Interventions are needed to increase low HPV vaccination rates within rural areas in the United States, particularly in the state of Florida, which has the seventh highest number of HPV-related cancers. Florida also ranks low compared to other states in terms of HPV vaccination. Rural-residing parents may benefit from two evidence-based strategies to increase vaccination rates: reminder messages informing and prompting vaccination appointments and mobile clinics to reduce transportation barriers. We sought to identify parental attitudes towards (1) message features that promote rural-residing parents’ receptivity to HPV vaccination; (2) parents’ acceptability of three reminder message modalities (text, postcard, phone); and (3) implementation factors that promote parents’ acceptability of using a mobile clinic for vaccination. We recruited 28 rural-residing parents of 9- to 12-year-old children (unvaccinated for HPV) for focus group and individual interviews and thematically analyzed transcripts. Three features promoted parents’ receptivity to HPV vaccination messages: source credibility, specific information coverage, and personalization (name and birthday wishes). Parents most preferred text messages and identified three factors promoting parents’ mobile clinic use: convenience and feasibility, trustworthiness, and detailed information. The findings indicate rural-residing parents’ acceptability of reminder messages and mobile clinics as well as the importance of trust and feasibility when implementing these evidence-based strategies for rural-residing parents.
Objective: Cancer treatment misinformation (CTM) is pervasive and impacts patient health outcomes. Cancer clinicians play an essential role in addressing CTM. We previously identified four self-reported responses that characterize the communication process clinicians engage in to address CTM. Clinicians 1) work to understand the misinformation; 2) correct the misinformation through education; 3) advise about future online searches; and 4) preserve the clinician-patient relationship. We sought to confirm and expand on the model we developed by observing cancer clinicians' communication while addressing CTM with a standardized patient (SP). Methods: 17 cancer clinicians were audio recorded in a SP encounter, in which a breast cancer SP asked three questions based on CTM. We thematically analyzed transcriptions of the recordings. Results: Clinicians used four responses with associated strategies and skills to address CTM in a standardized clinical encounter, confirming the previously developed model. The four responses were: (1) work to understand the misinformation; (2) correct the misinformation through education; (3) advise about future online searches; and (4) preserve the clinician-patient relationship. This observational approach allowed us to refine strategies within each response and identify communication skills clinicians enact to address CTM. Conclusion: These findings provide a strong foundation for the Misinformation Response Model for cancer clinicians. Future research should examine which components of the model are most effective in improving patient outcomes. Innovation: This is the first study observing clinicians' communication through simulated practice with SPs about CTM.
Background: Spouses are the most common type of cancer caregiver and a primary source of support across the cancer continuum. While studies show that cancer can impact caregivers’ health outcomes, less is known about how blood cancer impacts the spousal relationship. Objective: We sought to examine the impact of blood cancer on the relational connection of married couples from the perspective of the spousal caregiver. Interventions/Methods: We thematically analyzed transcripts of in-depth interviews with caregivers of a spouse diagnosed with a blood cancer. Results: Caregivers (n = 27) identified positive and negative relational impacts related to physical intimacy, emotional intimacy, marital roles, discordance between spouses in coping, and a disrupted relational future. Conclusions: Spousal caregivers must navigate ongoing relational impacts across the care continuum. These relational effects illustrate how cancer jointly impacts diagnosed individuals and their caregiving spouses, altering their relational connection, roles, and future as a couple. While marital bonds can become strengthened after cancer, it also challenges couples and how they typically relate, which may be informed by gendered norms in some marital relationships. Implications for Practice: To provide better support, educational resources and interventions are needed to help couples prepare for and address challenges with intimacy, gender roles, discordant communication and coping preferences, managing discussions about their future, and coping with uncertainty. What Is Foundational: To support individuals living with blood cancer and their caregiving spouses, their needs must be understood from a family-centered or relational perspective to better facilitate psychosocial adjustment during and after cancer treatment.
