‘Why Parents: How Parents’

BackgroundThe empowerment embedded in the health area is defined as a process that can facilitate control over the determinants of health of individuals and population as a way to improve health. The aim of this study was to verify the association between individual and collective empowerment with sociodemographic conditions, lifestyle, health conditions and quality of life.MethodA cross-sectional analytical study was conducted with 1150 individuals (aged 35 to 44 years). The empowerment was determined by questions from the Integrated Questionnaire for the Measurement of Social Capital (IQ-MSC). The quality of life was measured using the WHOQOL (World Health Organization Quality of Life-Bref). Lifestyle and health conditions were obtained by adapted questions from the Fantastic Lifestyle Questionnaire The DMFT Index was incorporated in the health conditions questions. Logistic regression or multinomial regression was performed.ResultsThe practice of physical activity was related to individual (OR: 2.70) and collective (OR: 1.57) empowerment. Regarding individual empowerment, people with higher education level (5–11 years – OR: 3.46 and ≥12 years – OR: 4.41), who felt more able to deal with stress (OR:3.76), who presented a high score on quality of life (psychological domain) (OR:1.23) and that smoked (OR:1.49) were more likely to feel able to make decisions and participate in community activities. The increase in the DMFT Index represented less chance of individuals to feel more able to make decisions (OR: 0.96). Regarding the collective empowerment, being religious (catholic) (OR: 1.82), do not drink or drink just a little (OR: 1.66 and 2.28, respectively), and increased score of overall quality of life (OR: 1.08) were more likely to report that people cooperate to solve a problem in their community.ConclusionThe two approaches to empowerment, the individual and collective are connected, and the physical activity showed to be a good strategy for the empowerment construction.

Objective:Policy directives (e.g. Valuing People, 2001) require service users, including those with learning disabilities, to be consulted about their experiences of accessing health care services. However, people with learning disabilities are less likely to be asked about their experiences and find it more difficult to use traditional methods of feedback (e.g. written forms) than people without a learning disability. Furthermore, people with a learning disability who also experience mental health problems are doubly disadvantaged in terms of contributing their feedback to services. The current study aimed to explore the experiences of people who have used psychiatric inpatient services for people with learning disabilities. This would facilitate service developments and allow service users an experience of giving detailed feedback and of being listened to. It would also increase our knowledge and skills around using qualitative research methodologies with people with learning disabilities and mental health difficulties.Methods:This is a retrospective, qualitative study using data collected through semi-structured interviews. Interview transcripts were analysed using Interpretative Phenomenological Analysis.Results:Participants’ responses focused on seven super-ordinate themes: (i) Reason for Admission; (ii) Staff; (iii) Communication; (iv) The Institution; (v) Illness Framework; (vi) Interventions; and (vii) Ideas for Improvements.Conclusions:Participants contributed a range of valuable feedback that has implications for service practice and development. Participants were able to use this methodology, and further qualitative research with participants with learning disabilities and mental health difficulties should be encouraged. Suggestions for further research are outlined.

Considering the processes of deinstitutionalisation and the development of social services in the community accessible for children and families, the use of Internet technologies in social work is extremely relevant. The purpose of this publication is to describe the results of research on the use of Internet technologies as a tool for the development of social services for children with disabilities and their families. In the course of the study, which was carried out between October 2016 and June 2018, we used such research methods as: theoretical research methods, document analysis, as well as individual and focused group interviews. The first objective of the research was to explore the varieties and features of services for children with disabilities in the community as an alternative to institutional care and analyze the process of services development. The formed list of services for children with disabilities and their families, which are possible in Ukraine according to the current legislation, the following groups of services were defined: (a) correction and development services; (b) educational services; (c) care services; (d) support services for families with children with disabilities. We revealed that the development of the service includes a number of practical tasks that cover the following stages: (1) determining the community's need in the service, (2) planning the implementation of the service, (3) selecting and training the specialists who will implement the service, (4) building communications with clients and developing an affiliate network, (5) monitoring the results of service implementation. The second stage of the study was conducting a theoretical analysis of the specifics of various types of Internet technologies and their use for work on development of services in community. Based on this we have developed a model for the development of social services for children with disabilities and their families in the community using Internet technologies for the activities of both social work managers and specialists who directly provide services to clients. During the empirical part of the study, we analysed experience and perspectives of application of Internet technologies by heads and managers of social organizations, as well as specialists working with children with disabilities in the provision of services. The results of the study are the first step in verifying the proposed theoretical model; they confirm that the topic of using Internet technologies is extremely relevant for the development and provision of services in Ukraine and in Europe. Domestic and foreign experts who took park in the study named the following potential Internet technologies in providing services: organization of day-care for palliative children; long-distance social support for families and children; transfer of certain elements of correctional lessons to the Internet platforms; organization of online peer support groups for parents of children; Internet technologies of virtual and augmented (mixing reality and artificial effects) reality for the correction and therapy of people with mental disorders. Comparing the responses of domestic and foreign specialists working with children with disabilities and their families, it is possible to conclude that foreign colleagues more actively use Internet technologies to perform professional tasks, both for working with clients, and for organizing and providing services, while Ukrainian specialists are limited to their use mainly for informational purposes. The study determines the peculiarities of using Internet technologies, which need to be considered, integrating such technologies into the process of providing services to children with disabilities and their families in Ukraine.

