Scoping review: quality of life of siblings of children who are deaf and hard of hearing, have a vision or motor impairment.

This study identified the current state of knowledge about the Quality of Life (QoL) of siblings of children who are deaf and hard of hearing (DHH), have a vision impairment (VI) or motor impairment (MI). Additionally, factors associated with individual variation in QoL were examined. A scoping review was performed using PsycInfo, ERIC, Web of Science, and CINAHL. Empirical studies with siblings (age 0-18 years) of children who are DHH, have a VI or MI that investigate the QoL of siblings were included. A total of 1746 studies were identified of which 11 met the inclusion criteria. The results showed that QoL has different interpretations and various measurement tools are used. The findings showed both positive and negative outcomes for the QoL of siblings. For example, family cohesion was found as a positive consequence. A negative consequence could be a higher score on problem behavior. Personal and parental characteristics such as age and parental availability were two main factors related to individual variation in QoL. Insight in the factors related to individual variation may help researchers to consider the research perspective. In addition, healthcare providers can use the information to be either aware or intervene on specific factors that are related to the QoL of the children who are DHH, have a VI or MI and their siblings.

The impact of an eye drop booklet on distress in children when receiving eye drops.

PURPOSE: Child- and family-centered care is an increasingly important area in healthcare. Up to now, little attention has been paid to the experience of children and their parents in ophthalmological healthcare. During their conversations at Bartiméus, children indicated that the administration of eye drops constituted the most stressful element that needed to be improved. This study describes the amount of distress experienced by children when receiving eye drops. Furthermore, it investigates the value and impact of the developed eye drop booklet, for children and parents. METHODS: In this multicenter study on distress related to the administration of eye drops, 370 children participated with ocular disorders or Cerebral Visual Impairment CVI (4-12 years), from four ophthalmology outpatient clinics. Half of the children, randomly chosen, were presented with a booklet before receiving eye drops. A faces scale together with a numeric scale (0-10) was used to determine the level of distress before and after the eye drops were administered. Parents were asked how satisfied they were about using the booklet. RESULTS: The average distress score of the children who did receive a booklet was 3.40 at T1 and 2.70 at T2, and, of the children who did not receive a booklet, this was 3.69 at T1 and 2.97 at T2. The largest levels of distress were found in children between the ages of 7 and 9. The majority of parents indicated to appreciate the booklet, scoring it at 7.6 on a scale of 1 to 10. Furthermore, 91% of them considered the booklet a good idea or good preparation, 69% found it to have a positive effect on their child, and 83% would use it again. CONCLUSIONS: At T1 and T2, the differences in the children's distress scores were not statistically significant between the booklet group and the group who did not use the booklet. Children, generally, anticipated greater discomfort than what they actually experienced during the administration of eye drops. For most children, the booklet had a positive effect on their distress levels, but not for all. A large majority of parents noticed the added value of the booklet for their child. They were very positive and wanted to continue using the booklet in the future, as it appeared to give their child a sense of control during the administration of eye drops.

Loneliness in young adults with a visual impairment: Links with perceived social support in a twenty-year longitudinal study.

BACKGROUND: Young people with disabilities are more at risk of experiencing loneliness in later life than their typically developing peers. AIM: To identify those who become lonely in later life, trajectories of perceived parent and peer support from adolescence to adulthood of young people with a visual impairment were studied. METHODS: A total of 316 adolescents (M = 18 years; SD = 6.5) enrolled in a cohort study in 1996; 205 of them participated in 2005, 178 in 2010, and 161 in 2016. Latent growth curve models were fitted to the data. RESULTS: Perceived parent support followed a linear decreasing course. No association was found between perceived parent support and loneliness in later life. For perceived peer support a quadratic growth pattern was found, with an increase in peer support up to age 27, and thereafter a decrease. Both the initial level and the rate of change in perceived peer support significantly predicted loneliness in adulthood. CONCLUSIONS: The course of peer support is a better indicator for the risk of loneliness in later life than support from parents. Normative life transitions may affect the already vulnerable social support for young people with a visual impairment. This study highlights the importance of establishing and maintaining peer relationships throughout life.

