Caregivers’ perception of dignity in teenagers with autism spectrum disorder

Introduction: Maintaining dignity is one of patients is one of the main ethical responsibilities of caregivers. However, in many cases, the dignity of patients, especially autistic teenagers is not maintained. The extent to which dignity needs are met for this group within the Iranian care system is difficult to determine as dignity is an abstract concept, and there are few related research studies reported. Objectives: The objective of this study is to find out caregivers perspectives on dignity in teenagers with autistic spectrum disorder. Research design: This study uses a qualitative research design. The data were collected through individual, semi-structured interviews and field notes developed during the interviews. In order to analyze the data, qualitative conventional content analysis was used. Participants and research context: In all, 16 professional caregivers for autistic teenagers working in public hospitals were recruited based on a targeted sampling method to reach data saturation from February 2016 to July 2017. Findings: The findings of this study were presented in three main themes, “privacy,” “respecting individual identity,” and “comprehensive support,” and 11 categories. Ethical consideration: This study’s protocol was approved by the Research Ethics Committee of medical universities located in Southeast of Iran and the required ethical principles were followed throughout. Discussion and conclusion: Based on the findings of this study from the perspective of caregivers, autistic teenagers need to be cared for and educated in a respectful environment where their privacy is maintained, their individual identities are respected, and they receive comprehensive familial, social, and financial support. These conditions would maintain the dignity of such teenagers and would result in appropriate behavioral outcomes. Therefore, it is suggested that a cultural, professional and institutional background in which all components of the autistic teenager’s dignity are protected and emphasized be provided.

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Perceptions of Autism Spectrum Disorder (ASD) Etiology among Parents of Children with ASD

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph18136774 ◽

2021 ◽

Vol 18 (13) ◽

pp. 6774

Author(s):

Wei-Ju Chen ◽

Zihan Zhang ◽

Haocen Wang ◽

Tung-Sung Tseng ◽

Ping Ma ◽

...

Keyword(s):

Autism Spectrum Disorder ◽

Content Analysis ◽

Neurodevelopmental Disorder ◽

Autism Spectrum ◽

Parental Perceptions ◽

Repetitive Behaviors ◽

Spectrum Disorder ◽

Structured Interviews ◽

Children With Asd ◽

Religious Factors

Background: Autism spectrum disorder (ASD) is a neurodevelopmental disorder characterized by social communication deficits and restricted or repetitive behaviors. Parental perceptions of the etiology of their child’s ASD can affect provider–client relationships, bonding between parents and their children, and the prognosis, treatment, and management of children with ASD. Thus, this study sought to examine the perceptions of ASD etiology of parents of children with ASD. Methods: Forty-two parents of children diagnosed with ASD were recruited across Texas. Semi-structured interviews were conducted individually. All interviews were recorded and later transcribed verbatim for content analysis utilizing NVivo 12.0 (QSR International, Doncaster, Australia). Results: The content analysis identified the following themes regarding parental perceptions of ASD etiology: Genetic factors (40.5%), environmental factors (31.0%), problems that occurred during pregnancy or delivery (23.8%), vaccinations (16.7%), other health problems (7.1%), parental age at the time of pregnancy (4.8%), and spiritual or religious factors (2.4%). Conclusions: The parental perceptions of ASD etiology were diverse, but several views, such as vaccinations and spiritual or religious factors, were not based on scientific evidence. Health professionals and researchers can use these findings to develop and provide targeted education to parents who have children with ASD. Our findings also support policymakers in developing campaigns designed to increase parental ASD awareness and knowledge.

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Listening to Bedouin fathers of children with autism spectrum disorder

Transcultural Psychiatry ◽

10.1177/1363461518808148 ◽

2018 ◽

Vol 56 (2) ◽

pp. 345-358 ◽

Cited By ~ 2

Author(s):

Iris Manor-Binyamini

Keyword(s):

Autism Spectrum Disorder ◽

Support Services ◽

Cultural Context ◽

Children With Autism ◽

Autism Spectrum ◽

Spectrum Disorder ◽

Structured Interviews ◽

Raising Children ◽

Cultural Perspectives ◽

Children With Asd

Although children across the world experience autism spectrum disorder (ASD), most research on ASD has been conducted using Western cultural perspectives and has focused primarily on mothers, leaving significant gaps in the literature. This study aimed to address these gaps by exploring the experiences of fathers raising children with ASD in a Bedouin community. To this end, a sample of 19 fathers of children (aged 6–15 years) with ASD living in recognized and unrecognized Bedouin settlements in the Negev participated in ethnographic, semi-structured interviews designed to investigate their experiences with raising a child with ASD in their community. Two major themes emerged: the challenges that Bedouin fathers of children with ASD face, and the influence of socio-demographic and cultural characteristics on their experience. Findings reflect the complex experiences of fathers raising children with ASD in the Bedouin community, stemming from their socio-cultural context and the limited knowledge and support services that are available in the community for these children. This article concludes with recommendations on how to enhance professional sensitivity and provide more culturally tailored services for parents of children with ASD.

