tissue damage from the cancer itself or from surgery, chemotherapy, or radiotherapy. Yet, if there is one inescapable fact of pain science it is that tissue damagecannot alone explain pain andpainrelated behaviour. In this review, we discuss the threat associated with pain in cancer survival specifically how one manages the inherent uncertainty of pain as a potential symptom of cancer recurrence.We recognise that theword “survivor” is contentious; and here,we principally use “survival” to identify the post-treatment disease-free stage that individuals experience. We introduce a cognitive-affective model of pain appraisal and experience applied to a survival context, stressing both the clinical and research opportunities it provides.

https://biblio.ugent.be/publication/8554177/file/8554178.pdf

Pain and cancer survival: a cognitive-affective model of symptom appraisal and the uncertain threat of disease recurrence.

Background Mindfulness-based interventions (MBIs) can alleviate psychological distress in patients with cancer. However, face-to-face MBIs may be inconvenient for patients. Therefore, guided self-help interventions may be more accessible. The authors investigated the effects of a guided self-help MBI for depression, anxiety, and sleep disorder symptoms in patients with breast cancer and explored the potential underlying mechanisms. Methods One hundred forty-four postoperative patients with breast cancer were randomly assigned to an intervention group (6-week guided self-help MBI; n = 72) or a wait-list control group (routine treatment; n = 72). Self-reported depression, anxiety, sleep disorder symptoms, and rumination and worry as potential mediators were assessed at baseline and postintervention. Outcomes were then assessed at 1-month and 3-month follow-up. The intervention's effects over time and the potential mediating effect were analyzed using generalized estimating equations. The trial was registered at the Chinese Clinical Registry (ChiCTR-IOR-16008073). Results Significant improvements in depression and sleep disorder symptoms occurred in the intervention group compared with wait-list controls, and the improvements were maintained at 1-month and 3-month follow-up. Changes in rumination and worry mediated the intervention's effects on changes in depression and sleep disorder symptoms. Conclusions A guided self-help MBI reduced depressive and sleep disorder symptoms by mitigating rumination and worry in patients with breast cancer. These findings support benefits of this accessible psychological intervention in oncology and provide insight into possible mechanisms of action. The current research contributes to discovering effective and widely accessible means for people with physical health conditions and may remove barriers that otherwise would have precluded participation in face-to-face psychological interventions.

The efficacy and mechanisms of a guided self-help intervention based on mindfulness in patients with breast cancer: A randomized controlled trial.

Background

Cancer and its treatments produce lingering side-effects that undermine the quality of life (QOL) of survivors. Exercise and psycho-therapies increase QOL among survivors, however, research is needed to identify intervention characteristics most associated with such improvements.

Objective

This research aimed to assess the feasibility of a 9 week individual or group based exercise and counselling program, and to examine if a group based intervention is as effective at improving the QOL of breast cancer survivors as an individual-based intervention.

Methods

A three group design was implemented to compare the efficacy of a 9 week individual (IEC n = 12) and group based exercise and counselling (GEC n = 14) intervention to a usual care (UsC n = 10) group on QOL of thirty-six breast cancer survivors.

Results

Across all groups, 90% of participants completed the interventions, with no adverse effects documented. At the completion of the intervention, there was a significant difference between groups for change in global QOL across time (p < 0.023), with IEC improving significantly more (15.0 points) than the UsC group (1.8 points). The effect size was moderate (0.70). Although the GEC improved QOL by almost 10.0 points, this increase did not reach significance. Both increases were above the minimally important difference of 7–8 points.

Conclusion

These preliminary results suggest a combined exercise and psychological counseling program is both a feasible and acceptable intervention for breast cancer survivors. Whilst both the individual and group interventions improved QOL above the clinically important difference, only the individual based intervention was significant when compared to UsC.

An individual-based versus group-based exercise and counselling intervention for improving quality of life in breast cancer survivors. A feasibility and efficacy study

Introduction Cancer patients and caregivers have myriad unmet needs which can have detrimental consequences on their psychosocial wellbeing. This systematic review aims to identify the unmet supportive care needs of immigrant and native Chinese cancer patients and caregivers. Methods We systematically searched various electronic databases (e.g. Scopus, CINAHL, PsycInfo, etc.) from the earliest date available until January 2018. Additional studies were identified through reference lists and citation tracking. Eligibility criteria included: (a) qualitative, quantitative and/or mixed methods studies published in English; (b) immigrant and native Chinese cancer patients and/or caregivers (age ≥18 years); (c) unmet needs and/or their correlates. Studies were assessed for their risk of bias, and a narrative synthesis of findings was performed. Results Forty-seven papers from 45 studies met eligibility criteria. The most prevalent area of unmet needs was health system and information. Patients most commonly desired one member of the hospital to talk to about all aspects of their care. Caregivers preferred information about the patient's prognosis and likely outcome. Anxiety was most commonly associated with higher levels of health system and information needs. Conclusion Chinese patients and caregivers experience a range of unmet health system and information needs, which differ depending on their stage along the cancer trajectory.

