RESUMO
BACKGROUND: Family caregivers of patients with severe acute brain injury (SABI) admitted to intensive care units (ICUs) with coma experience heightened emotional distress stemming from simultaneous stressors. Stress and coping frameworks can inform psychosocial intervention development by elucidating common challenges and ways of navigating such experiences but have yet to be employed with this population. The present study therefore sought to use a stress and coping framework to characterize the stressors and coping behaviors of family caregivers of patients with SABI hospitalized in ICUs and recovering after coma. METHODS: Our qualitative study recruited a convenience sample from 14 US neuroscience ICUs. Participants were family caregivers of patients who were admitted with ischemic stroke, intracerebral hemorrhage, subarachnoid hemorrhage, traumatic brain injury, or hypoxic-ischemic encephalopathy; had experienced a comatose state for > 24 h; and completed or were scheduled for tracheostomy and/or gastrostomy tube placement. Participants were recruited < 7 days after transfer out of the neuroscience ICU. We conducted live online video interviews from May 2021 to January 2022. One semistructured interview per participant was recorded and subsequently transcribed. Recruitment was stopped when thematic saturation was reached. We deductively derived two domains using a stress and coping framework to guide thematic analysis. Within each domain, we inductively derived themes to comprehensively characterize caregivers' experiences. RESULTS: We interviewed 30 caregivers. We identified 18 themes within the two theory-driven domains, including ten themes describing practical, social, and emotional stressors experienced by caregivers and eight themes describing the psychological and behavioral coping strategies that caregivers attempted to enact. Nearly all caregivers described using avoidance or distraction as an initial coping strategy to manage overwhelming emotions. Caregivers also expressed awareness of more adaptive strategies (e.g., cultivation of positive emotions, acceptance, self-education, and soliciting social and medical support) but had challenges employing them because of their heightened emotional distress. CONCLUSIONS: In response to substantial stressors, family caregivers of patients with SABI attempted to enact various psychological and behavioral coping strategies. They described avoidance and distraction as less helpful than other coping strategies but had difficulty engaging in alternative strategies because of their emotional distress. These findings can directly inform the development of additional resources to mitigate the long-term impact of acute psychological distress among this caregiver population.
Assuntos
Cuidadores , Capacidades de Enfrentamento , Humanos , Cuidadores/psicologia , Coma , Adaptação Psicológica , Unidades de Terapia IntensivaRESUMO
BACKGROUND: Cardiac arrest (CA) survivors experience continuous exposures to potential traumas though chronic cognitive, physical and emotional sequelae and enduring somatic threats (ESTs) (i.e., recurring somatic traumatic reminders of the event). Sources of ESTs can include the daily sensation of an implantable cardioverter defibrillator (ICD), ICD-delivered shocks, pain from rescue compressions, fatigue, weakness, and changes in physical function. Mindfulness, defined as non-judgmental present-moment awareness, is a teachable skill that might help CA survivors cope with ESTs. Here we describe the severity of ESTs in a sample of long-term CA survivors and explore the cross-sectional relationship between mindfulness and severity of ESTs. METHODS: We analyzed survey data of long-term CA survivors who were members of the Sudden Cardiac Arrest Foundation (collected 10-11/2020). We assessed ESTs using 4 cardiac threat items from the Anxiety Sensitivity Index-revised (items range from 0 "very little" to 4 "very much") which we summed to create a score reflecting total EST burden (range 0-16). We assessed mindfulness using the Cognitive and Affective Mindfulness Scale-Revised. First, we summarized the distribution of EST scores. Second, we used linear regression to describe the relationship between mindfulness and EST severity adjusting for age, gender, time since arrest, COVID-19-related stress, and loss of income due to COVID. RESULTS: We included 145 CA survivors (mean age: 51 years, 52% male, 93.8% white, mean time since arrest: 6 years, 24.1% scored in the upper quarter of EST severity). Greater mindfulness (ß: -30, p = 0.002), older age (ß: -0.30, p = 0.01) and longer time since CA (ß: -0.23, p = 0.005) were associated with lower EST severity. Male sex was also associated with greater EST severity (ß: 0.21, p = 0.009). CONCLUSION: ESTs are common among CA survivors. Mindfulness may be a protective skill that CA survivors use to cope with ESTs. Future psychosocial interventions for the CA population should consider using mindfulness as a core skill to reduce ESTs.