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Electrophysiological and Behavioral Outcomes of Berard Auditory Integration Training (AIT) in Children with Autism Spectrum Disorder

Applied Psychophysiology and Biofeedback ◽

10.1007/s10484-016-9343-z ◽

2016 ◽

Vol 41 (4) ◽

pp. 405-420 ◽

Cited By ~ 11

Author(s):

Estate M. Sokhadze ◽

Manuel F. Casanova ◽

Allan Tasman ◽

Sally Brockett

Keyword(s):

Autism Spectrum Disorder ◽

Behavioral Outcomes ◽

Children With Autism ◽

Autism Spectrum ◽

Spectrum Disorder ◽

Auditory Integration Training ◽

Auditory Integration

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Citizenship Practices Among Youth Who Have Experienced Government Care

The Canadian Journal of Sociology ◽

10.29173/cjs20571 ◽

2015 ◽

Vol 40 (1) ◽

pp. 25-50

Author(s):

Kate Butler ◽

Cecilia Benoit

Keyword(s):

Qualitative Research ◽

Nous Avons ◽

Research Design ◽

Lived Experiences ◽

Structured Interviews ◽

Care Experience ◽

Système De Santé ◽

Qualitative Research Design ◽

The Government ◽

Youth Citizenship

Abstract. Expressions of youth citizenship are evident in young people’s actions, behaviours, and lived experiences. While youth citizenship literature has proliferated in the last two decades, the focus has often been on rights and responsibilities, rather than the differences in citizenship practices amongst youth themselves. Using a qualitative research design, our study explores how youth-with-care-experience practice citizenship. We conducted twenty semi-structured interviews with youth-with-care-experience between the ages of 14-24 in Greater Victoria, Canada. Analysis of participants’ narratives reveals three types of citizenship practices: self-responsible, dissenting and reluctant citizenship. We discuss our findings in the context of the literature on youth citizenship, focusing on the ways that it is contextualized by experiences with family, peers, institutions, and the government care system. Résumé. Les expressions de la citoyenneté des jeunes sont évidentes dans leurs actions, comportements et leurs expériences vécues. Alors que la littérature reliée à la citoyenneté des jeunes a proliféré dans les deux dernières décennies, l’emphase a souvent été mise sur les droits et les responsabilités, plutôt que sur les différences dans les pratiques de la citoyenneté chez les jeunes. En utilisant un modèle de recherche qualitatif, notre étude explore comment la citoyenneté est vécue par les jeunes qui ont été pris en charge. Nous avons effectué vingt entretiens semi-structurés avec des jeunes qui ont été pris en charge âgés entre 14 et 24 ans dans la région de Victoria, Canada. L’analyse des données révèle trois types de pratiques de la citoyenneté: auto-responsable, dissidente et réticente. Nous discutons de nos résultats dans le contexte de la littérature sur la citoyenneté des jeunes, en mettant l’accent sur les façons dont la citoyenneté des jeunes est contextualisée par des expériences avec la famille, les pairs, les institutions et le système de santé.

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THE CONVERSATIONAL STYLES BY MALE AND FEMALE SELLERS IN BUSINESS TRANSACTIONS AT TRADITIONAL MARKET “PASAR SENTOSA BARU” MEDAN

LINGUISTIK TERAPAN ◽

10.24114/lt.v14i1.8356 ◽

2018 ◽

Vol 14 (1) ◽

Author(s):

Diana Hayati Pulungan ◽

Sumarsih Sumarsih ◽

Didik Santoso

Keyword(s):

Qualitative Research ◽

Research Design ◽

Male And Female ◽

Business Transaction ◽

Business Transactions ◽

Qualitative Research Design ◽

Traditional Market ◽

Field Notes ◽

Public Context

This research deals with the conversational styles by male and female sellers in business transactions at traditional market “Pasar Sentosa Baru” Medan. It was conducted using qualitative research design. The subjects of 8 persons namely 4 male sellers and 4 female sellers were taken which they produced 20 conversations for each genders. The ages ranged from 30 to 60 years old. They come from various sellers, namely fish, chicken, vegetables, fruits, and spice. The instruments of collecting data were observation, recording, field notes, and interviewing adopted by Miles, Huberman, and Saldana (2014). The findings show that there were five types of conversational styles used by male and female sellers. In conversational styles used by male sellers; amount of talk (30%), interruption (26.7%), conversational support (21.7%), compliment (16.6%), and tentativeness (5%). In conversational styles used by female sellers; interruption (29%), amount of talk (23%), conversational support (24%), tentativeness (15%), and compliment (9%). In conversational styles in male sellers business transaction, the more dominant responses refer to talk of amount because they talk much in interaction in public context, while for female, the more dominant responses refer to interruption because the female sellers are taken as a violation and a sign of conversational dominance.Keywords: Conversational styles, Gender, Traditional Market.

