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Supportive Care Needs of Cancer Patients and Caregivers

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A special issue of Current Oncology (ISSN 1718-7729). This special issue belongs to the section "Palliative and Supportive Care".

Deadline for manuscript submissions: closed (30 November 2021) | Viewed by 43807

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Special Issue Editors

Dr. Jackie Bender

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Guest Editor

1. Princess Margaret Cancer Centre, University Health Network, Toronto, Ontario, Canada
2. Dalla Lana School of Public Health and Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada
Interests: cancer survivorship; digital health; implementation science; peer navigation; online support groups and social media; virtual care; patient-oriented research; intervention research; mixed-methodology

Dr. Sylvie Lambert

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Guest Editor

1. Ingram School of Nursing, McGill University, Montreal, QC, Canada
2. St. Mary’s Ressearch Centre, Montreal, QC, Canada
Interests: psychosocial oncology; digital health; caregivers; patient-reported outcome measures (PROMs); patient-reported experience measures (PREMs); self-management; implementation
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Special Issue Information

Dear Colleagues,

A diagnosis of cancer and its treatment can result in a wide range of short and long-term side effects and accompanying distress, which can impair patients’ quality of life. For many, these supportive care issues are neglected or not adequately addressed by the formal healthcare system, resulting in a high burden of unmet needs. Family members or spouse caregivers are critical in maintaining and improving the quality of life of patients with cancer and in helping to address their unmet needs. However, family caregivers require support as well, and as they often fulfill their role without formal assistance, they experience considerable unmet supportive care needs themselves. The accurate assessment of perceived needs is critical in order to tailor health services and supportive care interventions to each patient and family caregiver’s circumstances, psychosocial profile and supportive care needs.

Several individual studies and systematic reviews have reported on the supportive care needs of cancer patients and their family members using a variety of assessment tools and qualitative and quantitative methodologies. Collectively, this research has enhanced our understanding of the diverse needs of cancer patients and their family caregivers and led to the development of numerous supportive care interventions. However, gaps in the literature remain. For this Special Issue of Current Oncology, submissions that advance the literature on the supportive care needs of cancer patients and family caregivers are sought. Although all manuscripts on the supportive care needs of cancer patients or family caregivers will be considered, priority will be given to manuscripts focusing on: innovations in the assessment, analysis and management of supportive care needs; the translation of unmet needs research to clinical applications (e.g., use of unmet needs as a PRO); longitudinal analyses investigating changes in unmet needs over time; dyadic studies on the interaction between patients’ and caregivers’ unmet needs; and experimental designs that assess the impact of supportive care needs interventions. In addition, we encourage submissions that investigate the unique needs and priorities of under-researched groups, including patients with less prevalent cancers, First Nations, Inuit, Metis and urban Indigenous, racialized, new immigrant and 2SLGBTQIA+.

Dr. Jackie Bender
Dr. Sylvie Lambert
Guest Editors

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Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

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Keywords

supportive care needs
patient
family
quantitative research
qualitative research
intervention research
mixed-methods
psychometric analysis

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Published Papers (11 papers)

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11 pages, 236 KiB

Open AccessArticle

Experiences of People with Cancer from Rural and Remote Areas of Western Australia Using Supported Accommodation in Perth While Undergoing Treatment

by Andrette Chua, Evelyn Nguyen, Li Lin Puah, Justin Soong and Sharon Keesing

Curr. Oncol. 2022, 29(2), 1190-1200; https://doi.org/10.3390/curroncol29020101 - 16 Feb 2022

