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1.
Health Psychol ; 2024 Sep 19.
Artigo em Inglês | MEDLINE | ID: mdl-39298209

RESUMO

Cancer poses significant challenges for patients and caregiving partners. Avoidant communication has been linked to poorer psychosocial adjustment to cancer. Two conceptual models have been proposed to account for this linkage: the social-cognitive processing and relationship intimacy models. OBJECTIVE: To examine the utility of these models in explaining patient and partner psychological and relationship adjustment on a day-to-day basis using ecological momentary assessment. METHOD: Patients with breast, colorectal, or lung cancer and their partners (286 dyads) were prompted twice daily for 14 days via smartphone to answer questions about communication with their partner, adjustment (psychological distress and relationship satisfaction), and hypothesized mediators (avoidant thoughts and intimacy). Data were collected from 2017 to 2020. RESULTS: Participants responded to 92% of prompts and completed 91%. Results supported the relationship intimacy but not the social-cognitive processing model. On afternoons when participants (both patients and caregivers) held back or perceived avoidance or criticism from their partner, they reported less intimacy, as did their partners; this lowered intimacy, in turn, led to participants' (both patients' and caregivers') own lowered relationship satisfaction that evening and to patients' lowered relationship satisfaction through caregivers' lowered intimacy (one-tailed Bayesian ps < .025). When distress was the criterion, patients' holding back or perceived avoidance/criticism led to their own increased distress through their own decreased intimacy, and caregivers' holding back or perceived avoidance/criticism led to patients' increased distress through patients' lowered intimacy (one-tailed Bayesian ps < .005). CONCLUSIONS: Findings offer implications for interventions designed to improve communication and enhance closeness. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

2.
Transplant Cell Ther ; 30(4): 450.e1-450.e17, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38244696

RESUMO

Reductions in physical activity (PA) are common among patients following hematopoietic cell transplantation, and a risk factor for poor physical functioning. PA among spouses/cohabiting partners, who frequently serve as the patient's primary caregiver, may also be reduced due to caregiving demands and limited bandwidth for self-care. In addition, the patient-caregiver relationship can be compromised, and communication patterns disrupted. All PA interventions in the hematopoietic cell transplantation setting have focused entirely on patients, ignoring an opportunity to synergistically engage and benefit the caregiver as well. We sought to test feasibility and acceptability of a couple-based intervention entitled Family-Focused Facilitated Fitness (FFFF), designed to improve PA as assessed by daily step counts among both patients undergoing hematopoietic cell transplantation and their caregivers. Guided by interdependence and communal coping perspectives, FFFF is an 8-week, remotely-delivered intervention that provides training in communication skills and joint problem-solving to help patients and caregivers support one another in PA. Participants are also given a Fitbit to track their steps and weekly individualized step prescription based on the 75th percentile ranked value of their last 7 recorded daily step counts. A priori benchmarks for feasibility and acceptability in this single-arm pilot were as follows: 50% of eligible couples would agree to participate, 70% of couples would attend all 8 sessions, 80% of participants would provide valid Fitbit wear data 4/7 days/ week, and among sessions reviewed for treatment fidelity, 85% of treatment protocol elements would be covered. Couples were recruited prior to transplant. Among 26 couples approached and deemed eligible, 17 enrolled (65% agreement) and completed baseline assessment. Three couples later withdrew after transplantation but prior to receiving the intervention, resulting in 14 couples commencing the intervention, on average 21 days post-transplant. Four couples subsequently discontinued due to medical complications (n = 3) or caregiver schedule (n = 1). Among the 10 couples who completed the intervention, the percentage of participants meeting our benchmark of valid Fitbit wear at least 4 days per week was 85% in week 1, 90% in weeks 2 to 7, and 80% in week 8. Treatment fidelity was 95% on average across 24 sessions reviewed (3 cases). Treatment satisfaction scores were uniformly high across multiple dimensions, with all means above 4 on the 1 to 5 scale. Daily step counts among those attending all 8 intervention sessions increased from 2249 ± 302 steps/day in week 1 to 4975 ± 1377 steps/day in week 8 among patients, and from 8676 ± 3760 steps/day in week 1 to 9838 ± 3723 steps/day in week 8 among caregivers. Qualitative feedback indicated perceived mental and physical health benefits of the program. Participants also offered suggestions for adaptations to accommodate medical setbacks and constraints. All a priori feasibility benchmarks were met or exceeded. Results offer promise for utility of the program to engage and leverage patient-caregiver dyads to increase PA following transplant. An investigation using a randomized controlled design will be necessary to adequately examine change over time relative to control and its possible impact on clinical and patient-reported outcomes.