The unmet supportive care needs of Chinese patients and caregivers affected by cancer: A systematic review.

Objective

This study explores the unmet psychosocial rehabilitation needs of cancer survivors.



Methods

Sixty-eight cancer survivors from the Shanghai Cancer Rehabilitation Club in China participated in one of the eight focus groups. These were transcribed verbatim, coded using thematic analysis and analysed using NVivo 10.



Results

Five main themes were identified: the need for (1) better information: Chinese cancer survivors find it difficult to sort and evaluate the overwhelming mass of information with which they are confronted; (2) psychological support: survivors fear cancer relapse and neighbours' discrimination against them; support from other cancer survivors can relieve the stress; (3) support for survivors' families: like the survivors, family members are under great but usually unacknowledged pressure; (4) improved health and medical services: community health service centres provide little medical, informational or psychological support for cancer survivors, who seek and expect more communication with doctors; and (5) assistance with the financial burden: costs of treatment and lack of adequate medical insurance cause substantial financial pressure for survivors.



Conclusions

This study shows that, in addition to their illness, Chinese cancer survivors experience a range of stresses related to their financial circumstances, lack of reliable and summarised information, poor access to support and services (including for their families) and discrimination. Support from families seems to improve survivors' ability to cope. Cancer survivors (and their families) need an integrated package of support from their families, doctors and other service providers, hospitals and communities. These findings can inform approaches to continuing care for cancer survivors. Copyright © 2015 John Wiley & Sons, Ltd.

https://www.onlinelibrary.wiley.com/doi/pdf/10.1002/pon.4023

A qualitative exploration of the unmet psychosocial rehabilitation needs of cancer survivors in China

Cancer survivors are often embroiled in various physical and psycho-social issues as a consequence of cancer diagnosis and treatment. Psycho-social support activities in the phase of rehabilitation were provided to enhance their quality of life. This study seeks to explore and understand their experience of engagement in Shanghai Cancer Rehabilitation Club (SCRC).
 Sixty-eight participants attended eight semi-structured focus group interviews. Data were transcribed verbatim, and thematic analysis framework was adopted for data analysis. The participants reported benefits such as psychological support, informational provision and tangible support in the activities. Public services were reported to have restored their dignity and enabled them to rediscover their own meaning of life. Participants also pointed out challenges on functioning and opportunity for development of SCRC.
 The psycho-social support activities of SCRC had influenced cancer survivor’s life. Public health resources and supportive policies should be in place to support local self-help cancer rehabilitation groups.

The experience of cancer survivors in community-based psycho-social support activities in Shanghai, China: a qualitative study

Background In the People's Republic of China, both western medicine (WM) and traditional Chinese medicine (TCM) are the main treatment and rehabilitation options for cancer patients. This study aimed to explore cancer survivors' perspectives and experience of treatment and rehabilitation, in order to promote patient-centered activities of treatment and rehabilitation. Methods Using a qualitative research approach, 68 cancer survivors were recruited from eight community cancer rehabilitation organizations in Shanghai, People's Republic of China. Eight focus group interviews were conducted. All these interviews were transcribed verbatim, and the data were analyzed by theme analysis. Results WM was the main choice in treatment phase though study participants noted more side effects. TCM was primarily used in the recovery phase. The lack of communication between doctors and cancer patients appears to affect treatment adherence and impair the doctor-patient relationship. WM was expensive for diagnostic procedures and treatment, while the cumulative costs of frequent use of TCM in the long rehabilitation period were also high. Both treatment options created significant perceived economic burden on patients. Conflicting information about dietary supplements tended to make cancer survivors confused. Conclusion Improving the communication between doctors and cancer patients helps to ameliorate cancer patient adherence and the effect of treatments. It is essential to educate cancer patients about the effect and cost of both WM and traditional TCM. Meanwhile, marketing management and guidance to consumers regarding use of dietary supplements in the cancer rehabilitation field are also necessary.

/pdf/cancer-survivors-perspectives-and-experience-on-western-rkvna1l6c3.pdf

Cancer survivors' perspectives and experience on western medicine and traditional Chinese medicine treatment and rehabilitation: a qualitative study.

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A qualitative exploration of the unmet psychosocial rehabilitation needs of cancer survivors in China

The experience of cancer survivors in community-based psycho-social support activities in Shanghai, China: a qualitative study

Cancer survivors' perspectives and experience on western medicine and traditional Chinese medicine treatment and rehabilitation: a qualitative study.