Cited by 4 | Viewed by 2661

Abstract

The aim of the study was to explore the lived experiences of people diagnosed with cancer from rural and remote areas of Western Australia, who utilise supported accommodation services whilst undergoing treatment in the capital city (Perth). Methods A qualitative phenomenological approach was used in this study. Ten participants were recruited using purposive sampling, who were aged between 35–65 years, were diagnosed with cancer within the previous three months and used accommodation services within the past 12 months. Semi-structured in-depth interviews were conducted with a duration of approximately 45–60 min via Zoom, FaceTime or phone call. Interview data was transcribed, thematically analysed and coded into relevant themes. Results: Three overarching themes were derived from the interviews–“It’s harder to have cancer when you have to relocate for treatment,” “The paradoxical experience of staying at the accommodation,” and “Feeling grateful for the support offered’. Conclusions: People diagnosed with cancer who have to relocate during treatment require emotional, logistical, and social supports. Cancer accommodation services are essential in enabling individuals to continue engaging in meaningful occupations and maintain their quality of life. Our study highlights the need for cancer accommodation services to consider the complex needs of individuals completing treatment for cancer in locations away from their usual homes. Full article

(This article belongs to the Special Issue Supportive Care Needs of Cancer Patients and Caregivers)

13 pages, 246 KiB

Open AccessArticle

Peer Support Needs and Preferences for Digital Peer Navigation among Adolescent and Young Adults with Cancer: A Canadian Cross-Sectional Survey

by Jacqueline L. Bender, Natasha Puri, Sarah Salih, Norma M. D’Agostino, Argerie Tsimicalis, A. Fuchsia Howard, Sheila N. Garland, Karine Chalifour, Emily K. Drake, Anthony Marrato, Nikki L. McKean and Abha A. Gupta

Curr. Oncol. 2022, 29(2), 1163-1175; https://doi.org/10.3390/curroncol29020099 - 16 Feb 2022

Cited by 10 | Viewed by 4505

Abstract

Adolescents and young adults (AYA) with cancer desire peer support and require support programs that address their unique needs. This study investigated the need for, and barriers to, peer support and preferences for digital peer navigation among AYA. A cross-sectional survey was administered to AYA, diagnosed with cancer between the ages of 15–39, at a cancer center and through social media. Descriptive summary statistics were calculated. Participants (n = 436) were on average 31.2 years (SD = 6.3), 3.3 years since-diagnosis (SD = 3.8), and 65% (n = 218) were women. Over three-quaters (n = 291, 76.6%) desired peer support from cancer peers, but 41.4% (n = 157) had not accessed peer support. Main access barriers were: Inconvenience of in-person support groups (n = 284, 76.1%), finding AYA with whom they could relate (n = 268, 72.4%), and finding AYA-specific support programs (n = 261, 70.4%). Eighty-two percent (n = 310) desired support from a peer navigator through a digital app, and 63% (n = 231) were interested in being a peer navigator. Participants indicated a greater need for emotional (n = 329, 90.1%) and informational support (n = 326, 89.1%) than companionship (n = 284, 78.0%) or practical support (n = 269, 73.6%) from a peer navigator. Foremost peer matching characteristics were cancer-type (n = 329, 88.4%), specific concerns (n = 317, 86.1%), and age-at-diagnosis (n = 316, 86.1%). A digital peer navigation program was desired by over 80% of a large Canadian sample of AYA and could potentially overcome the barriers AYA experience in accessing peer support. The design of a peer navigation program for AYA should consider the matching characteristics and multidimensional support needs of AYA. Full article

(This article belongs to the Special Issue Supportive Care Needs of Cancer Patients and Caregivers)

20 pages, 716 KiB

Open AccessFeature PaperArticle

Feasibility, Acceptability, and Clinical Significance of a Dyadic, Web-Based, Psychosocial and Physical Activity Self-Management Program (TEMPO) Tailored to the Needs of Men with Prostate Cancer and Their Caregivers: A Multi-Center Randomized Pilot Trial

by Sylvie D. Lambert, Lindsay R. Duncan, S. Nicole Culos-Reed, Laura Hallward, Celestia S. Higano, Ekaterina Loban, Anne Katz, Manon De Raad, Janet Ellis, Melissa B. Korman, Carly Sears, Cindy Ibberson, Lauren Walker, Eric Belzile, Paramita Saha-Chaudhuri, Helen McTaggart-Cowan and Stuart Peacock