Assuntos
COVID-19 , Parada Cardíaca , Atenção Plena , Humanos , Masculino , Pessoa de Meia-Idade , Feminino , Parada Cardíaca/complicações , Parada Cardíaca/terapia , Parada Cardíaca/psicologia , Ansiedade/epidemiologia , Sobreviventes/psicologiaRESUMO
OBJECTIVES: We sought to characterize psychosocial profiles of adaptation to neurofibromatosis (NF). METHODS: Participants (N = 224) completed self-report measures of psychosocial functioning, including risk (i.e., perceived stress, depression, anxiety) and resiliency (i.e., gratitude, optimism, coping, social support, mindfulness, empathy). We used a TwoStep hierarchical cluster analysis to determine clusters reflecting adaptation to NF. RESULTS: The analysis revealed two distinct groups, with the "Low Adaptation" group defined by high emotional distress and low resiliency (n = 130; 57% of participants), and the "High Adaptation" group defined by low emotional distress and high resiliency (n = 85; 37% of participants). Clusters differed significantly across nearly all criterion variables, as well as quality of life and pain interference. CONCLUSION: Both risk and resiliency factors are important for understanding psychosocial adaptation to NF. Findings suggest that clinical providers should prioritize screening and intervention methods targeting these variables to promote positive adaptation to NF. TRIAL REGISTRATION: ClinicalTrials.gov NCT03406208; https://clinicaltrials.gov/ct2/show/NCT03406208 (Archived by WebCite at http://www.webcitation.org/72ZoTDQ6h ).
Assuntos
Adaptação Psicológica , Neurofibromatoses , Humanos , Neurofibromatoses/psicologia , Resiliência Psicológica , RiscoRESUMO
BACKGROUND: Mindfulness-based interventions can support recovery from mild traumatic brain injury (mTBI). Although measurement is a key determinant of outcomes, there is no comprehensive assessment of measurement approaches used to capture outcomes of these programs. Here, we review the domains targeted, measurement techniques used, and domains and techniques most affected by mindfulness-based interventions for mTBI. METHODS: We conducted a scoping review. After screening and full-text review, we included 29 articles and extracted data related to measurement domains, techniques, and results. RESULTS: We identified 8 outcome domains, each with multiple subdomains. The most common domains were cognitive symptoms and general health/quality of life. No quantitative studies directly assessed sleep, physical-function, or pain-catastrophizing. Self-report was the most common measurement technique, followed by performance-based methods. Coping, somatic symptoms, emotional symptoms, stress response, and domains of cognition (particularly attention) were the most frequently improved domains. Qualitative results described benefits across all domains and suggested novel areas of benefit. Biomarkers did not reflect significant change. CONCLUSIONS: Mindfulness-based interventions for mTBI impact a range of clinical domains and are best captured with a combination of measurement approaches. Using qualitative methods and expanding the breadth of outcomes may help capture underexplored effects of mindfulness-based interventions for mTBI.
Assuntos
Concussão Encefálica , Atenção Plena , Adaptação Psicológica , Atenção/fisiologia , Concussão Encefálica/terapia , Humanos , Atenção Plena/métodos , Qualidade de VidaRESUMO
PURPOSE: Young onset dementias (YOD) - typically defined by symptom onset before age 65 - are frequently overlooked in medical and community settings. Persons with YOD and their spouses face logistical and emotional challenges on their journey to a diagnosis (e.g. uncertainty about symptoms, lack of medical knowledge, emotional distress). An in-depth understanding of couples' experiences before and immediately following a YOD diagnosis is warranted to inform early psychosocial services for couples. METHODS: We utilized dyadic qualitative semi-structured interviews (N = 23) to better understand the nuances of couples' pre-diagnostic and diagnostic experiences with YOD. We used a hybrid of deductive and inductive analytic strategies to identify couple-level themes. RESULTS: Fifteen couple-level themes were extracted within four domains: (1) early indicators of symptoms, (2) obtaining a diagnosis, (3) experiences with health care providers, and (4) emotional reactions to the diagnosis. Couples expressed difficulties communicating about early symptoms, receiving accurate and timely diagnostic information, and managing multiple emotions. They described the value of working together to manage care, gain information, establish positive relationships with providers, and promote adjustment. CONCLUSION: Findings highlight the shared experiences of couples during the early stages of YOD, including the importance of strong communication with each other and providers. Early and accessible psychosocial services that help couples cope with and communicate about individual and shared stressors are warranted.
