scholarly journals Young People with Intellectual Disability and Their Experiences with Intimate Relationships: a Follow-up Analysis of Parents’ and Caregivers’ Perspectives

2022 ◽  
Author(s):  
Laura Retznik ◽  
Sabine Wienholz ◽  
Annelen Höltermann ◽  
Ines Conrad ◽  
Steffi G. Riedel-Heller
Keyword(s):  
Intellectual Disability ◽  
Young People ◽  
Sex Education ◽  
Intimate Relationships ◽  
Public Transportation ◽  
Qualitative Content Analysis ◽  
Negative Relationship ◽  
Relationship Skills ◽  
Social Opportunities

Abstract Background Research shows that people with intellectual disability both want and benefit from relationships. Caregivers play an important role in the development and maintenance of these relationships. Barriers to relationships include lack of privacy, inadequate sex education, and lack of public transportation. Method The sample included 42 primary caregivers of young people with intellectual disability aged 14 to 25. Interviews were evaluated with the qualitative content analysis. Results Two-thirds of the caregivers reported the young people having had at least one relationship. The caregivers tended to minimize the importance of the young people’s relationships and reported, in equal measure, both positive and negative relationship skills. Caregivers described limited choice in terms of partner selection, lack of social opportunities, and low quality couple time. Parents face the detachment process with ambivalence and wish for a stable partnership for their children in the future. Discussion Young people with intellectual disability face barriers and limitations regarding intimate relationships. Some young people may keep their partnerships secret to avoid possible restrictions from their caregivers. Their time together is quantitatively high, but qualitatively poor due to a lack of transportation and inclusive services. Caregivers need to support the young people’s autonomy and take their relationships more seriously.

scholarly journals "Everyone would like their child to have a boyfriend or a girlfriend." Young People with Intellectual Disability and their Experiences with Intimate Relationships: A Follow-up Analysis of Parents' and Caregivers' Perspectives

2021 ◽  
Author(s):  
Laura Retznik ◽  
Sabine Wienholz ◽  
Annelen Höltermann ◽  
Ines Conrad ◽  
Steffi G. Riedel-Heller
Keyword(s):  
Intellectual Disability ◽  
Young People ◽  
Sex Education ◽  
Intimate Relationships ◽  
Public Transportation ◽  
Qualitative Content Analysis ◽  
Negative Relationship ◽  
Relationship Skills ◽  
Social Opportunities

Abstract Background Research shows that people with intellectual disability both want and benefit from relationships. Caregivers play an important role in the development and maintenance of these relationships. Barriers to relationships include lack of privacy, inadequate sex education, and lack of public transportation.Method The sample included 42 primary caregivers of young people with intellectual disability aged 14 to 25. Interviews were evaluated with the qualitative content analysis.Results Two-thirds of the caregivers reported the young people having had at least one relationship. The caregivers tended to minimize the importance of the young people’s relationships and reported, in equal measure, both positive and negative relationship skills. Caregivers described limited choice in terms of partner selection, lack of social opportunities, and low quality couple time. Parents face the detachment process with ambivalence and wish for a stable partnership for their children in the future.Discussion Young people with intellectual disability face barriers and limitations regarding intimate relationships. Some young people may keep their partnerships secret to avoid possible restrictions from their caregivers. Their time together is quantitatively high, but qualitatively poor due to a lack of transportation and inclusive services. Caregivers need to support the young people’s autonomy and take their relationships more seriously.

Sexuality and Sex Education of Adolescents with Intellectual Disability: Mothers' Attitudes, Experiences, and Support Needs

2012 ◽  
Vol 50 (2) ◽  
pp. 140-154 ◽  
Author(s):  
Jaycee Dawn Pownall ◽  
Andrew Jahoda ◽  
Richard Patrick Hastings
Keyword(s):  
Intellectual Disability ◽  
Young People ◽  
Sex Education ◽  
Sexual Development ◽  
Intimate Relationships ◽  
Support Needs ◽  
Attitudes And Behaviors ◽  
Readiness To Learn ◽  
Sexual Vulnerability ◽  
Children With Intellectual Disability

Abstract Few studies have considered families' views about adolescents' sexual development. The authors compared attitudes and behaviors of mothers of young people with (n  =  30) and without intellectual disability (n  =  30). Both groups placed similar importance on dealing with their children's developing sexuality and were similarly confident in doing so. Mothers of young people with intellectual disability held more cautious attitudes about contraception, readiness to learn about sex, and decisions about intimate relationships. Mothers expressed concerns about their children with intellectual disability and sexual vulnerability. They had also spoken about fewer sexual topics with their children and began these discussions when their children were older. The findings can inform more sensitive supports and materials to help families deal with the sexual development of their offspring.

scholarly journals Association of Brain Natriuretic Peptide With Mortality in Exceptionally Long-Lived Families