Assuntos
Transplante de Células-Tronco Hematopoéticas , Humanos , Transplantados , Estudos de Viabilidade , Exercício Físico
3.
J Fam Psychol ; 38(2): 246-259, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38127494

RESUMO

Cancer poses a set of physical and emotional challenges to the patient, spouse, and their relationship. One challenge for couples is discussing cancer-related concerns in a manner that facilitates intimacy. Current couple-based interventions have been shown to have mixed efficacy, and little is known about how they bring about improvements. This study aims to expand our understanding of dyadic communication and intimacy to adapt and/or develop more effective interventions for couples coping with cancer. To accomplish this goal, the present study examined affective and behavioral processes associated with intimacy using the valence-affective-connection (VAC) framework and observational coding methods. Participants were 134 couples in which a patient was diagnosed with breast, colorectal, or lung cancer. Couples completed a battery of questionnaires, including a self-report measure of intimacy. Couples also completed a 15-min videotaped interaction about a cancer topic of their choosing, which was observationally coded for communication behavior and affective expression. Couples coping with cancer who reported higher versus lower intimacy engaged in qualitatively different levels, types, and patterns of communication behavior and affective expression. Specifically, couples who reported lower relationship intimacy used negative approach behavior and hard negative affect more frequently and for longer periods of time and were more likely to use avoidance-based communication. Higher intimacy couples were less likely to sustain the use of negative behavior and affect and displayed more reciprocity of positive joining affect. The study highlights important considerations for couple-based interventions and research in the context of cancer. (PsycInfo Database Record (c) 2024 APA, all rights reserved).


Assuntos
Adaptação Psicológica , Neoplasias , Humanos , Relações Interpessoais , Comportamento Sexual/psicologia , Comunicação
4.
JNCI Cancer Spectr ; 7(5)2023 Aug 31.
Artigo em Inglês | MEDLINE | ID: mdl-37561111

RESUMO

BACKGROUND: Cancer-related financial hardship is a side effect of cancer diagnosis and treatment, and affects both patients and caregivers. Although many oncology clinics have increased financial navigation services, few have resources to proactively provide financial counseling and assistance to families affected by cancer before financial hardship occurs. As part of an ongoing randomized study testing a proactive financial navigation intervention, S1912CD, among sites of the National Cancer Institute Community Oncology Research Program (NCORP), we conducted a baseline survey to learn more about existing financial resources available to patients and caregivers. METHODS: The NCORP sites participating in the S1912CD study completed a required 10-question survey about their available financial resources and an optional 5-question survey that focused on financial screening and navigation workflow and challenges prior to starting recruitment. The proportion of NCORP sites offering financial navigation services was calculated and responses to the optional survey were reviewed to determine current screening and navigation practices and identify any challenges. RESULTS: Most sites (96%) reported offering financial navigation for cancer patients. Sites primarily identified patients needing financial assistance through social work evaluations (78%) or distress screening tools (76%). Sites revealed challenges in addressing financial needs at the outset and through diagnosis, including lack of proactive screening and referral to financial navigation services as well as staffing challenges. CONCLUSIONS: Although most participating NCORP sites offer some form of financial assistance, the survey data enabled identification of gaps and challenges in providing services. Utilizing community partners to deliver comprehensive financial navigation guidance to cancer patients and caregivers may help meet needs while reducing site burden.


Assuntos
Oncologia , Neoplasias , Estados Unidos , Humanos , National Cancer Institute (U.S.) , Detecção Precoce de Câncer , Neoplasias/diagnóstico , Neoplasias/terapia , Neoplasias/psicologia , Cuidadores
5.
Ann Behav Med ; 57(9): 753-764, 2023 08 21.
Artigo em Inglês | MEDLINE | ID: mdl-37178456

RESUMO

BACKGROUND: The experience of cancer can create considerable emotional distress for patients and their committed partners. How couples communicate about cancer-related concerns can have important implications for adjustment. However, past research has primarily utilized cross-sectional designs and retrospective self-reports of couple communication. While informative, little is known about how patients and partners express emotion during conversations about cancer, and how these emotional patterns predict individual and relational adjustment. PURPOSE: The current investigation examined how patterns of emotional arousal within couples' communication about cancer was associated with concurrent and prospective individual psychological and relational adjustment. METHODS: At baseline, 133 patients with stage II- breast, lung, or colorectal cancer and their partners completed a conversation about a cancer-related concern. Vocally expressed emotional arousal (f0) was extracted from recorded conversations. Couples completed self-report measures of individual psychological and relational adjustment at baseline and at 4, 8, and 12 months later. RESULTS: Couples who started the conversation higher in f0 (i.e., greater emotional arousal) reported better individual and relational adjustment at baseline. If the non-cancer partner had lower f0 relative to patients, this predicted worse individual adjustment across follow-up. Additionally, couples who maintained their level of f0 rather than decreasing later in the conversation reported improvements in individual adjustment across follow-up. CONCLUSIONS: Elevated emotional arousal within a cancer-related conversation may be adaptive for adjustment, as it may reflect greater emotional engagement and processing of an important topic. These results may suggest ways for therapists to guide emotional engagement to enhance resilience in couples experiencing cancer.


