Exploring Experiences of Survivors and Caregivers Regarding Lung Cancer Diagnosis, Treatment, and Survivorship.
Ontology highlight
ABSTRACT: Background
Advances in screening and treatment approaches alongside changing population demographics have the potential to influence the experience of living with lung cancer. There is potential for improved outcomes and quality of life for those diagnosed with the disease.Objectives
This exploratory study was undertaken to gain insight regarding the current experiences of individuals diagnosed with lung cancer and their family caregivers given the evolving changes in lung cancer screening and treatment.Method
A qualitative descriptive design was utilized and in-depth interviews conducted with 8 survivor and 4 family caregivers. Interviews were subjected to a conventional content analysis.Results
Participants identified challenges related to being diagnosed in a timely manner, being told the diagnosis with compassion, coping with multiple symptoms during treatment, and regaining a new normal following treatment. Dealing with late effects of treatment (ie, fatigue, shortness of breath, neuropathy) was frustrating when individuals were not aware the effects would emerge or had not had relevant self-management instructions.Conclusions
Lung cancer survivors constitute an emerging cadre of survivors. Attention is needed to their preparation for, and coping with, the survivorship transition.
SUBMITTER: Fitch MI
PROVIDER: S-EPMC7427360 | biostudies-literature |
REPOSITORIES: biostudies-literature
Similar Datasets
Project description:Amongst Indigenous Australians, "cancer" has negative connotations that detrimentally impact upon access to cancer care services. Barriers to accessing cancer services amongst Indigenous Australians are widely reported. In contrast, factors that facilitate this cohort to successfully navigate cancer care services ("enablers") are scarcely reported in the literature. Through qualitative interviews, this article examines factors that assist Indigenous Australians to have positive cancer experiences. Semi-structured interviews were conducted with twelve adult Indigenous oncology patients recruited from a tertiary hospital in Queensland, Australia during 2012-2014. Data generated from the interviews were independently reviewed by two researchers via inductive thematic analytical processes. Discussions followed by consensus on the major categories allowed conclusions to be drawn on potential enablers. Two major categories of enablers were identified by the researchers: resilience and communication. Individual's intrinsic strength, their coping strategies, and receipt of support improved participant's resilience and consequently supported a positive experience. Communication methods and an effective patient-provider relationship facilitated positive experiences for participants. Despite potential barriers to access of care for Indigenous cancer patients, participants in the study demonstrated that it was still possible to focus on the positive aspects of their cancer experiences. Many participants explained how cancer changed their outlook on life, often for the better, with many feeling empowered as they progressed through their cancer diagnosis and treatment processes.
| S-EPMC5800234 | biostudies-literature
Project description:ObjectivesContent elucidation for patient-reported outcomes (PROs) in paediatric cancer survivorship is understudied. We aimed to compare differences in the contents of five PRO domains that are important to paediatric cancer survivorship through semistructured interviews with paediatric cancer survivors and caregivers, and identified new concepts that were not covered in the item banks of the Patient-Reported Outcomes Measurement Information System (PROMIS).DesignSemistructured interviews to collect qualitative PRO data from survivors and caregivers.SettingA survivorship care clinic of a comprehensive cancer centre in the USA.ParticipantsThe study included 51 survivors (<18 years old) and 35 caregivers who completed interviews between August and December 2016. Content experts coded the transcribed interviews into 'meaningful concepts' per PROMIS item concepts and identified new concepts per a consensus. Frequencies of meaningful concepts used by survivors and caregivers were compared by Wilcoxon rank-sum test.ResultsFor pain and meaning and purpose, 'Hurt a lot' and 'Purpose in life' were top concepts for survivors and caregivers, respectively. For fatigue and psychological stress, 'Needed to sleep during the day'/'Trouble doing schoolwork' and 'Felt worried' were top concepts for survivors, and 'Felt tired' and 'Felt distress'/'Felt stressed' for caregivers. Survivors reported more physically relevant contents (eg, 'Hard to do sport/exercise'; 0.78 vs 0.23, p=0.007) for pain, fatigue and stress, whereas caregivers used more emotionally relevant concepts (eg, 'Too tired to enjoy things I like to do'; 0.31 vs 0.05, p=0.025). Both groups reported positive thoughts for meaning and purpose (eg, 'Have goals for myself'). One (psychological stress, meaning and purpose) to eleven (fatigue) new concepts were generated.ConclusionsImportant PRO contents in the form of meaningful concepts raised by survivors and caregivers were different and new concepts emerged. PRO measures are warranted to include survivorship-specific items by accounting for the child's and the caregiver's viewpoints.