Assuntos
Demência , Cônjuges , Humanos , Idoso , Cônjuges/psicologia , Adaptação Psicológica , Pessoal de Saúde/psicologia , Emoções , Demência/diagnóstico , Demência/psicologiaRESUMO
OBJECTIVES: To compare characteristics of those who do and do not sustain subsequent traumatic brain injuries (TBIs) following index TBI and to identify reinjury risk factors. DESIGN: Secondary data analysis of an ongoing longitudinal cohort study. SETTING: TBI Model Systems Centers. PARTICIPANTS: In total, 11 353 individuals aged 16+ years. MAIN OUTCOME MEASURES: Ohio State University TBI Identification Method. RESULTS: In total, 7.9% of individuals reported sustaining a TBI post-index TBI. Twenty percent of reinjuries occurred within a year of the index TBI. Reinjury risk followed an approximate U-shaped distribution such that risk was higher in the first year, declined 2 to 10 years postinjury, and then increased after 10 years. A multivariable Weibull model identified predictors of reinjury: younger (<29 years) and middle-aged and older (50+ years) age at index TBI relative to middle age, pre-index TBI, pre-index alcohol and illicit drug use, incarceration history, and less severe index TBI. CONCLUSIONS: A subset of individuals who receive inpatient rehabilitation for TBI are at an increased risk for reinjury, and an injury-prone phenotype may be characterized by engagement in risk behaviors. Factors associated with reinjury risk may differ for younger versus middle-aged and older adults. Findings underscore the need for empirically informed risk stratification models to identify TBI survivors at risk for reinjury.
Assuntos
Lesões Encefálicas Traumáticas , Relesões , Idoso , Lesões Encefálicas Traumáticas/diagnóstico , Lesões Encefálicas Traumáticas/epidemiologia , Estudos de Coortes , Humanos , Estudos Longitudinais , Pessoa de Meia-Idade , Fatores de RiscoRESUMO
BACKGROUND: Neuro-ICU hospitalization for an acute neurological illness is often traumatic and associated with heightened emotional distress and reduced quality of life (QoL) for both survivors and their informal caregivers (i.e., family and friends providing unpaid care). In a pilot study, we previously showed that a dyadic (survivor and caregiver together) resiliency intervention (Recovering Together [RT]) was feasible and associated with sustained improvement in emotional distress when compared with an attention placebo educational control. Here we report on changes in secondary outcomes assessing QoL. METHODS: Survivors (n = 58) and informal caregivers (n = 58) completed assessments at bedside and were randomly assigned to participate together as a dyad in the RT or control intervention (both 6 weeks, two in-person sessions at bedside and four sessions via live video post discharge). We measured QoL domain scores (physical health, psychological, social relations, and environmental), general QoL, and QoL satisfaction using the World Health Organization Quality of Life Abbreviated Instrument at baseline, post treatment, and 3 months' follow-up. We conducted mixed model analyses of variance with linear contrasts to estimate (1) within-group changes in QoL from baseline to post treatment and from post treatment to 3 months' follow-up and (2) between-group differences in changes in QoL from baseline to post treatment and from post treatment to 3 months' follow-up. RESULTS: We found significant within-group improvements from baseline to post treatment among RT survivors for physical health QoL (mean difference 1.73; 95% confidence interval [CI] 0.39-3.06; p = 0.012), environmental QoL (mean difference 1.29; 95% CI 0.21-2.36; p = 0.020), general QoL (mean difference 0.55; 95% CI 0.13-0.973; p = 0.011), and QoL satisfaction (mean difference 0.87; 95% CI 0.36-1.37; p = 0.001), and those improvements sustained through the 3-month follow-up. We found no significant between-group improvements for survivors or caregivers from baseline to post treatment or from post treatment to 3 months' follow-up for any QoL variables (i.e., domains, general QoL, and QoL satisfaction together). CONCLUSIONS: In this pilot study, we found improved QoL among survivors, but not in caregivers, who received RT and improvements sustained over time. These RT-related improvements were not significantly greater than those observed in the control. Results support a fully powered randomized controlled trial to allow for a definitive evaluation of RT-related effects among dyads of survivors of acute brain injury and their caregivers.