OBJECTIVES:This study investigated the challenges and support needs of adults aged 75 and older during and after treatment for a blood cancer to aid targeted supportive resource development.METHODS:Adults aged 75 and older with a blood cancer participated in in-depth, semi-structured interviews about challenges and unmet support needs. Participants recruited through The Leukemia & Lymphoma Society were (1) in treatment or previously in treatment for a blood cancer at age 75 or older and (2) living in the United States or its territories. A thematic analysis was conducted with findings compared between 2 groups: (1) chronic -living with a chronic blood cancer; (2) acute -living with an acute blood cancer or both an acute and chronic blood cancer.RESULTS:Participants (n = 50) ranged from 75 to 91 years old. Both groups described similar experiences and identified 5 challenges and support needs: (1) socioemotional impact, (2) activities of daily living and instrumental activities of daily living (ADLs/iADLs), (3) uncertainty management, (4) treatment-related stressors, and (5) COVID-19-related strain. Properties for these themes illustrate challenges and support needs, with some differences between groups. For instance, those living with a chronic blood cancer highlighted financial strain with treatment-related stressors, while those with an acute blood cancer focused more on iADLs.SIGNIFICANCE OF RESULTS:Findings inform an agenda for targeted resource development for older adults with a blood cancer nearing the end of the life span. Results demonstrate the need for supportive services and family communication interventions to help patients manage iADLs and navigate socioemotional needs and challenges.
Background/Objectives: The integration of pharmacogenetic (PGx) testing into primary care has not been widely implemented, despite its benefits for patients and providers. PGx testing could also reduce health disparities as patients with lower healthcare access are prescribed higher proportions of medications with PGx guidelines. Little is known about the preferences of patients who have experienced PGx testing to inform implementation across the care process. This qualitative study aimed to refine implementation by capturing patient preferences on (1) testing and prescription timing, (2) patient–clinician discussion of results during post-test counseling, and (3) usability of a card during results dissemination. Methods: Interviews were conducted with 25 primary care patients from clinics primarily serving medically underserved populations. Interview transcripts were thematically analyzed using a constant comparative approach. Results: While patients supported both reactive and pre-emptive testing, they valued pre-emptive PGx testing because it is proactive for future health needs, expedites treatment, and is convenient. Patients’ preferences for receiving prescriptions depended on several factors: having immediate access to needed medications, avoiding experiencing medication side effects and interactions, avoiding taking ineffective medications, and avoiding inconveniences. Patients identified three issues critical to patient–clinician interactions when receiving testing results: information specific to medications, clarification and further information about their results, and enhanced clinician accessibility related to the results. Lastly, they liked that the results card could facilitate discussions with clinicians and was informative and convenient but said it lacked clarity. Conclusions: These findings should inform implementation strategies for integrating PGx testing in primary care for underserved patients.
PurposeSurvivorship care often refers to continued healthcare after cancer treatment. Jacobsen and colleagues advocated to expand this to include patients on extended treatments and maintenance/prophylactic therapies, recognizing the care continuum as more complex. Transitions of care for individuals diagnosed with a blood cancer can be complicated. We sought to better understand blood cancer caregivers' experiences as their diagnosed family member encountered "survivorship transitions" across the continuum.MethodsWe conducted semi-structured interviews with adults caring for a parent or a child with a blood cancer. Caregivers were segmented into survivorship groups based on two transitional contexts: (1) when patients transitioned to a new line of therapy (active treatment or maintenance therapy); (2) when patients ended treatment. We conducted a thematic analysis and triangulated findings to compare transitional experiences.ResultsCaregivers in both groups reported experiencing a "new normal," which included personal, relational, and environmental adjustments. Caregivers in the treatment transitions group (n = 23) also described uncertainty challenges (e.g., losing their "safety net") and disrupted expectations (e.g., feeling "caught off guard" by challenges). Whereas caregivers in the end-of-treatment transitions group (n = 15) described relief coupled with worry (e.g., feeling hopeful yet worried).ConclusionsSurvivorship transitions for caregivers are riddled with challenges that include difficult readjustments, uncertainty/worry, and unmet expectations. While there seems to be a cohesive experience of "survivorship transitions," each transition group revealed nuanced distinctions.Implications for Cancer SurvivorsTailored supportive resources are needed for caregivers throughout survivorship transitions.