Cancer is a stressful experience for patients and their partners. We know that how couples communicate about cancer is important, but we do not know much about how couples express emotion during cancer conversations and how those emotional expressions affect well-being. Our study looked at how couples' emotional arousal within cancer conversations relate to individual and relationship well-being. At the beginning of the study, cancer patients and their partners had a conversation about cancer. Within these conversations, we tracked the emotional arousal expressed in their voices. Couples also completed surveys about their well-being at the beginning of the study and later in time (4, 8, and 12 months later). We found that couples who started the conversation with higher emotional arousal had better initial well-being. Couples who remained higher in arousal later in the conversation improved in their individual well-being over time. We also found that if the non-cancer partner was low in arousal compared with patients, this predicted worse well-being over time. More research is needed, but these findings suggest that being emotionally aroused during conversations about important topics like cancer might be helpful for well-being, potentially because couples are discussing concerns and not backing off when it feels challenging.


Assuntos
Nível de Alerta , Comunicação , Ajustamento Emocional , Emoções Manifestas , Características da Família , Relações Familiares , Neoplasias , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Relações Familiares/psicologia , Seguimentos , Neoplasias/psicologia , Resiliência Psicológica , Gravação de Som , Voz , Apoio Familiar/psicologia
6.
Artigo em Inglês | MEDLINE | ID: mdl-37239485

RESUMO

An estimated one in three gay and bisexual (GB) male couples receive a prostate cancer (PCa) diagnosis over their life course with limited understanding of the impacts on their relationships. Psychological distress related to PCa diagnosis and treatment-related side effects have been shown to disrupt established GB partnership dynamics. Communication barriers often develop within GB relationships affected by PCa, further exacerbating couple tensions, isolating partners, and lowering quality of life for both patients and partners. In order to elaborate on these phenomena following a PCa diagnosis, we conducted focus group discussions with GB men in relationships. Men were recruited nationally through PCa support groups, and after completing consent procedures, they were invited to one of two focus group discussions conducted through video conference. Topics discussed included the diagnosis and medical decision making pertaining to PCa; healthcare provider experiences; the emotional, physical, and sexual impact of PCa diagnosis and treatment; sources of support and appraisal of resources; and partner involvement and communication. There were twelve GB men who participated in focus group discussions that were audio-recorded and transcribed, and analyzed using a thematic approach. GB couple experiences with PCa during and after treatment choice and recovery identified common patient-provider communication barriers. In particular, GB men reported difficulties in disclosing their sexuality and relationship to their providers, limiting conversations about treatment choice and partner engagement in care. Both patients and partners experienced times of being alone after treatment, either by choice or to give space to their partner. However, partners often did not explicitly discuss their preferences for being alone or together, which resulted in partners' disengagement in their relationship and the prostate cancer healthcare process. This disengagement could blunt the notable PCa survival benefits of partnership for GB men.


Assuntos
Neoplasias da Próstata , Minorias Sexuais e de Gênero , Humanos , Masculino , Qualidade de Vida , Parceiros Sexuais/psicologia , Comportamento Sexual/psicologia , Neoplasias da Próstata/terapia , Neoplasias da Próstata/psicologia
7.
Transplant Cell Ther ; 29(8): 520.e1-520.e7, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-37137443