This article attempts to spell out a three dimensional approach to helping parents of children with learning disabilities: (1) educative counseling, (2) interpretive counseling, and (3) habilitatiw involvement of parents. Such an approach has been effectiw with parents regardless of the nature and degree of their neurotic problems, or their lewl of psychological sophistication. The method is adaptable to individual casewrk or group parent counseling. Family therapy counselors can also use much of the content as elaborated on in the article.

Accessible summary • Caring for a child with learning disability can be both a rewarding and difficult experience, but little is known about the experience of parents who provide care for children with learning disabilities in Ireland. • This study involved 32 parents of children (<16) with learning disabilities living in the Greater Dublin area. • The research investigated the kind of tasks involved in caring for a child with a learning disability, the extent and nature of any difficult behaviours with which parents must cope as well as parents’ attitudes towards caring. The use and availability of support services and how parents cope with their caring role were also explored. • This research is important to people with learning disabilities and their carers because it tells us about the practical, emotional and psychological benefits and drawbacks of caring for a child with learning disability and the importance of having appropriate and effective support services for both parents and their children. Summary Despite recurring concerns about the role and appropriate support of informal carers, little is known about the parental experience of caring for children with learning disabilities in Ireland. This study describes and analyses the nature and consequences of care and coping among parents of children (<16) with learning disabilities living in the Greater Dublin area. Participants (n = 32) completed the Caregiver Strain Questionnaire and an adapted version of the Carers Questionnaire which assessed: care tasks/behavioural difficulties; caregiver attitudes; service provision; and coping strategies. Qualitative analysis examined factors affecting carers’ ability to cope. Participants showed high levels of objective and subjective caregiver strain and most were receiving inadequate support. However, parents employed a range of strategies to help them cope more effectively. The qualitative data highlighted the difficulties and rewards of caregiving and the inadequacies of current service provision.

The launch of the All Wales Strategy for people with learning disabilities in 1983 heralded an era of redressing the anomaly of 80% of resources being deployed in hospitals while the majority of people with learning disabilities lived at home (Welsh Office, 1983). Social services were given the lead responsibility to plan and co-ordinate services away from institutions towards community based facilities. In 1983, some 2,100 people with a learning disability were resident in hospitals and hostels; by April 1991 the number had fallen to just over 1,300. There was a concomitant development of services in the community with a rise in the number of adults living in ordinary accommodation from 170 to 1,000. The priorities for development of services in the second phase of the strategy were set out in the ‘Framework for Development’ from April 1992 (Welsh Office, 1993).

The purpose of this study was to investigate Hispanic parents' perceptions and practices with respect to home reading and writing activities. Participants included 80 Hispanic parents (40 parents of children with LD and 40 parents of AHA children) who had children in grades 3 through 5. Interview and survey questions addressed three issues: types of activities children do at home; types of activities parents perceive as desirable and feasible to do with their children; and facilitators and barriers parents face when implementing reading and writing activities. Nonparametric statistical procedures were used to analyze responses related to Likert-type survey items, and the constant comparative method (Glaser &amp; Strauss, 1967) was used to summarize data from the interviews. Hispanic parents of children with LD reported using a wide variety of reading and writing activities on a regular basis, but experienced frustration in helping their children at home. Findings also showed that parents of children with LD rated many reading and writing activities as desirable for learning to read and write but not as feasible for them to implement.

