Cancer Caregivers Research Articles

Integrating yoga into comprehensive cancer care: Starting somewhere

IntroductionThe rapid increase in cancer survivors in the United States (US) highlights the importance of survivors’ long-term care needs and symptom management. Given evidence that yoga supports cancer related symptoms, our aim was to develop and implement a community yoga program available for cancer survivors, family members, and staff involved in cancer care at a public comprehensive cancer center in the US. Given the wide age range and potential side effects from cancer treatment, we adapted the yoga program to meet the needs of cancer survivors. MethodsBeginning in May 2017, we offered sixty-minute gentle yoga sessions for all medically cleared cancer survivors and their family members, caregivers, and friends, as well as oncology staff. We aimed to evaluate acceptability, development, and implementation of an adaptive yoga program at our comprehensive cancer center using mixed methods. Classes were initially offered once a week, then increased to twice a week. A total of five service evaluations were sent approximately every six months between April 2018-October 2019 to evaluate participant satisfaction (n = 90 responses). Qualitative data were collected and analyzed using thematic analysis of participant satisfaction, allowing us to continuously monitor the yoga program and adjust to meet participants’ needs. ResultsBetween May 2017 and February 2020, 176 people attended our program. Ages ranged from 21 to 72 years, with an average age of 45 years. Based on these evaluations, 96 % (n = 86) of participants rated both the program and teachers excellent, and 4 % (n = 4) rated the program and teachers good. Qualitative themes highlighted positive aspects of the program, including accessibility, inclusivity, and adaptive yoga based on medical needs, skill level, and abilities. ConclusionsAdaptive yoga programs are well-accepted by cancer survivors and caregivers, and may contribute a solution to healthcare staff and physician burnout. It is essential to build a solid foundation of self-care and wellness programming for cancer survivors and to create and foster adaptive yoga classes. Next steps for our program include evaluating yoga within the clinical setting, including chemotherapy infusion centers, and further research on reduction in stress through yoga in cancer survivors.

Health literacy, eHealth literacy and their association with burden, distress, and self-efficacy among cancer caregivers.

Health literacy skills are vital for cancer caregivers in helping cancer survivors to navigate their diagnosis, treatment, and recovery but little is known. This study explored health literacy and eHealth literacy among cancer caregivers and the relationship between health literacy/eHealth literacy and potential associated factors. Informal caregivers who had cared for an individual with cancer completed a survey which collected demographic data and measured caregiver health literacy, eHealth literacy, self-efficacy, burden, and distress. Seven percent of caregivers had inadequate health literacy. Caregivers scored lowest on health literacy domains related to caregiver social support, information seeking and understanding care recipient preferences. eHealth literacy was associated with self-efficacy and burden while, different health literacy domains were associated with burden ('Understanding care recipient needs and preferences'), self-efficacy ('Cancer-related communication with the care recipient' and 'Understanding care recipients needs and preferences') and distress ('Proactivity and determination to seek information', 'Understanding care recipient needs and preferences', 'Understanding the healthcare system'). Findings highlight key areas of need regarding cancer caregiver health literacy which future research can target. Given the observed relationship between aspects of health literacy and burden, distress and self-efficacy future work could be carried out on how to alleviate high levels of burden and distress and how to enhance self-efficacy among cancer caregivers by addressing health literacy skills. Findings from this study will inform the development of health literacy interventions to support caregivers to build their health literacy skills and enable this group to better support cancer survivors as a result.

Overcoming Patient Pain Together: Breast Cancer Patients and Caregivers’ Pretreatment Psychosocial Distress Linked to Patients’ Pain Interference During the First Year of Treatment

