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Building interventions when distress is under debate: a case study from Appalachia

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Abstract

Scholarship on idioms of distress has emphasized cross-cultural variation, but devoted less attention to intra-cultural variation—specifically, how the legitimacy of distress may vary according to the context in which it is expressed, social position, and interaction with medical categories of distress. This variation can pose challenges for interventionists seeking to establish culturally acceptable ways of identifying distress and creating relevant resources for recovery. We describe efforts over three years (2014–2016) to identify and adapt a culturally appropriate evidence-based intervention for depressed rural Appalachian women. Though the prevalence of depression among rural women is high, limited services and social barriers restrict treatment access. Formative research revealed varied understandings of distress. Depression was (a) medicalized as a treatable condition, (b) stigmatized as mental illness, (c) accepted as a non-pathological reaction to regional poverty and gendered caregiving responsibilities, (d) rejected as a worthy justification for seeking individual care, and (e) less represented in comparison to other competing forms of distress (i.e., multiple morbidities, family members’ distress). In a small pilot trial, we applied an implementation science perspective to identify and implement appropriate evidence-based programming for the context. We outline how we reached Appalachian women despite these diverse understandings of depression and established a flexible medicalization of depression that enabled us to legitimize care-seeking, work with varied rural healthcare professionals, and engender culturally relevant support. Our adaptation and implementation of the concept of “mental health recovery” enabled the development of programming that furthered non-pathological communicative distress while resisting the normalization that silences women in the context of deep health disparities.

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... However, prior research indicates a positive effect is associated with increased levels of social support (Grigorovich et al., 2017;Lacerda based interventions for individuals such as caregivers who live in rural areas and experience few services and social barriers that limit treatment. Treatment may be declined by caregivers in rural areas because depressive symptoms often have less priority when viewed along with other challenging issues (e.g., poverty, other illnesses) and the presence of stigma associated with being viewed by others as someone who has a mental illness (Snell-Rood et al., 2019). ...
... Social support and problem-solving skills training may be useful components to include in interventions to lessen depressive symptoms in caregivers. Rood et al., 2019). Other data also suggest no differences in depressive symptoms among rural and urban caregivers when comparing the internet or the telephone, suggesting either of these tools, in conjunction with other methods (e.g., video, written) may be used for supporting a large group of caregivers with depressive symptoms who have limited health services (Hicken et al., 2017). ...
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Figures in this Article Mental disorders in primary care are common, disabling, costly, and treatable.1- 5 However, they are frequently unrecognized and therefore not treated.2- 6 Although there have been many screening instruments developed,7- 8 PRIME-MD (Primary Care Evaluation of Mental Disorders)5 was the first instrument designed for use in primary care that actually diagnoses specific disorders using diagnostic criteria from the Diagnostic and Statistical Manual of Mental Disorders, Revised Third Edition9(DSM-III-R) and Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition10(DSM-IV). PRIME-MD is a 2-stage system in which the patient first completes a 26-item self-administered questionnaire that screens for 5 of the most common groups of disorders in primary care: depressive, anxiety, alcohol, somatoform, and eating disorders. In the original study,5 the average amount of time spent by the physician to administer the clinician evaluation guide to patients who scored positively on the patient questionnaire was 8.4 minutes. However, this is still a considerable amount of time in the primary care setting, where most visits are 15 minutes or less.11 Therefore, although PRIME-MD has been widely used in clinical research,12- 28 its use in clinical settings has apparently been limited. This article describes the development, validation, and utility of a fully self-administered version of the original PRIME-MD, called the PRIME-MD Patient Health Questionnaire (henceforth referred to as the PHQ). DESCRIPTION OF PRIME-MD PHQ ABSTRACT | DESCRIPTION OF PRIME-MD PHQ | STUDY PURPOSE | METHODS | RESULTS | COMMENT | REFERENCES