BackgroundThe internet is a valuable resource for parents of typical children, who are looking for information about their children’s growth and development and how to boost them. However, for parents of children with special needs, especially for non–English-speaking parents, there are anecdotal reports stating that specific and accurate information is not available on the internet.ObjectiveThis study aims to describe the type of information available on the internet for French-speaking parents of children with disability as well as assess the quality of the information collected.MethodsWe carried out a search of the existing relevant websites targeted at parents of children with disability. We used a validated instrument to extract structural, textual, and visual characteristics of these websites and evaluate their usability.ResultsIn all, 42 websites were analyzed; of these, the information had been validated by a trustworthy source in only 18 (43%) websites. Networking opportunities for parents were available in only 7 (17%) websites. Most websites provided information related to autism spectrum disorder (20/42, 42%) and learning disabilities (19/42, 45%), and only a few websites discussed other disability types such as behavorial disorders and developmental language disorders (4/42, 10% each). Community, social, and civic life (9/42, 22%); domestic life (12/42, 29%); and mobility (15/42, 36%) were the less frequently covered topics. With regard to the usability evaluation, 22 of the 42 (52%) websites received a global score <70%, whereas 20 (48%) scored ≥70%ConclusionsAlthough the internet is an infinite source of information, it is not necessarily actionable for parents of children with disability. Some information remains difficult to find online, and networking opportunities with other parents dealing with similar challenges are scarce.

The number of postsecondary students with learning disabilities has increased dramatically over the last several years. This increase, coupled with federal legislation mandating "academic adjustments" for students with disabilities, has prompted the development of postsecondary learning disability support service programs. One support service that has begun to attract considerable attention is assistive technology. The purpose of this article is to provide an overview of assistive technology as it relates to postsecondary students with learning disabilities by (a) briefly tracing the development of assistive technology service for postsecondary students with learning disabilities; (b) identifying basic models of assistive technology service delivery and specific services; (c) providing a description of specific assistive technologies; (d) reviewing research on the effectiveness of assistive technology with postsecondary students with learning disabilities, with a focus on the authors' 3-year federally funded study; and (e) concluding with a summary and recommendations.

Parents of preterm children experience increased distress early in their children's lives. Whether the quality of life of parents of preterm children is comparable to that of parents of term children by the time their offspring reach adulthood is unknown. What precursors in their offspring's childhood predict parental quality of life? A prospective whole-population study in Germany followed very preterm (VP) (<32 weeks gestation) or very low birth weight (VLBW) (<1500 g) (N = 250) and term-born individuals (N = 230) and their parents (VP or VLBW: N = 219; term: N = 227) from birth to adulthood. Parental quality of life was evaluated with the World Health Organization Quality of Life assessment and the Satisfaction with Life questionnaire when their offspring were adults (mean age 27.3 years, 95% confidence interval [CI]: 27.2 to 27.3). Childhood standard assessments of VP or VLBW and term offspring included neurosensory disability, academic achievement, mental health, and parent-child and peer relationships. Overall quality of life of parents of VP or VLBW adults was found to be comparable to parents of term individuals (P > .05). Parental quality of life was not predicted by their children being born VP or VLBW, experiencing disability, academic achievement, or the parent-child relationship in childhood but by their offspring's mental health (B = 0.15, 95% CI: 0.08 to 0.22) and peer relationships (B = 0.09, 95% CI: 0.02 to 0.16) in childhood. As a testament to resilience, parents of VP or VLBW adults had quality of life comparable to parents of term adults. Support and interventions to improve mental health and peer relationships in all children are likely to improve parents' quality of life.

Objective Parents experience shifts in parent–child dynamics across parenthood which can result in sleep changes for both the parent and the child. While sleep is a basic human need and vital for universal function, little attention has been given to how sleep is assessed across parenthood. The purpose of this review was to assess the breadth of literature on sleep assessment across parenthood. Method Guided by a standard scoping review framework, a search was completed using four databases. Three reviewers conducted title and abstract and full-text review, and two reviewers conducted data extraction. Consensus was reached among reviewers at each level. Results Three hundred seventy studies met inclusion criteria for the scoping review. Results indicated a lack of research focused on sleep in specific underrepresented parent populations, such as parents of adult children or parents of children with developmental disabilities. Conclusions These findings highlight trends in the literature on sleep across parenthood. Given the majority of studies included young adult-aged parents (ages 18–35 years), mothers or parents of children in infancy and used subjective measures of sleep, more research is needed on underrepresented parent populations and parents across parenthood for comprehensive resources and tailored evidence-based interventions to be developed.