Curr. Oncol. 2022, 29(2), 785-804; https://doi.org/10.3390/curroncol29020067 - 1 Feb 2022

Cited by 11 | Viewed by 5418

Abstract

Background: Prostate cancer is the most common cancer diagnosis among men. Family caregivers (often female spouses) play a key role in ensuring patients’ needs are met, frequently assuming their role with no formal training, which can contribute to a high burden. The purpose of this study was to pilot TEMPO—the first dyadic, Tailored, wEb-based, psychosocial and physical activity self-Management PrOgram for men with prostate cancer and their caregivers. Methods: 49 men with prostate cancer and their caregivers were randomized to TEMPO or usual care. Baseline and follow-up questionnaires were completed to assess feasibility, acceptability, and clinical significance. A priori benchmarks for these outcomes were set. Thirteen exit interviews were conducted to further explore acceptability. Results: Feasibility benchmarks were met with the exception for recruitment with on average 6.1 dyads recruited/month (benchmark: 8 dyads/month). Benchmarks of acceptability focused on attrition (<25%) and system usability, which were met. Using the strict criteria for adherence of 100% of the module viewed and participants spending at least 15 min on the module, 45% of participants were adherent. The clinical significance on anxiety and quality of life was supported for caregivers, and mostly supported for the men with prostate cancer. Conclusion: This pilot trial was successful, with minor modifications needed prior to a large trial. Full article

(This article belongs to the Special Issue Supportive Care Needs of Cancer Patients and Caregivers)

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12 pages, 299 KiB

Open AccessArticle

Sâkipakâwin: Assessing Indigenous Cancer Supports in Saskatchewan Using a Strength-Based Approach

by Stephanie Witham, Tracey Carr, Andreea Badea, Meaghan Ryan, Lorena Stringer, Leonzo Barreno and Gary Groot

Curr. Oncol. 2022, 29(1), 132-143; https://doi.org/10.3390/curroncol29010012 - 28 Dec 2021

Cited by 4 | Viewed by 3836

Abstract

Given that the health care system for Indigenous people tends to be complex, fragmented, and multi-jurisdictional, their cancer experiences may be especially difficult. This needs assessment study examined system-level barriers and community strengths regarding cancer care experiences of Indigenous people in Saskatchewan. Guided by an advisory committee including Indigenous patient and family partners, we conducted key informant interviews with senior Saskatchewan health care administrators and Indigenous leaders to identify supports and barriers. A sharing circle with patients, survivors, and family members was used to gather cancer journey experiences from Indigenous communities from northern Saskatchewan. Analyses were presented to the committee for recommendations. Key informants identified cancer support barriers including access to care, coordination of care, a lack of culturally relevant health care provision, and education. Sharing circle participants discussed strengths and protective factors such as kinship, connection to culture, and spirituality. Indigenous patient navigation, inter-organization collaboration, and community relationship building were recommended to ameliorate barriers and bolster strengths. Recognizing barriers to access, coordination, culturally relevant health care provision, and education can further champion community strengths and protective factors and frame effective cancer care strategies and equitable cancer care for Indigenous people in Saskatchewan. Full article

(This article belongs to the Special Issue Supportive Care Needs of Cancer Patients and Caregivers)

13 pages, 405 KiB

Open AccessArticle

The Relationship between Cancer Caregiver Burden and Psychological Outcomes: The Moderating Role of Social Connectedness

by Eva Y. N. Yuen and Carlene J. Wilson

Curr. Oncol. 2022, 29(1), 14-26; https://doi.org/10.3390/curroncol29010002 - 22 Dec 2021