Assuntos
Cuidadores , Qualidade de Vida , Adaptação Psicológica , Assistência ao Convalescente , Cuidadores/psicologia , Humanos , Unidades de Terapia Intensiva , Alta do Paciente , Projetos Piloto , Qualidade de Vida/psicologia , SobreviventesRESUMO
BACKGROUND: Mild traumatic brain injury (mTBI; concussion) is a common and costly public health concern that exhibits diverse patterns of recovery, making ascertainment of prognosis difficult. Interpersonal factors are critical determinants of health and linked to both adjustment to injury and illness and may critically impact mTBI outcomes. However, their potential role remains largely unexplored at present. OBJECTIVES: To provide a framework for incorporating interpersonal factors into the study and treatment of mTBI. METHODS: We provide a narrative summary of the existing literature on adjustment to mTBI and present an overview of interpersonal biopsychosocial frameworks for adjustment to injury and illness. RESULTS: We discuss ways of applying interpersonal framework models to the study of mTBI. In addition, we identified several factors or themes shared across frameworks that mTBI researchers and clinicians can integrate into their work. Finally, we discuss gaps in the literature and suggest directions for future research. CONCLUSIONS: Adding an interpersonal framework to established biopsychosocial models in mTBI would allow for novel opportunities for prediction of symptom course and for the development of novel interventions.
Assuntos
Concussão Encefálica/psicologia , Relações Interpessoais , HumanosRESUMO
Structural and systemic barriers entrenched in academia have sustained for decades, and resulted in a lack of diversity in leadership positions, inequitable workloads for women and underrepresented racial/ethnic groups, and increasing issues with retention of faculty, particularly following the COVID-19 pandemic. Increasing opposition to diversity, equity, and inclusion (DEI) efforts in higher education via legislation, policies, and general anti-DEI sentiment contextualizes the importance of prioritizing DEI. The goal of this commentary is to open discussion among academic institutions regarding changes in DEI culture that will facilitate the growth of diverse early-career faculty (ECF). We use an adapted framework which incorporates DEI into a faculty competency model to (i) guide our discussion of the rationale for restructuring academic systems to promote DEI and (ii) recommend strategies for institutional progress for ECF that can translate across academic institutions. Implementing policies and practices that seek to recruit, retain, and support historically underrepresented ECF are needed, and may involve faculty mentorship programs, establishing equitable funding mechanisms, reforming faculty evaluation practices, and examining and correcting inequities in faculty workloads. The onus is on institutions to recognize and replace the exclusionary practices and biases that have existed within their walls, and continuously promote and monitor their DEI efforts and initiatives to ensure their efficacy. Inclusive academic cultures that demonstrate their value of diversity and commitment to equity promotion at all levels of the organization, including among ECF, are necessary for ensuring excellence in scholarship in academia.
Existing structural and systemic barriers in academia have continued for decades, and resulted in a lack of diversity in leadership positions, inequitable workloads for underrepresented gender and racial/ethnic groups, and increasing issues with retention of faculty, particularly following the COVID-19 pandemic. We outline the need for promoting diversity, equity, and inclusion (DEI) practices in academia, and that it will involve changes to the existing structures within universities. This is especially important as we want our higher education workforce to reflect our increasingly diverse society in its own diversity, but current policies and structures do not promote diversity in our institutions and in our research. Our rationale for restructuring academic systems to promote DEI also stems from a need for behavioral medicine and research more broadly to recognize and challenge the biases and practices that sustain inequity in our researchfrom the questions we ask, the participants we include (and exclude), and the ways in which the system creates unnecessary barriers for researchers who try to mitigate or address these biases in our work. We recommend implementing strategies for institutional progress that benefit diverse early-career faculty including mentoring programs, developing funding opportunities, changing faculty evaluation practices, and creating equitable workloads.
Assuntos
Medicina do Comportamento , Humanos , Feminino , Pandemias , Mentores , Grupos RaciaisRESUMO
College-aged individuals with anxiety are vulnerable to developing persistent concussion symptoms, yet evidence-based treatments for this population are limited. Understanding these individuals' perspectives is critical for developing effective interventions. We conducted qualitative interviews with 17 college-aged individuals (18-24 years old) with a recent (≤10 weeks) concussion and at least mild anxiety (≥5 on the GAD-7 questionnaire) to understand the life impact of their concussion. We identified 5 themes: (1) disruption to daily activities (e.g., reduced participation in hobbies and physical activity); (2) disruption to relationships (e.g., reduced social engagement, feeling dismissed by others, stigma, and interpersonal friction); (3) disruptions in school/work (e.g., challenges participating due to light sensitivity, cognitive or sleep disturbance, and related emotional distress); (4) changes in view of the self (e.g., feeling "unlike oneself", duller, or more irritable), and (5) finding "silver linings" after the injury (e.g., increased motivation). Concussions impact the lives of college-aged individuals with co-occurring anxiety in a broad range of domains, many of which remain largely neglected in standard concussion clinical assessment and treatment. Assessing and addressing these issues has the potential to limit the negative impact of concussion, promote recovery, and potentially help prevent persistent concussion symptoms in this at-risk population.