For many diagnosed mothers and their daughters, breast cancer is a shared experience. However, they struggle to talk about cancer. This is particularly true when the daughter is in adolescence or young adulthood, as they tend to be more avoidant, which is associated with poorer biopsychosocial outcomes. When daughters are their mother's caregivers, daughters' burden and distress are heightened. Young adult caregiving daughters (YACDs) are the second most common family caregiver and encounter more distress and burden than other caregiver types. Yet, YACDs and their diagnosed mothers receive no guidance on how to talk about cancer. Thirty-nine mother/YACD pairs participated in an online survey to identify challenging topics and strategies for talking about cancer, and to explore associations between openness/avoidance and psychosocial outcomes. YACDs and mothers reported the same challenging topics (death, treatment-related issues, negative emotions, relational challenges, YACDs' disease risk) but differed on why they avoided the topic. YACDs and mothers identified the same helpful approaches to navigate conversations (openness, staying positive, third-party involvement, avoidance). Avoidance was correlated with more distress whereas openness was correlated with better psychosocial outcomes. These results provide a psychosocial map for a mother-YACD communication skills intervention, which is key to promoting healthy outcomes.
Adult-child caregivers of an aging parent living with a blood cancer describe struggling to communicate with one another and within the family system. They may avoid critical care conversations, which may impede care and their ability to receive social support. We examined what approaches adult-child caregivers of a parent diagnosed with a blood cancer use to enhance their family communication, the topics they find most challenging to discuss, and the roles of openness and support. We used qualitative and quantitative approaches to analyze data from a larger online survey study. In partnership with the Leukemia & Lymphoma Society, we recruited 121 adult-child caregivers. Responses to one open-ended item were analyzed to capture strategies used to enhance communication with their parent and family. They reported utilizing digital communication modalities, prioritizing frequent communication, engaging in openness, establishing boundaries, kinkeeping, and enacting support. Within the quantitative data, we further explored two of these themes (openness and support) and their relationships to other variables using t-tests and regression analysis. Adult-child caregivers and diagnosed parents avoid talking about mortality and negative feelings. Openness in the family about cancer was linked to caregivers' perceptions of receiving social support. Findings demonstrate that cultivating openness between midlife adult children and diagnosed parents may enhance opportunities to receive support.
PURPOSE:Clinicians regularly face conversations about information that patients have found online. Given the prevalence of misinformation, these conversations can include cancer-related misinformation, which is often harmful. Clinicians are in a key position as trusted sources of information to educate patients. However, there is no research on clinician-patient conversations about cancer-related misinformation. As a first step, the objective of this study was to describe how cancer clinicians report communicating with patients about online cancer misinformation.METHODS:We used convenience and snowball sampling to contact 59 cancer clinicians by e-mail. Contacted clinicians predominately worked at academic centers across the United States. Clinicians who agreed participated in semistructured interviews about communication in health care. For this study, we focused specifically on clinicians' experiences discussing online cancer-related misinformation with patients. We conducted a thematic analysis using a constant comparative approach to identify how clinicians address misinformation during clinical visits.RESULTS:Twenty-one cancer clinicians participated in the study. Nineteen were physicians, one was a physician assistant, and one was a nurse practitioner. The majority (62%) were female. We identified four themes that describe how cancer clinicians address misinformation: (1) work to understand the misinformation; (2) correct misinformation through education; (3) advise about future online searches, and (4) preserve the clinician-patient relationship.CONCLUSION:Our study identified four strategies that clinicians use to address online cancer-related misinformation with their patients. These findings provide a foundation for future research, allowing us to test these strategies in larger samples to examine their effectiveness.
Cancer patients and their caregivers frequently go online to seek out cancer information. Despite many credible websites about cancer treatment options, there is also an increasing prevalence of misinformation. Misinformation, compounded by low e-health literacy, can impact the ability of the clinician and patient to engage in shared decision-making effectively. To improve communication, we must understand how these conversations take place. Thus, this study aims to describe how oncology clinicians respond to patients about online cancer misinformation. Participants were cancer clinicians who were directly involved in discussions related to cancer care. Recruitment emails, participant referrals, and professional network contacts were utilized for study enrollment. A total of 59 recruitment emails were sent between July and December 2020. All interviews were conducted using a semi-structured interview guide covering three different communication topics in cancer care, with questions about cancer misinformation constituting one of three sections. All interviews were audio-recorded and professionally transcribed. We analyzed the interview transcripts using an inductive, thematic approach. All authors validated the final codes. We interviewed 21 clinicians. Analyses revealed five emergent themes that represent the Methods utilized to respond to patients about misinformation as listed: 1) Work to understand the misinformation (e.g., ask about the source of the information); 2) Correct misinformation (e.g., emphasize need for scientific base); 3) Refocus the discussion on patient’s cancer (e.g., explain relevancy to the patient); 4) Counsel and advise for future online searches (e.g., guide to reputable sources); and 5) Preserve the doctor-patient relationship (e.g., don't bash or discourage patient). The first four strategies may provide a valuable sequence for responding to cancer treatment misinformation, while the fifth strategy of preserving the relationship underlies all the other strategies. This initial description of strategies used to discuss cancer treatment misinformation provides a potential model for future work.