The 2 components of the original PRIME-MD, the patient questionnaire and the clinician evaluation guide, were combined into a single, 3-page questionnaire that can be entirely self-administered by the patient (it can also be read to the patient, if necessary). The clinician scans the completed questionnaire, verifies positive responses, and applies diagnostic algorithms that are abbreviated at the bottom of each page. In this study, the data from the questionnaire were entered into a computer program that applied the diagnostic algorithms (written in SPSS 8.0 for Windows [SPSS Inc, Chicago, Ill]). The computer program does not include the diagnosis of somatoform disorder, because this diagnosis requires a clinical judgment regarding the adequacy of a biological explanation for physical symptoms that the patient has noted. A fourth page has been added to the PHQ that includes questions about menstruation, pregnancy and childbirth, and recent psychosocial stressors. This report covers only data from the diagnostic portion (first 3 pages) of the PHQ. Users of the PHQ have the choice of using the entire 4-page instrument, just the 3-page diagnostic portion, a 2-page version (Brief PHQ) that covers mood and panic disorders and the nondiagnostic information described above, or only the first page of the 2-page version (covering only mood and panic disorders) (Figure 1). Figure 1. First Page of Primary Care Evaluation of Mental Disorders Brief Patient Health QuestionnaireGrahic Jump Location+View Large | Save Figure | Download Slide (.ppt) | View in Article ContextCopyright held by Pfizer Inc, but may be photocopied ad libitum. For office coding, see the end of the article. The original PRIME-MD assessed 18 current mental disorders. By grouping several specific mood, anxiety, and somatoform categories into larger rubrics, the PHQ greatly simplifies the differential diagnosis by assessing only 8 disorders. Like the original PRIME-MD, these disorders are divided into threshold disorders (corresponding to specific DSM-IV diagnoses, such as major depressive disorder, panic disorder, other anxiety disorder, and bulimia nervosa) and subthreshold disorders (in which the criteria for disorders encompass fewer symptoms than are required for any specific DSM-IV diagnoses: other depressive disorder, probable alcohol abuse or dependence, and somatoform and binge eating disorders). One important modification was made in the response categories for depressive and somatoform symptoms that, in the original PRIME-MD, were dichotomous (yes/no). In the PHQ, response categories are expanded. Patients indicate for each of the 9 depressive symptoms whether, during the previous 2 weeks, the symptom has bothered them "not at all," "several days," "more than half the days," or "nearly every day." This change allows the PHQ to be not only a diagnostic instrument but also to yield a measure of depression severity that can be of aid in initial treatment decisions as well as in monitoring outcomes over time. Patients indicate for each of the 13 physical symptoms whether, during the previous month, they have been "not bothered," "bothered a little," or "bothered a lot" by the symptom. Because physical symptoms are so common in primary care, the original PRIME-MD dichotomous-response categories often led patients to endorse physical symptoms that were not clinically significant. An item was added to the end of the diagnostic portion of the PHQ asking the patient if he or she had checked off any problems on the questionnaire: "How difficult have these problems made it for you to do your work, take care of things at home, or get along with other people?" As with the original PRIME-MD, before making a final diagnosis, the clinician is expected to rule out physical causes of depression, anxiety and physical symptoms, and, in the case of depression, normal bereavement and history of a manic episode. STUDY PURPOSE ABSTRACT | DESCRIPTION OF PRIME-MD PHQ | STUDY PURPOSE | METHODS | RESULTS | COMMENT | REFERENCES Our major purpose was to test the validity and utility of the PHQ in a multisite sample of family practice and general internal medicine patients by answering the following questions: Are diagnoses made by the PHQ as accurate as diagnoses made by the original PRIME-MD, using independent diagnoses made by mental health professionals (MHPs) as the criterion standard?Are the frequencies of mental disorders found by the PHQ comparable to those obtained in other primary care studies?Is the construct validity of the PHQ comparable to the original PRIME-MD in terms of functional impairment and health care use?Is the PHQ as effective as the original PRIME-MD in increasing the recognition of mental disorders in primary care patients?How valuable do primary care physicians find the diagnostic information in the PHQ?How comfortable are patients in answering the questions on the PHQ, and how often do they believe that their answers will be helpful to their physicians in understanding and treating their problems?
