The lived experience of facioscapulohumeral muscular dystrophy: A systematic review and synthesis of the qualitative literature.

INTRODUCTION: In this review we sought to characterize the lived experience of people living with FSHD (pwFSHD) to help clinicians to orient their services to the needs of these individuals. METHODS: Five electronic databases were systematically searched for qualitative research studies containing quotations from pwFSHD. ENhancing Transparency in REporting the Synthesis of Qualitative research and Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines informed the methodology. Study quality was assessed using the Critical Appraisal Skills Programme Checklist tool, which measures the methodological quality of qualitative research. Data extracted from included studies were analyzed using thematic synthesis. RESULTS: Ninety-nine pwFSHD took part in the six studies included in this review - from research teams based in two countries. Five descriptive themes emerged: "Engaging with life as symptoms progress"; "The emotional journey"; "A family burden to bear"; "Social connection and disconnection"; and "Tension between visibility and invisibility." From these, two analytical themes were derived: "The emotional challenge of continuing and intensifying adaptation" and "The relational burden of rare disease." DISCUSSION: The lived experience of pwFSHD is characterized by physical, emotional, and social challenges that impact on engagement with life, particularly as symptoms progress. Further research is needed to provide a fuller understanding of the experience of pain in FSHD and of the lived experience of FSHD across cultures.

Case Conceptualizing in Acceptance and Commitment Therapy for Moral Injury: An Active and Ongoing Approach to Understanding and Intervening on Moral Injury.

Acceptance and Commitment Therapy for Moral Injury (ACT-MI; 10-11), is an application of Acceptance and Commitment Therapy principles designed to help individuals live their values, even in the presence of moral pain. ACT-MI differs from other emerging treatments for moral injury in that ACT-MI is not based on a traditional syndromal approach to conceptualizing moral injury, which treats moral injury as a collection of signs and symptoms to be reduced. Rather than assuming moral injury causes suffering through a constellation of symptoms that a person has, in ACT-MI, moral injury is defined by what a person does in response to moral pain. Consistent with this framework, we present a unique approach to moral injury case conceptualization that emphasizes function over form, providing clients the opportunity to break free from the patterns of behavior that cause moral injury-related suffering to persist. Rooted in approaches to conceptualizing that have demonstrated utility in extant interventions (e.g., ACT), ACT-MI clinicians conduct ongoing functional analyses to inform case conceptualization and intervention. Functional analysis is used to disrupt the processes maintaining moral injury, as the client and therapist work to identify and intervene on the behaviors reinforcing avoidance and control of painful internal experiences causing moral injury. In the current article, we guide the reader through a framework for applying functional analysis to the conceptualization of moral injury where the reinforcers driving moral injury are explored. We also provide examples of questions that can be used to help uncover the functions of moral injury consistent behavior. Case examples based on our experiences treating moral injury are presented to demonstrate how various types of morally injurious events can evoke different features of moral pain which in turn motivate different repertoires of avoidance and control. These inflexible patterns of avoidance and control create suffering by engaging in behavior designed to escape moral pain, such as social isolation, spiritual disconnection, reduced self-care, suicidal ideation, and substance use. We discuss how to target this suffering using functional analysis to guide treatment decisions, matching interventional processes within ACT-MI to the specific functions that moral injury-related behavior is serving for an individual. We suggest that the use of functional analytic case formulation procedures described herein can assist clients in disrupting behavioral patterns maintaining moral injury and thereby free them to pursue lives of greater meaning and purpose.

Cultivating psychological flexibility to address religious and spiritual suffering in moral injury.

In the current paper, we aim to expand the dialogue about applying psychological flexibility processes to moral injury-related spiritual suffering using Acceptance and Commitment Therapy (ACT). Psychological flexibility is the process of practicing present moment awareness and openness to experiences of emotions and thoughts, while also choosing to engage in actions that are consistent with one's values. This open, aware, and engaged approach to life fits well with spiritual endeavors. We provide a framework and a case example illustrating how spiritual care providers and Chaplains can use psychological flexibility processes to target spiritual suffering in the context of moral injury.

