Methods: The sample was collected from the Special Needs Education Longitudinal Study (SNELS) database released in 2011. Variables comprising seven psychological distress (PD) items and four types of bullying victimization and family-, school-, and peer-related factors were included in a multivariate regression analysis.
Results: Exclusion and verbal bullying were most frequently reported, 72.4% of students with ASD experiencing exclusion bullying and 66% of them experiencing verbal bullying. Among the victims, delayed bedtime, use of medication, and conflicts with parents significantly increased PD. By contrast, good relationships with parents and friends and liking school environments relieved PD symptoms. Furthermore, delayed bedtime after 12 a.m. enhanced the effects of exclusion victimization on PD in the participants.
Conclusions: Our results indicated that bullying victimization among adolescents with ASD was a risk factor for their psychological well-being. Nevertheless, good parent–adolescent and interpeer relationships improved their mental health. Our results can serve as a reference in implementing strategies for motivating parents and teachers to pay more attention to the needs of adolescents with ASD.
- Implications for Rehabilitation
More than 80% of adolescents with autism experience at least one type of bullying victimization.
Bullying victimization attributes to a major factor influencing mental health of adolescents with autism.
Good parent–adolescent and interpeer relationships can play beneficial roles in improving mental health of the adolescents.
Methods: Seven families of children diagnosed with OI type 1 for longer than four years participated. An in-depth semistructured interview with open-ended questions was used to separately collect each participant’s (mother, father, patient and sibling) subjective report of their experience. Interviews were audiotaped and a qualitative discourse analysis was performed.
Results: Pain and fractures, hospitalization, home recovery, back to school and time of diagnosis emerged as the most challenging situations. Time of diagnosis was only mentioned by parents. Some commonalities but also relevant differences in the subjective experience of the same situations, depending on the family role, were found.
Conclusions: Our results reinforce the assumption that OI is a family matter and point to the importance of providing comprehensive and family-centered health and educational services tailored to each family member and to the different situations faced by these families.
- Implications for rehabilitation
Osteogenesis imperfecta is a chronic rare disease that impacts severely the patient’s life and the life of all family members.
The most distressing situations are related to fractures and pain, hospitalization, recovery from fractures while being at home and preparing for school reentry.
All family members participate in the rehabilitation process, each one accomplishing different tasks.
Rehabilitation should include educational and psychological intervention to enhance family strengths and support all family members.
Tailored and effective communication from health providers may play a critical role in the rehabilitation process.
Method: Three focus groups (one with each of the key stakeholders) and one joint parent and child interview were conducted. All discussions were audio‐recorded, transcribed verbatim and thematically analyzed based on the methods outlined by Braun and Clarke (2006).
Results: A total of 7 parents (6 mothers, 1 father), 4 youth with autism spectrum disorder, and 10 professionals participated in the study. Three themes related to current experiences with goal setting emerged: (1) purpose, (2) barriers, and (3) types.
Conclusions: Currently, adolescents with autism spectrum disorder are rarely active participants in the goal setting process. This study provides novel data, from the perspectives of multiple stakeholders, about barriers, perceptions, and actualities related to autonomous goal setting for adolescents with autism spectrum disorder.
- Implications for rehabilitation
Adolescent participation in autonomous goal setting is an important component of self-determination.
Rehabilitation professionals, parents, and adolescents with autism spectrum disorder identified similar barriers to autonomous goal setting.
Adolescents with autism spectrum disorder described goals as short-term, concrete tasks, whereas parents perceived involvement in goal setting as a gateway to long-term self-determination.
Rehabilitation professionals and parents acknowledged the benefits and advocated for increased involvement of adolescents with autism spectrum disorder in the goal setting process.
Similar to the paradigm shift toward family-centered care, rehabilitation professionals need to shift to include the involvement and participation of individuals with autism spectrum disorder.