Assuntos
Concussão Encefálica , Humanos , Adulto Jovem , Adolescente , Adulto , Concussão Encefálica/complicações , Concussão Encefálica/diagnóstico , Universidades , Instituições Acadêmicas , Ansiedade/epidemiologia , Transtornos de AnsiedadeRESUMO
BACKGROUND AND OBJECTIVES: Young-onset dementias (YODs) are a set of progressive illnesses that are stressful for both persons with the diagnosis and their care-partners. Although the stressors differ based on their roles and individual experiences, both individuals are at risk for heightened emotional distress (e.g., depression and anxiety). Understanding the unique stressors for each partner and adaptive coping strategies to manage these stressors is important for informing individual and couples-based psychosocial interventions. RESEARCH DESIGN AND METHODS: We conducted open-ended individual interviews with persons with YOD (N = 12) and their care-partners (i.e., romantic partner; N = 17) over live video. We utilized a hybrid of deductive and inductive analysis techniques to extract individual-level themes and subthemes regarding stressors and adaptive coping strategies. RESULTS: Persons with YOD identified stressors including burden of YOD symptoms, loss of familial roles, resentment toward partner, isolation, and fear of the future. Care-partners identified stressors including managing their partners' symptoms, increased responsibilities, caregiving role, loss of intimacy, social isolation, and grief. For adaptive coping strategies, persons with YOD endorsed use of acceptance, promotion of independence, social support, and engaging in pleasurable activities. Care-partners endorsed value of learning about the diagnosis, using resources, optimism, social support, and self-care. DISCUSSION AND IMPLICATIONS: Findings highlight the unique experiences of persons with YOD and their care-partners. Identified themes can be used to inform role-specific psychosocial interventions for both individuals and couples coping with YOD.
Assuntos
Cuidadores , Demência , Humanos , Cuidadores/psicologia , Demência/psicologia , Adaptação Psicológica , Apoio Social , PesarRESUMO
Objective: Chronic orofacial pain is prevalent and debilitating. Psychological and social factors place a heavy burden on this population but are often overlooked. Here, we offer the first comprehensive qualitative conceptualization of the challenges of living with chronic orofacial pain through a biopsychosocial perspective to inform multifaceted care for this population. Design: We employed a qualitative thematic analysis of open text responses using a hybrid inductive-deductive approach and a biopsychosocial framework. Methods: Two hundred and sixty participants with chronic orofacial pain responded to an open-ended question: "What is the biggest challenge you face in managing your condition?" by typing their responses into a text box as part of an online survey. We mapped responses onto biomedical, psychological, and social themes (deductive) and concurrently identified findings within each theme that emerged directly from the data (inductive). Results: Subthemes within the biomedical theme included challenges with biomedical pain management, medication side effects, sensory triggers, physical symptoms of stress/tension, and biological functions and related activities of daily living. Subthemes within the psychological theme included anxiety, depression, emotional symptoms of stress, unpredictability/uncertainty of pain, and psychological and cognitive aspects of medication management. Subthemes within the social theme included social relational, experience with providers, socioeconomics and access to care, and roles and responsibilities. Conclusion: Chronic orofacial pain is associated with multifaceted challenges. Consideration of individuals' experiences of biomedical, psychological, and social challenges in the assessment, referral, and treatment of chronic orofacial pain holds the potential to promote more comprehensive, patient-centered care for this population.
