What Male Caregivers of Women With Breast Cancer Want in an Online Intervention: A Qualitative Study.
Ontology highlight
ABSTRACT:
SUBMITTER: Bamgboje-Ayodele A
PROVIDER: S-EPMC7786699 | biostudies-literature | 2020 Dec
REPOSITORIES: biostudies-literature
Publications
What Male Caregivers of Women With Breast Cancer Want in an Online Intervention: A Qualitative Study.
Bamgboje-Ayodele Adeola A Levesque Janelle V JV Gerges Martha M Girgis Afaf A
Journal of patient experience 20200519 6
The diversity in cancer caregiver responsibilities often leaves caregivers feeling ill-prepared for their role. To inform the development of an online caregiver training intervention, we examined the views of men caring for a woman with breast cancer on intervention mode, timing, and content preferences. Thirteen men participated in a qualitative interview. The findings reveal that an online intervention should include educational content and psychological support, be interactive and personalize ...[more]
Similar Datasets
Project description:INTRODUCTION:It is projected that 17?730 women will be diagnosed with breast cancer in Australia in 2017, with 3114 of these predicted to be fatal. Caregiving for a person with cancer can significantly impact caregivers' physical and mental health. Many caregivers feel ill-prepared for this role, especially when care involves complex medical needs accompanied by the psychological challenges experienced following a cancer diagnosis. METHODS AND ANALYSIS:This study employs a convergent, parallel, mixed methods design combining an online survey with an optional interview. Eligible, consenting participants will be invited to participate in a survey to examine (1) participants' unmet needs, (2) challenges experienced throughout the cancer journey, (3) perceived self-efficacy to determine participants' level of confidence in undertaking caregiver tasks, (4) views regarding suitable content to include in a caregiver training intervention, (5) preferred method of intervention delivery (ie, website, smartphone application and/or interactive video), and (6) preferences for the timing of delivery of the intervention content (ie, ability to choose a module, access to the entire content or have a set order in which they receive the information). Caregivers will be eligible to participate if they (1) are male, (2) have previously cared for or are currently caring for a woman with breast cancer, (3) are aged over 18 years, and (4) do not currently suffer from a cognitive impairment or mental health condition (ie, depression, anxiety). Data analysis will include examination of differences in psychological outcomes and needs based on demographic variables, and mediation analysis to explore whether self-efficacy mediates the relationship between challenges, unmet needs and distress. Qualitative data will be analysed using thematic analysis. ETHICS AND DISSEMINATION:The study was reviewed and approved by two human research ethics committees within Australia. We anticipate two to three publications may be developed from the study.
| S-EPMC5855323 | biostudies-literature
Project description:Young breast cancer survivors (aged 50 years and under) and their partners are at an elevated risk for relationship distress and poor psychological adjustment relative to older age couples. Limited availability of time and resources and the distance to travel are major barriers to engaging in evidence-based psychosocial support programs. This paper describes the study protocol of a novel, manualized online intervention called Couplelinks that was developed to improve relationship adjustment and psychological wellbeing of young couples affected by breast cancer. Couplelinks is a custom-designed website offering a professionally facilitated, couple-centered intervention that entails informational, experiential, and interactive components.A total of 80 heterosexual couples from across Canada in which the female partner has been diagnosed with a primary breast cancer will be recruited and randomized to a treatment or waitlist control group. Six dyadic learning modules form the core of the program and will be undertaken on a weekly basis. The manualized online intervention involves psycho-education and experiential exercises to enhance communication, coping ability, mutual empathy, and perspective-taking in relation to cancer. An online facilitator who is a trained mental health professional will guide and support couples throughout the process. Data collection will occur at baseline, at post-treatment or eight weeks into the waiting period, and at the three-month follow-up assessment. Primary outcome measures include the Revised Dyadic Adjustment Survey (RDAS) and Dyadic Coping Inventory (DCI) scores, and secondary outcome measures include the Hospital Anxiety and Depression Survey (HADS) score.Couplelinks is one of the first internet-based psychological interventions to improve the psychosocial adjustment of couples coping with a life-threatening illness such as cancer. If successful, the design of this program as described in this paper makes a valuable contribution to the literature on the delivery of couple-focused psychosocial interventions, both within and outside of oncology.This trial was registered with ClinicalTrials.gov (identifier: NCT01089764 ) on 17 March 2010.
