Applications of turning point analysis in behavioral medicine research: A systematic scoping review.

BACKGROUND: Turning Point Analysis (TPA) is a methodological approach that allows scholars to retrospectively capture change over time by identifying instances of critical change (i.e., turning points) encountered across a given time period. While TPA has been used to examine time as a variable in health and illness experiences, the use of the method in behavioral medicine scholarship may be limited by the lack of understanding of TPA procedures and applicability. OBJECTIVE: To describe how TPA has been used and enhance its accessibility by identifying and synthesizing methods of TPA data collection and analysis. METHODS: A systematic search of electronic databases, including Academic Source Premier, Psychology and Behavioral Sciences Collection, APA PsycInfo, and ProQuest Dissertation and Theses Database, was conducted in May 2020. In July 2020, we used hand searching to identify additional articles, including forward and back tracking seminal articles on TPA. Studies were screened in duplicate. RESULTS: Of the 1184 studies screened for this review, we included 52. Studies used TPA to examine relational (k = 40), organizational (k = 6), and individual (k = 6) variables and included an analysis of either turning points (k = 28), the trajectories of change over time created by the turning points (k = 3), or both (k = 21). Turning points and trajectories were captured and analyzed using qualitative and quantitative analytic approaches, with most studies using either purely qualitative (k = 26) or mixed methods (k = 21). CONCLUSIONS: The findings of this review provide insight into the varied applications of TPA and suggest the potential value of this methodological approach in better understanding health experiences across time. By synthesizing the procedural and analytic steps to conducting a TPA, this review could also increase the accessibility and use of TPA in behavioral medicine research.

Integrating family caregivers in older adults' hospital stays: a needed cultural shift.

OBJECTIVES: This study aimed to examine perceived barriers and facilitators to caregiver inclusion in the hospital care of older adult family members or friends through the perspectives of (1) hospitalized older adults, (2) caregivers of a hospitalized older adult, (3) healthcare clinicians, and (4) policymakers. METHODS: This qualitative descriptive exploratory study utilized semi-structured interviews with N = 24 participants and was analyzed using a framework method. RESULTS: Eight codes arose that were categorized into four domains guided by the Social Ecological Model. Individual-level factors were determined both for the caregiver and for the clinician. Relationship-level factors were revealed pertaining to communication style and method. Hospital-level factors included hospital environment and resources. Societal-level factors included healthcare climate and policies. DISCUSSION: Findings indicated that hospital workflows and policies inadequately support family caregivers. This study highlights potential solutions to caregivers' integration into hospital workflows.

A randomized controlled trial of a distress screening, consultation, and targeted referral system for family caregivers in oncologic care.

OBJECTIVE: Distress screening is standard practice among oncology patients, yet few routine distress screening programs exist for cancer caregivers. The objective of this study was to demonstrate the feasibility, acceptability, and preliminary efficacy of Cancer Support Source-CaregiverTM (CSS-CG, 33-item), an electronic distress screening and automated referral program with a consultation (S + C) to improve caregiver unmet needs, quality of life, anxiety, depression, and distress relative to Enhanced Usual Care (EUC; access to educational materials). METHOD: 150 caregivers of patients with varying sites/stages of cancer were randomized to S + C or EUC and completed assessments at baseline, 3-months post-baseline, and 6-months post-baseline. A subset of participants (n = 10) completed in-depth qualitative interviews. RESULTS: S + C was feasible: among 75 caregivers randomized to S + C, 66 (88%) completed CSS-CG and consultation. Top concerns reported were: (1) patient's pain and/or physical discomfort; (2) patient's cancer progressing/recurring; and (3) feeling nervous or afraid. Differences between groups in improvements on outcomes by T2 and T3 were modest (ds < 0.53) in favor of S + C. Qualitative data underscored the helpfulness of S + C in connecting caregivers to support and helping them feel cared for and integrated into cancer care. CONCLUSIONS: S + C is feasible, acceptable, and yields more positive impact on emotional well-being than usual care. Future studies will examine programmatic impact among caregivers experiencing higher acuity of needs, and benefits of earlier integration of S + C on caregiver, patient, and healthcare system outcomes.