Improving social participation of adolescents with a visual impairment with community-based mentoring: results from a randomized controlled trial.

Purpose: The efficacy of a community-based mentoring program for adolescents with a visual impairment vs. care-as-usual was tested on social participation including satisfaction with social support.Materials and methods: Adolescents (15-22 years; 46% boys) were randomized to an intervention group with mentors with visual impairment (N = 25), an intervention group with mentors without visual impairment (N = 26), or care-as-usual (N = 25). One-on-one mentoring activities regarded school/work, leisure activities, and social relationships.Results and conclusions: Multilevel growth modelling revealed no effect of mentoring on changes in social participation compared to the care-as-usual group (participation [95% CI -0.30, 0.21, d = 0.1]; social participation composite [95% CI -0.24, 0.26, d = 0.24]). Mentees matched to mentors with visual impairments increased more on satisfaction with their social support compared to mentees matched to mentors without impairments and the care-as-usual group [95% CI 0.02, 0.49, d = 0.38]. Age, characteristics of the impairment, and number of match meetings were not associated with change in social participation during the mentoring program. This evaluation showed no benefit of mentoring for social participation of adolescents with a visual impairment. The value of mentors and mentees sharing the same disability needs further investigation. This trial is registered in the Netherlands Trial Register NTR4768.Implications for rehabilitationA community-based mentoring program resulted in no benefits for adolescents with a visual impairment on their social participation.A community-based mentoring program should not replace care-as-usual provided to young people with a visual impairment in the Netherlands. It could only be thought of as an additional service within rehabilitation.Matching mentees and mentors based on sharing the same disability could strengthen the effect of a community-based mentoring program. However, these benefits are rather small.Providing additional support for the social participation of young people with a visual impairment might be especially helpful for those with a progressive impairment and with comorbid problems.

Does having a similar disability matter for match outcomes?: A randomized study of matching mentors and mentees by visual impairment.

Mentoring is modestly effective for youth with a chronic illness or physical disability; however, program effectiveness may be enhanced when mentors and mentees are matched on shared interests and experiences. To test this hypothesis, mentees were randomly assigned to having a mentor with or without visual impairment (VI). Results showed that mentors without VI were younger and more likely to work or be educated in a helping profession and less likely to have a fixed mindset and extremely high positive expectations than mentors with VI. The main analyses on match outcomes showed that mentors with VI had significantly fewer and shorter match meetings, had a weaker relationship with their mentees, and were more likely to end their match prematurely. Mentor age, helping profession background, and fixed mindset were confounds in several analyses and reduced the significance of the relationship between VI group and match meeting quantity. The only relationship that remained significant controlling for covariates showed that matches including a mentor with VI were significantly more likely to end in premature closure than matches including a mentor without VI. Implications of the findings for future research and program practices related to matching were discussed.

The efficacy of VIPP-V parenting training for parents of young children with a visual or visual-and-intellectual disability: a randomized controlled trial.

Video-feedback Intervention to promote positive parenting-visual (VIPP-V) or visual-and-intellectual disability is an attachment-based intervention aimed at enhancing sensitive parenting and promoting positive parent-child relationships. A randomized controlled trial was conducted to assess the efficacy of VIPP-V for parents of children aged 1-5 with visual or visual-and-intellectual disabilities. A total of 37 dyads received only care-as-usual (CAU) and 40 received VIPP-V besides CAU. The parents receiving VIPP-V did not show increased parental sensitivity or parent-child interaction quality, however, their parenting self-efficacy increased. Moreover, the increase in parental self-efficacy predicted the increase in parent-child interaction. In conclusion, VIPP-V does not appear to directly improve the quality of contact between parent and child, but does contribute to the self-efficacy of parents to support and to comfort their child. Moreover, as parents experience their parenting as more positive, this may eventually lead to higher sensitive responsiveness and more positive parent-child interactions.