RESUMO
BACKGROUND AND OBJECTIVES: Young onset dementias (young onset dementia) produce a myriad of stressors for persons with young onset dementia and their caregivers, yet there is a critical shortage of supportive services that address their needs. To develop such services, it is necessary to first comprehensively understand persons' with young onset dementia and their caregivers' service preferences. Therefore, we conducted a meta-synthesis to integrate and summarize qualitative data on persons' with young onset dementia and caregivers' preferences for supportive services for young onset dementia, defined as support provided by medical providers, psychosocial interventions, and any other resources/services provided to promote positive adjustment in persons with young onset dementia and their caregivers. RESEARCH DESIGN AND METHODS: We searched five electronic databases for qualitative articles from inception to January 2020. We extracted and synthesized data from eligible articles using thematic analysis. After removal of duplicates, we screened 219 articles identified through database and hand searches. FINDINGS: Forty-three studies met our inclusion criteria. We extracted findings from these 43 studies on preferences within three a priori defined domains: 1) general characteristics of supportive services, 2) format and modality of supportive services, and 3) content for supportive services. Persons with young onset dementia and caregivers predominantly expressed common preferences, with some unique preferences based on their specific roles within the partnership. DISCUSSION AND IMPLICATIONS: Persons with young onset dementia and their caregivers endorsed largely overlapping preferences, including having direct contact with providers and the ability to participate together in programs that have content and skills relevant to their specific needs and challenges. Findings can directly inform the format, content, and procedures of supportive services for persons with young onset dementia and their caregivers.
Assuntos
Cuidadores , Demência , Atenção à Saúde , Humanos , Pesquisa QualitativaRESUMO
BACKGROUND AND OBJECTIVES: The coronavirus disease 2019 (COVID-19) pandemic created unexpected stressors for society and could disproportionately affect more vulnerable groups. One such group is couples facing young-onset dementias (YOD), who experience pandemic-induced stressors alongside ongoing YOD-related stressors (e.g., progressive symptoms, increased caregiving needs). Using a qualitative design, our objective was to characterize the experiences of couples living with YOD early in the COVID-19 pandemic and the impact on couples' 'relationships' and well-being. RESEARCH DESIGN AND METHODS: Couples (N = 23) of persons with YOD and their spousal caregivers participated in a 1 hour live video, joint interview during the early COVID-19 pandemic. We used a hybrid inductive-deductive coding approach to thematic analysis to extract findings within 2 a priori domains: (a) psychosocial stressors experienced during the early pandemic and (2) the impact of early pandemic stressors on couples' relationships and well-being. RESULTS: Thematic analyses revealed 6 main themes: (a) increased caregiving responsibilities, (b) increased uncertainty, (c) increased social isolation and disruptions in social support and medical care, (d) loss of meaningful activities and routines, (e) changes to the couple's relationship, and (f) heightened emotional distress. DISCUSSION AND IMPLICATIONS: The COVID-19 pandemic exacerbated relationship strain and distress among couples managing YOD. This population may face negative outcomes due to the dual impact of YOD- and pandemic-related stressors. It is imperative to provide timely resources and psychosocial support to couples facing YOD to mitigate the negative impact of such stressors on individual health and well-being and the couples' relationship together.
Assuntos
COVID-19 , Demência , Adaptação Psicológica , COVID-19/epidemiologia , Cuidadores/psicologia , Demência/psicologia , Humanos , PandemiasRESUMO
Persons living with young-onset dementia and their partners often experience elevated emotional distress as they cope with an unexpected progressive illness during an active life stage (typically ages 45-64 years). Despite their heightened emotional distress, psychosocial resources are both limited and lack the specificity to meet the unique needs of both partners. Our aim was to gain an in-depth understanding of the psychosocial treatment preferences of persons with young-onset dementia and their partners-an important first step in developing a tailored intervention. We conducted semi-structured dyadic interviews with persons with young-onset dementia and their partners (N = 23) and used a hybrid deductive-inductive approach to thematic analysis. We identified 12 themes across four domains: (1) perceptions of available and lacking resources, (2) preferences for program content, (3) preferences for program format, and (4) barriers and facilitators to participation. Couples indicated there is a lack of specific and family-oriented resources, which can create more stress and relationship strain. Couples endorsed support for a virtual, dyadic intervention delivered shortly after diagnosis focused on providing tools to cope with difficult emotions and symptom progression and enhance communication and meaningful daily living. They also identified potential barriers to program participation and offered suggestions to promote engagement. By using a qualitative approach, we were able to gather nuanced information that can be used to directly inform a feasible, accepted, and person-centered psychosocial intervention for persons with young-onset dementia and their partners.
