Parents' Education Shapes, but Does Not Originate, the Disability Representations of Their Children.
ABSTRACT: The present research tested whether children's disability representations are influenced by cultural variables (e.g., social activities, parent education, custom complex variables) or by cognitive constraints. Four questionnaires were administered to a sample of 76 primary school aged children and one of their parents (n = 152). Questionnaires included both open-ended and closed-ended questions. The open-ended questions were created to collect uncensored personal explanations of disability, whereas the closed-ended questions were designed to elicit a response of agreement for statements built on the basis of the three most widespread disability models: individual, social, and biopsychosocial. For youngest children (6-8 years old), people with disabilities are thought of as being sick. This early disability representation of children is consistent with the individual model of disability and independent from parents' disability explanations and representations. As children grow older (9-11 years old), knowledge regarding disability increases and stereotypical beliefs about disability decrease, by tending to espouse their parents representations. The individual model remains in the background for the adults too, emerging when the respondents rely on their most immediately available mental representation of disability such as when they respond to an open-ended question. These findings support that the youngest children are not completely permeable to social representations of disability likely due to cognitive constraints. Nevertheless, as the age grows, children appear educable on perspectives of disability adhering to a model of disability representation integral with social context and parent perspective.
Project description:Background:Children diagnosed with autism spectrum disorder (ASD) have social and cognitive disabilities. For parents, these behaviors can lead to humiliation, social exclusion, and isolation. Stigma is a problem that not only may affect the individual with high functioning autism, but has the potential to extend to their family as well. Indeed, research indicates that the parents of children with disabilities (including ASD) commonly experience stigmatizing reactions from others. Aim of work:To determine the prevalence of self and enacted stigma among parents of ASD children from Riyadh, Saudi Arabia, and recognize possible risk factors and causes of stigmatization. Material and methods:An observational cross-sectional study involving the parents of ASD children from Riyadh, Saudi Arabia. About 163 participants were included from the Centre for Autism Research (CFAR) at King Faisal Specialist Hospital & Research Centre (KFSH & RC) in Riyadh. The primary material used for data collection was a five-point scale questionnaire developed by the investigator. The questionnaire consisted closed ended questions related to the participants' demographic data, autistic child, family life, resources, and social experiences as a parent. The collected data were analyzed using descriptive statistics and appropriate statistical analysis, using Statistical package for the social sciences (SPSS), version 22. The level of significance was P value?<?.05. Results:The findings of this work indicated that 55 (33.7%) of the parents scored more than 3 in answering questions related to felt stigma; 82 (50.3%) were fathers. On the other hand, 108 (66.3%) did not feel stigmatized being a parent of autistic child. Forty-two (25.8%) of the parents scored more than 3 in answering questions related to enacted stigma, whereas 121 (74.2%) did not face enacted stigmatization being a parent of autistic child. There was a strong tendency for mothers (41, 75%) to feel more self- and enacted stigmatized than fathers (P?<?.05). Moreover, the gender of the autistic child, consanguinity, severity of the ASD, and the monthly income of the family showed no significant difference in the parents who scored more than 3 for felt- or enacted stigmatization (P?>?.05). Conclusion:Among participated parents of children with ASD in Riyadh, Saudi Arabia, 33.7% of them experienced stigmatization, and mothers felt more self- and enacted stigmatized when compared to fathers. Public awareness among people in Saudi Arabia have been increased and, thus, negative stigmatization has decreased among parents in the country. A high level of felt stigma suggests the need for psychological intervention for the family to help cope with this new situation. A higher level of enacted stigma suggests the need for their rights (individuals with ASD) and increased awareness in the society. It is recommended that further research is needed in different centers in Riyadh and other regions of Saudi Arabia to investigate the prevalence of stigma in parents of autistic children.