Job satisfaction of people with intellectual disabilities: the role of basic psychological need fulfillment and workplace participation.

PURPOSE: Knowledge on what contributes to job satisfaction of people with intellectual disabilities is limited. Using self-determination theory, we investigated whether fulfillment of basic psychological needs (i.e., autonomy, relatedness, competence) affected job satisfaction, and explored associations between workplace participation, need fulfillment and job satisfaction. METHOD: A total of 117 persons with intellectual disabilities, recruited from a Dutch care organization, were interviewed on need fulfillment at work and job satisfaction. Data on workplace participation was obtained from staff. Questionnaires were based on well-established instruments. RESULTS: Basic psychological need fulfillment predicted higher levels of job satisfaction. Level of workplace participation was not associated with need fulfillment or job satisfaction. CONCLUSIONS: Allowing workers with intellectual disabilities to act with a sense of volition, feel effective, able to meet challenges, and connected to others is essential and contributes to job satisfaction. It is needed to pay attention to this, both in selection and design of workplaces and in support style. Implications for rehabilitation Knowledge on factors that contribute to job satisfaction is necessary to improve employment situations and employment success of people with intellectual disabilities. In order to achieve job satisfaction, it is essential that workplaces allow for fulfillment of the basic psychological needs for autonomy, relatedness, and competence of people with intellectual disabilities. People with intellectual disabilities are able to report on their needs and satisfaction, and it is important that their own perspective is taken into account in decisions regarding their employment situation.

Job Satisfaction of People With Intellectual Disability: Associations With Job Characteristics and Personality.

To obtain an understanding of factors associated with job satisfaction of people with intellectual disability (ID), this study investigates the associations of job satisfaction with job characteristics (i.e., job demands, job resources) and personality, using the job demands-resources model. Data were gathered from 117 people and their employment support workers, using structured questionnaires adapted from well-established instruments. Job resources and age were positively associated with job satisfaction. Job demands and personality showed no significant direct associations with job satisfaction. Moderation analyses showed that for people with ID with high conscientiousness, enhanced job demands were associated with reduced job satisfaction, which was not the case for those with low conscientiousness. This study emphasizes the importance of job design.

Parents with intellectual disability.

Questions around parents with intellectual disability have changed according to sociocultural shifts in the position and rights of people with intellectual disability. The early research focus on capacity for parenting has given way to a contextual model of parenting and child outcomes, increasingly tested in population-based samples. Epidemiological research shows that contextual variables such as low income, exposure to violence, and poor mental health partly account for negative outcomes. As theoretical models developed for other at risk populations prove increasingly helpful for understanding the challenges of parenting with intellectual disability, it becomes viable to adapt existing evidence-based parenting interventions and test these for this population. Ultimately, parenting research should become fully inclusive.

A Systematic Review of the Literature on Parenting of Young Children with Visual Impairments and the Adaptions for Video-Feedback Intervention to Promote Positive Parenting (VIPP).

Secure parent-child attachment may help children to overcome the challenges of growing up with a visual or visual-and-intellectual impairment. A large literature exists that provides a blueprint for interventions that promote parental sensitivity and secure attachment. The Video-feedback Intervention to promote Positive Parenting (VIPP) is based on that blueprint. While it has been adapted to several specific at risk populations, children with visual impairment may require additional adjustments. This study aimed to identify the themes that should be addressed in adapting VIPP and similar interventions. A Delphi-consultation was conducted with 13 professionals in the field of visual impairment to select the themes for relationship-focused intervention. These themes informed a systematic literature search. Interaction, intersubjectivity, joint attention, exploration, play and specific behavior were the themes mentioned in the Delphi-group. Paired with visual impairment or vision disorders, infants or young children (and their parents) the search yielded 74 articles, making the six themes for intervention adaptation more specific and concrete. The rich literature on six visual impairment specific themes was dominated by the themes interaction, intersubjectivity, and joint attention. These themes need to be addressed in adapting intervention programs developed for other populations, such as VIPP which currently focuses on higher order constructs of sensitivity and attachment.