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Book
Winner of Medical Journalists' Association Specialist Readership Award 2010. Recovery is widely endorsed as a guiding principle of mental health policy. Recovery brings new rules for services, e.g. user involvement and person-centred care, as well as new tools for clinical collaborations, e.g. shared decision making and psychiatric advance directives. These developments are complemented by new proposals regarding more ethically consistent anti-discrimination and involuntary treatment legislation, as well as participatory approaches to evidence-based medicine and policy. Recovery is more than a bottom up movement turned into top down mental health policy in English-speaking countries. Recovery integrates concepts that have evolved internationally over a long time. It brings together major stakeholders and different professional groups in mental health, who share the aspiration to overcome current conceptual reductionism and prognostic negativism in psychiatry. Recovery is the consequence of the achievements of the user movement. Most conceptual considerations and decisions have evolved from collaborations between people with and without a lived experience of mental health problems and the psychiatric service system. Many of the most influential publications have been written by users and ex-users of services and work-groups that have brought together individuals with and without personal experiences as psychiatric patients. In a fresh and comprehensive look, this book covers definitions, concepts and developments as well as consequences for scientific and clinical responsibilities. Information on relevant history, state of the art and transformational efforts in mental health care is complemented by exemplary stories of people who created through their lives and work an evidence base and direction for Recovery. This book was originally published in German. The translation has been fully revised, references have been amended to include the English-language literature and new material has been added to reflect recent developments. It features a Foreword by Helen Glover who relates how there is more to recovery than the absence or presence of symptoms and how health care professionals should embrace the growing evidence that people can reclaim their lives and often thrive beyond the experience of a mental illness.
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Defining hope as a cognitive set that is composed of a reciprocally derived sense of successful (1) agency (goal-directed determination) and (2) pathways (planning of ways to meet goals), an individual-differences measure is developed. Studies with college students and patients demonstrate acceptable internal consistency and test–retest reliability, and the factor structure identifies the agency and pathways components of the Hope Scale. Convergent and discriminant validity are documented, along with evidence suggesting that Hope Scale scores augmented the prediction of goal-related activities and coping strategies beyond other self-report measures. Construct validational support is provided in regard to predicted goal-setting behaviors; moreover, the hypothesized goal appraisal processes that accompany the various levels of hope are corroborated.
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In 2003 the Bush Administration’s New Freedom Commission asked mental health service providers to begin promoting "recovery" rather than churning out long-term, "chronic" mental health service users. Recovery’s Edge sends us to urban America to view the inner workings of a mental health clinic run, in part, by people who are themselves "in recovery" from mental illness. In this provocative narrative, Neely Myers sweeps us up in her own journey through three years of ethnographic research at this unusual site, providing a nuanced account of different approaches to mental health care. Recovery’s Edge critically examines the high bar we set for people in recovery through intimate stories of people struggling to find meaningful work, satisfying relationships, and independent living.
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This paper reports on a study of the potential impact of folk medicine on health care delivery in a rural community in southwestern Virginia. The intent of the investigation was to examine some commonly held stereotypical notions within and outside the medical community about rural Appalachians and medical self-care. Interviews were completed with 102 respondents aged 60 and over who were asked what they would do today and what their parents did when they were growing up to treat 65 symptoms of illness. Responses were grouped into 11 treatment categories, including botanical, non-processed natural substances, foods, home articles, proprietary medicines, other commercial medicines, magico-religious, and formal medical care and then analyzed in terms of generational change. Our findings indicate that dependence on folk medicine has declined considerably from one generation to the next, particularly with regard to the application of traditional home remedies and magico-religious beliefs and practices. Contra...
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Some of the most innovative and provocative work on the emotions and illness is occurring in cross-cultural research on depression. Culture and Depression presents the work of anthropologists, psychiatrists, and psychologists who examine the controversies, agreements, and conceptual and methodological problems that arise in the course of such research. A book of enormous depth and breadth of discussion, Culture and Depression enriches the cross-cultural study of emotions and mental illness and leads it in new directions. It commences with a historical study followed by a series of anthropological accounts that examine the problems that arise when depression is assessed in other cultures. This is a work of impressive scholarship which demonstrates that anthropological approaches to affect and illness raise central questions for psychiatry and psychology, and that cross-cultural studies of depression raise equally provocative questions for anthropology.