| S-EPMC7239535 | biostudies-literature
Project description:The optimal delivery of survivorship care, particularly within primary care, remains poorly understood. We established the Johns Hopkins Primary Care for Cancer Survivors (PCCS) clinic in 2015 to address care challenges unique to cancer survivors. To better understand the care from the PCCS clinic, we interviewed patients about their perception of care delivery, survivorship care, and care coordination. We conducted semi-structured interviews with adult survivors of any cancer type seen in the PCCS clinic. A priori and in vivo coding of verbatim transcripts was part of the thematic analysis. Seventeen cancer survivors were interviewed (ages 37-78). Themes that emerged were (1) optimal care and (2) the PCCS experience. Subthemes respectively included the ideal role of the primary care provider (1), telehealth/COVID-19 challenges and opportunities (1), patient-derived value from the PCCS clinic (2), and improving the PCCS model (2). Overall, PCCS patients expected and experienced high-quality, comprehensive primary care by providers with cancer survivorship expertise. Patients reported telehealth benefits and challenges for survivorship care during the COVID-19 pandemic. PCCS patients perceived receiving high-quality primary care and valued being seen in a primary care-based survivorship clinic. The PCCS clinic can serve as a model of primary care-based cancer survivorship. Ideal primary care provider roles and care coordination are important factors for high-quality survivorship care and can be provided by a specialized cancer survivorship clinic in primary care.
| S-EPMC8756404 | biostudies-literature
Project description:BackgroundBreast cancer is the most common form of cancer among American women, accounting for 23% of all cancer survivors nationally. Yet, the availability of adequate resources and tools for supporting breast cancer survivors has not kept up with the rapid advancement in treatment options, resulting in unmet supportive care needs, particularly among low-income and minority populations. This study explores an alternative means of delivering breast cancer survivorship care plans (SCPs), with the aim of improving survivor morbidity, patient knowledge, and self-management of treatment-related symptoms, as well as addressing inconsistencies in follow-up care visits.ObjectiveThe overall goal of this study is to improve the uptake of SCP recommendations via an educational intervention for breast cancer survivors, to improve treatment-related morbidity, patient knowledge, self-management, and adherence to follow-up visits. The specific aims of the study are to (1) evaluate the feasibility of the online SCP, and (2) assess the impact of the online SCP on survivorship outcomes.MethodsWe will enroll 50 breast cancer survivors who have completed initial breast cancer treatment into a 2-armed, randomized, waitlist-controlled pilot trial, and collect data at baseline and 6 months. For the first aim, we will use mixed methods, including surveys and personal interviews among the intervention group, to determine the feasibility of providing an online, interactive SCP (called ACESO) based on the survivors' online user experience and their short-term adoption. For the secondary aim, we will compare the 2 groups to assess the primary outcomes of survivor knowledge, self-efficacy for self-management, perceived peer support, and adherence to SCP-recommended posttreatment follow-up visits to oncology and primary care; and the secondary outcomes of treatment-related morbidity (body weight, fatigue, depression, anxiety, sexual function, distress, and sleep quality). We assess these outcomes by using measurements from validated instruments with robust psychometric properties.ResultsWe have developed and refined the online breast cancer survivorship plan, ACESO, with consultation from breast cancer oncologists, nurses, and survivors. Approval for the study protocol has been obtained from the Institutional Review Board. An advisory board has also been established to provide oversight and recommendations on the conduct of the study. The study will be completed over a period of 2 years.ConclusionsThe results of this pilot study will inform the feasibility and design of a larger-scale pragmatic trial to evaluate the impact of an online breast cancer SCP on treatment-related morbidity and self-efficacy for self-management.International registered report identifier (irrid)PRR1-10.2196/23414.
