Life experiences of caregivers of women with gynaecological cancer: a mixed‐methods systematic review

Family caregivers play a key role in meeting care needs of cancer patients. The aim of this review was to systematically examine life experiences of family caregivers of women with gynaecological cancer. A mixed‐methods systematic review based on a retrospective review of the research on the topic was conducted. The review was limited to articles in English published between 1985 and 2014. The literature search was performed in CINAHL, Scopus, PubMed and ScienceDirect. A total of 16 full‐text articles published in national and international journals were reviewed: 10 quantitative studies, 5 qualitative studies and 1 both qualitative and quantitative study. Of all caregivers with gynaecological cancer, 59% were partners, 27% were sons or daughters and 14% were brothers or sisters, mothers and friends. The qualitative research on caregivers’ experiences revealed three themes: ‘emotional devastation’, ‘change’ and ‘coping’. The family caregivers of women with gynaecological cancer had difficulty in areas examined, but the studies investigating caregivers’ needs were limited to certain subjects and they were not solution‐oriented. It is recommended that qualitative and quantitative studies including the solutions regarding family caregivers of women with gynaecological cancer should be integrated.     

A framework for rehabilitation for cancer survivors

This paper introduces a theoretical framework that recognises the rehabilitation needs of people who have cancer and offers a multi‐tiered model to meet these needs. Various models for providing survivorship care have been previously proposed, giving rise to multiple possible delivery systems. Existing cancer rehabilitation frameworks recognise different phases of illness, goals of care and the need for services at all stages of illness. The ‘Stained Glass Cancer Rehabilitation Framework’ incorporates survivor needs and rehabilitation modalities, arranged in a practical hierarchy and builds on earlier models. A broad view of rehabilitation services considers complexity, temporal and geographic factors. Recognition that needs emerge over time demands a routine long‐term approach to screening for physical, functional and psychosocial rehabilitation needs by medical and other health professionals. New methods of care delivery and coordination from specialist to primary care settings are needed, long after treatment is completed. Service delivery infrastructure supported by funding reform and training of rehabilitation professionals in delivering appropriate interventions for cancer survivors is essential, together with more research into cancer rehabilitation interventions, functional outcomes and their delivery.     

Psychosocial interventions for adolescent cancer patients: a systematic review of the literature

Objective: Both cancer diagnosis and the consequent treatment are particularly challenging for adolescent patients. Adjuvant psychological interventions to reduce cancer‐related distress are therefore a fundamental part of a multidisciplinary treatment. Assuming that psycho‐oncology has to consider developmentally specific aspects, this review summarizes empirical studies of the efficacy and effectiveness of psychosocial interventions for adolescent cancer patients. Methods: Electronic searches were conducted in four databases. Studies were included only if they were exclusively designed for adolescent cancer patients and incorporated a defined outcome measure to evaluate the effects of the implemented intervention. Results: Only four studies fulfilled the inclusion criteria. One of those studies reported a significant improvement compared with a waitlist control group. The relevant gains were found in the overall level of distress, as well as in additional outcome variables such as knowledge of sexual issues, body image and anxiety about psychosexual issues. The remaining studies revealed no significant changes related to psychological distress and psychosocial functioning. Conclusion: Taken together, the findings point out that there is a lack of intervention research in psycho‐oncology with adolescents. So far, there is only limited evidence for the effectiveness of psychosocial interventions to improve coping with cancer‐associated problems in adolescent patients. Future research needs to be done in this population. In order to establish more conclusive results, larger samples and interventions particularly designed for adolescent patients ought to be studied. Copyright © 2008 John Wiley & Sons, Ltd.     

Identifying and Addressing the Needs of Adolescents and Young Adults With Cancer: Summary of an Institute of Medicine Workshop

Cancer is the leading disease‐related cause of death in adolescents and young adults (AYAs). This population faces many short‐ and long‐term health and psychosocial consequences of cancer diagnosis and treatment, but many programs for cancer treatment, survivorship care, and psychosocial support do not focus on the specific needs of AYA cancer patients. Recognizing this health care disparity, the National Cancer Policy Forum of the Institute of Medicine convened a public workshop to examine the needs of AYA patients with cancer. Workshop participants identified many gaps and challenges in the care of AYA cancer patients and discussed potential strategies to address these needs. Suggestions included ways to improve access to care for AYAs, to deliver cancer care that better meets the medical and psychosocial needs of AYAs, to develop educational programs for providers who care for AYA cancer survivors, and to enhance the evidence base for AYAs with cancer by facilitating participation in research.     