RESUMO

Storytelling has long been considered an effective means of communication, allowing the teller to process their emotions in light of particular life challenges. Effects on the listener also have been demonstrated to be beneficial, especially if the listener is faced with a similar life challenge. Less is known regarding the potential effects of storytelling on listening dyads and opportunities for joint processing following exposure to relevant stories. We sought to study these phenomena in the context of hematopoietic cell transplantation (HCT), a demanding medical procedure requiring intensive informal caregiving and thus great patient-caregiver entwinement. The purpose of this qualitative descriptive study was to explore participants' perceptions of a 4-week web-based digital storytelling (DST) intervention using both quantitative ratings of acceptability and qualitative coding of interviews conducted after intervention completion. A total of 202 participants (101 HCT patient-caregiver dyads) were recruited from the Mayo Clinic Arizona and randomized into either a DST arm or an Information Control (IC) arm. Participants in the DST arm rated the acceptability of the intervention and were asked to participate in a 30-minute phone interview to discuss their experience with the DST intervention. All interviews were recorded and transcribed verbatim and imported into NVivo 12 for coding and analysis, using a combination of deductive and inductive approaches to organize the data, create categories, and develop themes and subthemes. A total of 38 participants (19 HCT patient-caregiver dyads) completed the post-intervention interviews. Patients were 63% male and 82% White, 68% received allogeneic HCT, and their mean age was 55 years. The median time from HCT was 25 days (range, 6 to 56 days). Caregivers were mostly patients' spouses (73%) and female (69%), with a mean age of 56 years. In general, the 4-week web-based DST intervention was well accepted and liked by both patients and caregivers regarding the duration, dyadic participation, and convenience of participating in the intervention at home. Patients and caregivers who completed the DST intervention indicated that they were satisfied with the intervention (mean score, 4.5 of 5), were likely to recommend it to others (mean score, 4.4), would watch more stories (mean score, 4.1), and that the experience was worth their time (mean score, 4.6). Major themes that emerged from the qualitative analysis included (1) building communal connection through engaging with the stories; (2) positive emotional growth after HCT; (3) value of gaining the other's perspective; and (4) impact of open communication on the patient-caregiver relationship. A web-based DST intervention provides an attractive format through which to deliver a nonpharmacologic psychosocial intervention to HCT patient-caregiver dyads. Watching the emotional content in digital stories may help patients and caregivers cope with psychoemotional challenges together and provide an opportunity for emotional disclosure. Further work on determining optimal paths to disclosure is warranted.


Assuntos
Cuidadores , Transplante de Células-Tronco Hematopoéticas , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cuidadores/psicologia , Comunicação , Emoções , Transplante de Células-Tronco Hematopoéticas/métodos , Pacientes
8.
Artigo em Inglês | MEDLINE | ID: mdl-37047865

RESUMO

Cancer poses a threat to well-being that may activate the attachment system and influence interpersonal dynamics, such as communication. Research indicates that avoidant and anxious attachment, as well as communication, are independently associated with poorer psychosocial well-being, yet studies examining links between attachment, communication, and long-term physical well-being are lacking. We examined (a) associations between patient and partner attachment (measured with the adult attachment scale [AAS-Revised]) and observed communication (across affect [the Relational Affective Topography System (RATS) coding system] and behavior [the Asymmetric Behavior Coding System (ABCS) coding system]) and (b) the extent to which attachment and communication independently predicted long-term physical well-being (measured by the Functional Assessment of Cancer Therapy-General Population [FACT-GP]). Participants were 134 couples [mean age 53.9 (SD = 13.4), 86.2% Caucasian, 66% of patients, 36% of partners female]. Patient participants had either breast, colorectal, or lung cancer. Couples individually completed self-report measures of attachment (baseline) and physical well-being (baseline and 4, 8, and 12 months later). At baseline, couples engaged in a 15 min videorecorded cancer-related conversation coded for communication behavior and affective expression. Patients and partners with higher anxious and avoidant attachment exhibited more negative affect and negative approach behaviors. A greater avoidant attachment was associated with less positive affective expression. Attachment insecurity and affective expression were prospectively linked with physical well-being. Findings indicate that attachment is associated with overt communication behaviors and that insecure attachment and affective expression may be risk factors for poorer health outcomes.


Assuntos
Neoplasias , Comportamento Sexual , Humanos , Feminino , Comportamento Sexual/psicologia , Ansiedade , Adaptação Psicológica , Comunicação , Relações Interpessoais , Apego ao Objeto , Parceiros Sexuais/psicologia
9.
Transplant Cell Ther ; 28(6): 333.e1-333.e7, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-35292391

RESUMO

The medical and psychological sequelae of hematopoietic cell transplantation (HCT) are well established, but less is known about the impact on intimate relationships. We sought to describe the prevalence of relationship distress among married HCT survivors and to identify factors associated with relationship distress. The study was cross-sectional. HCT survivors treated at a National Cancer Institute-designated cancer center completed a survey that included measures of psychological and relationship distress (Revised Dyadic Adjustment Scale [RDAS]), demographic, and medical factors. A total of 1047 respondents reported being married and completed the RDAS. Sample characteristics were a mean age of 58 years (range, 22 to 83 years), a mean interval post-HCT of 12.3 years (range, <1 to 43 years), 42% female, and 89% non-Hispanic white. RDAS total adjustment scores were comparable to published community sample values. Nineteen percent of the respondents were classified as relationship-distressed. Three factors were associated with greater odds of relationship distress: cancer and treatment distress (odds ratio [OR], 1.59; 95% confidence interval [CI], 1.09 to 2.31); depression (OR, 1.44; 95% CI, 1.17 to 1.76), and time post-transplantation (OR, 1.03; 95% CI, 1.01 to 1.04). These findings were qualified by sex-stratified analyses. Depression was associated with relationship distress among females; the other 2 variables were associated with relationship distress among males. Our results paint an overall picture of positive long-term marital functioning among HCT survivors, with a subset reporting relationship distress. Screening is warranted to identify survivors at risk for relationship distress and to inform targeted intervention.