Method: The Uni-Search and five additional databases were searched. Children’s health issues were grouped into psychosocial issues including autism and ADHD, and physical and performance issues including pain. Measures used for comparison were those addressing (a) psychosocial functioning, (b) physical and performance functioning, and (c) health-related quality of life.
Results: Totally, 39 studies met the inclusion criteria, comprising 44 analyses in all since four studies contained more than one analyses. Moderate child–parent agreement was demonstrated in 23 analyses and poor agreement in 20 analyses. Several analyses found more agreement on observable/external than on non-observable/internal domains. Overall, parents considered their children had more difficulties than did the children themselves, although there were indications that for children with physical performance issues, parents may underreport their children’s difficulties in emotional functioning and pain. There were no consistencies in differences between children’s and parent’s ratings on levels of agreement with respect to the children’s health issue, age or gender.
Conclusions: Discrepancies between child and parent reports seem to reflect their different perspectives and not merely inaccuracy or bias.
- Implications for Rehabilitation
In general, parents consider their children to have more difficulties – or more extensive difficulties – than the children themselves think they have.
The perspectives of the child and his or her parents should be sought whenever possible since both constitute important information concerning the child´s health and well-being.
Children with physical and performance issues reported more difficulties than their parents concerning the children’s emotional functioning and pain.
Clinicians should prioritize obtaining children’s views on subjective aspects such as emotional issues as well as on pain.
Method: An uncontrolled pre- and post-assessment design was employed to study the use of unmodified, low-cost, off-the-shelf smartphones combined with Internet-calendars as a compensatory memory strategy in community-dwelling patients with traumatic brain injury. Thirteen participants received a 6-week group-based intervention with pre-, post- and 2-month follow-up-assessments by questionnaires and by daily assessment of target behaviors for 2-week periods.
Results: Participants reported significantly fewer retro- and prospective memory problems on questionnaires after the intervention and at follow-up with large effect sizes. The performance of target behaviors, however, improved insignificantly with moderate effect sizes. There were no changes in quality of life or symptoms of emotional distress.
Conclusions: This study adds to a growing body of evidence that smartphones are a useful compensatory aid in rehabilitation of prospective memory that should routinely be considered in rehabilitation of traumatic brain injury patients.
- Implication for rehabilitation
Smartphones are easy-to-use and accessible assistive technology for compensatory memory rehabilitation to most traumatic brain injury patients.
By using low-cost, off-the-shelf devices, the technology becomes available to a broader range of patients.
By combining smartphones with Internet-based and cross-platform services (e.g., calendars, contacts) the participants are less device-dependent and less vulnerable to data loss.
Smartphones should routinely be considered as compensatory aid in rehabilitation of prospective memory of traumatic brain injured patients.
Design: Secondary analysis of cross-sectional data from the 2014 Commonwealth Fund International Health Policy Survey of Older Adults.
Setting: 11 western countries.
Subjects: Community-dwelling adults, aged 55 or older.
Main outcome measure: Assessment of goals and priorities.
Results: The final sample size consisted of 17,222 respondents, 54% of whom reported an assessment of their goals and priorities (AGP) by healthcare professionals. In logistic regression model 1, which was used to analyse the entire population, the determinants found to have moderate to large effects on the likelihood of AGP were information exchange on stress, diet or exercise, or both. Country (living in Sweden) and continuity of care (no regular professional or organisation) had moderate to large negative effects on the likelihood of AGP. In model 2, which focussed on respondents who experienced continuity of care, country and information exchange on stress and lifestyle were the main determinants of AGP, with comparable odds ratios to model 1. Furthermore, a professional asking questions also increased the likelihood of AGP.
Conclusions: Continuity of care and information exchange is associated with a higher probability of AGP, while people living in Sweden are less likely to experience these assessments. Further study is required to determine whether increasing information exchange and professionals asking more questions may improve goal setting with older patients.
- Key points
A patient goal-oriented approach can be beneficial for older patients with chronic conditions or multimorbidity; however, discussing goals with these patients is not a common practice.