Cited by 18 | Viewed by 4504

Abstract

The present study: (a) examined the extent of caregiver burden and psychological wellbeing and (b) tested whether social connectedness moderated the association between caregiver burden and psychological symptoms in caregivers of people with cancer. The cross-sectional survey study included 189 cancer caregivers (mean age = 36.19 years, standard deviation = 11.78; 80.4% female). Data were collected on caregiver burden, social connectedness, and depression and anxiety. Moderation analysis was conducted to examine the effect of social connectedness on the relationship between caregiver burden and depression and anxiety. Caregiver burden was positively associated with depression and anxiety symptoms. Controlling for significant demographic and caregiver characteristics, the moderation model showed as perceived social connectedness increased, the relationship between caregiver burden and depression decreased (β = −0.007, se = 0.004, 95% CI: −0.014, 0.000, p = 0.05). By contrast, social connectedness did not moderate the association between caregiver burden and anxiety. Findings have implications for the management of depression in cancer caregivers. Social connectedness appears to provide a protective buffer from the negative impacts of caregiving, providing increased psychological resources to manage the burden associated with caregiving, resulting in lower depression. Research on strategies to improve caregiver wellbeing through enhancing engagement with social networks in ways that improve perceived sense of connectedness with others is warranted. Full article

(This article belongs to the Special Issue Supportive Care Needs of Cancer Patients and Caregivers)

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11 pages, 238 KiB

Open AccessArticle

Stakeholder-Identified Interventions to Address Cancer Survivors’ Psychosocial Needs after Completing Treatment

by Sarah Murnaghan, Cynthia Kendell, Jonathan Sussman, Geoffrey A. Porter, Doris Howell, Eva Grunfeld and Robin Urquhart

Curr. Oncol. 2021, 28(6), 4961-4971; https://doi.org/10.3390/curroncol28060416 - 25 Nov 2021

Viewed by 2918

Abstract

The interventions used in cancer-survivorship care do not always address outcomes important to survivors. This study sought to understand stakeholders’ views on the key concerns of cancer survivors after treatment and the interventions needed to meet survivors’ and families’ psychosocial needs after completing cancer treatment. We conducted a descriptive qualitative study using semi-structured interviews with stakeholders (survivors, family/friend caregivers, oncology providers, primary care providers, and cancer system decision-/policy-makers) from across Canada. For the data analysis, we used techniques commonly employed in descriptive qualitative research, such as coding, grouping, detailing, and comparing the data. There were 44 study participants: 11 survivors, seven family/friend caregivers, 18 health care providers, and eight decision-/policy-makers. Stakeholder-relevant interventions to address survivors’ psychosocial needs were categorized into five groups, as follows: information provision, peer support, navigation, knowledge translation interventions, and caregiver-specific supports. These findings, particularly interventions that deliver timely and relevant information about the post-treatment period and knowledge translation interventions that strive to integrate effective tools and programs into survivorship care, have implications for future research and practice. Full article

(This article belongs to the Special Issue Supportive Care Needs of Cancer Patients and Caregivers)

15 pages, 568 KiB

Open AccessArticle

Parents’ Experiences with Home-Based Oral Chemotherapy Prescribed to a Child Diagnosed with Acute Lymphoblastic Leukemia: A Qualitative Study

by Étienne Camiré-Bernier, Erwan Nidelet, Amel Baghdadli, Gabriel Demers, Marie-Christine Boulanger, Marie-Claude Brisson, Bruno Michon, Sophie Lauzier and Isabelle Laverdière

Curr. Oncol. 2021, 28(6), 4377-4391; https://doi.org/10.3390/curroncol28060372 - 1 Nov 2021

Cited by 3 | Viewed by 2841

Abstract

Acute lymphoblastic leukemia (ALL) is the most common type of cancer in children. Treatment includes home-based oral chemotherapies (OCs) (e.g., 6-mercaptopurine and dexamethasone) taken for 2 to 3 years. The management of OC can be challenging for children and their parents. However, the multifaceted experience of families with children taking OC for ALL is largely undescribed. We report the experience with these OCs from the parents’ perspective. We conducted a qualitative descriptive study. Semi-structured interviews were conducted with the parents of children with ALL aged < 15 years, followed in a specialized university-affiliated center. The interviews were fully transcribed and thematically analyzed. Thirteen of the seventeen eligible parents (76.5%) participated in the study. The parents’ motivation to follow the recommendations provided by the multidisciplinary care team regarding OC was very high. The quantity and the quality of the information received were judged adequate, and the parents reported feeling knowledgeable enough to take charge of the OC at home. Adapting to the consequences of OC on family daily life was collectively identified as the biggest challenge. This includes developing and maintaining a strict daily routine, adapting to the child’s neurobehavioral changes during dexamethasone days and adapting family social life. Our findings have several implications for enhancing the support offered to families with home-based OC for ALL. Supportive interventions should consider the family as a whole and their needs should be regularly monitored. Specific attention should be paid to the development and maintenance of a routine, to the parental burden, and to the emotional impact, especially regarding dexamethasone. Full article