"A little bit different now": Impacts of caregiving for parent with cancer on psychosocial development in emerging and young adulthood.

Serving as a family caregiver for, and ultimately losing, a parent with advanced cancer in emerging and young adulthood has substantial, life phase-specific implications for psychosocial development. This qualitative study characterizes domains of psychosocial development impacted by cancer caregiving and parental death in this life phase. As part of a larger study, 33 bereaved emerging/young adult caregivers of parents who died following advanced cancer completed semi-structured interviews. A thematic analysis leveraging the constant comparative method was conducted by two coders and generated three themes, which described impacts of caregiving on: identity, life path, and relational intimacy and roles. Analyses also defined specific outcomes within these domains. Findings suggest that cancer caregiving-loss experiences can greatly influence developmental pursuits in this life phase. Findings validate a range of possible psychosocial impacts these caregivers may experience and can guide development of supportive resources for this growing subgroup of bereaved family caregivers.

Geriatric Communication Skills Training Program for Oncology Healthcare Providers: a Secondary Analysis of Patient and Caregiver Outcomes.

Geriatric cancer patients and their caregivers have unique needs that make it difficult for their healthcare providers (HCPs) to effectively communicate with them. As ineffective communication can lead to negative health outcomes, it is important that oncology HCPs receive specialized training on communication with older adult patients and their caregivers. We conducted a small pilot study examining audio recordings of clinical encounters between HCPs and older adult cancer patients/caregivers and questionnaires completed by the patients and their caregivers before and after the HCPs participated in a geriatric communication skills training program. Eleven HCPs completed the 6-h Geriatric Comskil Training. Two clinic consultations with unique geriatric patients (n = 44) and their caregivers (n = 29) were recorded before and after training and coded for HCPs' use of communication skills. Patients and caregivers also completed surveys measuring their satisfaction with HCP communication and perceived empathy. Analysis of the audio recordings revealed that HCPs did not increase their use of communication skills after training. Although our sample was too small to detect statistical significance, measures of effect size showed trending improvements in patients' and caregivers' perceptions of HCPs' empathy and satisfaction with their communication after training. Our findings build on previous studies evaluating the feasibility and effectiveness of the Geriatric Comskil Training in real world setting and indicate that the training may have improved HCPs' communication with older adult patients and their caregivers even if their use of their observable communication skills did not change.

Understanding the role of parents' information sharing and withholding on emerging and young adults' caregiving and coping during their parents' advanced cancer.

Emerging and young adult caregivers (EYACs) who provide care to their parents are a hidden, unsupported population of caregivers. Research identifies information sharing or withholding as a key aspect of caregivers' ability to cope and adjust, which may be especially critical when a parent is diagnosed with advanced cancer. The goal of this study was to examine the impact of parent information sharing/withholding on EYACs' caregiving and coping experiences. We conducted in-depth, semi-structured interviews with 33 EYACs between the ages of 18-35 who cared for a parent that died of advanced cancer. Interview transcripts were thematically analyzed. Three factors played a role in how parents' information sharing/withholding affected EYACs' caregiving/coping: 1) topic, 2) timing, and 3) who is included. Findings highlight the adaptive functioning of parents' information sharing and negative outcomes associated with information withholding, illustrating how parents' disclosure decisions function to promote or inhibit EYACs' care involvement and coping.

Understanding parents uncertainty sources and management strategies while caring for a child diagnosed with a hematologic cancer.

Rationale: Parents of a child or adolescent (CA) or young adult (YA) diagnosed with a hematologic cancer often face uncertainty. Managing uncertainty is critical to reduce the psychosocial burden of illness-related stressors. Objective: This study sought to identify: 1) sources of uncertainty among parents of a child diagnosed with a hematologic cancer, 2) strategies used by parents to manage uncertainty, and 3) clinicians' responses to parents' online information-seeking approach to managing uncertainty. Methods: Parents of CAs/YAs diagnosed with a hematologic cancer within the past 1-18 months and living in the U.S. participated in an in-depth, semi-structured phone interview (n = 20). Data were analyzed thematically. Results: Parents reported uncertainty about treatment (options, efficacy, and side effects or risks) and uncertainty about the future (recurrence, whether worry would subside, and how to approach the child's future). Parents managed uncertainty by seeking information online, talking to clinicians, and joining support groups. Clinicians' responses to online information-seeking were described as supportive and unsupportive. Conclusion: Parents described struggling with uncertainty across the cancer continuum (from primary treatment to survivorship). Parents' psychosocial health may benefit from individual and systems level interventions that help address and manage uncertainty, especially interventions focusing on parent caregiver-clinician communication.