Alleviating Parenting Stress in Parents with Intellectual Disabilities: A Randomized Controlled Trial of a Video-feedback Intervention to Promote Positive Parenting.

BACKGROUND: Adapted parenting support may alleviate the high levels of parenting stress experienced by many parents with intellectual disabilities. METHODS: Parents with mild intellectual disabilities or borderline intellectual functioning were randomized to experimental (n = 43) and control (n = 42) conditions. Parents in both groups received care-as-usual. The experimental group also received an adapted version of video-feedback intervention for positive parenting and learning difficulties (VIPP-LD). Measures of parenting stress were obtained pre-test, post-test and 3-month follow-up. RESULTS: Randomization to the experimental group led to a steeper decline in parenting stress related to the child compared to the control group (d = 0.46). No statistically significant effect on stress related to the parent's own functioning or situation was found. CONCLUSIONS: The results of the study suggest the feasibility of reducing parenting stress in parents with mild intellectual disability (MID) through parenting support, to the possible benefit of their children.

Testing the effectiveness of a mentoring intervention to improve social participation of adolescents with visual impairments: study protocol for a randomized controlled trial.

BACKGROUND: Social participation is challenging for people with visual impairments. As a result, on average, social networks are smaller, romantic relationships formed later, educational achievements lower, and career prospects limited. Adolescents on their way towards achieving these goals may benefit from the knowledge and experience of adults who have overcome similar difficulties. Therefore, a mentoring intervention, called Mentor Support, will be set up and studied in which adolescents with visual impairments are matched with successfully social participating adults with and without visual impairments. The main objective of this study is to evaluate the effectiveness of Mentor Support. Secondary aims are to distinguish the importance of the disability-specific experience of mentors, predictors of success, and mediating factors. METHODS/DESIGN: The effect of Mentor Support will be tested in a randomized clinical trial, using pre-test one week before starting, post-test after 12 months, and follow-up after 18 months. Participants will be referred to one of the experimental groups or the control group, and this randomization will be stratified according to country region. Three groups are included in the trial: 40 participants will receive Mentor Support by mentors with a visual impairment in combination with care-as-usual, 40 participants will receive Mentor Support by mentors without visual impairments in combination with care-as-usual, and 40 participants will receive care-as-usual only. Mentor Support consists of 12 face-to-face meetings of the mentee with a mentor with an overall time period of one year. On a weekly basis, dyads have contact via email, the Internet, or telephone. The primary outcome measure is improved social participation within three domains (work/school, leisure activities, and social relationships). Mediator variables are psychosocial functioning and self-determination. Predictors such as demographics and personality are also investigated in order to distinguish the pathways to successful social participation. Intention-to-treat and completer analyses will be conducted. DISCUSSION: The primary outcomes of this trial regard increased social participation. The study may yield insights to further improve effects of support programs to adolescents with visual impairments. TRIAL REGISTRATION: Netherlands Trial Register NTR4768 (registered 4 September 2014).

The effectiveness of VIPP-V parenting training for parents of young children with a visual or visual-and-intellectual disability: study protocol of a multicenter randomized controlled trial.