Assuntos
Transplante de Células-Tronco Hematopoéticas , Sobreviventes , Estudos Transversais , Feminino , Transplante de Células-Tronco Hematopoéticas/efeitos adversos , Humanos , Masculino , Casamento/psicologia , Pessoa de Meia-Idade , Prevalência , Sobreviventes/psicologia
10.
J Cancer Educ ; 37(5): 1275-1285, 2022 10.
Artigo em Inglês | MEDLINE | ID: mdl-33389660

RESUMO

Patients undergoing hematopoietic cell transplantation (HCT) are at risk for psychological and social impairment given the rigors and multiple sequelae of treatment. The purpose of this pilot study was to test the feasibility of a digital storytelling (DS) intervention for HCT patients, and to examine limited efficacy of the intervention relative to control arm on psychological distress and perceived social support. Adult HCT patients (n = 40, M age = 59.2 years) were enrolled immediately post-HCT and randomly assigned to either DS intervention or information control (IC). DS participants viewed four 3-min personal, emotionally rich digital stories, and IC condition participants viewed four videos containing information about post-HCT care. Feasibility regarding recruitment, enrollment efforts, and change scores from pre- to post-intervention (Δs) on depression, anxiety, and perceived social support were tracked. Fifty-four (51.4%) of 105 eligible patients consented. Forty (74%) patients completed the intervention. All but one completed the post-intervention assessments demonstrating that HCT patients can be recruited and retained for this intervention. On average, perceived social support increased for the DS group (Δ = 0.06) but decreased for the IC group (Δ = - 0.05). Anxiety and depression improved over time in both conditions. Viewing digital stories with content evoking emotional contexts similar to one's own health challenges may improve perceptions of social support among HCT patients. How DS can improve perceived social support for both short-term and longer-term sustained effects in a longitudinal study is an area ripe for additional investigation.


Assuntos
Transplante de Células-Tronco Hematopoéticas , Adulto , Depressão/prevenção & controle , Depressão/psicologia , Estudos de Viabilidade , Humanos , Estudos Longitudinais , Pessoa de Meia-Idade , Projetos Piloto
11.
Front Psychol ; 12: 769407, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-35222142

RESUMO

Cancer and its treatment pose challenges that affect not only patients but also their significant others, including intimate partners. Accumulating evidence suggests that couples' ability to communicate effectively plays a major role in the psychological adjustment of both individuals and the quality of their relationship. Two key conceptual models have been proposed to account for how couple communication impacts psychological and relationship adjustment: the social-cognitive processing (SCP) model and the relationship intimacy (RI) model. These models posit different mechanisms and outcomes, and thus have different implications for intervention. The purpose of this project is to test and compare the utility of these models using comprehensive and methodologically rigorous methods. Aims are: (1) to examine the overall fit of the SCP and RI models in explaining patient and partner psychological and relationship adjustment as they occur on a day-to-day basis and over the course of 1 year; (2) to examine the fit of the models for different subgroups (males vs. females, and patients vs. partners); and (3) to examine the utility of various methods of assessing communication by examining the degree to which baseline indices from different measurement strategies predict self-reported adjustment at 1-year follow up. The study employs a longitudinal, multi-method approach to examining communication processes including: standard self-report questionnaires assessing process and outcome variables collected quarterly over the course of 1 year; smartphone-based ecological momentary assessments to sample participant reports in real time; and laboratory-based couple conversations from which we derive observational measures of communicative behavior and affective expression, as well as vocal indices of emotional arousal. Participants are patients with stage II-IV breast, colon, rectal, or lung cancer and their spouses/partners, recruited from two NCI-designated comprehensive cancer centers. Results will be published in scientific journals, presented at scientific conferences, and conveyed to a larger audience through infographics and social media outlets. Findings will inform theory, measurement, and the design and implementation of efficacious interventions aimed at optimizing both patient and partner well-being.