A contextual behavioral approach for responding to moral dilemmas in the age of COVID-19.

Prior pandemics and current news stories suggest that a "second pandemic" of potentially devastating mental health consequences will follow the COVID-19 pandemic. Given the changing contextual demands associated with the pandemic for many people, the mental health consequences of COVID-19 are likely to include exposure to a range of moral dilemmas. Such dilemmas may set the stage for the development of moral distress and moral injury in a broad range of contexts from the ER to the grocery store. In the current paper we offer an approach to responding to moral dilemmas presented by COVID-19. We propose a contextual behavioral model of moral injury that is relevant to those experiencing moral pain associated with the COVID-19 pandemic. Based on this model, we offer two different approaches to intervening on COVID-19-related moral dilemmas. First, we propose the use of Acceptance and Commitment Therapy for Moral Injury (ACT-MI) among individuals suffering from moral injury. Second, to intervene on moral dilemmas at the level of the group, we propose the use of the Prosocial intervention. We offer case examples describing ACT-MI and Prosocial to highlight how these interventions might be applied to moral-dilemma-related concerns during the COVID-19 pandemic and discuss implications for future research.

A Qualitative Examination of VA Chaplains' Understandings and Interventions Related to Moral Injury in Military Veterans.

This study examines VA chaplains' understandings of moral injury (MI) and preferred intervention strategies. Drawing qualitative responses with a nationally-representative sample, content analyses indicated that chaplains' definitions of MI comprised three higher order clusters: (1) MI events, (2) mechanisms in development of MI, and (3) warning signs of MI. Similarly, chaplains' intervention foci could be grouped into three categories: (1) pastoral/therapeutic presence, (2) implementing specific interventions, and (3) therapeutic processes to promote moral repair. Findings are discussed related to emerging conceptualizations of MI, efforts to adapt existing evidence-based interventions to better address MI, and the potential benefits of better integrating chaplains into VA mental health service delivery.

Development and evaluation of the Expressions of Moral Injury Scale-Military Version.

There is consensus that military personnel can encounter a far more diverse set of challenges than researchers and clinicians have historically appreciated. Moral injury (MI) represents an emerging construct to capture behavioural, social, and spiritual suffering that may transcend and overlap with mental health diagnoses (e.g., post-traumatic stress disorder and major depressive disorder). The Expressions of Moral Injury Scale-Military Version (EMIS-M) was developed to provide a reliable and valid means for assessing the warning signs of a MI in military populations. Drawing on independent samples of veterans who had served in a war-zone environment, factor analytic results revealed 2 distinct factors related to MI expressions directed at both self (9 items) and others (8 items). These subscales generated excellent internal consistency and temporal stability over a 6-month period. When compared to measures of post-traumatic stress disorder, major depressive disorder, and other theoretically relevant constructs (e.g., forgiveness, social support, moral emotions, and combat exposure), EMIS-M scores demonstrated strong convergent, divergent, and incremental validity. In addition, although structural equation modelling findings supported a possible general MI factor in Study 2, the patterns of associations for self- and other-directed expressions yielded evidence for differential validity with varying forms of forgiveness and combat exposure. As such, the EMIS-M provides a face valid, psychometrically validated tool for assessing expressions of apparent MI subtypes in research and clinical settings. Looking ahead, the EMIS-M will hopefully advance the scientific understanding of MI while supporting innovation for clinicians to tailor evidence-based treatments and/or develop novel approaches for addressing MI in their work.

Theodicies and professional quality of life in a nationally representative sample of chaplains in the veterans' health administration.

This study examined the role of theodicies or theological/philosophic attempts to resolve existential dilemmas related to evil and human suffering in chaplains' professional quality of life (ProQOL). A nationally representative sample of 298 VHA chaplains completed the recently developed Views of Suffering Scale (Hale-Smith, Park, & Edmondson, 2012 ) and ProQOL-5 (Stamm, 2010 ). Descriptive results revealed that 20-50% endorsed strong theistic beliefs in a compassionate deity who reciprocally suffers with hurting people, God ultimately being responsible for suffering, and that suffering can provide opportunities for intimate encounters with God and personal growth. Other results indicated that chaplains' beliefs about human suffering were differentially linked with their sense of enjoyment/purpose in working with veterans. These results suggest that theodicies might serve as a pathway to resilience for individuals in spiritual communities and traditions in USA, particularly for clinicians and ministry professionals who are committed to serving the needs of traumatized persons.