Conversations for providers caring for patients with rectal cancer: Comparison of long‐term patient‐centered outcomes for patients with low rectal cancer facing ostomy or sphincter‐sparing surgery

For some patients with low rectal cancer, ostomy (with elimination into a pouch) may be the only realistic surgical option. However, some patients have a choice between ostomy and sphincter‐sparing surgery. Sphincter‐sparing surgery has been preferred over ostomy because it offers preservation of normal bowel function. However, this surgery can cause incontinence and bowel dysfunction. Increasingly, it has become evident that certain patients who are eligible for sphincter‐sparing surgery may not be well served by the surgery, and construction of an ostomy may be better. No validated assessment tool or decision aid has been published to help newly diagnosed patients decide between the two surgeries or to help physicians elicit long‐term surgical outcomes. Furthermore, comparison of long‐term outcomes and late effects after the two surgeries has not been synthesized. Therefore, this systematic review summarizes controlled studies that compared long‐term survivorship outcomes between these two surgical groups. The goals are: 1) to improve understanding and shared decision‐making among surgeons, oncologists, primary care providers, patients, and caregivers; 2) to increase the patient's participation in the decision; 3) to alert the primary care provider to patient challenges that could be addressed by provider attention and intervention; and 4) ultimately, to improve patients' long‐term quality of life. This report includes discussion points for health care providers to use with their patients during initial discussions of ostomy and sphincter‐sparing surgery as well as questions to ask during follow‐up examinations to ascertain any long‐term challenges facing the patient. CA Cancer J Clin 2016;66:387–397. © 2016 American Cancer Society.     

Self‐management for men surviving prostate cancer: a review of behavioural and psychosocial interventions to understand what strategies can work,for whom and in what circumstances

Objective: In the context of increasing prostate cancer survivorship, evidence of unmet supportive care needs and growing economic health‐care restraints, this review examined and evaluated best approaches for developing self‐management programmes to meet men's survivorship needs. Methods: A search of international literature published in the last 12 years was conducted. Only randomised controlled trials were included in the analysis. Key components of the interventions were evaluated to determine what has been offered, and which elements are most beneficial in improving health outcomes. Methodological issues were also considered. Results: Targeting participant need and promoting motivation to participate and maintain programme adherence were the most important factors to emerge in ensuring positive health outcomes. Both need and motivation are multi‐faceted, the components of which are identified and evaluated. Guidance was also identified in relation to delivery design, theoretical mechanisms for change, modes of delivery and facilitator issues. Conclusion: Self‐management is a viable and appropriate way of providing health‐care solutions to ameliorate men's functional and emotional problems associated with increased prostate cancer survivorship. Integration into clinical practice will require training, resources and commitment and, in addition, economic viability will be difficult to assess since cost comparison with current provision is not straightforward. Nevertheless, from the psychosocial and behavioural studies reviewed there is convincing evidence that can be used to design, implement and evaluate future self‐management programmes for men surviving prostate cancer. Copyright © 2010 John Wiley & Sons, Ltd.     

The health status and health service needs of primary caregivers of cancer survivors: a mixed methods approach

This study aimed to measure the health status and care needs of people who provide informal care to cancer survivors in the UK. Semi‐structured interviews were conducted with a purposive sample of 24 cancer professionals to identify the care needs of caregivers. In addition, we conducted a postal survey measuring the health and well‐being [36‐item short‐form health survey (SF‐36)] and health service utilisation of 98 primary caregivers of a random sample of cancer survivors, 2–20 years post‐treatment. Interviews indicated that caregivers' needs were largely unmet. In particular, there appeared to be a need in relation to statutory healthcare provision, information, psychological support and involvement in decision‐making. There were no significant differences between survivors and caregivers in terms of mental health scores; and caregivers performed better on physical health domains compared with cancer survivors. Compared with UK norms and norms for caregivers of other chronic conditions, cancer caregivers had substantially lower scores on each SF‐36 health domain. Cancer may impact negatively on an informal caregiver's health long after treatment has ended. Providing appropriate and cancer‐specific information may alleviate difficulties and improve health and well‐being. Specific concentration should be given to the development and delivery of information support for caregivers of post‐treatment cancer survivors.     