(This article belongs to the Special Issue Supportive Care Needs of Cancer Patients and Caregivers)

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19 pages, 306 KiB

Open AccessArticle

At the Heart of It All: Emotions of Consequence for the Conceptualization of Caregiver-Reported Outcomes in the Context of Colorectal Cancer

by A. Fuchsia Howard, Kelsey Lynch, Scott Beck, Maria-José Torrejón, Jonathan Avery, Sally Thorne, Antony Porcino, Mary De Vera, Leah Lambert, Angela Wolff, Melanie McDonald, Joyce Lee, Penelope Hedges and Michael McKenzie

Curr. Oncol. 2021, 28(5), 4184-4202; https://doi.org/10.3390/curroncol28050355 - 16 Oct 2021

Cited by 8 | Viewed by 3043

Abstract

Colorectal cancer (CRC) can be demanding for primary caregivers; yet, there is insufficient evidence describing the caregiver-reported outcomes (CROs) that matter most to caregivers. CROs refer to caregivers’ assessments of their own health status as a result of supporting a patient. The study purpose was to describe the emotions that were most impactful to caregivers of patients with CRC, and how the importance caregivers attribute to these emotions changed from diagnosis throughout treatment. Guided by qualitative Interpretive Description, we analyzed 25 caregiver and 37 CRC patient interviews, either as individuals or as caregiver-patient dyads (six interviews), using inductive coding and constant comparative techniques. We found that the emotional aspect of caring for a patient with CRC was at the heart of caregiving. Caregiver experiences that engendered emotions of consequence included: (1) facing the patient’s life-changing diagnosis and an uncertain future, (2) needing to be with the patient throughout the never-ending nightmare of treatment, (3) bearing witness to patient suffering, (4) being worn down by unrelenting caregiver responsibilities, (5) navigating their relationship, and (6) enduring unwanted change. The broad range of emotions important to caregivers contributes to comprehensive foundational evidence for future conceptualization and the use of CROs. Full article

(This article belongs to the Special Issue Supportive Care Needs of Cancer Patients and Caregivers)

17 pages, 591 KiB

Open AccessArticle

The Supportive Care Needs of Regional and Remote Cancer Caregivers

by Anna Stiller, Belinda C. Goodwin, Fiona Crawford-Williams, Sonja March, Michael Ireland, Joanne F. Aitken, Jeff Dunn and Suzanne K. Chambers

Curr. Oncol. 2021, 28(4), 3041-3057; https://doi.org/10.3390/curroncol28040266 - 9 Aug 2021

Cited by 14 | Viewed by 4035

Abstract

Objective: As cancer survival rates continue to increase, so will the demand for care from family and friends, particularly in more isolated settings. This study aims to examine the needs of cancer caregivers in regional and remote Australia. Methods: A total of 239 informal (i.e., non-professional) cancer caregivers (e.g., family/friends) from regional and remote Queensland, Australia, completed the Comprehensive Needs Assessment Tool for Cancer Caregivers (CNAT-C). The frequencies of individuals reporting specific needs were calculated. Logistic regression analyses assessed the association between unmet needs and demographic characteristics and cancer type. Results: The most frequently endorsed needs were lodging near hospital (77%), information about the disease (74%), and tests and treatment (74%). The most frequent unmet needs were treatment near home (37%), help with economic burden (32%), and concerns about the person being cared for (32%). Younger and female caregivers were significantly more likely to report unmet needs overall (OR = 2.12; OR = 0.58), and unmet healthcare staff needs (OR = 0.35; OR = 1.99, respectively). Unmet family and social support needs were also significantly more likely among younger caregivers (OR = 0.35). Caregivers of breast cancer patients (OR = 0.43) and older caregivers (OR = 0.53) were significantly less likely to report unmet health and psychology needs. Proportions of participants reporting needs were largely similar across demographic groups and cancer type with some exceptions. Conclusions: Caregiver health, practical issues associated with travel, and emotional strain are all areas where regional and remote caregivers require more support. Caregivers’ age and gender, time since diagnosis and patient cancer type should be considered when determining the most appropriate supportive care. Full article