Survivorship transitions in blood cancer: Identifying experiences and supportive care needs for caregivers.

PURPOSE: Survivorship 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. METHODS: We 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. RESULTS: Caregivers 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). CONCLUSIONS: Survivorship 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 SURVIVORS: Tailored supportive resources are needed for caregivers throughout survivorship transitions.

A Mixed-Method Examination of Emerging and Young Adult Cancer Caregivers' Experiences during the COVID-19 Pandemic.

Advanced cancer caregivers in emerging and young adulthood (EYACs; ages 18-35) are an understudied yet vulnerable caregiving population. The COVID-19 pandemic created new challenges for advanced cancer caregivers but also created unique contexts from which caregivers sometimes benefited. To understand how the pandemic may have positively and negatively impacted their caregiving and bereavement experiences, we examined EYACs' experiences of caring for and losing a parent with advanced cancer during the pandemic in comparison to those of EYACs with a parent who died outside the context of the pandemic. Eligible EYACs completed an online survey and semi-structured interview. Quantitative analyses compared responses for pre-pandemic EYACS (n = 14) and pandemic EYACs (n = 26). A thematic analysis of the interview transcripts of pandemic EYACS (n = 14) was conducted. Pandemic EYACs experienced non-significant but higher communal coping, benefit finding, negative emotional experiences, and caregiver strain than pre-pandemic EYACs. Thematic analysis revealed that the pandemic negatively affected EYACs' caregiving efficacy, personal well-being, interpersonal dynamics, and bereavement; shifts to remote work and schooling were reported as benefits. The findings can inform the design of resources to support EYACs whose parents died during the pandemic and who are navigating the healthcare system today.

Adult sibling-related experiences while caring for a parent diagnosed with a blood cancer.

INTRODUCTION: An older parent's blood cancer diagnosis impacts the entire family system, including adult siblings, an often overlooked subsystem of the family. Yet, adult siblings are typically involved in their parents' care needs. We explored sibling-related experiences adult child caregivers identify while caring for a parent diagnosed with a blood cancer to capture information useful for caregiving intervention development. METHOD: Fifteen adult child caregivers with at least 1 sibling participated in an in-depth, semistructured interview. Participants were 87% white and 80% daughters. A majority of caregivers were in midlife (M age = 44), with parents diagnosed between age 56 and 90. A thematic analysis was conducted on transcripts using the constant comparative method. RESULTS: Caregivers described 3 types of sibling-related experiences that centered on (a) caregiving responsibilities (e.g., sharing/not sharing tasks; challenging feelings about lack of involvement); (b) expectations about the caregiver role (e.g., gender, family status, and birth order expectations); and (c) coping together and apart (e.g., receiving information together, enhanced relationships, divergent maladaptive coping). DISCUSSION: Findings illustrate how a parent's blood cancer diagnosis can enhance the sibling bond and family system as well as contribute to tension, particularly regarding the experiences of not sharing caregiving tasks or having divergent approaches to coping. Findings also provide insight into areas in which supportive interventions or resources are needed (e.g., helping siblings talk about caregiving involvement) to promote healthy family functioning after a blood cancer diagnosis. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Differences in stakeholder-reported barriers and implementation strategies between counties with high, middle, and low HPV vaccine initiation rates: a mixed methods study.