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The Formation of Postsecondary Expectations Among Parents of Youth With Autism Spectrum Disorder

Focus on Autism and Other Developmental Disabilities ◽

10.1177/1088357619881221 ◽

2019 ◽

Vol 35 (2) ◽

pp. 118-128 ◽

Cited By ~ 2

Author(s):

Anne V. Kirby ◽

Nancy Bagatell ◽

Grace T. Baranek

Keyword(s):

Autism Spectrum Disorder ◽

Transition To Adulthood ◽

Autism Spectrum ◽

Parent Expectations ◽

Spectrum Disorder ◽

Future Research ◽

Structured Interviews ◽

The Family ◽

Postsecondary Expectations

Research suggests higher parent expectations can predict more independent outcomes of youth with autism spectrum disorder (ASD), yet little is known about how parents’ expectations are formed. To gain an understanding of their formation, we conducted semi-structured interviews with seven parents of adolescents with ASD. Three main types of influences on parent expectations were identified: factors related to the youth, to the parent, and to social and societal forces external to the family. Although not directly probed, all of the participants also discussed their approaches to planning for the future, suggesting a connection with their expectations. These findings contribute to a growing body of literature on the role of parent expectations during the transition to adulthood. Future research and clinical practice implications include designing interventions aimed at expanding parent expectations in addition to approaches directly preparing youth with ASD for adulthood as a means to improve outcomes.

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Community Supported Agriculture as a Driver of Food-Related Well-Being

Sustainability ◽

10.3390/su12114516 ◽

2020 ◽

Vol 12 (11) ◽

pp. 4516 ◽

Cited By ~ 2

Author(s):

Ilona Liliána Birtalan ◽

Attila Bartha ◽

Ágnes Neulinger ◽

György Bárdos ◽

Attila Oláh ◽

...

Keyword(s):

Qualitative Research ◽

Sustainable Agriculture ◽

Research Design ◽

Thematic Analysis ◽

Well Being ◽

Community Supported Agriculture ◽

Structured Interviews ◽

Qualitative Research Design ◽

Nutritional Characteristics

Background: There is a growing amount of research interest to understand the role of food in well-being. The demand for community supported agriculture (CSA), bringing people spatially, economically, and socially closer to food, is continuously expanding. CSAs play an important role in both sustainable agriculture practices and influencing consumers’ food-related practices, but yet have received little attention in well-being research. Methods: This study explores food-related well-being among CSA members by using an exploratory, qualitative research design and a thematic analysis of semi-structured interviews. Results: The findings stress the relevance of psychological, social, and spiritual aspects of food-related well-being beyond the nutritional characteristics of food in CSA. Conclusion: The role of sustainable agriculture in contributing to food-related well-being becomes particularly evident based on consumers’ experiences. These results are important in convincing people that their food-related experiences belong to their perceived well-being as well as stimulating people to elevate their multidimensional expectations in relation to food.

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Improving peri-operative psychosocial interventions for children with autism spectrum disorder undergoing ENT procedures

The Journal of Laryngology & Otology ◽

10.1017/s0022215120002029 ◽

2020 ◽

Vol 134 (9) ◽

pp. 838-844

Author(s):

R Fahy ◽

M Corbett ◽

I Keogh

Keyword(s):

Autism Spectrum Disorder ◽

Special Needs ◽

Children With Autism ◽

Psychosocial Interventions ◽

Autism Spectrum ◽

Spectrum Disorder ◽

Structured Interviews ◽

Social Story ◽

Staff Members ◽

Clear Communication

AbstractObjectivesChildren with autism spectrum disorder face a broad range of communication and sensory challenges. Many of these children also have chronic ENT issues. This study aims to better understand these challenges and improve our services for children with autism spectrum disorder.MethodsQuestionnaires and semi-structured interviews were carried out with parents of children with autism spectrum disorder.ResultsThirty-four individuals participated, comprising 9 caregivers and 25 staff members. All parents recognised their critical roles in understanding their children's special needs and sensitivities. Parents and staff stressed the importance of a partnership role that inquired about unique needs, leading to environmental modifications for individual children.ConclusionThe importance of listening to and involving caregivers is a fundamental tenet; parents must be recognised as the experts. Uncertainty must be kept to a minimum, with clear communication in a structured, low-arousal environment for these children. We have listened to parents and staff, and developed a social story.

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