Breast cancer patients experience treatment-related pain from surgery, radiation, chemotherapy, and long-term hormonal treatment, which can lead to poorer outcomes. Patient and family caregivers' psychosocial distress exacerbates patient pain interference, but this has not been directly examined among breast cancer patients in dyadic models longitudinally. Guided by a biopsychosocial framework, the Biobehavioral Family Model, we explore how multiple reports of patient pain interference across the first year of treatment are linked to the patient (N = 55) and caregiver (N = 55) pretreatment psychosocial distress (eg, depression, anxiety, marital satisfaction, family relationship quality). Specifically, we find that breast cancer patients’ pain interference increases and then decreases over the first year of treatment. Additionally, caregivers' pretreatment anxiety was associated with increased patient pain interference over time (B = .19, SE = .07, P = .008), while patients’ pretreatment psychosocial distress was not associated with a change in their pain interference. Yet, looking at clinically specific times during the first year of treatment, we find that caregiver-reported higher marital satisfaction is associated with lower patient-reported pain interference later in treatment (6 months: B = −.58, SE = .24, P = .017; 12 months: B = −.82, SE = .23, P < .001). We conclude that, per the Biobehavioral Family Model, pretreatment patient and caregiver psychosocial distress is linked to patient pain interference during the first year of breast cancer treatment. Thus, caregivers’ psychosocial distress (ie, anxiety and marital satisfaction) may be a particularly important target in future dyadic behavioral intervention strategies to reduce breast cancer patient pain. PerspectiveThis article presents the link between breast cancer patients and family caregiver pretreatment psychosocial distress (anxiety, depression, marital satisfaction, and family quality) on patient pain interference during 1 year of breast cancer treatment. Findings suggest that caregiver anxiety and marital satisfaction may be important targets for future dyadic behavioral pain interventions.

Developing “The Health After Cancer Podcast” to amplify cancer survivors’ voices through digital storytelling

BackgroundCancer survivors experience complex medical and psychosocial challenges after a cancer diagnosis, leading to unmet informational and emotional needs. There is a paucity of cancer survivorship educational resources co-created by survivors and medical professionals. ObjectiveOur aim was to create an educational resource for cancer survivors, caregivers, and medical professionals that would leverage digital storytelling to address survivorship topics. Patient involvementOur content and production team included cancer survivors, clinicians, educators, and design experts. All content was co-created by cancer survivors and medical experts. MethodsWe conducted an environmental scan of existing cancer survivorship educational resources in academic and public domains. Applying human-centered design principles, we incorporated patient perspectives through advisory board meetings and focus groups and identified a podcast as the preferred medium. We selected content and speakers, produced the podcast, and developed a corresponding website. ResultsBased on patient recommendations, podcast episodes address mental health, fear of cancer recurrence, relationships, parenting, relating to a new body, care transitions for adult survivors of childhood cancer, disclosing health information, and financial burden of cancer. Podcast guests were invited based on lived or learned experience in these domains. Thirteen guests (survivors, experts) and four hosts (two cancer survivors, two oncologists) co-created 15 podcast episodes. Podcast guests found the storytelling experience to be powerful and therapeutic. DiscussionDigital storytelling is a scalable and accessible educational tool for communicating complex survivorship concepts that can amplify survivors’ voices and increase awareness among survivors and clinicians. Co-creation of educational resources for cancer survivorship by survivors and professionals is a feasible and innovative educational strategy. Practical ValueA podcast created by and for cancer survivors in partnership with medical experts highlights opportunities for peer-to-peer digital storytelling to foster community among survivors and caregivers. FundingPodcast production was supported by the Stanford Comprehensive Cancer Center.

Misalignment of social support in the social media posts of young adult cancer caregivers.

Compared with older cancer caregivers, young adult cancer caregivers (YACC) experience greater stress and depression during the first 6 months of caregiving. Social support can buffer the negative psychological effects associated with cancer caregiving. However, the misalignment of social support is associated with increased distress and worse emotional well-being. As YACC are more likely to utilize social media (SM) to seek social support compared with older cancer caregivers, they may be at greater risk of experiencing the misalignment of social support and related negative outcomes. The purpose of this study was to identify ways that SM posts containing support for YACC's were potentially misaligned with the social support desired by YACC. In this secondary analysis, cancer-related SM posts (N = 760) from 34 YACC's SM accounts were extracted for 6 months following the day of cancer diagnosis and imported into NVivo qualitative analysis software. Open coding of posts from four YACC identified a pattern of SM posts containing responses that may misalign with social support requests, and could be perceived as dismissive of YACC's emotions. Similar posts were grouped together, forming categories which were used to create a codebook and applied in coding all posts from the remaining 30 YACC. Content analysis identified three categories of social support misalignment originating from YACC's SM posts: supplications (n = 251, 33%), prevailing (n = 7, 10.1%), and consolations (n = 16, 2.1%). Supplications involved prayer or trust in god, prevailing posts compared dealing with cancer to a fight and suggested that the person would overcome cancer, and consolations used quotes, song lyrics, and or general reassurances in SM posts. Findings suggest that when YACC use SM during cancer experiences, they may interpret SM posts as social support or as misalignment of social support requests, which in turn can lead to either improved quality of life or additional distress (respectively). This study adds to the body of knowledge regarding how YACC use social media for social support and may inform future interventions designed to match YACC's desired support with support offered.