| S-EPMC7748955 | biostudies-literature
Project description:PurposeThe purpose of this study was to characterize primary end-of-treatment challenges in head and neck cancer (HNC) to drive the development of a survivorship needs assessment planning (SNAP) tool and evaluate its acceptability and feasibility.MethodsUsing qualitative methods (focus groups, interviews), we identified physical, emotional, and social post-treatment challenges from the perspectives of survivors (N = 17), caregivers (N = 14), and healthcare providers (N = 14) and pretested the SNAP tool. After Advisory Board ratings and consensus, the tool was finalized.ResultsSurvivors, caregivers and clinicians consistently highlighted the importance of assessing symptoms and functional abilities (e.g., dry mouth, speech/swallowing difficulties, weight loss), health behaviors (e.g., smoking, alcohol), emotional concerns (e.g., depression, isolation, nutritional distress), and social challenges (e.g., support, finances). Caregivers were overwhelmed and intensely focused on survivors' nutrition and trach/feeding tube care while clinicians emphasized financial and access concerns. Most participants were enthusiastic about the tool and directed a flexible care plan design due to variability in dyad needs. Over 75% reported high comfort using and navigating questions on a tablet and were in strong agreement that the care plan would help families practically and emotionally. Coordination of survivorship visits with follow-up care was critical to address travel and time barriers. While survivors and clinicians recommended waiting 1-6 months after treatment, caregivers preferred earlier survivorship visits.ConclusionsResults pinpointed optimal end-of-treatment domains for routine assessment and support the feasibility of implementing a SNAP tool in the clinic.Implications for cancer survivorsCapitalizing on technology to direct HNC survivorship care is promising.
| S-EPMC5671886 | biostudies-literature
Project description:PurposeAs the number of breast cancer survivors increases, a durable model of comprehensive survivor care is needed, incorporating providers and/or visit types both within and outside of oncology. The objective of this study was to explore survivors' comfort with different clinician types or with a telephone/Internet-based virtual visit as components of survivorship care.MethodsBreast cancer survivors participating in a general survivorship survey completed an additional breast cancer-specific questionnaire evaluating the self-perceived impact of follow-up visits to various clinician types, or follow-up by a virtual visit, on survival, worrying, and stress related to cancer.ResultsA total of 218 breast cancer survivors completed the questionnaire. Most favored medical oncologist follow-up visits over those with primary care physicians (PCPs) or nurse practitioners (NPs) in terms of reduced worrying about cancer (odds ratio [OR], 2.21; P < .001), reduced stress around the visit (OR, 1.40; P = .002), and improved effect on cancer survival (OR, 2.38; P < .001). However, the majority also displayed substantial comfort with both PCPs and NPs in the same domains. Patients rated a virtual visit as having a less favorable impact on cancer survival and cancer-related worrying compared with in-person visits with clinicians.ConclusionBreast cancer survivors are comfortable with both PCPs and NPs providing follow-up care, although they indicate a preference for medical oncologists. Given patients' negative impressions of a virtual visit, increased familiarity with and research investigating this emerging concept are needed. The NP-led survivorship clinic model, with increased guidance for PCPs, offers a promising route for improving quality of and satisfaction with survivor care.