The transition from treatment into survivorship care is a critical juncture for cancer patients and more research is needed to understand this period of adjustment for family caregivers fully. Furthermore, there has been very little focus on sequential transitions that occur in some cancers, like blood cancers, as patients and caregivers move first from primary treatment to maintenance treatment and then from maintenance treatment to survivorship care. This study aimed to understand caregivers' experiences as their family member with blood cancer transitions between treatments and into survivorship care. We conducted in-depth, semi-structured interviews with 39 family caregivers of an individual living with a blood cancer. Interview transcripts were thematically analyzed using a constant comparative approach to better characterize transitional experiences of care, with a focus on understanding supportive needs during transitions. Data were segmented based on caregivers' experience with two distinct treatment transitions: 1) primary sequential treatment and/or maintenance therapy (n = 25) and 2) end of treatment/survivorship care (n = 14). Caregivers in both groups experienced a "new normal" that included personal, relational, and environmental adjustments. Caregivers in the sequential/maintenance group also described uncertainty challenges (e.g., "waiting for the other shoe to drop") and disrupted expectations (e.g., feeling little or no relief), whereas those in the end-of-treatment group described relief coupled with worry (often persistent). Caregivers' experiences differed based on the type of care transition (i.e., transitioning from sequential to maintenance treatments versus starting survivorship care). Although some experiences and support needs (e.g., managing uncertainty) persisted across types of care, these Findings: highlight the need for tailored care based on the type of care transition. Clinicians should use these transitions to initiate conversations with caregivers about their evolving support needs.
Objectives The study examined the diagnosis experience of midlife family caregivers of a patient with a blood cancer, exploring similarities and differences between parent caregivers and adult-child caregivers. Methods Participants were between 30 and 65 years old and were family caregivers of a living patient with acute myeloid leukemia, acute lymphoblastic leukemia, or lymphoma. We conducted semi-structured interviews with parent caregivers (n = 20) and adult-child caregivers (n = 19) and a thematic analysis of the interview data. Results Both types of caregivers report the patient experiencing (1) mis- and missed diagnosis (facing delayed diagnosis or treatment and having symptoms dismissed or overlooked) and (2) emotional distress (being in shock and survival mode, struggling with uncertainty, and confronting mortality). Adult-child caregivers also experienced relational shifts in assuming control of their parent's care, sometimes despite geographic distance, and struggled to distribute the care burden among family members. Significance of results Differences between the caregivers' experiences emerged based on the relational role and the patient's place in the lifespan. Findings can be used to inform the development of support resources to address the needs of each group.
Purpose: Pediatric blood cancer diagnosis is a stressful experience for families as it can involve urgent treatment that can be life-threatening and require extended hospital stays. Little is known about the experiences of parent caregivers of children with a blood cancer during the diagnosis period and how families' needs may differ in light of the patient's developmental phase in the life span. Methods: We conducted semistructured in-depth interviews with 20 parent caregivers (aged 30-65) of children diagnosed with a blood cancer, recruited through The Leukemia & Lymphoma Society's (LLS) constituency. Interview transcripts were thematically analyzed using the constant comparative method. To elucidate similarities and differences in caregiving experiences, findings were compared across parents with children diagnosed in three developmental periods: infancy-early childhood, age 0-6 (n = 9); pre-early adolescence, aged 9-14 (n = 5); and late adolescence-emerging adulthood, aged 16-27 (n = 6). Results: Across all developmental periods, parents described three similar caregiving experiences during the diagnosis period: being persistent to obtain a diagnosis, attending to the child's quality of life challenges, and attending to their other children's well-being. Among caregivers of younger children, persistence was motivated by parental intuition and challenges included coping with traumatic physical and psychological impacts of treatment procedures. For caregivers of late adolescents-early adults, persistence was motivated by the child's self-assessment and fertility-related concerns emerged. Conclusion: Results illustrate core issues for parent blood cancer caregivers and highlight ways to tailor supportive resources that facilitate good communication practices and shared decision-making to children's distinct developmental needs.