BACKGROUND: A greater understanding of the county-level differences in human papillomavirus (HPV) vaccination rates could aid targeting of interventions to reduce HPV-related cancer disparities. METHODS: We conducted a mixed-methods study to compare the stakeholder-reported barriers and efforts to increase HPV vaccination rates between counties within the highest, middle, and lowest HPV vaccine initiation (receipt of the first dose) rates among 22 northern Florida counties. Between August 2018 and April 2019, we recruited stakeholders (n = 68) through purposeful and snowball sampling to identify potential participants who were most knowledgeable about the HPV vaccination activities within their county and would represent a variety of viewpoints to create a diverse picture of each county, and completed semi-structured interviews. County-level HPV vaccine initiation rates for 2018 were estimated from the Florida Department of Health's immunization registry and population counts. Implementation strategies were categorized by level of importance and feasibility using the Expert Recommendations for Implementing Change (ERIC) taxonomy. We compared the barriers and implementation strategies for HPV vaccination between tercile groups of counties by HPV vaccine initiation rates: highest (18 stakeholders), middle (27 stakeholders), and lowest (23 stakeholders). RESULTS: The majority of the 68 stakeholders were female (89.7%), non-Hispanic white (73.5%), and represented a variety of clinical and non-clinical occupations. The mentioned barriers represented five themes: healthcare access, clinician practices, community partnerships, targeted populations, and cultural barriers. Within themes, differences emerged between county terciles. Within healthcare access, the highest rate county stakeholders focused on transportation, lowest rate county stakeholders focused on lack of clinicians, and middle county stakeholders mentioned both. The number of ERIC quadrant I strategies, higher feasibility, and importance described decreased with the tercile for HPV vaccination: highest = 6, middle = 5, and lowest =3 strategies. CONCLUSIONS: The differing barriers and strategies between the highest, middle, and lowest vaccination rate counties suggest that a tailored and targeted effort within the lowest and middle counties to adopt strategies of the highest rate counties may reduce disparities.

Practicing Mindfulness through mHealth Applications: Emerging Adults' Health-Enhancing and Inhibiting Experiences.

Mindfulness-based interventions (MBIs) and practices (MBPs) can promote better health outcomes. Although MBIs and MBPs were developed to be delivered in-person, mobile health (mHealth) tools such as apps have made these more accessible. Mindfulness apps (MAs) are popular among emerging adults (EAs) who have the highest ownership of smartphones and who are also at risk for distress. While adverse effects have been observed with MBIs/MBPs, this has not been examined when mindfulness is practiced using apps. We interviewed EAs (n = 22) to capture their motivations for using these apps and identified health-inhibiting and enhancing experiences. Data were thematically analyzed using the constant comparative method. Motivations for app use included accessibility, convenience, and stress/health management. EAs described health-enhancing outcomes (reduced distress, improved physical symptoms, increased focus) and health-inhibiting outcomes (worsened distress, performance uncertainty, dependency development, worsened physical health). They provided suggestions for improving apps (e.g., feedback option). These findings illustrate benefits and risks that EAs may encounter when practicing mindfulness using apps, which can inform the best practices for app design.

A lifespan approach to understanding family caregiver experiences of a blood cancer diagnosis.

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.

Parents Caring for Children Diagnosed with a Blood Cancer from Infancy to Emerging Adulthood: A Life span Perspective.

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.

Coping with breast cancer together: Challenging topics for mothers and their adolescent-young adult (AYA) daughters.

Background. The mother-daughter relationship can be central to women who are coping with breast cancer and provide a key source of support. However, the adolescent and young adult (AYA) daughters of diagnosed mothers have been known to exhibit notable distress during this time, withdrawing and avoiding communication, further challenging their ability to cope together. Objective. We sought to identify challenging topics that contribute to this avoidant mother-daughter communication pattern, as a first step in helping mothers and AYA daughters facilitate health-promoting communication. Methods. We examined thematically analyzed transcripts of one-on-one, in-depth, semi-structured interviews with 27 women (12 mother-daughter dyads). Results. We to identified 3 broad topics that were challenging to discuss: daughters' future breast cancer risk; emotionally related concerns; and clinical and physical aspects of disease. Thematic properties illustrate the challenging nature of each topic that informed their ability to communally cope together. Implications. Findings provide an initial roadmap for developing communication skills interventions that help mothers and AYA daughters navigate challenging conversations and facilitate communal coping.

Helping Diagnosed Mothers and Their Adolescent-Young Adult Daughters Navigate Challenging Breast Cancer Conversations.