Understanding communication between patients and healthcare professionals regarding comprehensive biomarker testing in precision oncology: A scoping review.

Precision oncology, using comprehensive biomarker testing (cBT) to inform individual cancer diagnosis, prognosis and treatment, includes increasingly complex technology and clinical data sets. People impacted by cancer (patients and caregivers) and healthcare professionals (HCPs) face distinct challenges in navigating the cBT and personalized treatment landscape. This review summarizes evidence regarding cBT-related communication between people impacted by cancer and HCPs and identifies important avenues for future research in precision oncology. A scoping review was conducted using records published in PubMed during January 2017-August 2022, focusing on the breadth of topics on patient-HCP communication and knowledge resources used by HCPs as guidance in cBT-related communication. Data were extracted from records meeting inclusion criteria, and findings were summarized according to main topics. The search identified 287 unique records and data were extracted from 42 records, including nine from expert input. Most records originated from the United States included patients with different types of cancer, and oncologists were the main HCPs. Patients' motivation for undergoing cBT and receiving results was generally high in different settings. However, patients' understanding of cBT-related concepts was limited, and their knowledge and information preferences changed based on cBT implications and significance to family members. HCPs were valued by patients as a trusted source of information. Limited evidence was available on HCPs' information-seeking behavior and factors influencing cBT-related knowledge and confidence, often self-reported as insufficient. Patient education by knowledgeable and confident HCPs, information management and a caring patient-HCP relationship communicating continuity of care regardless of cBT results are crucial to empower patients and shared decision-making in precision oncology. More data on the process and structure of cBT-related communication, distinction between and characterization of different timepoints of patient-HCP interactions are needed.

“A little bit different now”: Impacts of caregiving for parent with cancer on psychosocial development in emerging and young adulthood

Serving as a family caregiver for, and ultimately losing, a parent with advanced cancer in emerging and young adulthood has substantial, life phase-specific implications for psychosocial development. This qualitative study characterizes domains of psychosocial development impacted by cancer caregiving and parental death in this life phase. As part of a larger study, 33 bereaved emerging/young adult caregivers of parents who died following advanced cancer completed semi-structured interviews. A thematic analysis leveraging the constant comparative method was conducted by two coders and generated three themes, which described impacts of caregiving on: identity, life path, and relational intimacy and roles. Analyses also defined specific outcomes within these domains. Findings suggest that cancer caregiving-loss experiences can greatly influence developmental pursuits in this life phase. Findings validate a range of possible psychosocial impacts these caregivers may experience and can guide development of supportive resources for this growing subgroup of bereaved family caregivers.

Assessment of Post-Traumatic Stress Disorder and Role of Spirituality Amongst Caregivers of Pediatric Cancer Patients in Pakistan

Objective: This study examined the levels of Post-Traumatic Stress Disorder (PTSD) in pediatric cancer caregivers and the impact of spirituality on PTSD in Pakistan. Study Design: Cross-sectional study.Place and Duration of Study: The study was carried out at the Department of Oncology, Shaukat Khanum Memorial Cancer Hospital &amp; Research Centre, Peshawar, Northwest General Hospital &amp; Research Centre, Peshawar in Khyber Pakhtunkhwa (KPK), Pakistan Institute of Medical Sciences, Islamabad and Quaid-e-Azam International Hospital in Islamabad, Pakistan from January 2023 to March 2023.Methods: The study comprised 153 Caregivers of pediatric cancer patients aged One month –12 Years using convenience sampling. The PTSD Checklist-Civilian Version (PCL-C) and Caregiver's Spirituality Scale (CSS-10) were used to collect data. Results: Results of the study found that 81 caregivers (52.94%) had high PTSD, and 96 (62.74%) had high spirituality. Females reported higher PTSD and spirituality than guys. Graduates have more PTSD and spirituality than illiterates and matriculate. PTSD and spirituality had a negative Pearson's Correlation Coefficient. Conclusion: The study emphasizes spirituality as a caregiver's mental health protector. Healthcare practitioners caring for pediatric cancer patients can use the findings to lessen PTSD symptoms by targeting caregivers' spiritual needs. Convenience sampling and self-report measurements decrease generalizability. Future study is needed to investigate the association between PTSD and spirituality in caregivers of pediatric cancer patients.How to cite this: Bashir N, Ain Q, Karim N, Niazi H, Khan MI, Asghar AK. Assessment of Post-Traumatic Stress Disorder and Role of Spirituality Amongst Caregivers of Pediatric Cancer Patients in Pakistan. Life and Science. 2024; 5(1): 33-40. doi: http://doi.org/10.37185/LnS.1.1.440