12.
Transplant Cell Ther ; 27(1): 80.e1-80.e12, 2021 01.
Artigo em Inglês | MEDLINE | ID: mdl-33002641

RESUMO

This investigation characterized sexual activity and sexual function in hematopoietic cell transplantation (HCT) survivors, compared them with norms, and examined factors associated with sexual dysfunction, with the goal of identifying targets for intervention to improve sexual health. Surviving adults from a large transplantation center were asked to complete an annual survey with a core of health questions and a module on sexual activity and function. Participants completed the Sexual Function Questionnaire, Cancer and Treatment Distress form, and Revised Dyadic Adjustment Scale. Clinical data were collected from the transplantation medical database. Multivariate logistic regressions identified factors associated with sexual activity and function. Participating survivors (n = 1742) were a mean of 11.9 years (range, .4 to 43.1 years) after HCT, mean age 57.6 years, and 53% male. Women were more likely than men to report being sexually inactive in the past year (39% versus 27%) and, among those sexually active, to report low sexual function (64% versus 32%). Male and female survivors reported lower rates of sexual activity and function than comparison norms (all P < .01). In regressions, factors associated with being sexually inactive included older age, having <4 years of college education, low performance status, and not being in a committed relationship. Additional factors for men included receipt of nonmyeloablative conditioning and not being employed or in school. Low sexual functioning for men and women was associated with low performance status, and, for women, a committed relationship of lower quality, while for men the association was with older age. Sexual dysfunction is common in both men and women after HCT, regardless of time since treatment. Survivors need routine evaluation and access to multimodal interventions.


Assuntos
Transplante de Células-Tronco Hematopoéticas , Disfunções Sexuais Fisiológicas , Adulto , Idoso , Feminino , Transplante de Células-Tronco Hematopoéticas/efeitos adversos , Humanos , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Disfunções Sexuais Fisiológicas/etiologia , Inquéritos e Questionários , Sobreviventes
13.
Mayo Clin Proc Innov Qual Outcomes ; 4(4): 424-433, 2020 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-32793870

RESUMO

OBJECTIVE: To develop an educational intervention to empower patients to manage their financial health better. PARTICIPANTS AND METHODS: This study was conducted from September 1, 2017, to January 31, 2019. Focus groups were held with social workers, case managers, and patient financial service staff and interviews were conducted with patients and caregivers to inform the content, delivery format, and timing of an intervention for mitigating financial hardship from treatment (phase 1). Based on qualitative data, theories of adult learning, and a review of the literature, we created an educational presentation to be delivered in a classroom setting. Two patient focus groups were then held for feedback on the presentation (phase 2). RESULTS: In phase 1, both patients and allied health care staff providers believed that an educational intervention about financial aspects of care early during treatment would help them cope and plan better. Participants' suggestions for the intervention's content included billing information, insurance, authorization processes, employment policies related to health care and disability benefits, and alternative financial resources. Based on these suggestions, a preliminary educational presentation was developed with 3 main themes: insurance issues, employment issues, and financial health. Phase 2 focus group participants suggested refinement of the presentation, including targeting specific groups, adding graphics, and more information about resources. CONCLUSION: Our study provides the basis for a patient-centered education module for emotional, instrumental, and informational support for financial distress for use in a clinical setting.

14.
Biol Blood Marrow Transplant ; 26(4): 764-771, 2020 04.
Artigo em Inglês | MEDLINE | ID: mdl-31760133

RESUMO

Allogeneic hematopoietic cell transplantation (HCT) is a demanding treatment with well-established medical and psychosocial sequelae. Impacts on significant others are tremendous. Using an unfiltered qualitative approach, we asked spouses (n = 15) of HCT recipients to talk about their thoughts and feelings regarding the transplantation and their role as caregiver. Recordings were transcribed and independently coded to identify recurrent patterns. Caregivers mentioned both negative and positive psychological impacts of HCT, but the number of negative impacts was greater: 164 versus 34 instances. The most frequently mentioned negative psychological impacts were anxiety/worry (30 instances), fear (20 instances), feeling overloaded/overwhelmed (19 instances), and uncertainty (17 instances). Other emergent categories were roles/responsibilities (49 instances) such as parenting, work, and treatment-related tasks, and coping strategies (55 instances). The latter included both adaptive and maladaptive strategies (75% and 25%, respectively). Despite the preponderance of negatively toned thoughts and feelings, signs of adjustment emerged, with mentions of positive psychological states, such as optimism and gratitude, and adaptive coping strategies, such as active coping, use of emotional support, and self-care. Interventions intended to facilitate adaptation to the HCT experience should involve strategies to help caregivers manage symptoms of distress and promote adaptive coping.