BACKGROUND: Visual or visual-and-intellectual disabilities of children make daily interactions more difficult for their parents and may impact the quality of the parent-child relationship. To support these parents, an existing intervention (Video-feedback Intervention to promote Positive Parenting; VIPP; Juffer F, Bakermans-Kranenburg MJ, van IJzendoorn MH, 2008. Promoting positive parenting; an attachment-based intervention. Mahwah, NJ: Lawrence Erlbaum Associates; 2008) was adapted for use with parents of children with a visual or visual-and-intellectual disability (VIPP-V). This attachment-based intervention was hypothesized to support parents' interpretation and understanding of the behavior of their child with a visual or visual-and-intellectual disability and respond to their child's signals in a sensitive way to improve parent-child interaction quality. METHODS/DESIGN: A randomized controlled trial (RCT) will be conducted to assess the effectiveness of the adapted intervention VIPP-V (Video-feedback Intervention to promote Positive Parenting in parents of children with Visual or visual-and-intellectual disabilities). Parent-child dyads will be randomized into two groups: 50 dyads will receive VIPP-V in combination with care-as-usual and 50 dyads will receive care-as-usual. Families with a child (1-5 years of age) with a visual or visual-and-intellectual disability will be recruited for participation in the study. Primary outcome measures are parental sensitivity and the quality of parent-child interaction. Secondary outcome measures are parental self-efficacy, and parenting stress. To assess feasibility of implementation of the intervention the experiences of early intervention workers with regard to using VIPP-V are assessed. Moderator variables are the child's developmental age, working alliance between parent and VIPP-V intervention worker and empathy of the VIPP-V intervention worker. Data will be collected approximately one week before the intervention starts (T1), one week (T2) and three months (T3) after the intervention. Parent-child dyads in the care-as-usual-only condition will be assessed at the same time points. Both intention-to-treat and completer analyses will be performed. DISCUSSION: Descriptive findings in pilot cases suggest benefits from VIPP-V, and compatibility with existing services for parents of children with a visual or visual-and-intellectual disability. The current study will provide insight into the effectiveness of this intervention for parents of children with a visual or visual-and-intellectual disability, and, if the intervention is effective, prepare the field for broad-scale implementation. TRIAL REGISTRATION: Nederlands Trial Register NTR4306 (registered 5 December 2013).

Investigating rehabilitation needs of visually impaired young adults according to the International Classification of Functioning, Disability and Health.

PURPOSE: To gain qualitative insight into the rehabilitation needs of visually impaired young adults (18-25 years) and how these needs relate to the International Classification of Functioning, Disability and Health (ICF) and patient characteristics. METHODS: Rehabilitation needs and patient characteristics of young adults (N = 392) who applied for multidisciplinary services in 2012 and 2013 were obtained from structured and semi-structured intake records. Linking rules were used to assess how the needs related to Environmental Factors, Body Functions, Body Structures, and Activity and Participation (A&P) ICF components. The relationship between the type of rehabilitation goal and patient characteristics was assessed using multivariate logistic regression analyses. RESULTS: Most rehabilitation needs (67.6%; N = 510) were found on the A&P component of the ICF. Most prevalent needs were related to 'major life areas' (e.g. finding internship or job), followed by the chapters: 'mobility' (e.g. self-reliance in travelling), 'communication' (e.g. using communication devices and techniques), 'general tasks and demands' (e.g. psychological aspects of vision loss) and 'domestic life' (e.g. household tasks). Patients in one of the multidisciplinary rehabilitation centres (odds ratio (OR) = 7.07; 95% confidence interval (CI) [2.97-16.83]) and patients with comorbidity (OR = 3.82; 95% CI [1.62-9.02]) were more likely to report rehabilitation needs related to chapter E3 'support and relationships'. CONCLUSION: 'Major life areas' prevail in the content of rehabilitation needs, but tend to overshadow topics regarding peer interaction and social, community and civic life. A suitable survey method for young adults with visual impairments is required that contains rehabilitation domains and goals relevant to their lives and development.

Expecting change: mindset of staff supporting parents with mild intellectual disabilities.

This study of staff supporting parents with mild intellectual disabilities or borderline intellectual functioning (MID) focused on staff mindset regarding the extent to which parenting skills of parents with MID can change (an incremental mindset) or are static (an entity mindset). Staff mindset was tested as a predictor of two outcome variables: quality of the working alliance and parental waiting time to ask professional support. In addition, mindset was tested as a moderator of associations between parental adaptive functioning and the two outcome variables. A small majority of staff (56%) held a more incremental oriented mindset. A more incremental oriented mindset was associated with a shorter intended waiting time to seek professional support. Staff mindset moderated the association between parental adaptive functioning and working alliance, that is, lower levels of parental adaptive functioning were associated with lower working alliance quality, but the association was less strong when staff held a more incremental oriented mindset. The results of the current study show that staff mindset might be important for the quality of support for parents with MID and for reducing the risks for families where parents have MID. Attention is due to staff mindset in improving support for parents with MID.