Assuntos
Demência , Adaptação Psicológica , Comunicação , Demência/terapia , Emoções , Humanos , Pessoa de Meia-Idade , Pesquisa QualitativaRESUMO
Background: The return to participation in meaningful life roles for persons with acquired brain injury (pwABI) is a goal shared by pwABI, their families, clinicians, and researchers. Synthesizing how pwABI define participation will help to identify the aspects of participation important to pwABI and can inform a person-centered approach to participation outcome assessment. To-date, the qualitative synthesis approach has been used to explore facilitators and barriers of participation post-stroke, and views about participation among individuals with stroke in the UK. Objectives: This paper's objectives are to (1) conduct a scoping review of qualitative literature that defines and characterizes participation from the perspective of pwABI of any type, (2) synthesize how pwABI define and categorize participation, and (3) link the themes identified in the qualitative synthesis to the International Classification of Functioning, Disability, and Health (ICF) using standardized linking rules to enhance the comparability of our findings to other types of health information, including standardized outcome measures. Methods: We completed a scoping review of qualitative literature. Our search included PubMed, APA PsychInfo, CINAHL, and Embase databases and included articles that (1) had qualitative methodology, (2) had a sample ≥50% pwABI, (3) had aims or research questions related to the meaning, definition, perception, or broader experience of participation, and (4) were in English. Qualitative findings were synthesized using Thomas and Harden's methodology and resultant themes were linked to ICF codes. Results: The search identified 2,670 articles with 2,580 articles excluded during initial screening. The remaining 90 article abstracts were screened, and 6 articles met the full inclusion criteria for the qualitative synthesis. Four analytical themes emerged: (1) Essential Elements of Participation (2) How pwABI Approach Participation, (3) Where pwABI Participate, and (4) Outcomes of Participation. Each overarching theme included multiple descriptive themes. Conclusion: In this paper, we identified themes that illustrate key components of participation to pwABI. Our results provide insight into the complex perspectives about participation among pwABI and illustrate aspects of participation that should hold elevated importance for clinicians and researchers supporting participation of pwABI.
RESUMO
BACKGROUND: Neurodegenerative diseases (NDDs) are increasingly prevalent and radically alter the lives of individuals and their informal care partners (together called a dyad). As symptoms progress, dyads are at risk for elevated emotional distress and declines in relationship functioning and quality of life. Psychosocial interventions delivered to dyads early after diagnosis have successfully prevented chronic emotional distress across several chronic illnesses including cancer and acute brain injury. Dyads with NDD could benefit from such interventions, however, they are limited. Because NDDs have symptom profiles that are distinct from other chronic illnesses, they require a unique framework and interventions. Given the limited dyadic interventions and unified symptoms across NDDs, a transdiagnostic framework may help to enhance scalability and efficiency. To address this problem, we developed a transdiagnostic framework that cuts across NDD physical and emotional diagnoses to inform cost-effective and sustainable NDD dyadic interventions. METHODS: To develop this framework, we conducted: (1) a narrative review on dyadic adjustment and existent dyadic interventions for those with NDDs, and (2) integrated findings to develop our NDD transdiagnostic framework for dyadic interventions early after diagnosis. RESULTS: Findings revealed no existent dyadic interventions for NDDs delivered shortly after diagnosis. Among available interventions, all were delivered later in disease progression, thereby focusing on dyadic challenges at more advanced stages. In addition, although research emphasized the influence of individual, dyadic, and contextual factors on dyads' early adjustment to NDDs, no conceptual model has been developed. Informed by theory and current research, we introduce an NDD transdiagnostic framework for couples' early biopsychosocial adjustment. This framework includes NDD specific: contextual factors, illness-related factors, individual and dyadic stressors, adaptive coping strategies, and dyads' resources. CONCLUSIONS: Our NDD transdiagnostic framework can be used to inform early dyadic psychosocial interventions that cut across all NDDs. This approach has important implications for implementation and scalability.
Assuntos
Neoplasias , Doenças Neurodegenerativas , Adaptação Psicológica , Humanos , Neoplasias/psicologia , Doenças Neurodegenerativas/terapia , Qualidade de VidaRESUMO
OBJECTIVE: Emotional distress is common in both survivors and their informal caregivers following admission to a neuroscience intensive care unit (Neuro-ICU) and can negatively affect their individual recovery and quality of life. Neuro-ICU survivor-caregiver dyads can influence each other's emotional distress over time, but whether such influence emerges during dyadic treatment remains unknown. The present study involved secondary data analysis of Neuro-ICU dyads enrolled in a randomized clinical trial of a dyadic resiliency intervention, Recovering Together (RT), versus a health education attention placebo control to test dyadic similarities in emotional distress before and after treatment. METHOD: Data were collected from 58 dyads following Neuro-ICU admission. Emotional distress (depression, anxiety, and posttraumatic stress) was assessed at baseline, 6 weeks (postintervention), and 12 weeks later. Nonindependence within survivor-caregiver dyads was examined (i.e., correlations between cross-sectional symptoms and changes in symptoms over time); mutual influence of emotional functioning over time (i.e., "partner effects") was examined using cross-lagged path analyses. RESULTS: There were strong, positive cross-sectional correlations between survivor and caregiver distress at postintervention and follow-up and between changes in survivor and caregiver distress from baseline to postintervention and postintervention to follow-up. There were no partner effects. CONCLUSIONS: Neuro-ICU survivors and their informal caregivers show similar changes in emotional distress after treatment. These findings highlight the potential benefits of intervening on both survivor and caregiver distress following Neuro-ICU admission. (PsycInfo Database Record (c) 2022 APA, all rights reserved).