Exposure to Secondhand Smoke Extract Increases Cisplatin Resistance in Head and Neck Cancer Cells.

Chemotherapy and radiotherapy resistance are major obstacles in the long-term efficacy of head and neck squamous cell carcinoma (HNSCC) treatment. Secondhand smoke (SHS) exposure is common and has been proposed as an independent predictor of HNSCC recurrence and disease-free survival. However, the underlying mechanisms responsible for these negative patient outcomes are unknown. To assess the effects of SHS exposure on cisplatin efficacy in cancer cells, three distinct HNSCC cell lines were exposed to sidestream (SS) smoke, the main component of SHS, at concentrations mimicking the nicotine level seen in passive smokers' saliva and treated with cisplatin (0.01-100 µM) for 48 h. Compared to cisplatin treatment alone, cancer cells exposed to both cisplatin and SS smoke extract showed significantly lower cisplatin-induced cell death and higher cell viability, IC50, and indefinite survival capacity. However, SS smoke extract exposure alone did not change cancer cell viability, cell death, or cell proliferation compared to unexposed control cancer cells. Mechanistically, exposure to SS smoke extract significantly reduced the expression of cisplatin influx transporter CTR1, and increased the expression of multidrug-resistant proteins ABCG2 and ATP7A. Our study is the first to document that exposure to SHS can increase cisplatin resistance by altering the expression of several proteins involved in multidrug resistance, thus increasing the cells' capability to evade cisplatin-induced cell death. These findings emphasize the urgent need for clinicians to consider the potential role of SHS on treatment outcomes and to advise cancer patients and caregivers on the potential benefits of avoiding SHS exposure.

The Role of Spirituality for Coping with Cancer and theSpiritual Care Needs of Women with Breast Cancer and theirFamily Caregivers in Turkey: A Qualitative Study.

This study aims at determining the spiritual care needs of women with breast cancer and their family caregivers, aswell as the effect of spirituality on coping with this illness. This qualitative research utilized aphenomenological design. In-depth individual interviews were conducted with breast cancer women and family caregivers. A total of 26 participants (13 women with breast cancer and 13 family caregivers) were involved. The data were examined using inductive thematic analysis. Three main themes were identified: "Being diagnosed with breast cancer; its emotional and life-related impacts;" "Spirituality in fighting with cancer;" and "Caring period and needs". The results showed that the diagnosis and treatment of breast cancer have multifaceted effects on women and their family caregivers. Spirituality was found to be an essential factor in coping with cancer for women with cancer and their family caregivers. In addition, the results showed that women and family caregivers have some unmet spiritual care needs.

Perspectives on early insights: pediatric cancer caregiving amidst natural calamities - A call for future preparedness.

Natural disasters cause immense damage and disruption to the environment, human lives, and property, posing a threat to safety and well-being. These disasters annually affect individuals and communities, severely impacting mental health. Research indicates a significant link between catastrophic events and an increased risk of mental disorders, including anxiety, depression, substance use, and post-traumatic stress disorder (PTSD). Individuals with chronic conditions, like cancer patients, are particularly vulnerable post-disaster due to disrupted healthcare services. The recent earthquake in Morocco highlighted the urgent need for continued care, especially for vulnerable populations living in poverty. Soleterre Foundation's interventions focus on supporting young cancer patients and their families, emphasizing psychological support following the earthquake. Effective disaster response needs coordinated efforts, clear roles, communication, and standardized healthcare procedures, especially for vulnerable groups like cancer patients. Education programs for patients and clinicians are vital for disaster preparedness. Communication challenges and lack of medical history further emphasize the need for well-defined disaster preparedness plans and continued care guidelines for cancer patients.