Equitably improving outcomes for cancer survivors and supporting caregivers: A blueprint for care delivery,research, education,and policy

Cancer care delivery is being shaped by growing numbers of cancer survivors coupled with provider shortages, rising costs of primary treatment and follow-up care, significant survivorship health disparities, increased reliance on informal caregivers, and the transition to value-based care. These factors create a compelling need to provide coordinated, comprehensive, personalized care for cancer survivors in ways that meet survivors’ and caregivers’ unique needs while minimizing the impact of provider shortages and controlling costs for health care systems, survivors, and families. The authors reviewed research identifying and addressing the needs of cancer survivors and caregivers and used this synthesis to create a set of critical priorities for care delivery, research, education, and policy to equitably improve survivor outcomes and support caregivers. Efforts are needed in 3 priority areas: 1) implementing routine assessment of survivors’ needs and functioning and caregivers’ needs; 2) facilitating personalized, tailored, information and referrals from diagnosis onward for both survivors and caregivers, shifting services from point of care to point of need wherever possible; and 3) disseminating and supporting the implementation of new care methods and interventions.     

La place des proches en onco-hématologie,utopie ou réalité ?

A cancer diagnosis has a significant impact not only on the patients, but also on their caregivers. There is no universal definition for the term “caregivers” and it may include spouses, partners, children, relatives, or friends. Caregivers are often the primary source of support and their role changes as the patient’s needs change. Caregivers work with the health care team and have an important role in improving the patient’s health quality of life. But caregivers often neglect their own well-being, including psychological, physical, social, financial, or spiritual issues. This article will attempt to provide an understanding of the multifaceted role of caregivers in cancer care, describe the impact of this role on the caregiver’s quality of life, describe interventions, and formulate proposals for providing support to non-medical persons caring for patients with cancer.     

American Cancer Society prostate cancer survivorship care guidelines

Answer questions and earn CME/CNE Prostate cancer survivors approach 2.8 million in number and represent 1 in 5 of all cancer survivors in the United States. While guidelines exist for timely treatment and surveillance for recurrent disease, there is limited availability of guidelines that facilitate the provision of posttreatment clinical follow‐up care to address the myriad of long‐term and late effects that survivors may face. Based on recommendations set forth by a National Cancer Survivorship Resource Center expert panel, the American Cancer Society developed clinical follow‐up care guidelines to facilitate the provision of posttreatment care by primary care clinicians. These guidelines were developed using a combined approach of evidence synthesis and expert consensus. Existing guidelines for health promotion, surveillance, and screening for second primary cancers were referenced when available. To promote comprehensive follow‐up care and optimal health and quality of life for the posttreatment survivor, the guidelines address health promotion, surveillance for prostate cancer recurrence, screening for second primary cancers, long‐term and late effects assessment and management, psychosocial issues, and care coordination among the oncology team, primary care clinicians, and nononcology specialists. A key challenge to the development of these guidelines was the limited availability of published evidence for management of prostate cancer survivors after treatment. Much of the evidence relies on studies with small sample sizes and retrospective analyses of facility‐specific and population databases. CA Cancer J Clin 2014;64:225–249. © 2014 American Cancer Society .     