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 211-211
Author(s):  
Allison Kuipers ◽  
Robert Boudreau ◽  
Mary Feitosa ◽  
Angeline Galvin ◽  
Bharat Thygarajan ◽  
...  
Keyword(s):  
Older Adults ◽  
Brain Natriuretic Peptide ◽  
Natriuretic Peptide ◽  
Sex Education ◽  
Proportional Hazards ◽  
Cox Proportional Hazards ◽  
Time To Event ◽  
Healthy Older Adults ◽  
Secondary Analyses

Abstract Natriuretic peptides are produced within the heart and released in response to increased chamber wall tension and heart failure (HF). N-Terminal prohormone Brain Natriuretic Peptide (NT-proBNP) is a specific natriuretic peptide commonly assayed in persons at risk for HF. In these individuals, NT-proBNP is associated with future disease prognosis and mortality. However, its association with mortality among healthy older adults remains unknown. Therefore, we determined the association of NT-proBNP with all-cause mortality over a median follow-up of 10 years in 3253 individuals free from HF at baseline in the Long Life Family Study, a study of families recruited for exceptional longevity. We performed cox proportional hazards analysis (coxme in R) for time-to event (mortality), adjusted for field center, familial relatedness, age, sex, education, smoking, alcohol, physical activity, BMI, diabetes, hypertension, and cancer. In addition, we performed secondary analyses among individuals (N=2457) within the normal NT-proBNP limits at baseline (<125pg/ml aged <75 years; <450pg/ml aged ≥75 years). Overall, individuals were aged 32-110 years (median 67 years; 44% male), had mean NT-proBNP of 318.5 pg/ml (median 91.0 pg/ml) and 1066 individuals (33%) died over the follow-up period. After adjustment, each 1 SD greater baseline NT-proBNP was associated with a 1.30-times increased hazard of mortality (95% CI: 1.24-1.36; P<0.0001). Results were similar in individuals with normal baseline NT-proBNP (HR: 1.21; 95% CI: 1.11-1.32; P<0.0001). These results suggest that NT-proBNP is a strong and specific biomarker for mortality in older adults independent of current health status, even in those with clinically-defined normal NT-proBNP.

scholarly journals Exploring Factors Associated with Functional Change and Predictors of Participation Improvement—A Two Years Follow-Up on People with Depression

2021 ◽  
Vol 18 (7) ◽  
pp. 3439
Author(s):  
Wen-Chou Chi ◽  
Chia-Feng Yen ◽  
Tsan-Hon Liou ◽  
Kwang-Hwa Chang ◽  
Hua-Fang Liao ◽  
...  
Keyword(s):  
Functional Status ◽  
Social Participation ◽  
Negative Relationship ◽  
General Function ◽  
Living Situation ◽  
Persons With Disabilities ◽  
Factors Associated ◽  
Whodas 2.0 ◽  
Household Activities

The purpose of this study is to understand the functional status distribution and to explore the factors associated with changes in functional status and social participation in people with depression using two-year follow-up data. Subjects were selected from the Taiwan Databank of Persons with Disabilities (TDPD) if they had an evaluation date between July 2012 and 31 December 2017. We used data for 1138 individuals with multiple evaluation records and who were diagnosed with depression. The WHO Disability Assessment Schedule 2.0 (WHODAS 2.0) was the primary functional status measure. Other factors selected from the TDPD included social demographic data, living situation, employment status, economic status, and educational level. The results show scores in all dimensions of the WHODAS 2.0 declined over two years, especially in the domains of cognition, household activities, social participation, and total WHODAS 2.0 score. Aging groups showed poor recovery in cognition, getting along with others, and household activities. People living in suburban areas showed poorer recovery than people living in rural and urban areas in cognition, self-care, and general function (total score of WHODAS 2.0). Employment was also strongly associated with functional recovery in household activities, social participation, and general function. The original scores for cognition and getting along with others showed a significant negative relationship with social participation improvement. Our results can be used by policy makers to provide resources and conduct investigations, and by clinicians when making rehabilitation plans.

scholarly journals Optimising medication management in children and young people with ADHD using a computerised test (QbTest): a feasibility randomised controlled trial

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Laura Williams ◽  
Charlotte L. Hall ◽  
Sue Brown ◽  
Boliang Guo ◽  
Marilyn James ◽  
...  
Keyword(s):  
Randomised Controlled Trial ◽  
Young People ◽  
Controlled Trial ◽  
Medication Management ◽  
Control Group ◽  
Global Functioning ◽  
Children And Young People ◽  
Link Type ◽  
Randomised Controlled

