Distant suffering: A concept analysis.

BACKGROUND: Patients who are suffering may be commonly encountered in health care. The growing use of telehealth implies that encounters with patients who are suffering may increasingly take place at a distance. "Distant suffering" is a concept coined within sociology to describe the suffering of far-away others. It is conceptualized as a paradox, as distance changes the relation between the witness of suffering and the suffering encountered. Impacts may include a potential detriment to the sufferer and ethical implications for the witness. OBJECTIVE: To explore the concept of distant suffering and any relevance, implications, or important avenues for potential research within the healthcare sciences. DESIGN: Rodgers' evolutionary concept analysis. DATA SOURCES: Databases of Web of Science, Medline, CINAHL and PsycInfo were searched for the terms "distant suffering" or "mediated suffering". REVIEW METHOD: Attributes, surrogate or related terms, antecedents, consequences, and uses of the concept were extracted and synthesized. RESULTS: Thirty articles published within the past ten years were selected for review from the search results. "Distant suffering" was characterized as comprising 1) mediated far-away suffering, 2) a "recognizer" or witness, and 3) a potential role of a moderator. Antecedents include shared understandings and socially-influenced responses. Consequences include responses like empathy, compassion, pity, also indifference, cynicism and compassion fatigue. CONCLUSIONS: Further research to explore distant suffering from healthcare sciences' perspective could uncover valuable insights for those suffering, for healthcare workers, and any who are exposed to it. An improved understanding of how distant suffering is conveyed and moderated could enable targeted reduction of exposure or improve response to distant suffering. Such knowledge could help diminish negative consequences for those suffering, for healthcare workers who are caring at a distance for those suffering, or for others who encounter distant suffering in their occupations or in daily life via media, social media, or digital communications. TWEETABLE ABSTRACT: New analysis finds that exposure to distant suffering may have important implications for health and health care.

Is refugee experience in childhood a risk for poorer health in adulthood?-A Swedish national survey study.

Studies on experiences of migration in childhood and subsequent health in adulthood report conflicting results. While there is limited research on the long-term health outcomes of refugee children as they transition into adulthood, it is often observed that refugee children experience adverse health conditions upon their arrival in the host country. We examined whether adults with a childhood refugee experience were more likely to have poorer mental health, general health, and risk-behaviours compared to non-refugee migrants and Swedish-born peers We included a nationally representative sample of 18-64-year-olds who answered the Swedish National Public Health survey in 2018 or 2020. Using official register data, we categorized individuals as: 1) refugees in childhood (

Encountering suffering in digital care: a qualitative study of providers' experiences in telemental health care.

BACKGROUND: Encountering patients who are suffering is common in health care, and particularly when providing mental health care. Telehealth technologies are increasingly used to provide mental health care, yet little is known about the experiences of providers when encountering patients who are suffering within remote care. The present study explored health care providers' lived experiences of encountering patient suffering during telemental health care. METHODS: A qualitative phenomenological approach was used to uncover participants' experiences. In-depth interviews were conducted with a purposive sample of physicians, psychologists, and therapists who used telemental health in varied clinical practices in Sweden. Data were analyzed using descriptive phenomenology. RESULTS: Telehealth care with patients who were suffering was experienced by providers as loose connections, both literally in compromised functioning of the technology and figuratively in a compromised ability connecting emotionally with patients. Providers' lived experiences were explicated into the following aspects: insecurity in digital practice, inaccessibility of the armamentarium, and conviction in the value of telehealth care. Interpersonal connection between patient and provider is necessary. Worry and guilt arose for providers with fears that technology would not work, patient status was deteriorated, or the care needed could not be delivered. Providers overcame barriers in telehealth encounters, and expressed they perceived that patients appreciated the care received, and through it found relief. CONCLUSIONS: This study brings an understanding of experiences in providing telemental care for patients who are suffering. Providers experience challenges in connecting with patients, and in accessing tools needed to enable reaching the goals of the caring encounter. Efforts to ensure functioning of technology, comfort with its use, and accessibility of tools might be some accommodations to support providers for successful and rewarding telehealth care encounters.

Measurement of Mental Health Among Adolescents at the Population Level: A Multicountry Protocol for Adaptation and Validation of Mental Health Measures.