Needs assessment of family caregivers of cancer survivors: three cohorts comparison

Purpose/Background: Caregivers' quality of life (QOL) may be maximized when the caregivers' needs in the context of cancer care are met. Therefore, determining what needs are not being satisfied for family caregivers should be the first step in the development of programs designed to enhance caregivers' QOL. Method: The 28‐item Needs Assessment of Family Caregivers‐Cancer (NAFC‐C) scale was developed and validated with caregivers at three different survivorship phases: at 2 months (n=162), 2 years (n=896), and 5 years (n=608) post‐diagnosis. Results: The NAFC‐C helped to identify caregivers whose needs were less likely to be met, based on their age and ethnicity. Furthermore, the extent to which caregivers' psychosocial needs were not being met was a consistent and strong predictor of poor mental health across all phases of survivorship, beyond the effects of a host of demographic characteristics. Conclusion: Findings suggest that interventions designed to help caregivers manage their own emotional distress as well as the survivors' distress, find meaning in the cancer caregiving experience, and foster supportive familial relationship will benefit caregivers by improving their QOL, not only during the time of diagnosis and treatment but years after. Copyright © 2009 John Wiley & Sons, Ltd.     

Psychosocial interventions and quality of life in gynaecological cancer patients: a systematic review

Objective: Women with gynaecological cancer are at risk of poor quality of life outcomes. Although various psychosocial interventions have been developed to address these concerns, such interventions have not yet been systematically evaluated in this population. The current review provides an up‐to‐date and comprehensive summary of the evidence regarding the effectiveness of psychosocial interventions in women with gynaecological cancers. Methods: Relevant studies were identified via Medline, CINAHL, and PsycINFO databases (1980 to June 2008), reference lists of articles and reviews, grey literature databases, and consultations with physicians and other experts in the field. Only controlled trials comparing a psychosocial intervention with a control group in a gynaecological cancer population, with at least one quality of life variable as a main outcome, were included in the review. Two authors independently assessed trial quality and extracted data. Results: Twenty‐two studies involving 1926 participants were included. There was substantial variability in study quality and results. Evidence was mixed regarding intervention effects on social and sexual functioning, distress, depression, anxiety, attitude to medical care, self‐esteem and body image. Interventions generally did not improve physical or vocational outcomes. Conclusions: There was limited evidence in support of healing touch, whereas information‐based interventions seemed largely unable to provide meaningful benefits. Cognitive‐behavioural interventions had some positive effects. Counselling appeared to be the most promising intervention strategy for addressing quality of life concerns for women with gynaecological cancers. Copyright © 2008 John Wiley & Sons, Ltd.     

Quality of life of family caregivers at 2 years after a relative's cancer diagnosis

Purpose: Although a growing body of research has documented the quality of life (QOL) of cancer survivors beyond the initial phase of the survivorship, similar knowledge about family caregivers of cancer survivors remains limited. Thus, the current study aimed: (a) to characterize the multidimensional aspects of the QOL of family caregivers of cancer survivors at 2 years after the diagnosis and (b) to predict certain aspects of caregivers' QOL by their demographic and caregiving characteristics. Methods: A total of 1635 caregivers of cancer survivors participated in the nationwide Quality of Life Survey for Caregivers. Multidimensional aspects of QOL were assessed, including mental and physical health, as well as psychological adjustment and spirituality at 2 years post‐diagnosis of their relatives' cancer. Results: Family caregivers reported normal levels of QOL after 2 years post‐diagnosis, except that they were more likely to experience increased awareness of spirituality than do individuals who personally experience a chronic illness. In addition, caregivers' age and income and care‐recipients' poor mental and physical functioning were significant predictors of their QOL at 2 years post‐diagnosis. Conclusions: The findings suggest that younger, relatively poor caregivers who are providing care to relatives with poor mental and physical functioning may benefit from interventions to help in their spirituality and psychological and physical adjustment, 2 years after the initial cancer diagnosis. In addition, older, relatively poor caregivers may benefit from programs to reduce the physical burden of caregiving. These findings have implications for advancing public health research and practice. Copyright © 2009 John Wiley & Sons, Ltd.     

Cancer research network: using integrated healthcare delivery systems as platforms for cancer survivorship research

Introduction

Much progress has been made in cancer survivorship research, but there are still many unanswered questions that can and need to be addressed by collaborative research consortia.

Methods

Since 1999, the National Cancer Institute-funded HMO Cancer Research Network (CRN) has engaged in a wide variety of research focusing on cancer survivorship. With a focus on thematic topics in cancer survivorship, we describe how the CRN has contributed to research in cancer survivorship and the resources it offers for future collaborations.