The likelihood of discussing goals varies by country, occurring most commonly in the USA, and least often in Sweden.
Country-level differences in continuity of care and questions asked by a regularly visited professional affect the goal discussion probability.
Patient characteristics, including age, have less impact than expected on the likelihood of sharing goals.
Methods: Participants were a convenience sample of 429 children (242 males) with CP, aged 18 to 60 months, representing all levels of the Gross Motor Function Classification System (GMFCS). Children were divided into two groups by GMFCS levels, levels I to II and levels III to V. Data on impairments and gross motor function were collected by therapists; parents provided information about children’s health conditions and adaptive behaviour. Seven months later, parents reported on family life and services received. One year after the beginning of the study, parents reported their children’s participation. Data from the two groups of children were analysed separately using structural equation modelling.
Results: The model explained 35% and 40% of the variance of frequency of participation in family and recreation and 28% and 38% of enjoyment in participation, for the two groups of children, respectively. Children’s adaptive behaviour, family ecology, and number of community recreational programs were associated with the frequency of participation for both groups. Gross motor function was only associated with the frequency of participation for children in levels III–V. Adaptive behaviour was associated with enjoyment for both groups. The extent services met children’s needs was associated with enjoyment for children in levels I to II and family ecology was a determinant of enjoyment for children in levels III to V.
Conclusion: Supporting children’s adaptive behaviour, family ecology, and access to community recreational programmes may foster participation in family and recreational activities for young children with CP.
- Implications for Rehabilitation
Participation in family and recreational activities for young children with CP is complex and influenced by child, family and environmental factors.
Practitioners are encouraged to support children’s adaptive behaviour and access to community programs and family relationships, involvement in community activities and expectations of their children.
Optimizing gross motor function for children who have limitations in self-mobility may enhance their participation in family and recreational activities.
For children with a good prognosis for walking, providing services perceived by parents to meet their children’s needs may enhance children’s enjoyment of participation.
Method: Twenty-two participants including 16 rehabilitation clinicians and 6 persons living with a disability participated in four nominal group sessions. Participants were questioned on current or potential rehabilitation strategies carried out to enhance participation in shopping malls for persons living with a disability. Discussions were audio-recorded and qualitative content analysis was conducted.
Results: Participants mentioned strategies that were either carried out by the clinician, or in collaboration with other parties. The latter type of strategies was either carried out with the collaboration of the client, the interdisciplinary team, the relatives, or community organizations.
Conclusions: Rehabilitation clinicians have a role to play in preparing persons living with a disability to resume activities in a shopping mall. Additionally, therapeutic interventions in community settings may enhance the participation of rehabilitation clients in their everyday activities.
- Implications for rehabilitation
Many strategies are currently used in rehabilitation to prepare persons living with a disability to resume shopping activities.
Clinicians could implement shopping-oriented rehabilitation strategies with the client and/or with other rehabilitation partners.
Involving clients in activities related to shopping might enhance their participation in shopping malls after rehabilitation.
Rehabilitation clinicians can be facilitators for people living with a disability to reach optimal participation.
Objective: To examine the associations between patients’ self-rated health and their sleep problems, somatic health complaints, and unmet needs in interpersonal relationships.
Design: We collected data via questionnaires for this cross-sectional study from general practice.
Setting: Primary health care in Norway.
Subjects: 1302 consecutive patients participated.
Main outcome measures: The questionnaire included a single question about SRH, the Bergen Insomnia Scale (BIS), five questions on somatic health complaints, and three questions from the Basic Psychological Needs Scale (BPNS) pertaining to the relationships domain. We analyzed our data using ordinal logistic regression models.
Results: Our response rate was 74%. The prevalence of fair/poor SRH was 26%, with no gender differences. We revealed a significant association between increasing age and reduced SRH. The study showed that sleep problems and somatic health complaints were strongly associated with SRH, and unmet needs in relationships were also significantly and independently associated with reduced SRH in a full model analysis.