Assuntos
Cuidadores , Transplante de Células-Tronco Hematopoéticas , Adaptação Psicológica , Humanos , Estresse Psicológico/etiologia , Transplantados
15.
Pers Relatsh ; 27(3): 526-549, 2020 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-38094308

RESUMO

Attachment styles may influence interpersonal strategies used to cope with stress. We examined links between attachment style, communicative behaviors, and physical well-being among 166 couples coping with cancer. Results of actor-partner interdependence mediation models indicated that insecure attachment styles were associated with greater self-report of two different and seemingly contradictory communicative behaviors (disclosure and holding back), which in turn were associated with poorer physical well-being. These effects were intrapersonal for both patients and spouses, with the exception of anxious attachment and holding back for spouses. They were also interpersonal in that spouse insecure attachment was associated with poorer patient physical well-being through spouse communication (greater holding back and disclosure). Couple-based communication interventions to support adjustment should consider attachment style.

16.
Biol Blood Marrow Transplant ; 25(11): 2228-2233, 2019 11.
Artigo em Inglês | MEDLINE | ID: mdl-31265918

RESUMO

Family caregivers are essential partners for patients undergoing hematopoietic cell transplantation (HCT). The caregiving role is emotionally, physically, and financially demanding. Intervention efforts to provide relief for caregiver stress during HCT are highly warranted. Storytelling interventions are accruing evidence for efficacy in therapeutic contexts. The purpose of this study was to conduct a 3-full consecutive day digital storytelling (DST) workshop to build knowledge on caregivers' lived experiences during HCT, to pilot test DST with a small group of HCT caregivers, and to demonstrate feasibility and acceptability using qualitative and quantitative measures. Six adult caregivers of allogeneic HCT recipients (mean age, 60.2 years) attended a 3-day DST program (66% female, 83% white). All successfully created their personal audiovisual digital story (2 to 3 minutes long) and completed a survey. All participants rated the DST workshop as highly acceptable and therapeutic (mean score 5, on a scale of 1 to 5). Group discussions and interviews with participants further demonstrated high satisfaction and acceptability of the workshop format, setting, process, and structure. The survey results showed decreases in anxiety and depression from before to after the DST workshop with all participants showing change in the expected direction. This study demonstrates the feasibility and acceptability of a 3-day DST workshop as a distress-relieving tool for HCT caregivers. Future research is needed to test the efficacy of DST relative to a control condition.


Assuntos
Ansiedade/psicologia , Cuidadores , Depressão/psicologia , Transplante de Células-Tronco Hematopoéticas/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Idoso , Educação , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Transplante Homólogo
17.
Front Psychol ; 9: 1843, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-30364167

RESUMO

Cancer treatment poses significant challenges not just for those diagnosed with the disease but also for their intimate partners. Evidence suggests that couples' communication plays a major role in the adjustment of both individuals and in the quality of their relationship. Most descriptive studies linking communication to adjustment have relied on traditional questionnaire methodologies and cross-sectional designs, limiting external validity and discernment of temporal patterns. Using the systemic-transactional model of dyadic coping as a framework, we examined intra- and inter-personal associations between communication (both enacted and perceived) and relationship satisfaction (RS) among patients with stage II-IV breast or colorectal cancer and their spouses (N = 107 couples). Participants (mean age = 51, 64.5% female patients, and 37.4% female spouses) independently completed twice-daily ecological momentary assessments (EMA) via smartphone for 14 consecutive days. Items assessed RS and communication (expression of feelings, holding back from expression, support and criticism of partner, and parallel ratings of partner behavior). Linear mixed models employing an Actor Partner Interdependence Model were used to examine concurrent, time-lagged, and cross-lagged associations between communication and RS. Expressing one's feelings was unassociated with RS. Holding back from doing so, in contrast, was associated with lower RS for both patients and spouses in concurrent models. These effects were both intrapersonal and interpersonal, meaning that when individuals held back from expressing their feelings, they reported lower RS and so too did their partner. Giving and receiving support were associated with one's own higher RS for both patients and spouses in concurrent models, and for patients in lagged models. Conversely, criticizing one's partner and feeling criticized were maladaptive, associated with lower RS (own and in some cases, partner's). Cross-lagged analyses (evening RS to next-day afternoon communication) yielded virtually no effects, suggesting that communication may have a stronger influence on short-term RS than the reverse. Findings underscore the importance of responsive communication, more so than expression per se, in explaining both concurrent and later relationship adjustment. In addition, a focus on holding back from expressing feelings may enhance the understanding of RS for couples coping with cancer.