PURPOSE: Mental disorders are among the leading causes of disability among adolescents aged 10-19 years. However, data on prevalence of mental health conditions are extremely sparse across low- and middle-income countries, even though most adolescents live in these settings. This data gap is further exacerbated because few brief instruments for adolescent mental health are validated in these settings, making population-level measurement of adolescent mental health especially cumbersome to carry out. In response, the UNICEF has undertaken the Measurement of Mental Health Among Adolescents at the Population Level (MMAP) initiative, validating open-access brief measures and encouraging data collection in this area. METHODS: This protocol presents the MMAP mixed-methods approach for cultural adaptation and clinical validation of adolescent mental health data collection tools across settings. Qualitative activities include an initial translation and adaptation, review by mental health experts, focus-group discussions with adolescents, cognitive interviews, synthesis of findings, and back-translation. An enriched sample of adolescents with mental health problems is then interviewed with the adapted tool, followed by gold-standard semistructured diagnostic interviews. RESULTS: The study protocol is being implemented in Belize, Kenya, Nepal, and South Africa and includes measures for anxiety, depression, functional limitations, suicidality, care-seeking, and connectedness. Analyses, including psychometrics, will be conducted individually by country and combined across settings to assess the MMAP methodological process. DISCUSSION: This protocol contributes to closing the data gap on adolescent mental health conditions by providing a rigorous process of cross-cultural adaptation and validation of data collection approaches.

Validation of the Kriol and Belizean English Adaptation of the Revised Children's Anxiety and Depression Scale for Use With Adolescents in Belize.

PURPOSE: To validate a culturally-adapted Kriol and Belizean English version of the Revised Children's Anxiety and Depression Scale (RCADS) through comparison with clinical diagnoses made using the Kiddie Schedule of Affective Disorders and Schizophrenia. METHODS: Participants comprised of 256 adolescents aged 10-14 years and 15-19 years, who completed the adapted RCADS (10 depression items, 12 anxiety items) in one-on-one interviews, followed by a diagnostic assessment using Kiddie Schedule of Affective Disorders and Schizophrenia administered by trained clinicians. Sensitivity, specificity, positive predictive value, negative predictive value, diagnostic odds ratios, area under the curve (AUC), and Youden's Index were calculated for RCADS cutoffs and scores on the total scale and anxiety and depression subscales. RESULTS: For adolescents aged 10-14 years (n = 161), the AUC was 0.72 for the full scale, 0.67 for anxiety subscale, and 0.76 for depression subscale. For adolescents aged 15-19 years (n = 95), the AUCs were 0.82, 0.77, and 0.83. Most depression items performed well in discriminating those with and without diagnoses. Separation anxiety items performed poorly. "Thoughts of death" were common even among adolescents not meeting diagnostic criteria. The RCADS depression subscale presented the strongest psychometric properties with adolescents aged 15-19 years (at cutoff of 13, sensitivity = 0.83, specificity = 0.77, positive predictive value = 0.47, negative predictive value = 0.95, odds ratio = 15.96). CONCLUSION: The adapted RCADS-22 had acceptable categorization for adolescents aged 10-14 years and excellent categorization for adolescents aged 15-19 years; therefore, the tool is recommended for use among the latter age group. Based on sensitivity and specificity values at different cutoffs, guidance is provided to select different thresholds to suit clinical, public health, or other uses to detect and quantify adolescent depression and anxiety in Belize.

Detecting Depression and Anxiety Among Adolescents in South Africa: Validity of the isiXhosa Patient Health Questionnaire-9 and Generalized Anxiety Disorder-7.

PURPOSE: Screening tools such as the Patient Health Questionnaire-9 (PHQ-9) and the Generalized Anxiety Disorder-7 (GAD-7) could potentially be used in resource-limited settings to identify adolescents who need mental health support. We examined the criterion validity of the isiXhosa versions of the PHQ-9 and GAD-7 in detecting depression and anxiety among adolescents (10-19 years) in South Africa. METHODS: Adolescents were recruited from the general population and from nongovernmental organizations working with adolescents in need of mental health support. The PHQ-9 and GAD-7 were culturally adapted and translated into isiXhosa and administered to 302 adolescents (56.9% female). The Kiddie Schedule for Affective Disorders and Schizophrenia was administered by trained clinicians as the gold standard diagnostic measure for depression and anxiety. RESULTS: For the PHQ-9, the area under the curve was 0.88 for the full sample of adolescents (10-19 years old). A score of ≥10 had 91% sensitivity and 76% specificity for detecting adolescents with depression. For the GAD-7, the area under the curve was 0.78, and cutoff scores with an optimal sensitivity-specificity balance were low (≥6). A score of ≥6 had 67% sensitivity and 75% specificity for detecting adolescents with anxiety. DISCUSSION: The culturally adapted isiXhosa version of the PHQ-9 can be used as a valid measure for depression in adolescents. Further research on the GAD-7 for use with adolescents is recommended.

Validation of the English and Swahili Adaptation of the Patient Health Questionnaire-9 for Use Among Adolescents in Kenya.