“Queer people are excellent caregivers, but we’re stretched so very thin”: Psychosocial wellbeing and impacts of caregiving among LGBTQI cancer carers

BackgroundLGBTQI (lesbian, gay, bisexual, transgender, queer and/or intersex) communities are increasingly recognized as a vulnerable and high-risk population in oncology. LGBTQI cancer carers, including carers who are LGBTQI and other carers of LGBTQI people, experience many of the same stressors as LGBTQI patients but their support needs are often overlooked in the cancer literature.MethodThis mixed-methods study examined distress and quality of life in LGBTQI cancer carers. Online surveys were completed by 129 carers and 31 carers took part in a one-to-one semi-structured interview. Analyses of variance (ANOVAs) tested for differences in psychosocial outcomes and carer experiences by gender, sexuality, age, carer relationship and carer/patient LGBTQI status. Reflexive thematic analysis of interviews and open-ended survey responses facilitated in-depth examination of subjective experiences.Results42.6% of participants reported high or very high distress. Distress was significantly positively correlated with discrimination in cancer care, health impact, financial impact and lack of family support; it was negatively correlated with comfort in LGBTQI sexuality and gender identity, social support and quality of life. Four themes were identified in thematic analysis of qualitative data: (1) Identity on the sidelines: LGBTQI sexuality and gender pushed aside during cancer caregiving; (2) Fear of being shut-out: rejection and exclusion of LGBTQI cancer carers; (3) Lack of support for LGBTQI caregivers; and (4) Closer and stronger relationships due to a culture of mutual caregiving.ConclusionsLGBTQI cancer carers must contend with typical caregiving demands whilst also managing additional minority stressors, including discrimination, rejection from family, isolation from LGBTQI communities, and invisibility in healthcare and support services. Despite this, LGBTQI carers showed resilience in building their own mutually supportive networks to rally around the person with cancer, which were reported to ameliorate psychosocial vulnerabilities. Service providers need to recognize the needs of LGBTQI cancer carers through inclusive and reflective practices. This will facilitate trust and patient and carer sexuality and gender identity disclosure, with positive consequences for wellbeing and satisfaction with cancer care.

African American and Hispanic Cancer Survivors' and Caregivers' Experiences in Nebraska.

Racial and ethnic minority populations experience poorer cancer outcomes compared to non-Hispanic White populations, but qualitative studies have typically focused on single subpopulations. We explored experiences, perceptions, and attitudes toward cancer care services across the care continuum from screening through treatment among African American and Hispanic residents of Nebraska to identify unique needs for education, community outreach, and quality improvement.We conducted four focus groups (N = 19), April-August 2021 with people who were aged 30 or older and who self-identified as African American or Hispanic and as cancer survivors or caregivers. Sessions followed a structured facilitation guide, were audio recorded and transcribed, and were analyzed with a directed content analysis approach.Historical, cultural, and socioeconomic factors often led to delayed cancer care, such as general disuse of healthcare until symptoms were severe due to mistrust and cost of missing work. Obstacles to care included financial barriers, transportation, lack of support groups, and language-appropriate services (for Hispanic groups). Knowledge of cancer and cancer prevention varied widely; we identified a need for better community education about cancer within the urban Hispanic community. Participants had positive experiences and a sense of hope from the cancer care team.African American and Hispanic participants shared many similar perspectives about cancer care. Our results are being used in collaboration with national and regional cancer support organizations to expand their reach in communities of color, but structural and cultural barriers still need to be addressed.

Spiritual well-being levels of formal and informal cancer caregivers in Turkish society and influencing factors: A comparative study

Purpose: This study aimed to compare the spiritualwell-being levels of formal and informal caregiversof cancer patients.Materials and Methods: This study using a crosssectional survey was conducted with formal (n=52)and informal caregivers (n=52), who met theinclusion criteria, were included in the sample. Thedata of the study were collected using web-based andself-reported questionnaires.Results: The scores of spiritual well-being in alldimensions of formal and informal caregivers are ata moderate level. There was a difference between informal and formal caregivers in the belief andpeace sub-dimension scores. Moreover, there was nodifference in total score averages of the spiritualwell-being scale. It was found that there was nostatistically significant difference between themaccording to age groups, gender, marital status,having a child, and income status.Conclusions: This study provides that the careprocess of cancer patients may affect the spiritualwell-being of formal and informal caregivers.Keywords: cancer, formal caregivers, informalcaregivers, spiritual well-being, oncology nursing

A comparison of adult-child and spousal cancer caregivers' participation in medical decisions.

