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1.
BMC Public Health ; 22(1): 2413, 2022 12 22.
Artículo en Inglés | MEDLINE | ID: mdl-36550434

RESUMEN

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.


Asunto(s)
Infecciones por Papillomavirus , Vacunas contra Papillomavirus , Adolescente , Humanos , Niño , Estados Unidos , Cuidadores , Grupos Focales , Florida , Infecciones por Papillomavirus/prevención & control , Vacunación , Conocimientos, Actitudes y Práctica en Salud
2.
Palliat Support Care ; 20(1): 22-29, 2022 02.
Artículo en Inglés | MEDLINE | ID: mdl-33890563

RESUMEN

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.


Asunto(s)
Cuidadores , Neoplasias , Adulto , Hijos Adultos , Anciano , Cuidadores/psicología , Familia/psicología , Humanos , Longevidad , Persona de Mediana Edad , Incertidumbre
3.
Support Care Cancer ; 29(6): 3069-3076, 2021 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-33051829

RESUMEN

PURPOSE: Research on the impact of family cancer caregiving is primarily dyadic in focus. How caregiving affects the larger family system is less understood, yet knowing this is vital to developing supportive resources for caregivers, patients, and their families. To better understand how blood cancer caregiving impacts the family system, we explored the experiences of adult child caregivers of diagnosed parents and parent caregivers of diagnosed children. METHODS: We conducted semi-structured interviews with 39 midlife parent and adult child caregivers of patients with leukemia or lymphoma. Using a family systems theory lens, we conducted a thematic analysis using the constant comparative method to identify how caregiving impacts the larger family system. RESULTS: Caregivers ranged from age 30 to 64 (M = 43). They described four ways that caregiving impacted themselves and the larger family system: (1) disruption of home life, (2) emotional (dis)connection, (3) juggling competing roles, and (4) developing resiliency and intimacy. Perspectives within each category differed based on their relational role to the patient or in the broader family. CONCLUSIONS: Themes identify ways to provide support to both caregiver types. Support care resources could help families navigate gains and losses impacting the family system after a blood cancer diagnosis. Both caregiver types described experiencing (and/or their family experiencing) a loss in relational connection, feeling alone, and members distancing themselves. Both caregiver types also described gains in family functioning, like strengthened bonds and togetherness. Findings validate the need for family-centered support with key areas to address for healthy family functioning.


Asunto(s)
Cuidadores/psicología , Familia/psicología , Neoplasias Hematológicas/psicología , Adulto , Femenino , Humanos , Masculino , Persona de Mediana Edad
4.
JCO Oncol Pract ; 19(3): e389-e396, 2023 03.
Artículo en Inglés | MEDLINE | ID: mdl-36626708

RESUMEN

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.


Asunto(s)
Neoplasias , Médicos , Humanos , Masculino , Femenino , Estados Unidos , Comunicación , Atención a la Salud , Investigación Cualitativa
5.
J Adolesc Young Adult Oncol ; 11(1): 61-67, 2022 02.
Artículo en Inglés | MEDLINE | ID: mdl-34647791

RESUMEN

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.


Asunto(s)
Neoplasias , Calidad de Vida , Adolescente , Adulto , Anciano , Cuidadores/psicología , Niño , Preescolar , Humanos , Lactante , Recién Nacido , Longevidad , Persona de Mediana Edad , Padres/psicología , Adulto Joven
6.
Fam Syst Health ; 38(4): 396-405, 2020 12.
Artículo en Inglés | MEDLINE | ID: mdl-33591781

RESUMEN

INTRODUCTION: How families function and provide support plays a central role in patients' self-management of Type 2 diabetes (T2DM) and prediabetes (preDM). Families would benefit from communication training, which is rarely incorporated into diabetes self-management education (DSME). Mothers are especially in need of this support. Women are at a higher risk of T2DM, and when mothers are patients, they can prioritize their family role and family's well-being over their personal needs as a patient. METHOD: To identify family communication that affects mothers' ability to self-manage T2DM/preDM, we interviewed 17 mothers aged 36-64 (M = 56). Transcripts were thematically analyzed. RESULTS: Women described four family communication experiences affecting self-care: (a) family-of-origin communication (e.g., weight/diet messages during childhood), (b) communal coping communication (e.g., adopting healthy behaviors as a family), (c) communication inhibiting communal coping (e.g., negative response to mothers' lifestyle changes), and (d) mothers taking the lead (e.g., leading conversations or communicating control over family's lifestyle decisions). DISCUSSION: Findings highlight the need for a family systems approach to DSME. Communication from multiple bonds (e.g., spouse, children) and past family-of-origin experiences impact self-care. Communal coping (appraising diabetes as "our" problem) was critical to self-management as mothers struggled to balance their needs with family members' preferences/attitudes. When not supported, mothers who took the lead communicatively could facilitate communal coping or prioritize self-care needs. Findings can inform a family-centered approach to DSME that highlights the importance of communal coping, provides all members communication skills training, and addresses the need for mothers to prioritize personal well-being. (PsycInfo Database Record (c) 2021 APA, all rights reserved).


Asunto(s)
Diabetes Mellitus Tipo 2/terapia , Relaciones Familiares/psicología , Automanejo/psicología , Adaptación Psicológica , Adulto , Diabetes Mellitus Tipo 2/complicaciones , Diabetes Mellitus Tipo 2/psicología , Femenino , Humanos , Entrevistas como Asunto/métodos , Persona de Mediana Edad , Madres/psicología , Investigación Cualitativa , Automanejo/métodos , Automanejo/estadística & datos numéricos , Apoyo Social
7.
Artículo en Inglés | MEDLINE | ID: mdl-32630657

RESUMEN

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.


Asunto(s)
Neoplasias de la Mama/epidemiología , Madres , Relaciones Padres-Hijo , Neoplasias de la Mama/etiología , Neoplasias de la Mama/prevención & control , Femenino , Humanos , Estilo de Vida , Relaciones Madre-Hijo , Núcleo Familiar
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