Professional Quality of Life and Changes in Spirituality Among VHA Chaplains: A Mixed Methods Investigation.

A mixed method design was implemented to examine the spirituality and emotional well-being of Veterans Health Administration (VHA) chaplains and how potential changes in spirituality and emotional well-being may affect their professional quality of life. Four distinct categories of changes emerged from the narrative statements of a nationally representative sample of 267 VHA chaplains: (1) positive changes (e.g., increased empathy), (2) negative changes (e.g., dysthymic mood, questioning religious beliefs), (3) combination of positive and negative changes, and (4) no change (e.g., sustenance through spirituality or self-care). Most chaplains reported positive (37%) or no change (30%) in their spirituality and/or emotional well-being. However, quantitative analyses revealed that chaplains who reported negative changes endorsed greater burnout and secondary traumatic stress. Overall, these findings suggest VHA chaplains are predominantly spiritually resilient, but negative changes in the spiritual domain can occur, potentially increasing the risk of adverse changes in professional quality of life.

Adverse childhood experiences and risk for suicidal behavior in male Iraq and Afghanistan veterans seeking PTSD treatment.

OBJECTIVE: Adverse childhood experiences (ACEs) are associated with increased risk for suicide and appear to occur in disproportionately high rates among men who served in the U.S. military. However, research has yet to examine a comprehensive range of ACEs among Iraq/Afghanistan veterans with combat-related posttraumatic stress disorder (PTSD) or whether these premilitary stressors may contribute to suicidal behavior in this highly vulnerable population. METHOD: A sample of 217 men entering a residential program for combat-related PTSD completed measures for ACEs, combat exposure, and lifetime suicidal ideation and attempts. RESULTS: The majority of patients had experienced multiple types of adversity or traumas during childhood/adolescence. In particular, 83.4% endorsed at least 1 ACE category and 41.5% reported experiencing 4 or more ACEs. When accounting for effects of deployment-related stressors, we further found that accumulation of ACEs was uniquely linked with thoughts of suicide or attempts among these patients. Namely, for every 1-point increase on the ACE Questionnaire, veterans' risk of suicidal ideation and attempts increased by 23% and 24%, respectively. CONCLUSION: This brief report provides initial evidence that veterans seeking treatment for combat-related PTSD often have extensive histories of premilitary stressors that may increase suicide risk beyond probable deployment-related traumas. (PsycINFO Database Record

History of loss of consciousness with mild traumatic brain injury affects PTSD symptom presentation in treatment-seeking Iraq/Afghanistan veterans.

OBJECTIVE: This study was conducted (1) to examine differences in post-traumatic stress disorder (PTSD) symptoms, perceived quality-of-life (QoL) and post-concussive symptoms (PCS) among veterans who experienced deployment-related mild traumatic brain injuries (mTBIs) with or without loss of consciousness (LOC) and (2) to test the additive role of PCS on QOL. DESIGN: Two hundred and twelve Iraq/Afghanistan veterans who were admitted to a residential programme for PTSD were assessed shortly following intake. A MANCOVA was conducted to examine QoL, PTSD symptom domains and PCS across the No LOC and LOC groups. Multivariate regression models were conducted to examine whether prevalence of PCS might be uniquely linked with veterans' QoL (physical, psychological and social). RESULTS: When controlling for combat exposure (CE), LOC status was uniquely linked with avoidance symptomatology, Psychological QoL and PCS; LOC status was not significantly linked with other domains of PTSD or QoL. When controlling for CE and PTSD, PCS was similarly linked with QoL in the psychological domain, but not Physical or Social QoL. CONCLUSION/IMPLICATIONS: LOC associated with a mTBI may contribute to behavioural avoidance and poorer psychological well-being among veterans seeking treatment for PTSD. In addition, PCS associated with mTBI may diminish Psychological QoL for veterans seeking treatment for PTSD.