Background: Mothers diagnosed with breast cancer describe daughters as a critical source of support. Talking about breast cancer is especially distressing and challenging for mothers and their adolescent-young adult (AYA) daughters. Objective: The over-arching study aim was to generate findings to integrate into an intervention to enhance diagnosed mothers' and AYA daughters' communication skills by identifying approaches they find helpful when talking about cancer. Methods: We recruited 27 women (12 dyads). Diagnosed mothers and their AYA daughters (aged 18-29) participated in individual, in-depth, semi-structured interviews. Transcripts were thematically analyzed. Mothers'/daughters' perspectives were compared/ triangulated. Results: Both mothers and daughters identified 3 approaches that helped them navigate cancer communication: (mothers) initiate conversations, keep communication positive, and limit cancer conversations. Only mothers reported it was helpful to downplay the seriousness of cancer. Only daughters identified it was important for them to reframe their perspective of mothers' disclosures. Conclusions: Findings provide clinicians like nurses and families with a "psychosocial map" of communication approaches and associated strategies mothers and AYA daughters can use to talk about breast cancer in ways that promote daughters' comfort and/or alleviate distress. Implications for Practice: Findings capture communication skills to focus on when tailoring developmentally focused interventions targeting diagnosed mothers and AYA daughters. Nurses can translate findings into practice to help patients talk to AYA daughters about cancer, thereby promoting a family-centered cancer care approach. What Is Foundational: AYA daughters are especially distressed talking about cancer with their diagnosed mothers. They can both use communication strategies to enhance their communal coping.

Blood cancer caregiving during COVID-19: understanding caregivers' needs.

The COVID-19 pandemic likely exacerbated caregiving challenges for caregivers of parents diagnosed with a blood cancer. Providing care during a public health crisis presents a complex web of uncertainties regarding cancer care, personal health, and COVID-19 risk. Identifying caregivers' uncertainty experiences during the COVID-19 pandemic can be a first step in learning where to direct resources or alter policies to ensure that they can not only perform their caregiver role but also cope in health-promoting ways. Using uncertainty management theory, this study explored how the pandemic has impacted adult child caregivers' experiences caring for a parent diagnosed with a blood cancer, as well as their experiences of uncertainty and uncertainty management. As part of a larger study on blood cancer caregivers' needs, a survey was administered from March 30 to June 1, 2020, to recruit caregivers through the Leukemia and Lymphoma Society. A qualitative and quantitative content analysis was conducted on open-ended responses from 84 caregivers. Caregivers described changes illustrating the complexity of providing care during a pandemic: (a) increased fears and uncertainty-related distress, b) reduced in-person care opportunities, (c) increased isolation, and (d) enhanced family communication. Caregivers with parents diagnosed with acute blood cancers used significantly more uncertainty management strategies and had more sources of uncertainty than caregivers with parents living with chronic blood cancer types. Findings highlight the need for supportive services to help caregivers manage uncertainty and improve their capacity to provide care in an unpredictable global health crisis. Such support may reduce poor psychosocial outcomes.

PGx in psychiatry: Patients' knowledge, interest, and uncertainty management preferences in the context of pharmacogenomic testing.

OBJECTIVE: Pharmacogenomic testing (PGx) is expanding into psychiatric care. PGx could potentially offer a unique benefit to psychiatric patients, providing information about patients' reaction to medications that could reduce the time and financial burdens of drug optimization. The aims of this study were to: (1) examine psychiatry patients' familiarity and interest in PGx, and (2) explore how Uncertainty Management Theory relates to PGx testing in psychiatry. METHOD: We surveyed psychiatric patients, measuring their PGx familiarity and interest, attitudes toward PGx testing, and preference for managing illness uncertainty. RESULTS: We analyzed data from 598 patients. Patients' familiarity of PGx was low, but interest was high. Thirty percent of patients were familiar with the test from communication with their healthcare provider or their own online health information seeking. A preference for seeking information was a significant positive predictor of testing interest (p < .001). CONCLUSION: Psychiatric patients were interested in PGx testing, regardless of their uncertainty management preferences. PRACTICE IMPLICATIONS: This study is one of the first to examine psychiatric patients' perspectives on PGx testing in mental health care. Our findings show that psychiatric patients are interested in the test and are familiar enough with PGx to be included in future research on the topic.