Project description:The aim of this paper is to investigate the impact of an extended lifespan of parents on middle-aged women and men from a demographic, sociological and psychological perspective. Based on Swiss data, three main research questions are investigated and discussed in three different sections: (a) How far has the common lifespan of children and parents been extended and how does it affect kinship structures? (b) How accurate is the term of "sandwich generation" in this context? (c) Which are the psychological concomitants-in terms of filial maturity-of being reinvolved with one's old parents in mid-life? The demographic analyses illustrate a considerable extension of common lifespan of children and parents. Combined with low fertility rates this results in rapidly increasing parent-support ratios. A sociological approach analysing the concept of "sandwich generation" indicates that, for women, a new kind of double burden (professional work and family care) is more widespread than being 'sandwiched' between the youngest and the oldest generation. Finally, in the third section, results are reported from a longitudinal study of middle-aged persons living in different social contexts (such as living or not living with a partner and/or children) on the intrapsychic concomitants of becoming reinvolved with one's parents. The response patterns reveal a considerable intergenerational ambivalence. Although the possibility to help old parents depends heavily on living context and is a question of available resources, the willingness to help is also closely related to psychological variables such as attachment.
Project description:BACKGROUND: Many patients with disability require orthodontic treatment (OT) to achieve adequate oral function and aesthetic appearance. The cooperation of disabled patients and of their parents is central to the success of OT, as treatment can involve ethical dilemmas. The aim of this study was to analyze the motivation, expectations and overall satisfaction with OT among parents of patients with disabilities. METHODS: The parents of 60 disabled Spanish children with physical, mental and/or sensory impairment undergoing OT were surveyed on attitudes to OT and level of satisfaction with the outcomes. The survey consisted of 23 questions in 4 sections: attitude and adaptation, benefits, adverse effects, and level of satisfaction after completion of OT. A control group formed of the parents of 60 healthy children undergoing OT at the same institution were also surveyed. RESULTS: Parents of disabled children undergoing OT showed a high level of motivation and they are willing to collaborate in oral hygiene procedures. Adaptation to the removable appliances was poorer in disabled children but adaptation to fixed appliances was excellent. OT can provide a marked improvement in quality of life, social relationships and oral functionality in disabled children. CONCLUSIONS: Among parents of disabled children undergoing OT, the perceived level of overall satisfaction was very high and expectations were often exceeded.
Project description:A growing literature has demonstrated a relationship between parity and mortality, but the explanation for that relationship remains unclear. This study aims to pick apart physiological and social explanations for the parity-mortality relationship by examining the mortality of parents who adopt children, but who have no biological children, in comparison with the mortality of parents with biological children. Using Swedish register data, we study post-reproductive mortality amongst women and men from cohorts born between 1915 and 1960, over ages 45-97. Our results show the relative risks of mortality for adoptive parents are always lower than those of parents with biological children. Mortality amongst adoptive parents is lower for those who adopt more than one child, while for parents with biological children we observe a U-shaped relationship, where parity-two parents have the lowest mortality. Our discussion considers the relative importance of physiological and social depletion effects, and selection processes.