Family caregivers often play a key role in medical decision-making for patients with cancer. Adult-children account for nearly half of caregivers, but often have less experience with serious illness care and decision-making and face unique relational challenges as the patient's child. Yet little research explores the potentially distinctive decision-making, involvement in decisions, and support needs of adult-child caregivers. Analysis of survey data of U.S. cancer caregivers conducted by CancerCare® in 2021. Chi-square tests and multivariable regression models assessed whether adult-child and spousal caregivers differed on the type of medical decisions they participated in (e.g., treatment planning, medication management), who made the decision (e.g., caregiver or joint decision), and the resources that informed decisions (e.g., friends and family, education materials). Adult-children (N = 892) were less likely than spouses (N = 314) to participate in treatment planning (beta = -0.41; 95%CI = -0.81,-0.01), but more likely to be involved in decisions about whether to challenge medical authority (e.g., seeking alternative treatment, second opinion) (beta = 0.50; 95%CI = 0.22,0.78). Compared to spouses, adult-children made joint decisions with patients less often (-13.2-percentage points; 95%CI = -19.64,-6.67) and acted as primary decision-maker more frequently (5.60-percentage points; 95%CI = 0.01,10.43). More adult-children than spouses sought help and information regarding decisions from the oncology team (8.42-percentage points; 95%CI = 1.98,14.87) and friends and family (7.91-percentage points; 95%CI = 1.34,14.48). How cancer caregivers and patients are related to each other shapes caregivers' medical decision-making. Adult-children's and spouses' probabilities of participating in and influencing decisions differed for certain types of decisions while adult-children were more likely to seek information and social support regarding decisions. These findings highlight the importance of the patient's and caregiver's relationship type in medical decision-making, suggesting that decision support programs may be more effective if they tailor programs by relationship type.

A Descriptive Study to Assess the Anxiety Level among Caregivers of Cancer Patients Admitted to the Medical Oncology Department of SKIMS Soura

Introduction: Family caregivers for cancer patients may experience severe strain, worry, and sadness as a result of their work, which may affect their mental and physical health. There is little data on the degree of stress, worry, and depression experienced by cancer caregivers, as well as their involvement in helping patients and other factors that may help or worsen the prognosis. With an emphasis on patient and caregiver-related characteristics, this study examined the prevalence of depression, anxiety, and caregiving stress among cancer family caregivers. Aim: To assess the anxiety level among the caregivers of cancer patients admitted to the medical oncology department at SKIMS Soura, using the anxiety rating scale. Methodology: A quantitative approach and descriptive research design were adopted to assess the anxiety levels among caregivers of cancer patients admitted to the medical oncology department of SKIMS Soura Srinagar Kashmir. The demographic variables were age, gender, educational background, per capita income, marital status, number of children, duration of caregiving, and relation with the patient. The permission for data collection was accorded by Medical Superintendent SKIMS Soura, who guided and forwarded the application to all concerned for needful. The sample size was 30 caregivers selected using the purposive convenience sampling technique. The tool used for the study was the Anxiety Self Rating scale, with 10 items, each with five responses ranging from never (0) to always (4). Results: The study revealed that 7 (23.3%) of the study subjects depicted moderate anxiety, equal number 7 (23.3%) of the study subjects also showed high anxiety, 6 (20%) of the study subjects depicted mild anxiety, and 0 (0.0%) of the study subject showed extreme anxiety. The calculated (Mean ± SD) score of the anxiety level of 30 subjects was (15.4 ± 8.6). The study revealed that there is no significant association between anxiety levels among study subjects with selected demographic variables viz age (p=0.21), educational background (p=0.10), per capita income (p=0.13), marital status (p=0.19), number of children (p=0.10) and duration of caregiving (0.39), relation with the patient (p=0.19) at 0.05 level of significance except for gender (p=0.02). Conclusion: The study concluded that caregivers always suffer from some form or level of anxiety that affects them as an individual and their families as a whole. The caregivers are prone to other mental health issues that can be explored, anxiety being the leading cause and symptom of the same.