Assuntos
Cuidadores , Angústia Psicológica , Adaptação Psicológica , Cuidadores/psicologia , Estudos Transversais , Depressão/psicologia , Humanos , Unidades de Terapia Intensiva , Qualidade de Vida/psicologia , Sobreviventes/psicologiaRESUMO
PURPOSE/OBJECTIVE: Traumatic brain injuries (TBIs) are increasingly common and a major cause of death and long-term disability. Many individuals experience chronic stressors and adverse health outcomes, emphasizing the importance of cultivating resilience, (defined herein as individual, social, and systemic components engaged in response to the stressors that allow individuals to "bounce back," or move forward adaptively after TBI). Patients' perceptions of factors influencing resilience are critical to guide interventions that meet their needs. Here we offer the first metasynthesis of factors influencing resilience after TBI using a Social Ecological model framework. Research Methods/Design: We preregistered our metasynthesis on PROSPERO (CRD42021233975) and followed PRISMA guidelines. We searched 4 electronic databases for qualitative studies from inception up until June 2021. We included qualitative studies detailing perspectives of individuals with a history of moderate-severe TBI. We excluded case studies and systematic reviews. After removal of duplicates, we identified 124 articles for screening. We reviewed 49 articles for full text eligibility and included 38 studies. We extracted study characteristics and data (e.g., author interpretations and relevant quotes) relating to factors influencing resilience. RESULTS: We synthesized findings using a Social Ecological model framework to guide thematic analysis. Persons with TBI identified barriers and facilitators to resilience at individual (e.g., physical and cognitive challenges, coping behaviors), interpersonal, (e.g., stigma and isolation) and systemic (e.g., access to resources, rehabilitation support) levels. CONCLUSIONS/IMPLICATIONS: Considering multifaceted factors at individual, interpersonal and systemic levels in clinical, research, and policy-setting contexts is important for cultivating resilience and optimizing recovery after TBI. (PsycInfo Database Record (c) 2022 APA, all rights reserved).
Assuntos
Adaptação Psicológica , Lesões Encefálicas Traumáticas , Humanos , Lesões Encefálicas Traumáticas/psicologia , Estigma Social , Pesquisa QualitativaRESUMO
BACKGROUND AND OBJECTIVES: Diagnoses of young-onset dementias (YODs) are devastating for persons with dementia and spousal caregivers yet limited work has examined both partners' perceptions of challenges and coping after diagnosis. This qualitative study investigated the psychosocial stressors and adaptive coping strategies in couples diagnosed with YOD to inform the development of psychosocial support resources. RESEARCH DESIGN AND METHODS: We conducted live video dyadic interviews with couples (persons with YOD and spousal caregivers together; N = 23 couples). We transcribed interviews and coded data based on a hybrid deductive-inductive approach, with the structure of the coding framework informed by the stress and coping framework, and all codes derived from the data. We derived themes and subthemes related to psychosocial stressors and adaptive coping. RESULTS: We identified 5 themes related to psychosocial stressors: the impact of diagnosis, social and family relationships, changing roles and responsibilities, planning for an uncertain future, and couple communication and relationship strain. We identified 7 themes related to adaptive coping strategies: processing emotions and cultivating acceptance, promoting normalcy, efforts to preserve persons with YOD's independence and identity, collaborative and open communication, social support, meaning-making, humor, and positivity, and lifestyle changes and self-care. DISCUSSION AND IMPLICATIONS: We replicated several themes regarding stressors and adaptive coping strategies from prior YOD research and identified novel themes and subthemes related to dyadic stressors, sources of couples' relationship strain, and the ways in which couples effectively cope with YOD. Findings inform the development of dyadic interventions to reduce YOD-related distress for both persons with dementia and spousal caregivers.