Results

We identified the following areas of cancer survivorship research: surveillance for and predictors of recurrences, health care delivery and care coordination, health care utilization and costs, psychosocial outcomes, cancer communication and decision making, late effects of cancer and its treatment, use of and adherence to adjuvant therapies, and lifestyle and behavioral interventions following cancer treatment.

Conclusions

With over a decade of experience using cancer data in community-based settings, the CRN investigators and their collaborators are poised to generate evidence in cancer survivorship research.

Implications for Cancer Survivors

Collaborative research within these settings can improve the quality of care for cancer survivors within and beyond integrated health care delivery systems.     

Effectiveness of palliative care interventions offering social support to people with life‐limiting illness—A systematic review

Individuals managing the challenges of life‐limiting illness require adequate social support to maintain quality of life. Qualitative research reports that patients value highly the social support obtained in palliative care interventions such as day care and group therapies. This systematic review aims to summarise existing quantitative evidence on palliative care interventions that facilitate social support. Research literature was systematically searched using electronic databases and key journals. Searches returned a total of 6,247 unique titles of which sixteen were eligible for inclusion. Interventions include group therapies, group practical interventions and palliative day care. Outcome measures and study designs were heterogeneous. Only one study used a validated outcome measure of social support. Benefits were influenced by participant characteristics such as baseline distress. Partial economic evaluation was attempted by two studies. Methodological challenges include attrition and use of outcome measures that were insensitive to change. Statistically significant results were reported in psychological and physical domains. Evidence is limited due to methodological issues and a scarcity of quantitative research, particularly regarding long‐term benefits and cost‐effectiveness. Interventions may be more beneficial to some groups than others.     

Family and caregiver needs over the course of the cancer trajectory

When a patient is diagnosed with cancer, family members often assume responsibility for providing care. They are typically involved not only with the diagnostic and treatment phases of care but also across the care trajectory and into survivorship. These caregivers are a primary source of support to individuals with cancer. The purpose of this article is to present an overview of the challenges, needs, and roles of family caregivers over the course of the cancer treatment trajectory and to discuss what support the professionals can provide. Caregivers require support, coordination, and communication with health care providers if they are to be successful in carrying out tasks of care. Concern for caregivers as partners in patient care and caregiver outcomes deserves attention from health care professionals. Considering the caregivers' value to the health care team, this role should not be underestimated.     

Quality of life of family caregivers 5 years after a relative's cancer diagnosis: follow-up of the national quality of life survey for caregivers

Background. Although cancer has been considered as a chronic disease for those diagnosed, the long‐term impact of cancer on the family caregivers' quality of life (QOL) remains unknown. Thus, the current study aimed: (a) to characterize family caregivers of cancer survivors, (b) to describe the multidimensional aspects of QOL of family caregivers of cancer survivors, and (c) to identify demographic and caregiving experience factors that may play significant roles in the caregivers' QOL around 5 years after the relative's initial diagnosis. Methods. A total of 1218 caregivers participated in the 5‐year follow‐up nationwide QOL Survey for Caregivers. Demographics and caregiving experiences were measured 2 years post‐diagnosis of their relative's cancer. Multidimensional aspects of QOL were assessed, including mental and physical health, psychological adjustment, and spirituality at 5 years post‐diagnosis. Results. Three groups of caregivers were identified: former caregivers due to the recipients being in remission, former caregivers whose recipients were deceased, and current caregivers. Current caregivers reported worst levels of QOL. Bereaved caregivers reported lower levels of psychological and spiritual adjustment than former caregivers whose recipients were in remission. In addition, caregivers' age and stress were consistent predictors of QOL across three caregiver groups at 5 years post‐diagnosis. Conclusions. The findings help to increase evidence‐based awareness of the long‐term impact of cancer on the family caregivers' QOL. Findings also have implications for developing programs, whereby family caregivers in the various phases of caregivership will benefit by improving their QOL. Copyright © 2010 John Wiley & Sons, Ltd.