18.
Biol Blood Marrow Transplant ; 24(9): 1888-1895, 2018 09.
Artigo em Inglês | MEDLINE | ID: mdl-29772351

RESUMO

Hematopoietic cell transplantation (HCT) poses significant challenges for recipients and their caregiving partners. Couples may refrain from talking about treatment-related fears and concerns to minimize distress. This single-group, pre-post study examined feasibility and acceptability of an intervention designed to optimize communication between HCT patients and partners; it also assessed change in process measures. Couples met with a therapist 5 times to learn skills for disclosing illness-related thoughts and feelings and responding supportively to one another. The extent to which participants disclosed thoughts, feelings, and information during the session and felt supported was assessed at the close of each session. Forty of 89 eligible couples consented (45%). Thirty couples commenced intervention 1-month post-transplant; 26 of these completed all sessions (87%) and 27 completed follow-up (90%). Ratings of self-disclosure and feeling supported by one's partner increased linearly across intervention sessions among both patients and caregivers (all P ≥ .01). Ratings of satisfaction with the intervention were high. HCT couples can be recruited and retained for this intervention. They found it acceptable and were amenable to skills training. A randomized trial is needed to test efficacy and to identify moderators of treatment response.


Assuntos
Transplante de Células-Tronco Hematopoéticas/métodos , Condicionamento Pré-Transplante/métodos , Cuidadores , Feminino , Humanos , Masculino , Pessoa de Meia-Idade
19.
Curr Hematol Malig Rep ; 13(3): 155-163, 2018 06.
Artigo em Inglês | MEDLINE | ID: mdl-29705880

RESUMO

PURPOSE OF REVIEW: Hematopoietic cell transplant (HCT) patients are required to have a caregiver present for up to 100 days post-transplant. Caregivers provide essential support during HCT but experience immense stress and burden. Increasing research has developed interventions for HCT caregivers. This review systematically evaluates psychosocial interventions for caregivers of HCT patients. RECENT FINDINGS: The search yielded 12 studies (7 efficacy and 5 feasibility studies) enrolling 931 caregivers. Interventions were feasible and acceptable as evidenced by high rates of completion (70-100%) with attrition due to patient morbidity or mortality. Feasibility was augmented by flexible delivery (in-person, teleconference, smartphones, or Web-based platforms). Acceptability was demonstrated by objective measures of satisfaction. Effectiveness was found for fatigue and mental health service use, but not for burden, sleep-quality, and inconsistently for caregiver depression, anxiety, coping, and quality of life. Psychosocial interventions are feasible, acceptable, and show mixed effects on HCT caregiver outcomes.


Assuntos
Cuidadores , Transplante de Células-Tronco Hematopoéticas , Sistemas de Apoio Psicossocial , Ensaios Clínicos como Assunto , Humanos
20.
J Adolesc Health ; 62(2): 176-183, 2018 02.
Artigo em Inglês | MEDLINE | ID: mdl-29248393

RESUMO

PURPOSE: The objectives of this study were to determine whether pediatricians are more likely than other primary care physicians (PCPs) to refer newly diagnosed adolescent and young adult patients with cancer to pediatric oncological specialists, and to assess the physician and patient characteristics that affect patterns of referral. METHODS: A cross-sectional vignette survey was mailed to PCPs to examine hypothetical referral decisions as a function of physician characteristics and patient characteristics, including diagnosis, age, gender, race/ethnicity, family support, transportation, insurance, and patient preference for site of care. Pediatrician PCPs and nonpediatrician PCPs (family medicine, internal medicine, and emergency medicine physicians) practicing in North Carolina and in Washington State participated in the study. RESULTS: A total of 406 surveys were completed (35.8% response rate). Sixty percent of pediatric PCPs referred their hypothetical patients with cancer to pediatric specialists (PSs), compared with only 37% of nonpediatric PCPs. Patient age also influenced referral patterns; 89% of 13-year-olds, 74% of 16-year-olds, 25% of 19-year-olds, and only 9% of 22-year-old patients were referred to a PS. Multivariate logistic regression demonstrated that diagnosis and physician practice setting also were associated with referral patterns. CONCLUSIONS: Both patient age and PCP specialty were significant predictors of referral patterns in hypothetical vignettes of newly diagnosed adolescent and young adult patients with cancer. Pediatricians were more likely than nonpediatrician PCPs to refer patients to a PS. Referrals to PSs decreased dramatically between ages 16 and 19. Because the site of oncological care can impact outcomes, these data have the potential to inform awareness and education initiatives directed at PCPs.


Assuntos
Tomada de Decisões , Neoplasias/terapia , Pediatras/estatística & dados numéricos , Médicos de Atenção Primária/estatística & dados numéricos , Encaminhamento e Consulta/estatística & dados numéricos , Adolescente , Adulto , Fatores Etários , Estudos Transversais , Feminino , Pesquisas sobre Atenção à Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/diagnóstico , North Carolina , Especialização , Washington , Adulto Jovem
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