Project description:PURPOSE:In on-line forums, parents have been reporting that their children are experiencing what is described here as "rapid-onset gender dysphoria," appearing for the first time during puberty or even after its completion. The onset of gender dysphoria seemed to occur in the context of belonging to a peer group where one, multiple, or even all of the friends have become gender dysphoric and transgender-identified during the same timeframe. Parents also report that their children exhibited an increase in social media/internet use prior to disclosure of a transgender identity. The purpose of this study was to document and explore these observations and describe the resulting presentation of gender dysphoria, which is inconsistent with existing research literature. METHODS:Recruitment information with a link to a 90-question survey, consisting of multiple-choice, Likert-type and open-ended questions, was placed on three websites where parents had reported rapid onsets of gender dysphoria. Website moderators and potential participants were encouraged to share the recruitment information and link to the survey with any individuals or communities that they thought might include eligible participants to expand the reach of the project through snowball sampling techniques. Data were collected anonymously via SurveyMonkey. Quantitative findings are presented as frequencies, percentages, ranges, means and/or medians. Open-ended responses from two questions were targeted for qualitative analysis of themes. RESULTS:There were 256 parent-completed surveys that met study criteria. The adolescent and young adult (AYA) children described were predominantly female sex at birth (82.8%) with a mean age of 16.4 years. Forty-one percent of the AYAs had expressed a non-heterosexual sexual orientation before identifying as transgender. Many (62.5%) of the AYAs had been diagnosed with at least one mental health disorder or neurodevelopmental disability prior to the onset of their gender dysphoria (range of the number of pre-existing diagnoses 0-7). In 36.8% of the friendship groups described, the majority of the members became transgender-identified. The most likely outcomes were that AYA mental well-being and parent-child relationships became worse since AYAs "came out". AYAs expressed a range of behaviors that included: expressing distrust of non-transgender people (22.7%); stopping spending time with non-transgender friends (25.0%); trying to isolate themselves from their families (49.4%), and only trusting information about gender dysphoria from transgender sources (46.6%). CONCLUSION:Rapid-onset gender dysphoria (ROGD) describes a phenomenon where the development of gender dysphoria is observed to begin suddenly during or after puberty in an adolescent or young adult who would not have met criteria for gender dysphoria in childhood. ROGD appears to represent an entity that is distinct from the gender dysphoria observed in individuals who have previously been described as transgender. The worsening of mental well-being and parent-child relationships and behaviors that isolate AYAs from their parents, families, non-transgender friends and mainstream sources of information are particularly concerning. More research is needed to better understand this phenomenon, its implications and scope.
Project description:Family caregiving is a growing phenomenon with the increased prevalence of chronic illness and shorter hospitalizations. Rare diseases pose significant challenges not only to patients living with these kinds of pathologies but also to those who care for these patients. The caregiving role has specific characteristics. The present work aims to increase knowledge of the challenges that are common or specific to fathers and mothers of children diagnosed with a rare disease. Moreover, the paper analyses the kinds of social support they experience according to gender. A descriptive study was conducted using grounded theory methodology. A semi-structured interview with open-ended questions was conducted with 15 parents of children with a rare disease. The interview was organized into three main areas: personal experiences in caring for a child with a rare disease, family changes and perceived social support. The transcriptions were analyzed using NVivo 11 software. From data analysis, themes emerged regarding the challenges shared by fathers and mothers, but some aspects also emerged that were gender-specific. The analyses of differences between mothers' and fathers' narratives showed that there is a specific experience of the impact that caregiving has on parents' relationships with their jobs and on their worries. Self-help group is the main source of social support for all respondents. We discuss these findings in relation to possible appropriate specific interventions and support for family caregiving.
Project description:Caregiving roles of children <18 years of age living with parents with health conditions or disability have been studied extensively abroad, but little U.S. research has examined the caregiving activities and perceptions of children with parents with significant physical disability.To examine children's caregiving activities for their disabled parent, childhood perceptions of these activities, and adult views of this caregiving.We conducted 1-h, semi-structured, open-ended interviews with 20 persons age ?21 years who as children (age < 18 years) had a parent with significant mobility disability. We used conventional content analysis to identify themes.Interviewees' mean (standard deviation) age was 36.7 (13.8) years; 4 were male. As children, most interviewees assisted their disabled parent with activities of daily living (ADLs) and instrumental ADLs; some children provided more medical supports. Several parents, especially of older interviewees, did not seek their children's care. Interviewees reported both positive and negative childhood attitudes about caregiving. Roughly half recalled as children feeling proud, special, or otherwise positively toward caregiving activities, while about one-third viewed caregiving as just part of their daily reality (i.e., simply needing to be done). Approximately half remembered also feeling resentful, primarily from time demands, insufficient appreciation, and being different from their peers. Interviewees reported gender and cultural factors affecting their caregiving roles and perceptions.Children can provide significant care to parents with physical disability. Understanding better their roles and perceptions could suggest ways to improve these experiences for both child and parent.