| S-EPMC4336511 | biostudies-literature
Project description:Many of the same sleep problems seen in typically developing (TD) children are frequently experienced by children with epilepsy (CWE). Behavioural sleep interventions (BSIs) are commonly and successfully used to treat these sleep problems in TD children and in some neurodevelopmental disorder populations. Therefore, BSIs should be effective in CWE, however, there are special seizure-related considerations for CWE and their parents which may be salient to consider in any future BSI development for this group. The current study sought to identify, from parents, if there were special considerations for the content and delivery of an online BSI for parents of CWE. Semi-structured interviews were conducted with nine mothers of CWE and thematic analysis was conducted on the interview data. Ten themes were apparent which represented what parents wanted from any online BSI for CWE. Parents wanted (i) other parents' views and real-life experiences to be included, (ii) recognition of how changes over time may influence the appropriateness of using various sleep-management options, (iii) to be presented with a range of sleep management options from which they could select, (iv) personalised information and suggestions for behaviour-change options, (v) help to address child anxiety around sleep, (vi) for the advice and behaviour-change options to be practical, (vii) general educational information about sleep and the relationship between sleep and epilepsy, (viii) for parental worries and concerns to be acknowledged, (ix) to receive help, support, and reassurance around children's sleep; and (x) to include the child in the intervention. It was clear that any online BSI would require specific adaptations and additions (to content and delivery format) to best meet the needs of parents of CWE. It is hoped that having identified what parents want from on online BSI for CWE will allow these factors to be acknowledged in future intervention development, with the intention to optimise parental engagement and intervention effectiveness. Practical suggestions for how these aspects could be integrated into any online BSI are suggested.
| S-EPMC8358317 | biostudies-literature
Project description:ObjectivesOnly 1.2%-11% of all potential study participants participate in cancer studies. Low participation rates can result in bias or in a failure to obtain data saturation. Subject-scientific psychology assumes that reasons for acting are based on individual premises. The objective of this study was to render reproducible individual reasons of female breast cancer patients to participate or not participate in breast cancer studies using a qualitative approach.MethodsProblem-based interviews were conducted with female breast cancer patients. The selection of interview partners continued until theoretical data saturation was achieved.ResultsAs main arguments against participation emotional overload and too many medication side-effects were stated. Improvement of health-related values, long-term protection and comprehensive follow-up exams were stated as arguments for participation. Trust in the attending physician was mentioned as influencing both participation and non-participation.ConclusionsA significant influential factor determining willingness to participate in studies was one's contentment with patient-physician communication. In order to guarantee an adequate patient decision-making process, keeping existing standards for patient briefings is absolutely mandatory.
| S-EPMC3847121 | biostudies-literature
Project description:This study investigated the underlying reasons women desire to be beautiful in South Korean, Chinese, and Japanese cultures by proposing a new concept called human beauty value (HBV). This exploratory qualitative study includes a literature review in related disciplines and the results from ten focus group interviews. Based on the interviews, this study proposes four dimensions of HBV (i.e., superiority, self-development, individuality, and authenticity) and a hierarchical process among the antecedents (i.e., social comparison, social competition, and social norms), the pursuit of HBV, and the consequences (i.e., emotional, attitudinal, and behavioral aspects). Participants from each culture revealed a unique hierarchical process of HBV that reflects both cultural universality and specificity. The results of this study lead to new knowledge about East Asian women's identities and perceptions of beauty. In addition, the proposed concept, HBV, can broaden the academic lens for beauty-related disciplines.