(This article belongs to the Special Issue Supportive Care Needs of Cancer Patients and Caregivers)

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11 pages, 257 KiB

Open AccessArticle

An Investigation of the Effect of Attachment on Distress among Partners of Patients with Ovarian Cancer and Their Relationship with the Cancer Care Providers

by Danielle Petricone-Westwood, Jacqueline Galica, Sarah Hales, Elisa Stragapede and Sophie Lebel

Curr. Oncol. 2021, 28(4), 2950-2960; https://doi.org/10.3390/curroncol28040258 - 4 Aug 2021

Cited by 2 | Viewed by 2933

Abstract

Caregivers of patients with ovarian cancer experience distress related to caregiving difficulties within cancer care. Attachment insecurity is a well-known protector of distress, particularly as it relates to support from others. Using multivariate analyses, this study sought to determine the contribution of attachment insecurity and experiences with cancer care on symptoms of depression and anxiety, and investigated whether attachment insecurity moderated the relationship between caregiving experiences and distress. Multiple hierarchical regression analyses were conducted as part of a larger cross-sectional questionnaire study of distress among partners of patients with ovarian cancer. Participants (n = 82) were predominantly male, white, had household incomes over $100,000 and postsecondary education. Caregiving experiences explained 56% of the variance in depression, and 28% of the variance in anxiety. Specifically, lack of time for social relations as a result of caregiving significantly predicted depression and anxiety. Attachment anxiety correlated with both depression and anxiety, but attachment avoidance did not. Neither attachment anxiety nor attachment avoidance significantly contributed to distress variance, and neither moderated any of the relationships between caregiving experiences and distress outcomes. This study highlights the importance for cancer care to recognize the effect of caregiving responsibilities upon caregivers’ mental health, regardless of vulnerability to distress. Full article

(This article belongs to the Special Issue Supportive Care Needs of Cancer Patients and Caregivers)

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8 pages, 591 KiB

Open AccessPerspective

“Partner”, “Caregiver”, or “Co-Survivor”—Might the Label We Give the Partners of Cancer Patients Affect the Health Outcome of the Patients and Their Partners?

by Hannah M. K. McGillivray, Elisabetta E. L. Piccolo and Richard J. Wassersug

Curr. Oncol. 2022, 29(1), 122-129; https://doi.org/10.3390/curroncol29010010 - 27 Dec 2021

Cited by 7 | Viewed by 2804

Abstract

Having a life partner significantly extends survival for most cancer patients. The label given to the partners of cancer patients may, however, influence the health of not just the patients but their partners. “Caregiver” is an increasingly common label for the partners of patients, but it carries an implicit burden. Referring to partners as “caregivers” may be detrimental to the partnerships, as it implies that the individuals are no longer able to be co-supportive. Recognizing this, there has been some effort to relabel cancer dyads as “co-survivors”. However, many cancer patients are not comfortable being called a “survivor”, and the same may apply to their partners. Cancer survivorship, we argue, could be enhanced by helping keep the bond between patients and their partners strong. This includes educating patients and partners about diverse coping strategies that individuals use when facing challenges to their health and wellbeing. We suggest that preemptive couples’ counselling in cancer centers may benefit both patients and their partners. Full article

(This article belongs to the Special Issue Supportive Care Needs of Cancer Patients and Caregivers)

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