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The different pathways chosen to efficiently and effectively provide relief to those struggling with mental health challenges reflect different assumptions about the human condition and have led to disagreements over which intervention strategies are best suited to particular individuals or populations. Evidence-based practice and culturally competent services, as discussed within the United States, have been characterized as opposites. However, neither approach captures all of the elements that embody the full treatment experience. This article offers a framework that includes the personal identity of the practitioner and the organizational context as two elements that serve as active agents in the helping relationship, although they have rarely been included in the discourse about evidence-based practice or cultural competence. Suggestions for practice, education, and research are included based on this analysis. © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.
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Measurement yields perhaps the most critical evidence influencing whether culturally adapted evidence- based practice (EBP) and empirically supported treatments (EST) are deemed more effective for African Americans, Latino/a Americans, Asian/Pacific Islander Americans, Native Americans, and related immigrant groups than standard treatments, as well as for determining the validity of results of surveys of health conditions in nondominant populations internationally. However, little attention has been given to measuring the effects of race and ethnic culture, as experiential constructs rather than sociodemographic categories, on diagnosis, the treatment process, and outcomes. Three meta-analyses of culturally adapted treatments and three studies cited in them were analyzed to determine the ways in which researchers incorporated measurement of racial and ethnic cultural dynamics as explicit factors in any phase of their interventions. The analysis revealed that researchers did not report adapting standard measures to address cultural influences, nor did they define symptoms from participants' cultural or racial experiences. The author concludes that although there are criteria for judging good research designs, which may or not be feasible for research on nondominant racial and ethnic groups, there are no paradigms for developing measures or for interpreting existing measures to incorporate ethnicity and racialized experiences. Some principles from cross-cultural assessment research (i.e., functional, conceptual, metric, and linguistic equivalence) are adapted to suggest how measures for investigating the effectiveness of culturally adapted interventions for nondominant ethnic and racialized groups might be developed and/or used more appropriately throughout the course of the intervention. © The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.
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The aim of this study was to investigate the perceived influence of family on recovery from severe mental illness. 54 semi-structured interviews were conducted with a diverse sample of people with severe mental illness living in Montreal. Results indicated that family both facilitated and impeded recovery processes. Specifically, family facilitated recovery through providing (a) moral support, (b) practical support and (c) motivation to recover. However family impeded recovery through (a) acting as a stressor, (b) displaying stigma and lack of understanding, and (c) forcing hospitalization. The study indicates the importance of family psychoeducation in promoting recovery.
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Topic: This article reflects on the importance of fidelity in the delivery of the peer-based Wellness Recovery Action Plan. Purpose: The purpose of this account is to describe efforts being made to preserve the evidenced-based practice of the Wellness Recovery Action Plan in ways that sustain the core value of self-determination, maintain fidelity to its copyrighted curriculum, and support its positive impact for all people. Sources used: The writing is based on personal knowledge and research literature related to the Wellness Recovery Action Plan. Conclusions and implications for practice: The implementation and training of facilitators committed to the value of self-determination is critical to the fidelity of the evidence-based, peer-delivered Wellness Recovery Action Plan. Value-based training and WRAP standards are essential to ensure that WRAP continues to contribute substantially to transformative change.
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The CES-D scale is a short self-report scale designed to measure depressive symptomatology in the general population. The items of the scale are symptoms associated with depression which have been used in previously validated longer scales. The new scale was tested in household interview surveys and in psychiatric settings. It was found to have very high internal consistency and adequate test- retest repeatability. Validity was established by pat terns of correlations with other self-report measures, by correlations with clinical ratings of depression, and by relationships with other variables which support its construct validity. Reliability, validity, and factor structure were similar across a wide variety of demographic characteristics in the general population samples tested. The scale should be a useful tool for epidemiologic studies of de pression.
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Investigating the possible overlap between depressed and presumably strong Black women, this article maintains that women's experiences of depression are both gendered and raced. A review of clinical and popular literatures examining Black women's experiences of depression as well as findings from an interview study with a nonclinical sample of 44 Black women suggest that the discourse of being strong may normalize a distressinducing level of selflessness and powerlessness among such women. Implications of this study include the need to consider the racially specific ways in which women are placed at risk for and experience depression.