Background In the United States, human papillomavirus ( HPV) vaccination rates remain low. The President’s Cancer Panel suggests that effective messaging about the HPV vaccination focus on the vaccine’s safety, efficacy, ability to prevent cancer, and recommendation at ages 11- to 12-years. We aimed to develop messages about HPV vaccine that include the President Cancer Panel’s suggestions and were acceptable to caregivers of adolescents. Methods From August to October 2020, we conducted one-hour, Zoom videoconference focus groups with caregivers who lived in Florida, had an 11- to 12-year-old child, and had not had any of their children receive the HPV vaccine. Focus group moderators asked caregivers to react to three videos of clinician (i.e., MD, DO, APRN, PA) recommendations and three text message reminders. Thematic analysis was conducted using the constant comparative method and led by one author with qualitative analysis expertise. Two additional authors validated findings. Results Caregivers ( n = 25 in six groups) were primarily non-Hispanic white (84%) and educated (64% had at least an Associate’s degree). Approximately a third of caregivers had delayed (44%) or decided against a vaccine for their child (36%). Caregivers described six preferred message approaches: recognize caregivers’ autonomy, balanced benefits and risks, trustworthy sources, increased feasibility of appointment scheduling, information prior to decision point, and preferred personalized information. Caregivers expressed a desire to have the follow-up doses mentioned in the introduction. Conclusions HPV vaccine messages, whether delivered by a clinician or via text message, will be more acceptable to caregivers if they approach HPV vaccination as the caregivers’ decision, and include information from trusted sources to help caregivers make an informed choice.
Parental alienation (PA), typically identified in divorced families, is a form of nonvoluntary family distancing wherein one parent employs maladaptive communication patterns to sever the relationship between the other parent and child(ren). This study examines the reconnection phase of PA from the alienated parent perspective, elucidating tensions salient to PA as well as enacted communication management strategies. Alienated parents who experienced PA and reinitiated contact were recruited to participate in retrospective interviews. Four dialectical tensions and corresponding communication strategies were identified. Data provide a more holistic understanding of PA reconnection experiences. Findings are vital to building supportive resources for PA.
Research indicates that parent-child communication about sexual and reproductive health can improve safe sex practices among adolescents, but barriers to such communication exist. In this systematic review, we thematically synthesised qualitative data in 37 articles on parent-child sexual and reproductive health communication barriers conducted on five continents and in 19 different countries. We identified both barriers to communication and barriers to effective communication reported by parents and/or children. Internationally, both parents and children experienced personal barriers, such as embarrassment, discomfort and fear; communal barriers, such as outside sources and responsibility shift; and cultural barriers, such as sex as taboo, focus on abstinence and age/generational differences. Implications for future family communication interventions and measurement that could help parents navigate this form of sexual education are discussed.
Background: Mothers and daughters struggle to talk about breast cancer risk. Even less attention is paid to environmental determinants of cancer. Third-party online approaches can be helpful navigating these conversations. The aim of this study was to obtain feedback from mothers exposed to a social media intervention (“mommy bloggers”) and identify their preferences for message-design approaches that could help them talk to their daughter(s) about environmental breast cancer risk. Methods: We conducted semi-structured interviews with 50 mothers. A thematic analysis was conducted using the constant comparative method. Results: Mothers identified four approaches to message design that could help facilitate mother–daughter communication about environmental breast cancer risk. These included two action-oriented approaches that centered on getting the conversation started and keeping the conversation going and two approaches based on lifespan factors to promote daughters’ engagement by using age-appropriate language and visuals and focusing on developmentally specific lifestyle behaviors. Mothers also provided recommended strategies within each approach. Conclusions: Mothers identified various approaches interventionists can utilize to overcome barriers to talking to daughters about environmental breast cancer risk. To promote mother–daughter communication, the messages should be action-oriented to facilitate interaction, but also developed with lifespan and developmental considerations in mind to engage daughters.