Moral injury: A new challenge for complementary and alternative medicine.

Moral injury represents an emerging clinical construct recognized as a source of morbidity in current and former military personnel. Finding effective ways to support those affected by moral injury remains a challenge for both biomedical and complementary and alternative medicine. This paper introduces the concept of moral injury and suggests two complementary and alternative medicine, pastoral care and mindfulness, which may prove useful in supporting military personnel thought to be dealing with moral injury. Research strategies for developing an evidence-base for applying these, and other, complementary and alternative medicine modalities to moral injury are discussed.

Prospective associations between changes in mental health symptoms and health-related quality of life in veterans seeking posttraumatic stress disorder residential treatment.

BACKGROUND AND OBJECTIVES: This study examined prospective associations between changes in mental health symptoms (posttraumatic stress disorder [PTSD], depression) and health-related quality of life (physical health, psychological well-being) for veterans with PTSD. DESIGN: This study focused on 139 patients who completed a residential treatment program for PTSD in the Veterans Health Administration. METHODS: Patients completed the veteran-specific, 12-item Medical Outcomes Study Short Form, PTSD Checklist - Military version, and Beck Depression Inventory at pre-treatment, discharge, and a four-month follow-up. When accounting for demographic factors, combat exposure, and baseline scores on the respective outcome variables (e.g. mental health, physical health, PTSD, and depressive symptoms), a series of multivariate analyses were conducted for treatment-related changes in mental and physical health on the outcome measures. RESULTS: Reductions in PTSD symptomatology during the treatment period were prospectively linked with better health-related outcomes at the four-month follow-up. In addition, improved physical health and psychological well-being during treatment were each similarly associated with better PTSD and depression outcomes in the months following treatment. CONCLUSIONS: Addressing concerns in mental and physical health might have synergistic effects across both domains, supporting the need for holistic models and integrated health care strategies for treating veterans with PTSD.

Suicidal behavior and spiritual functioning in a sample of Veterans diagnosed with PTSD.

BACKGROUND: Spiritual well-being has been lauded to exert a protective effect against suicidal behavior. This study examines the characteristics of spiritual functioning and their association with a self-reported history of suicidal thoughts and behavior in a sample of Veterans being treated for post-traumatic stress disorder (PTSD). METHODS: The sample includes 472 Veterans admitted to a PTSD Residential Rehabilitation Program. Measures included the Brief Multidimensional Measure of Religiousness and Spirituality, PTSD Checklist--Military Version, Combat Experiences Scale, and individual items pertaining to history of suicidal thoughts and attempts, spiritual practices, and select demographics. RESULTS: Problems with forgiveness and negative religious coping were uniquely associated with suicide risk, above and beyond age, gender, or ethnicity, combat exposure, and severity of PTSD symptomatology. Organizational religiousness was associated with decreased risk for thinking about suicide in the presence of these covariates. Daily spiritual experiences were inversely associated with suicidal thoughts. Differences in spirituality factors did not distinguish Veterans with both suicidal ideation and prior attempts from those who had ideations absent any prior attempts. CONCLUSIONS: The findings suggest that enhanced or diminished spiritual functioning is associated with suicidal thoughts and attempts among Veterans dealing with PTSD.

Spirituality factors in the prediction of outcomes of PTSD treatment for U.S. military veterans.