Project description:Purpose: Parent support is considered crucial for the health of transgender and gender-nonconforming (trans/GNC) children, yet little research has focused on how to support parents and caregivers. This study considered the experience of participation in a support group for parents of transgender children on families. Methods: Online surveys were conducted with parents whose children were receiving clinical care at a gender specialty clinic and who participated at least once in a monthly support group. Close-ended questions addressed the importance of participation and open-ended questions addressed the specific ways it was helpful, how it impacted them and their trans/GNC child, and if they faced barriers to participating. Results: The majority of the 48 participants (77.1%) identified as female. The mean age of their trans/GNC child was 13.9 years (standard deviation 5.1, range 5-22 years); just over half (n=25) of their trans/GNC children identified as male. Participants overwhelmingly reported positive experiences with the support group, with 72.9% reporting that the group was either important or critically important to them and 66.7% reporting that it was important or critically important to their trans/GNC child. Perceived benefits included the opportunity to learn about legal, medical, and school issues and receive emotional support. Conclusion: Support groups provide an important complement to specialized clinical care for families with trans/GNC children. Logistical challenges, lack of age peers, and lack of people of color all served as limitations of the group. Further research is needed to understand the experiences of fathers and to determine if the support group model would be effective with racially/ethnically and economically diverse populations.
Project description:OBJECTIVE:Functional abdominal pain occurs frequently in children and adolescents. It is an exclusion diagnosis; somatic diseases have to be ruled out. However little explanation is given for why the child is experiencing pain. The aim was to explore the experiences of parents of children with chronic abdominal pain discharged from hospital without a somatic explanation. DESIGN:The study has a qualitative design. The open questions concerned pain experiences and management. Interviews were conducted at the hospital, at the parents' workplace or in their homes, audiotape recorded and transcribed. A descriptive content analysis was used to analyse the transcribed text. SETTING:Parents of children referred from general practice located in urban and rural areas in two municipals in Norway. PARTICIPANTS:Fourteen parents of children with functional abdominal pain aged 5-15 years. RESULTS:Fourteen parents participated. Some explained that their child's disability glued the parents together on a common project to help the child. Other parents could tell that siblings got less attention and complained about too much fuss during pain. Parents wished for diagnosis that could be treated efficiently. Some were still anxious that an undetected condition triggered pain. They prompted their doctor to do further examinations. However, some parents knew that social factors could inflict pain and were concerned that their child was unable to distinguish sensations like anxiety and 'butterfly' tensions from physical pain. The parents and children needed professional guidance on how to manage the pain . CONCLUSION:The doctor's consultation should not end at the diagnosis of functional abdominal pain. Doctors may help these families further by focusing on pain management strategies.
Project description:BACKGROUND:Understanding reasons for and against vaccination from the parental perspective is critical for designing vaccination campaigns and informing other interventions to increase vaccination uptake in Canada. The objective of this study was to understand maternal vaccination decision making for children. METHODS:Mothers participating in a longitudinal community-based pregnancy cohort, the All Our Babies study in Calgary, Alberta, completed open-ended survey questions providing explanations for the vaccination status of their child by 24?months postpartum. Qualitative responses were linked to administrative vaccination records to examine survey responses and recorded child vaccination status. RESULTS:There were 1560 open-ended responses available; 89% (n?=?1391) provided explanations for vaccinating their children, 5% (n?=?79) provided explanations for not vaccinating/delaying, and 6% (n?=?90) provided explanations for both. Themes were similar for those vaccinating and not vaccinating/delaying; however, interpretations were different. Two broad themes were identified: Sources of influence and Deliberative Processes. Sources of influence on decision making included personal, family, and external experiences. Deliberative Processes included risk, research, effectiveness, and balancing risks/benefits. Under Deliberative Processes, responsibility was a category for those vaccinating; while choice, instrumental/practical, and health issues were categories for those not vaccinating/delaying. Mothers' levels of conviction and motivation provided a Context for understanding their decision making perspectives. CONCLUSIONS:Vaccination decision making is complex and impacted by many factors that are similar but contribute to different decisions depending on mothers' perspectives. The results of this study indicate the need to examine new intervention approaches to increase uptake that recognize and address feelings of pressure and parental commitment to choice.