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Various definitions, dimensions, and components of recovery have been posited. Building on existing work, the authors propose five superordinate dimensions of recovery: clinical recovery, experiencing improvements in symptoms; existential recovery, having a sense of hope, empowerment, agency, and spiritual well-being; functional recovery, obtaining and maintaining valued societal roles and responsibilities, including employment, education, and stable housing; physical recovery, pursuing better health and a healthy lifestyle; and social recovery, experiencing enhanced and meaningful relationships and integration with family, friends, and the wider community. The model also identifies lay, professional, and systemic resources that promote each recovery dimension.
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The aim of this preliminary study was to examine the impact of participation in an illness self-management recovery program (Wellness Recovery Action Planning-WRAP) on the ability of individuals with severe mental illnesses to achieve key recovery related outcomes. A total of 30 participants from three mental health centers were followed immediately before and after engaging in a 12-week WRAP program. Three paired sample t-tests were conducted to determine the effectiveness of WRAP on hope, recovery orientation, and level of symptoms. A significant positive time effect was found for hope and recovery orientation. Participants showed improvement in symptoms, but the change was slightly below statistical significance. These preliminary results offer promising evidence that the use of WRAP has a positive effect on self-reported hope and recovery-related attitudes, thereby providing an effective complement to current mental health treatment.
Article
CONTEXT/PURPOSE: To examine a low-income sample of women in the rural Midwest (N = 1,086) who were screened for perinatal depression through the outreach and education activities within a Healthy Start Initiative project. Specifically, we describe the frequency and severity of depressive symptoms, explore social and demographic correlates of depression, and examine help-seeking through patterns of self-referral to a Healthy Start perinatal depression project in a rural, medically underserved community. Depression screening data using the Primary Care Evaluation of Mental Disorders (PRIME-MD) as well as intake records from the project were analyzed in a retrospective analysis to identify important demographic and psychosocial characteristics associated with elevated levels of depressive symptoms and help-seeking patterns. Thirty-six percent of screened women met criteria for major, minor, or subthreshold depression, with 13% meeting diagnostic criteria for major depression alone. Less than 8% were currently receiving any type of mental health services or treatment at screening. The most significant correlate of self-referral to the Healthy Start project was meeting symptom criteria for major depression, although minor depression, subthreshold depression, and status as low-income/Temporary Aid to Needy Families (TANF)-eligible were all significantly associated with self-referral. The findings from this study highlight the potential significance of identifying and addressing the unmet mental health needs of low-income rural women during and around pregnancy. In addition, the study illustrates that low income, in addition to depressive symptoms, impacts mental health service delivery in this rural community with a fragmented mental health service infrastructure.
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Defining hope as a cognitive set that is composed of a reciprocally derived sense of successful (a) agency (goal-directed determination) and (b) pathways (planning of ways to meet goals), an individual-differences measure is developed. Studies demonstrate acceptable internal consistency and test-retest reliability, and the factor structure identifies the agency and pathways components of the Hope Scale. Convergent and discriminant validity are documented, along with evidence suggesting that Hope Scale scores augmented the prediction of goal-related activities and coping strategies beyond other self-report measures. Construct validational support is provided in regard to predicted goal-setting behaviors; moreover, the hypothesized goal appraisal processes that accompany the various levels of hope are corroborated.
Article
Culture influences the experience and expression of distress from its inception. While Western psychiatry has identified several universal patterns of distress, there are significant geographical variations in the prevalence, symptomatology, course and outcome of psychiatric illness. Indirect evidence suggests that cultural differences in the recognition, labelling and interpretation of deviant behaviour affect the outcome of major psychiatric disorders as well as milder forms of distress. Emotion theory and the cultural concept of the person provide links between social and cognitive processes that contribute to the natural history of emotional distress. However, many current studies of ethnopsychology confound psychology (mechanisms of behaviour) and meta-psychology (theories of the self). Further advances in understanding the impact of culture on distress depend on the development of psychological and social theory that is neither ethnocentric nor naive about the wellsprings of action. Three arenas for further study are identified: (1) the handling of the gap between experience and expression; (2) the labelling of deviant behaviour and distress as voluntary or accidental; and, (3) the interpretation of symptoms as symbols or as meaningless events. Attention to these themes can guide re-thinking the assumptions of Western psychological and social theory.