Spirituality is a multifaceted construct that might affect veterans' recovery from posttraumatic stress disorder (PTSD) in adaptive and maladaptive ways. Using a cross-lagged panel design, this study examined longitudinal associations between spirituality and PTSD symptom severity among 532 U.S. veterans in a residential treatment program for combat-related PTSD. Results indicated that spirituality factors at the start of treatment were uniquely predictive of PTSD symptom severity at discharge, when accounting for combat exposure and both synchronous and autoregressive associations between the study variables, ßs = .10 to .16. Specifically, veterans who scored higher on adaptive dimensions of spirituality (daily spiritual experiences, forgiveness, spiritual practices, positive religious coping, and organizational religiousness) at intake fared significantly better in this program. In addition, possible spiritual struggles (operationalized as negative religious coping) at baseline were predictive of poorer PTSD outcomes, ß = .11. In contrast to these results, PTSD symptomatology at baseline did not predict any of the spirituality variables at posttreatment. In keeping with a spiritually integrative approach to treating combat-related PTSD, these results suggest that understanding the possible spiritual context of veterans' trauma-related concerns might add prognostic value and equip clinicians to alleviate PTSD symptomatology among those veterans who possess spiritual resources or are somehow struggling in this domain.

Residential treatment for combat-related posttraumatic stress disorder: identifying trajectories of change and predictors of treatment response.

BACKGROUND: Combat-related posttraumatic stress disorder (PTSD) can be a difficult condition to treat and has been associated with serious medical and economic issues among U.S. military veterans. Distinguishing between treatment responders vs. non-responders in this population has become an important public health priority. This study was conducted to identify pre-treatment characteristics of U.S. veterans with combat-related PTSD that might contribute to favorable and unfavorable responses to high value treatments for this condition. METHOD: This study focused on 805 patients who completed a VHA PTSD residential program between 2000 and 2007. These patients completed the PTSD Clinical Checklist at pre-treatment, post-treatment, and a four-month follow-up assessment. Latent growth curve analysis (LCGA) was incorporated to determine trajectories of changes in PTSD across these assessments and whether several key clinical concerns for this population were associated with their treatment responses. STUDY FINDINGS: LCGA indicated three distinct trajectories in PTSD outcomes and identified several clinical factors that were prospectively linked with changes in veterans' posttraumatic symptomatology. When compared to a group with high PTSD symptom severity that decreased over the program but relapsed at follow-up (41%), the near half (48.8%) of the sample with an improving trajectory had less combat exposure and superior physical/mental health. However, when compared to a minority (10.2%) with relatively low symptomatology that also remained somewhat stable, patients in the improving group were younger and also reported greater combat exposure, poorer physical/mental health status, and more problems with substance abuse before the start of treatment. CONCLUSIONS: Findings suggest that veterans are most likely to benefit from residential treatment in an intermediate range of symptoms and risk factors, including PTSD symptom severity, history of combat exposure, and comorbid issues with physical/mental health. Addressing these factors in an integrative manner could help to optimize the effectiveness of treatments of combat-related PTSD in many cases.

Chaplaincy and mental health in the department of Veterans affairs and department of defense.

Chaplains play important roles in caring for Veterans and Service members with mental health problems. As part of the Department of Veterans Affairs (VA) and Department of Defense (DoD) Integrated Mental Health Strategy, we used a sequential approach to examining intersections between chaplaincy and mental health by gathering and building upon: 1) input from key subject matter experts; 2) quantitative data from the VA / DoD Chaplain Survey (N = 2,163; response rate of 75% in VA and 60% in DoD); and 3) qualitative data from site visits to 33 VA and DoD facilities. Findings indicate that chaplains are extensively involved in caring for individuals with mental health problems, yet integration between mental health and chaplaincy is frequently limited due to difficulties between the disciplines in establishing familiarity and trust. We present recommendations for improving integration of services, and we suggest key domains for future research.

Sleep quality among U.S. military veterans with PTSD: a factor analysis and structural model of symptoms.

Poor sleep quality among individuals with posttraumatic stress disorder (PTSD) is associated with poorer prognosis and outcomes. The factor structure of the most commonly employed measure of self-reported sleep quality, the Pittsburgh Sleep Quality Index (PSQI), has yet to be evaluated among individuals with PTSD. The current study sought to fill this gap among a sample of 226 U.S. military veterans with PTSD (90% with co-occurring mood disorders, 73.5% with substance use disorders). We evaluated the factor structure of the PSQI by conducting an exploratory factor analysis (EFA) in approximately half of the sample (n = 111). We then conducted a second EFA in the other split half (n = 115). Lastly, we conducted a path analysis to investigate the relations between sleep factors and PTSD symptom severity, after accounting for the relation with depression. Results suggested sleep quality can best be conceptualized, among those with PTSD, as a multidimensional construct consisting of 2 factors, Perceived Sleep Quality and Efficiency/Duration. After accounting for the association between both factors and depression, only the Perceived Sleep Quality factor was associated with PTSD (ß = .51). The results provide a recommended structure that improves precision in measuring sleep quality among veterans with PTSD.

