RESUMO
BACKGROUND: Personal recovery is operationalized in the CHIME framework (connectedness, hope, identity, meaning in life, and empowerment) of recovery processes. CHIME was initially developed through analysis of experiences of people mainly with psychosis, but it might also be valid for investigating recovery in mood-related, autism and other diagnoses. AIMS: To examine whether personal recovery is transdiagnostic by studying narrative experiences in several diagnostic groups. METHODS: Thirty recovery narratives, retrieved from "Psychiatry Story Bank" (PSB) in the Netherlands, were analyzed by three coders using CHIME as a deductive framework. New codes were assigned using an inductive approach and member checks were performed after consensus was reached. RESULTS: All five CHIME dimensions were richly reported in the narratives, independent of diagnosis. Seven new domains were identified, such as "acknowledgement by diagnosis" and "gaining self-insight". These new domains were evaluated to fit well as subdomains within the original CHIME framework. On average, 54.2% of all narrative content was classified as experienced difficulties. CONCLUSIONS: Recovery stories from different diagnostic perspectives fit well into the CHIME framework, implying that personal recovery is a transdiagnostic concept. Difficulties should not be ignored in the context of personal recovery based on its substantial presence in the recovery narratives.
RESUMO
This study aims to compare the experiences of women and men of different age groups with regard to their first autism spectrum disorder (ASD) diagnosis, symptoms, treatment, and gender roles to inform our understanding in clinical practice of differences as well as similarities. Semi-structured interviews were conducted amongst 22 women (n = 12) and men (n = 10) in three adult age groups regarding their diagnostic process, symptoms, treatment, and gender roles. Participants also filled out questionnaires on gender traits, social support, coping, and quality of life. Framework analysis guidelines were followed to identify subthemes within the three pre-defined key themes of the semi-structured interviews, and quantitative analyses were performed on the questionnaire results. Women often had caregiver roles and were more focused on social and family-oriented life aspects than men. Family and societal expectations may have been different for women from an early age onward and were considered burdensome by some, but not all. Views on ASD diagnosis, symptoms, and treatment were largely individually determined. The questionnaire results mostly showed no significant sex differences. Perceived gender roles differed between participants. In diagnosis and treatment, awareness of general gender differences and gender roles is important, but inter-individual differences and similar experiences in men should not be overlooked.
Assuntos
Transtorno do Espectro Autista , Papel de Gênero , Adulto , Humanos , Masculino , Feminino , Qualidade de Vida , Transtorno do Espectro Autista/diagnóstico , Transtorno do Espectro Autista/terapia , Pesquisa Qualitativa , Apoio SocialRESUMO
We developed a Dutch questionnaire called the Autistic Women's Experience (AWE) and compared its psychometric properties to the Autism Spectrum Quotient (AQ). Whilst attenuated gender differences on the AQ have been widely replicated, this instrument may not fully capture the unique experience of autistic women. The AWE was co-developed with autistic women to include items that reflect autistic women's experience. We investigated the AWE (49 items) and compared it with the AQ (50 items) in Dutch autistic individuals (N = 153, n = 85 women) and in the general population (N = 489, n = 246 women) aged 16+. Both the AQ and AWE had excellent internal consistency and were highly and equally predictive of autism in both women and men. Whilst there was a gender difference on the AQ among non-autistic people (men > women), there was no gender difference among autistic people, confirming all earlier studies. No gender differences were detected on the AWE overall scale, yet subtle gender differences were observed on the subscales. We conclude that the AQ is valid for both genders, but the AWE provides an additional useful perspective on the characteristics of autistic women. The AWE needs further validation in independent samples using techniques that allow for testing gender biases, as well as a confirmatory factor analysis in a larger sample.