Do all roads lead to Rome? An ideal-type study on trajectories of resilience in advanced cancer caregiving.

Studies on resilience in advanced cancer caregiving typically focus on the interplay between resilience-promoting resources and coping strategies that may be associated with resilience. However, no studies have investigated the emergence of trajectories of resilience and distress in individuals confronted with a cancer diagnosis of a loved one. Ideal-type analysis, a method for constructing typologies from qualitative data, was used to identify trajectories involving resilience or the lack thereof based on fifty-four interviews conducted with seventeen partners of patients recently diagnosed with advanced cancer over a period of three years. Six trajectories could be distinguished, three of which involved resilience (rapidly adapting resilience, gradually adapting resilience, and slowly adapting resilience), while the other three trajectories (continuing distress, delayed distress, and frozen disconnection) reflected a less optimal adjustment. These different trajectories seemed to be rooted in the individual characteristics of partners, the behavior of a support network, and interactions between the two. The differentiation between these trajectories in partners of patients diagnosed with cancer not only furthers research on resilience in the face of adversity, but also promises to assist healthcare professionals in optimizing support for this often-neglected group of partners of patients diagnosed with cancer.

More care needed for cancer caregivers.

More care needed for cancer caregivers.

Psychosocial Experiences in an Australian Rural Cancer Service: Mixed-Method Insights into Psychological Distress and Psychosocial Service Barriers

Purpose. To examine psychosocial and well-being concerns throughout the cancer experience, from prediagnosis to survivorship. Whilst most oncology research focuses on patients, the role and experiences of families and caregivers are increasingly recognised as a core component of health service delivery. Moreover, research suggests that geography is an important consideration, with evidence of rural inequities in health service provision and access. Aims. (i) To examine the unique patient and caregiver experiences of rural people in three rural cancer treatment centres in New South Wales (NSW) and (ii) to examine the barriers to rural patients and caregivers accessing psycho-oncological support in NSW. Methods. A convergent parallel mixed-method evaluation of the psychosocial experiences of rural patients and caregivers accessing cancer services through three health services in rural NSW was undertaken (N = 125). Measures of psychological distress as well as quantitative and qualitative barriers data were collected. Results. Approximately, one-third of the participants reported moderate to severe distress. Patients and caregivers reported systemic, intrapersonal, interpersonal, and pandemic-specific barriers in accessing quality psychosocial healthcare. Conclusions. These results suggest that cancer patients and caregivers in rural NSW may experience elevated levels of psychological distress and barriers in accessing psychosocial care. The combination of high psychological need for patients and caregivers with reduced availability of psychosocial support services has substantial implications for psychological wellbeing and service provision. Underdetection of psychosocial need and a lack of support services pose a significant challenge for rural people with cancer and for those who care for them; this must be an urgent priority for quality improvement and equitable healthcare provision.

“We need a little strength as well”: Examining the social context of informal caregivers for Black women with breast cancer

BackgroundInformal caregivers (e.g., partners, other family members, friends) often provide social support to Black women with breast cancer, and caregivers find both benefits and challenges in their caregiving role. MethodsIn this qualitative study, twenty-four caregivers for Black women with breast cancer participated in focus groups and interviews. Participants responded to a brief close-ended questionnaire as well as semi-structured questions about their experiences as cancer caregivers. Demographic information was collected, and relationship satisfaction was measured by the Relationship Assessment Scale-General scale (RAS-G). Focus groups and interviews were recorded, transcribed verbatim, and coded by two independent coders. Using an iterative, discussion-based process, the study team developed and refined themes. ResultsAll caregivers described themselves as Black/African American, and the majority identified as female (79%). The mean RAS-G score was 4.5 (SD = 0.5), indicating high levels of relationship satisfaction. Qualitative themes included using a range of strategies to provide emotional support; shifting between roles; needing time and space; and trying to stay strong. Several female caregivers described how the cumulative experiences of providing care for multiple family members and friends could be draining, as could their own experiences in the patient role. ConclusionsThese findings show a complex, multilayered social context that affects both the patient-caregiver relationship and the health and wellbeing of caregivers. Clinicians providing treatment and support for Black women with breast cancer should be mindful of how the health context of the family may affect patient and caregiver outcomes.