| S-EPMC6075765 | biostudies-literature
Project description:BackgroundNonsuicidal self-injury (NSSI) is common in adolescence and is associated with several adverse outcomes. Despite this, few established treatment options exist. Online treatment seems promising for several conditions; however, knowledge on NSSI is scarce. It is important to explore how online treatment for NSSI is experienced to improve such interventions and learn more about factors that are important in the treatment of adolescents with NSSI.ObjectiveThis study aims to explore the experiences of a novel online treatment for adolescents with NSSI and their caregivers.MethodsA qualitative study using thematic analysis was conducted through semistructured interviews with 9 adolescents and 11 caregivers at treatment termination or at the 6-month follow-up of the online emotion regulation individual therapy for adolescents.ResultsA total of 3 overarching themes were identified. The theme support can come in different shapes showed how support could be attained through both interaction with the therapist as well as through the format itself (such as through the fictional characters in the material and the mobile app). Caregivers found it helpful to have their own online course, and adolescents accepted their involvement. The theme self-responsibility can be empowering as well as distressing showed that self-responsibility was highly appreciated (such as deciding when and how to engage in treatment) but also challenging; it caused occasional distress for some. The theme acquiring new skills and treatment effects showed the advantages and challenges of learning several different emotion regulation skills and that decreased emotion regulation difficulties were important treatment outcomes for adolescents. In addition, several different skills seemed to facilitate emotion regulation, and having access to such skills could hinder NSSI.ConclusionsOnline emotion regulation individual therapy for adolescents seems to offer an accepted way to deliver family interventions for this target group; facilitate skills training with several means of support, including support from both the mobile app and the therapist; contribute to decreasing emotion regulation difficulties and teaching skills that could hinder NSSI; and cause (in some individuals) distress because of the self-responsibility that is inherent to online formats, which needs to be addressed.
| S-EPMC8367103 | biostudies-literature
Project description:INTRODUCTION:As cancer treatments may impact on fertility, a high priority for young patients with breast cancer is access to evidence-based, personalised information for them and their healthcare providers to guide treatment and fertility-related decisions prior to cancer treatment. Current tools to predict fertility outcomes after breast cancer treatments are imprecise and do not offer individualised prediction. To address the gap, we are developing a novel personalised infertility risk prediction tool (FoRECAsT) for premenopausal patients with breast cancer that considers current reproductive status, planned chemotherapy and adjuvant endocrine therapy to determine likely post-treatment infertility. The aim of this study is to explore the feasibility of implementing this FoRECAsT tool into clinical practice by exploring the barriers and facilitators of its use among patients and healthcare providers. METHODS AND ANALYSIS:A cross-sectional exploratory study is being conducted using semistructured in-depth telephone interviews with 15-20 participants each from the following groups: (1) premenopausal patients with breast cancer younger than 40, diagnosed within last 5 years, (2) breast surgeons, (3) breast medical oncologists, (4) breast care nurses (5) fertility specialists and (6) fertility preservation nurses. Patients with breast cancer are being recruited from the joint Breast Service of three affiliated institutions of Victorian Comprehensive Cancer Centre in Melbourne, Australia-Peter MacCallum Cancer Centre, Royal Melbourne Hospital and Royal Women's Hospital, and clinicians are being recruited from across Australia. Interviews are being audio recorded, transcribed verbatim and imported into qualitative data analysis software to facilitate data management and analyses. ETHICS AND DISSEMINATION:The study protocol has been approved by Melbourne Health Human Research Ethics Committee, Australia (HREC number: 2017.163). Confidentiality and privacy are maintained at every stage of the study. Findings will be disseminated through peer-reviewed scholarly and scientific journals, national and international conference presentations, social media, broadcast media, print media, internet and various community/stakeholder engagement activities.