Cannabis use among military veterans after residential treatment for posttraumatic stress disorder.

The present investigation prospectively evaluated whether treatment changes in PTSD symptom severity, among military Veterans in residential PTSD treatment, were related to cannabis use 4 months after discharge from residential rehabilitation. The sample was comprised of 432 male military Veteran patients (Mage = 51.06 years, SD = 4.17), who had a primary diagnosis of PTSD and were admitted to a VA residential rehabilitation program for PTSD. Results demonstrated that lower levels of change in PCL-M scores between treatment intake and discharge were significantly predictive of greater frequency of cannabis use at 4-month follow-up (p < .05), even after accounting for the effects of length of treatment stay and frequency of cannabis use during the 2 months before treatment intake. Furthermore, post hoc analyses revealed that less change in PTSD avoidance/numbing and hyperarousal symptom severity during treatment was significantly predictive of a greater frequency of cannabis use at 4-month follow-up, after controlling for relevant covariates. Notably, these effects were specific to cannabis and were not found for the other substances examined among this sample, including alcohol and opiates. Implications of the findings are discussed with regard to the extant literature and future directions.

Predicting mortality in veterans with posttraumatic stress disorder thirty years after Vietnam.

Previous research has demonstrated elevated mortality rates among Vietnam-era veterans with posttraumatic stress disorder, especially deaths resulting from nonmedical causes. However, information on the relative contribution of particular risk factors to increased mortality is limited. We used receiver operating characteristics methodology to identify patient-level characteristics that predicted 7-year mortality in 79,551 middle-aged, male, posttraumatic stress disorder-diagnosed outpatients seeking mental health treatment within the Veterans Affairs Health Care System between April 1, 1998 and September 30, 1998. Receiver operating characteristics models indicated that the strongest predictor of mortality was a recent history of medical hospitalization, followed by severity of medical diagnoses and presence of a substance disorder. Results highlight the importance of addressing comorbid medical illnesses and addictive disorders when caring for this population.

Substance abuse-related mortality among middle-aged male VA psychiatric patients.

OBJECTIVE: This study evaluated mortality and causes of death over a seven-year period among middle-aged male psychiatric patients with and without co-occurring substance use disorder. METHODS: This cohort study examined mortality among 169,051 male Vietnam-era veterans ages 40 to 59 treated for psychiatric disorders by the U.S. Department of Veterans Affairs (VA) between April and September 1998. Demographic variables, diagnoses, and prior hospitalizations were obtained from VA electronic medical records. Mortality status was obtained from VA benefits records. Cause-of-death data were purchased from the National Death Index for a random sample of 3,383 decedents. Mortality among psychiatric patients with and without diagnosed co-occurring substance use disorders was compared by logistic regression, with controls for demographic factors, psychiatric and medical diagnoses, and prior hospitalizations. Causes of death for psychiatric patients with and without co-occurring disorders were compared by chi square analyses. Results were compared to age- and race-matched norms for the U.S. population. RESULTS: The risk-adjusted probability of dying was 55% higher among psychiatric patients with co-occurring substance use disorders than among those without substance use disorders (OR=1.58-1.69). Overdoses and substance abuse-linked illnesses accounted for 27.6% of deaths among psychiatric patients with co-occurring substance use disorders, compared with only 8.8% of deaths among other psychiatric patients. CONCLUSIONS: Substance use disorders strongly contributed to premature death among male psychiatric patients. Secondary prevention is needed to reduce substance misuse and improve medical care for substance-related illnesses among psychiatric patients with co-occurring substance use disorders.