Tailoring a video-feedback intervention for sensitive discipline to parents with intellectual disabilities: a process evaluation.

Parenting support programs for the general population may not be effective for parents with intellectual disabilities (ID). A videobased intervention program based on attachment and coercion theory (Video-feedback Intervention to promote Positive Parenting with additional focus on Sensitive Discipline; VIPP-SD) was tailored to parents with ID and the implementation of the adapted program was evaluated by the home visitors conducting the program. Home visitors (N = 17) of 36 families rated the intervention process during each session. Home visitors' evaluations showed a significant increase in positive ratings of parents' easiness to work with, amenability to influence, and openness. Cooperation remained stable. A case example illustrated this process, showing how feedback using video facilitated changes in the perceptions and attributions of a mother with mild ID.

Parents with intellectual disabilities seeking professional parenting support: the role of working alliance, stress and informal support.

Delaying or refraining from seeking advice and support in difficult parenting situations is identified as an important risk factor for child abuse and neglect. This study tested whether the extent of delays in support seeking is associated with working alliance for parents with mild intellectual disabilities (MID) and whether the importance of working alliance may depend on parenting stress and availability of informal support. Delays in support seeking were measured as parental latency (time waited) to approach the support worker. This latency was assessed in the intended response to hypothetical situations (vignettes) and in the reported behavioral response to real life difficult parenting situations from the preceding weeks. Multiple regression analyses were conducted for testing main and interaction effects of predictors on latency for support seeking. Better quality of the working alliance was associated with shorter intended latency to seek support for parents with MID, if parents had little access to informal support. Higher parenting stress predicted a shorter latency for intended support seeking. Parental support seeking intentions were positively associated with support seeking behavior. A good quality of the working alliance might be important to connect needs of parents with MID to resources that professional support can offer, in particular for the most vulnerable parents. Parental reluctance to seek professional support may be the result of a combination of risk and protective factors and is not always a sign of poor working alliance. Implications for risk assessment and support practice are discussed.

Perspectives of employees with intellectual disabilities on themes relevant to their job satisfaction. an explorative study using photovoice.

BACKGROUND: This study explored the perspectives of people with intellectual disabilities on themes relevant to their job satisfaction in integrated and sheltered employment. METHOD: The photovoice method was used. Nine participants with moderate to mild intellectual disabilities, working in integrated and sheltered employment, took pictures of aspects related to their job satisfaction. Each participant was subsequently interviewed about his/her pictures. Interview transcripts were content analysed to distinguish themes. RESULTS: Nine themes were found: the nature of the work itself, working conditions, experienced job demands, social relations at work, received support, perceived autonomy, opportunities for using competencies, opportunities for growth and development and meaningfulness. All themes were applicable in integrated and sheltered employment. CONCLUSIONS: From the perspective of people with intellectual disabilities, various themes relate to their job satisfaction, either in positive or negative ways. Photovoice appeared to be a valuable approach, facilitating participants in expressing their views and providing in-depth information.

Attachment, intellectual disabilities and mental health: research, assessment and intervention.

BACKGROUND: Attachment theory is highly influential in child and adult mental health research and practice. Research and practice have started now to explore the potential value of an attachment perspective for understanding and alleviating the challenges that persons with intellectual disabilities face in mental health and social participation. MATERIALS AND METHODS: Research on attachment and intellectual disabilities is reviewed on its importance for knowledge, assessment and intervention. RESULTS: Progress was found in understanding and distinguishing attachment behaviours, attachment relationships, attachment representations, attachment styles and attachment disorders and their respective implications for assessment and intervention. CONCLUSIONS: Of the various attachment-related concepts, insights into attachment behaviours and relationships showed the most promise for practical applications in the field of intellectual disabilities. Findings on representations, styles and disorders were inconclusive or preliminary. Attachment-informed research and practice can be part of emerging developmental understanding of functioning with intellectual disabilities.