Abstract Background Medication for attention deficit hyperactivity disorder (ADHD) should be closely monitored to ensure optimisation. There is growing interest in using computerised assessments of ADHD symptoms to support medication monitoring. The aim of this study was to assess the feasibility and acceptability of a randomised controlled trial (RCT) to evaluate the efficacy of one such computerised assessment, the Quantified Behavior (Qb) Test, as part of medication management for ADHD. Methods This feasibility multi-site RCT conducted in child and adolescent mental health and community paediatric settings recruited participants aged 6–15 years diagnosed with ADHD starting stimulant medication. Participants were randomised into one of two arms: experimental (QbTest protocol) where participants completed a QbTest at baseline and two follow-up QbTests on medication (2–4 weeks and 8–10 weeks later) and control where participants received treatment as usual, including at least two follow-up consultations. Measures of parent, teacher, and clinician-rated symptoms and global functioning were completed at each time point. Clinicians recorded treatment decision-making and health economic measures were obtained. Data were analysed using multi-level modelling and participants (children and parents) and clinicians were interviewed about their experiences, resulting data were thematically analysed. Results Forty-four children and young people were randomised. Completion of study outcome measures by care-givers and teachers ranged from 52 to 78% at baseline to 47–65% at follow-up. Participants reported the questionnaires to be useful to complete. SNAP-IV inattention scores showed greater reduction in the intervention than the control group (− 5.85, 95% CI − 10.33, − 1.36,). Engagement with the intervention ranged from 100% at baseline, to 78% follow-up 1 and 57% follow-up 2. However, only 37% of QbTests were conducted in the correct time period. Interview data highlighted that the objectivity of the QbTest was appreciated by clinicians and parents. Clinicians commented that the additional time and resources required meant that it is not feasible to use QbTest for all cases. Conclusion The trial design and protocol appear to be feasible and acceptable but could be improved by modifying QbTest time periods and the method of data collection. With these changes, the protocol may be appropriate for a full trial. Adding QbTest may improve symptom outcome as measured by SNAP-IV. Trial registration ClinicalTrials.gov, NCT03368573, prospectively registered, 11th December 2017, and ISRCTN, ISRCTN69461593, retrospectively registered, 10th April 2018

scholarly journals Computerised cognitive–behavioural therapy for adults with intellectual disability: randomised controlled trial

2017 ◽  
Vol 211 (2) ◽  
pp. 95-102 ◽  
Author(s):  
Patricia Cooney ◽  
Catherine Jackman ◽  
David Coyle ◽  
Gary O'Reilly
Keyword(s):  
Intellectual Disability ◽  
Randomised Controlled Trial ◽  
Primary Outcome ◽  
Outcome Measure ◽  
Controlled Trial ◽  
Behavioural Therapy ◽  
Primary Outcome Measure ◽  
Cognitive Behavioural ◽  
Randomised Controlled

BackgroundDespite the evidence base for computer-assisted cognitive–behavioural therapy (CBT) in the general population, it has not yet been adapted for use with adults who have an intellectual disability.AimsTo evaluate the utility of a CBT computer game for adults who have an intellectual disability.MethodA 2 × 3 (group × time) randomised controlled trial design was used. Fifty-two adults with mild to moderate intellectual disability and anxiety or depression were randomly allocated to two groups: computerised CBT (cCBT) or psychiatric treatment as usual (TAU), and assessed at pre-treatment, post-treatment and 3-month follow-up. Forty-nine participants were included in the final analysis.ResultsA significant group x time interaction was observed on the primary outcome measure of anxiety (Glasgow Anxiety Scale for people with an Intellectual Disability), favouring cCBT over TAU, but not on the primary outcome measure of depression (Glasgow Depression Scale for people with a Learning Disability). A medium effect size for anxiety symptoms was observed at post-treatment and a large effect size was observed after follow-up. Reliability of Change Indices indicated that the intervention produced clinically significant change in the cCBT group in comparison with TAU.ConclusionsAs the first application of cCBT for adults with intellectual disability, this intervention appears to be a useful treatment option to reduce anxiety symptoms in this population.

Education through and to love - Sexuality as a source of conflict in German pastoral care of youth and the possibilities of practice in sex education

2003 ◽  
Vol 2 (2) ◽  
pp. 93-103
Author(s):  
Stefan Gärtner
Keyword(s):  
Social Context ◽  
Young People ◽  
Pastoral Care ◽  
Sex Education ◽  
Life Situation ◽  
Positive Potential ◽  
Children And Young People ◽  
The Past

The climate in German Catholic pastoral care of youth with regards to sex education is in a sorry plight. This is due to the fact that the conflicts of the past are still very much alive. At the same time, however, there is a positive potential for development in this field of pastoral care of youth. This is especially significant, because friendship and sexuality are such important themes for children and young people. Indeed, pastoral care of youth will have to take into account their special life situation and the changed social context. Individualised, postmodern society offers a large number of sexual options. Against this background, we will end by outlining some fundamental perspectives for sex educational concepts in pastoral care of youth, in which teaching them to love and the ability to form relationships is central.

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