The purpose of this cross-sectional study was to examine Self-Efficacy and Alexithymia as moderators between perceived social support and Stress among parents of children with Learning Disabilities. The convenience sample of the study consisted of 98 parents of children with Learning Disabilities from Ahwaz (Iran). This descriptive correlational study was conducted in 2014-15. Multidimensional Scale of Perceived Social Support (MSPSS), General Self-Efficacy Scale (GCE), Toronto Alexithymia Scale (TAS-20), and Perceived Stress Scale (PSS) were completed by parents. Hierarchical linear regression analyses were used to examine the moderating role of Self-Efficacy and Alexithymia. The results revealed that Self-Efficacy and Alexithymia were moderators in the relationship between Perceived social support and Stress. The findings supported the hypothesis that higher levels of self-efficacy (see: Figure 1) would be associated with lower levels of Stress, and that lower levels of Alexithymia (see: Figure 2) would be associated with lower levels of Stress.

This study was conducted to measure the digital parenting awareness, attitude and self‐efficacy perceptions of parents of children with special needs and to determine whether they differ according to the disability status of their children. A total of 180 parents of children with special needs from various regions of Turkey participated in the study. This study was conducted using a relational screening model. Data were collected using digital parenting awareness, attitude and self‐efficacy perception scales and analysed using descriptive and correlational statistical methods. The findings revealed that parents had moderate levels of awareness, positive attitudes and self‐efficacy perceptions regarding digital parenting, but these variables showed significant differences according to the disability status of the children. In particular, parents of children with learning disabilities had higher digital parenting awareness than parents of other disability groups. In addition, a positive and significant relationship was found between parents' digital parenting awareness, attitudes and self‐efficacy perception. The findings of this study are important and contribute to both the practical and theoretical perspectives. In applicable terms, this study revealed the needs and expectations of parents of children with special needs regarding digital parenting. Theoretically, this is a rare study that examines the situation and experiences of parents with children with special needs in digital parenting. This study emphasizes the need for further research on digital parenting. Practitioner notes What is already known about this topic Existing research underscores the importance of digital parenting in the contemporary era, highlighting the need for parents to navigate the challenges and opportunities presented by technology in child‐rearing. Parental self‐efficacy in managing digital resources has been identified as a crucial factor in promoting children's effective and safe use of technology. Positive parental attitudes towards technology have been associated with healthier digital habits and development in children. What this paper adds This study contributes to the literature by specifically focusing on parents of children with special needs and recognizing the unique challenges and opportunities they face in the realm of digital parenting. Findings revealed that parents of children with learning disabilities exhibit higher levels of digital parenting awareness, emphasizing the need for tailored interventions and support for different disability groups. The positive and significant relationship identified between digital parenting awareness, attitudes and self‐efficacy underscores the holistic nature of these factors and highlights the potential impact of comprehensive digital parenting programs. Implications for practice and/or policy Develop targeted digital parenting support programmes that address the specific needs of parents with children with special needs, considering the variations among different disability groups. Advocates of inclusive education policies that incorporate digital parenting education as a vital component, recognizing its significance in the overall well‐being. Recognize the role of both mothers and fathers in digital parenting and design interventions that consider the unique perspectives and challenges faced by each gender. Facilitate collaboration between digital parenting experts and special education professionals to create comprehensive resources and training materials that cater to the diverse needs of children with special needs. Conduct longitudinal studies to assess the long‐term impact of digital parenting interventions on the development, well‐being, and digital literacy of children with special needs. This can inform the refinement of future programs and policies in this domain.

International research in recent years has begun to focus on the medical problems of individuals with intellectual disabilities and on family stress in accessing health services for persons with developmental disabilities. Less is known about the needs of individuals in different diagnostic groups, or about their experiences of systems of care. Therefore, we report the results of focus groups with parents of children or adults with fragile X syndrome, autism or Down syndrome. Semi-structured group interviews with parents of children, youth or adults from each of three diagnostic groups probed perceptions of challenges and successes in obtaining and negotiating healthcare services in Ontario, Canada. Parents described diverse barriers to care, the need for advocacy in securing services, perceptions of service delivery and the role of healthcare professionals in regulating access to a wide range of services. Diagnostic services represented one area of central concern to parents from all three groups. Focus group data yielded a wide range of concerns. Suggestions for enhancing the system included expanding syndrome-specific education for medical students and health professionals and creating a centre that could offer service-related information for parents.

This article is based on statements freely written by the parents of three adults with learning disabilities describing the transitions in the lives of these adults, and structured interviews with their general practitioner (GP). It highlights the emotional, psychological and personal problems of this group of carers and the need for more research into their support.