PURPOSE: Our study aimed to validate culturally adapted English and Swahili versions of the Patient Health Questionnaire-9 (PHQ-9) for use with adolescents in Kenya. Criterion validity was determined with clinician-administered diagnostic interviews using the Kiddie Schedule of Affective Disorders and Schizophrenia. METHODS: A total of 250 adolescents comprising 148 (59.2%) females and 102 (40.8%) males aged 10-19 years (mean = 14.76; standard deviation = 2.78) were recruited. The PHQ-9 was administered to all respondents concurrently in English and Swahili. Adolescents were later interviewed by clinicians using Kiddie Schedule of Affective Disorders and Schizophrenia to determine the presence or absence of current symptoms of major depressive disorder. Sensitivity specificity, positive predictive value (PPV) and negative predictive value (NPV), and likelihood ratios for various cut-off scores for PHQ-9 were analyzed using receiver operating characteristic curves. RESULTS: The internal consistency (Cronbach's α) for PHQ-9 was 0.862 for the English version and 0.834 for Swahili version. The area under the curve was 0.89 (95% confidence interval, 0.84-0.92) and 0.87 (95% confidence interval, 0.82-0.90) for English and Swahili version, respectively, on receiver operating characteristic analysis. A cut-off of ≥ 9 on the English-language version had a sensitivity of 95.0%, specificity of 73.0%, PPV of 0.23, and NPV of 0.99; a cut-off of ≥ 9 on the Swahili version yielded a sensitivity of 89.0%, specificity of 70.0%, PPV of 0.20, and NPV of 0.90. DISCUSSION: Psychometric properties were comparable across both English-adapted and Swahili-adapted version of the PHQ-9, are reliable, and valid instrument to detect major depressive disorder among adolescents which can be used in resource-limited settings for early identification of adolescents in need of mental health support.

Translation and Adaptation of the Revised Children's Anxiety and Depression Scale: A Qualitative Study in Belize.

BACKGROUND: Adapting data collection instruments using transcultural translation and adaptation processes is essential to ensure that respondents comprehend the items and the original meaning is retained across languages and contexts. This approach is central to UNICEF's efforts to expand the use of standard data collection tools across settings and close the global data gap on adolescent mental health. METHODS: We conducted transcultural translation and adaptation processes in Belize using the Revised Children's Anxiety and Depression Scale (RCADS). Items from the original scale were translated into Belizean English and Kriol, reviewed by local mental health experts, and discussed in focus groups. Cognitive interviews were conducted with adolescents and parents. The information collected was analyzed with cultural equivalence domains: comprehensibility, acceptability, relevance, completeness, and technical equivalence. Bilingual discussions of findings informed the final item wordings, and the adapted tool was back-translated. RESULTS: Adaptation of terms and specific expressions were done to improve comprehensibility and to ensure the appropriate clinical meaning. For example, the expression 'feeling scared' was perceived to imply immaturity or threaten masculinity and was adapted to 'feeling afraid.' Expressions like "shaky" were modified to "trimble" in Kriol. Statements were reworded as questions to enhance acceptability and comprehensibility. DISCUSSION: A culturally adapted version of the RCADS was developed for use among adolescents in Belize in Belizean English and Kriol. The transcultural translation and adaptation procedure can be applied for other settings or tools to design contextual adaptations of mental health instruments prior to their validation or use in new settings.

Cultural and contextual adaptation of mental health measures in Kenya: An adolescent-centered transcultural adaptation of measures study.

INTRODUCTION: There is paucity of culturally adapted tools for assessing depression and anxiety in children and adolescents in low-and middle-income countries. This hinders early detection, provision of appropriate and culturally acceptable interventions. In a partnership with the University of Nairobi, Nairobi County, Kenyatta National Hospital, and UNICEF, a rapid cultural adaptation of three adolescent mental health scales was done, i.e., Revised Children's Anxiety and Depression Scale, Patient Health Questionnaire-9 and additional scales in the UNICEF mental health module for adolescents. MATERIALS AND METHODS: Using a qualitative approach, we explored adolescent participants' views on cultural acceptability, comprehensibility, relevance, and completeness of specific items in these tools through an adolescent-centered approach to understand their psychosocial needs, focusing on gender and age-differentiated nuances around expression of distress. Forty-two adolescents and 20 caregivers participated in the study carried out in two primary care centers where we conducted cognitive interviews and focused group discussions assessing mental health knowledge, literacy, access to services, community, and family-level stigma. RESULTS: We reflect on process and findings of adaptations of the tools, including systematic identification of words adolescents did not understand in English and Kiswahili translations of these scales. Some translated words could not be understood and were not used in routine conversations. Response options were changed to increase comprehensibility; some statements were qualified by adding extra words to avoid ambiguity. Participants suggested alternative words that replaced difficult ones and arrived at culturally adapted tools. DISCUSSION: Study noted difficult words, phrases, dynamics in understanding words translated from one language to another, and differences in comprehension in adolescents ages 10-19 years. There is a critical need to consider cultural adaptation of depression and anxiety tools for adolescents. CONCLUSION: Results informed a set of culturally adapted scales. The process was community-driven and adhered to the principles of cultural adaptation for assessment tools.