| S-EPMC7044829 | biostudies-literature
Project description:OBJECTIVES:Forecasting survival in cancer is a particularly challenging facet of oncological work and can involve complex interactions with patients and their families. While there is considerable research on patient experiences of being provided with, or becoming aware of, their prognosis, there has been much less emphasis placed on the experiences of caregivers. The aim of this paper was to examine caregivers' experiences of prognosis. DESIGN:This study used semistructured interviews; transcripts were analysed thematically using the framework approach. These data are part of a larger research project focused on experiences of cancer survivorship. SETTING:Recruitment was from two metropolitan hospitals in Queensland, Australia. PARTICIPANTS:50 caregivers of patients living with cancer and receiving treatment at two metropolitan hospitals (32% male, 68% female) participated in this study. RESULTS:Four main themes were identified: (1) caregivers' uncertainty around the meaning and implications of prognosis, (2) caregivers' sense of exclusion in prognostic conversations, (3) the practice of situating prognosis within a context of hope and (4) the precarious balance between realism, optimism and strategic 'ignorance'. CONCLUSIONS:Caregivers are in many respects the unseen third party of prognostic communication. Developing a better understanding of caregivers' perceptions of prognosis, including how this may be challenged, accepted or otherwise, is important in engaging caregivers in the process of communicating prognostic information. Facilitating greater participation by caregivers in prognostic conversations could potentially address evident complexities and even improve the experiences of all stakeholders in cancer care settings.
| S-EPMC7045218 | biostudies-literature
Project description:BackgroundVietnam has experienced a rapid increase in cancer incidence with many cancers (70%) being diagnosed at a late stage. The majority of physical and psychosocial care is provided by caregivers with minimal professional input. Due to limited resources in hospitals and social and cultural norms regarding caregiving in Vietnam, caregivers provide a range of supportive functions for family members diagnosed with cancer.ObjectivesThis study sought to provide empirical evidence on the self-identified unmet needs of caregivers of inpatients in national oncology hospitals in Vietnam.MethodsFocus groups and in-depth interviews were conducted with caregivers (n = 20) and health care providers (n = 22) in national oncology hospitals in Hanoi and Ho Chi Minh City. Data was collaboratively analysed using thematic analysis. Findings were validated through key stakeholder group discussions with both caregivers and healthcare providers across multiple regions in Vietnam.ResultsAnalysis demonstrated that the burden of informal care is high with many caregivers managing patient's severe and complex health needs with minimal support. Caregivers highlighted four main areas of critical need: (i) challenges in providing long term care, particularly in hospital and in-patient settings, such as accessing comfortable facilities, accommodation and finance; (ii) information needs about cancer, treatment, and nutrition; (iii) support for the emotional impact of cancer; and (iv) training about how to provide care to their family members during treatment and recovery phases.ConclusionsCaregivers provide invaluable support in supporting people with a cancer diagnosis, particularly given wider systemic challenges in delivering cancer services in Vietnam. Increasing visibility and formal support is likely to have both a positive impact upon the health and wellbeing of caregivers, as well as for cancer patients under their care. Given its absence, it is critical that comprehensive psychosocial care is developed for caregivers in Vietnam.
| S-EPMC8405114 | biostudies-literature
Project description:Background: Breast cancer is the leading cause of cancer death among Ghanaian women and most women are identified once they develop symptoms. Women then must navigate a complex health care system to get diagnosed and receive orthodox medicine. We describe Ghanaian women's pathways of care from breast cancer-related symptom detection to treatment receipt. Methods: We conducted a qualitative study using an empirical phenomenological approach. We used a purposive sampling technique to recruit 31 women with breast cancer who were receiving treatment at Komfo Anokye Teaching Hospital in Kumasi, Ghana. They participated in semistructured in-depth interviews between November 2019 and March 2020. All interviews were transcribed verbatim and analyzed using a deductive coding approach. Results: Women navigate approximately nine steps from symptom detection to receiving orthodox breast cancer treatment. The breast cancer care pathway is not linear and women frequently move among different management approaches, including alternative therapy (faith healing and traditional herbal healing). All the women detected the symptoms themselves. Some of the women sought orthodox medicine due to information from the media. Conclusions: Alternative therapy providers play a critical role in the breast cancer diagnosis and care pathways in Ghana underscoring the need to formally integrate them into the health care system. Breast cancer awareness programs through the media and educational programs aimed at alternative therapy providers may reduce the time from symptom detection to receipt of orthodox medicine.
| S-EPMC8310750 | biostudies-literature