| S-EPMC4874208 | biostudies-literature
Project description:PURPOSE:Reproductive-aged breast cancer survivors (BCS) who have completed initial cancer treatment frequently want to know about their future fertility potential. The purpose of this qualitative study was to assess if the fertility-related content presented in the survivorship care plan prototype met the informational needs of post-treatment BCS and to provide an opportunity for the target audience to review and react to the proposed content and design. METHODS:We conducted and analyzed transcripts from seven focus groups with BCS to evaluate their reactions to the survivorship care plan prototype. We independently coded transcripts for consistent themes and sub-themes and used a consensus-building approach to agree on interpretation of results. RESULTS:We identified five themes that describe the post-treatment BCS' responses to the prototype survivorship care plan in the context of their informational needs and experiences: (1) the prototype's fertility-related information is relevant; (2) desire for clinical parameters to help survivors understand their infertility risk; (3) fertility-related information is important throughout survivorship; (4) evidence-based content from a neutral source is trustworthy; and (5) the recommendation to see a fertility specialist is helpful, but cost is a barrier. CONCLUSIONS:BCS have concerns and needs related to their fertility potential after initial breast cancer treatment. The evidence-based information offered in our prototype survivorship care plan was acceptable to BCS and has significant potential to address these needs. Additional primary data that identify post-cancer treatment indicators of fertility would advance this effort.
| S-EPMC7413066 | biostudies-literature
Project description:BackgroundThe prevention and treatment of chronic pain problems in breast cancer follow-up care require an adequate response from healthcare providers. Generally, this involves the uptake of evidence-based principles regarding pain management in everyday practice. However, despite the extensive literature on effective pain interventions, systematic and coordinated follow-up care is lacking for breast cancer survivors with pain problems in Flanders, Belgium.ObjectiveThis study aimed to gather insight into healthcare providers' perceptions of pain prevention and treatment in breast cancer follow-up care, particularly with attention to the multilevel influences on pain follow-up.MethodsWe conducted four online focus groups with twenty-two healthcare providers from different disciplines such as oncologists, pharmacists, nurses, physiotherapists, and psychologists. Data analysis was guided by the Qualitative Analysis Guide of Leuven. This guide is inspired by the constant comparison method, based on Grounded Theory.ResultsThe identified influencing factors were thematically grouped into four levels: at the level of the individual healthcare provider, in interaction with the patient, in interaction with colleagues, and at the context level. At each level, we distinguished factors related to healthcare providers' perceptions such as awareness, knowledge, attitudes, beliefs, experiences, and intentions. For example, because of a lack of knowledge and certain beliefs among healthcare providers, referral to other disciplines often does not happen in the context of pain.ConclusionThis study points out the need to explore the prevention and treatment of chronic pain after breast cancer from a multidimensional point of view. This involves not only the characteristics of individual healthcare providers but is also inherently interactional and system-like in nature. This analysis provides opportunities for the development of interventions that target the influencing factors of prevention and treatment of chronic pain in breast cancer survivors.
| S-EPMC9409579 | biostudies-literature
Project description:The study determined factors associated with patient-reported receipt of survivorship care plans and/or treatment summaries (SCP/TS). Two hundred forty female young adult cancer survivors ages 18-44 completed a web-based survey that included self-report on receiving SCP/TS. Mean age was 32.8 (standard deviation 5.8) years; 20% were diagnosed with cancer at age <21. Only 47% reported receipt of SCP/TS. Age <21 at diagnosis (odds ratio [OR] 2.0, 95% confidence interval [CI] 1.0-3.9), chemotherapy (OR 2.3, 95% CI 1.2-4.6), central nervous system radiation (OR 2.5, 95% CI 1.1-5.6), and bone marrow transplantation (OR 7.2, 95% CI 1.5-33.3) were significantly associated with higher odds of SCP/TS receipt. Improved integration of TS and SCP into cancer survivorship care is needed.
| S-EPMC5725635 | biostudies-literature
Project description: Not available
| S-EPMC6483678 | biostudies-literature