Proportion of adults in the general population of Stockholm County who want gender-affirming medical treatment.

The number of patients presenting for care at gender clinics is increasing, yet the proportion of adults in the general population who want gender-affirming medical treatment remains essentially unknown. We measured the wish for cross-sex hormones or gender-affirming surgery, as well as other aspects of gender incongruence, among the general adult population of Stockholm County, Sweden. A population-representative sample of 50,157 Stockholm County residents ages 22 and older comprise the Stockholm Public Health Cohort. They were enrolled in 2002, 2006, and 2010 and followed-up in roughly 4-year intervals, with questions on health, lifestyle and social characteristics. In 2014, participants received the item "I would like hormones or surgery to be more like someone of a different sex." Two additional items concerned other aspects of gender incongruence: "I feel like someone of a different sex", and "I would like to live as or be treated as someone of a different sex." Each item had four answer options ("Not at all correct", "Somewhat or occasionally correct", "Quite correct", and "Absolutely correct"). For each item, any of the three affirmative answer choices were considered as some level of agreement. Calibration weights were used to estimate population-representative rates with 95% confidence intervals. The desire for cross-sex hormones or surgery was reported by 0.5% (95% CI, 0.4%-0.7%) of participants. Feeling like someone of a different sex was reported by 2.3% (95% CI, 2.1%-2.6%). Wanting to live as or be treated as a person of another sex was reported by 2.8% (95% CI, 2.4%-3.1%). These findings greatly exceed estimates of the number of patients receiving gender-affirming medical care. Clinicians must be prepared to recognize and care for patients experiencing discomfort due to gender incongruence and those who would like gender-affirming medical treatment.

Brief Report: Sexual Orientation in Individuals with Autistic Traits: Population Based Study of 47,000 Adults in Stockholm County.

We examined the association between autistic traits and sexual orientation in a general adult population (N = 47,356). Autistic traits were measured with the ten items Autistic Quotient questionnaire using a cut-off score of ≥ 6. Sexual orientation was assessed by self-report. Multinomial logistic regression was used to estimate odds ratios (ORs) and 95% confidence intervals (CIs) for sexual orientation categories. Participants with autistic traits were more likely to identify as bisexual (OR 1.73; 95% CI 1.01-2.9) and to feel that their sexual orientation could neither be described as hetero-, homo- nor bisexual (OR 3.05; 95% CI 2.56-3.63), compared to individuals without autistic traits. Autistic traits are associated with minority sexual orientation, and perhaps with uncertain self-identification and/or a defiance of traditional ways of categorizing sexual identity.

Understanding careseeking for child illness in sub-Saharan Africa: a systematic review and conceptual framework based on qualitative research of household recognition and response to child diarrhoea, pneumonia and malaria.

Diarrhoea, pneumonia and malaria are the largest contributors to childhood mortality in sub-Saharan Africa. While supply side efforts to deliver effective and affordable interventions are being scaled up, ensuring timely and appropriate use by caregivers remains a challenge. This systematic review synthesises qualitative evidence on the factors that underpin household recognition and response to child diarrhoea, pneumonia and malaria in sub-Saharan Africa. For this review, we searched six electronic databases, hand searched 12 journals from 1980 to 2010 using key search terms, and solicited expert review. We identified 5104 possible studies and included 112. Study quality was appraised using the Critical Appraisal Skills Program (CASP) tool. We followed a meta-ethnographic approach to synthesise findings according to three main themes: how households understand these illnesses, how social relationships affect recognition and response, and how households act to prevent and treat these illnesses. We synthesise these findings into a conceptual model for understanding household pathways to care and decision making. Factors that influence household careseeking include: cultural beliefs and illness perceptions; perceived illness severity and efficacy of treatment; rural location, gender, household income and cost of treatment. Several studies also emphasise the importance of experimentation, previous experience with health services and habit in shaping household choices. Moving beyond well-known barriers to careseeking and linear models of pathways to care, the review suggests that treatment decision making is a dynamic process characterised by uncertainty and debate, experimentation with multiple and simultaneous treatments, and shifting interpretations of the illness and treatment options, with household decision making hinging on social negotiations with a broad variety of actors and influenced by control over financial resources. The review concludes with research recommendations for tackling remaining gaps in knowledge.