Conclusion: Sleep problems, somatic health complaints, and unmet needs in interpersonal relationships were all associated with reduced SRH. These factors are all modifiable and could be managed both within and outside a primary care setting in order to improve SRH.
- Key Points
There was a high prevalence of reduced SRH in clinical general practice
Sleep problems, somatic health complaints, and unmet needs in interpersonal relationships were all associated with reduced SRH
These predictors are all modifiable with a potential to improve SRH
Design: Qualitative study with focus-group interviews.
Subjects and setting: Three focus-group interviews were conducted with a total of 15 Norwegian adolescents each with an ill or substance-abusing parent. The participants were recruited from existing support groups.
Results: The adolescents’ days were dominated by unpredictability in their family situation and their own exhausting efforts to keep up an ordinary youth life. Mostly, they consulted GPs for somatic complaints. In encounters with the GP, they wanted to be met both as a unique person and as a member of a family with burdens. Their expectations from the GP were partly negatively formed by their experiences. Some had experienced that both their own and their parent’s health problems were not addressed properly. Others reported that the GP did not act when he or she should have been concerned about their adverse life situation. The GP may contribute to better long-term psychosocial outcomes by ensuring that the adolescents receive information about the parent’s illness and have someone to talk to about their feelings and experiences. In addition, the GP may help by supporting their participation in relieving activities.
Conclusion: Burdened adolescents seek a GP most often for somatic complaints. The GP has a potential to support them by taking the initiative to talk about their life situation, and by recognizing their special efforts.
- Key points
Little is known about how a general practitioner can support adolescents with ill or substance-abusing parents.
Adolescents experience unpredictability in life and strive to find balance between their own needs and the restrictions caused by parental illness.
In encounters with adolescents having ill parents, the GP should take the initiative to talk about their family situation.
The GP may help them by recognizing their experiences and struggles, give information, offer talks and support coping strategies.
Method: Two in-depth semi-structured interviews were conducted six months apart with 21 people aged 18 to 65 with high-care needs of varying etiology and living in different housing settings. Nineteen family members involved in decision-making about housing and supports were also interviewed.
Results: Thematic data analysis yielded five themes: (1) Traveling in different directions; (2) “the fight, the battle and the war”; (3) willing but wanting; (4) uncertainty and vulnerability; and (5) redefining social roles and relationships.
Conclusions: Current disability policy is not satisfying the housing and support requirements of adults with high-care needs and their families. The findings provide rigorous, empirical evidence which indicate the urgent need to improve access to affordable, individualized housing and support packages, including financial, practical and informational support for family members involved in caring roles.
- Implications for Rehabilitation
Individual preferences are an important consideration in housing and support arrangements for younger people with high-care needs alongside needs-based solutions.
Individualized funding approaches may provide flexibility of care and choice in housing and support for people with disability.
Family members willingly provide substantial informal care, support and advocacy for younger people with high needs but perceive their role as a constant “battle”.
Payment of family members in recognition of caring work was perceived as a solution to relieve family hardship and ensure optimal care.
Design: We conducted focus groups (FGs) with 17 GPs.
Setting: Norwegian primary health care.
Subjects: 17 GPs who attended a 5 d course on leadership in primary health care.
Results: Our study suggests that the GPs experience a need for more preparation and formal training for the leadership role, and that they experienced tensions between the clinical and leadership role. GPs recognized the need to take on leadership roles in primary care, but their lack of leadership training and credentials, and the way in which their practices were organized and financed were barriers towards their involvement.
Conclusions: GPs experience tensions between the clinical and leadership role and note a lack of leadership training and awareness. There is a need for a more structured educational and career path for GPs, in which doctors are offered training and preparation in advance.
- KEY POINTS
Little is known about doctors’ experiences and views about leadership in general practice and primary health care. Our study suggests that:
There is a lack of preparation and formal training for the leadership role.
GPs experience tensions between the clinical and leadership role.
GPs recognize leadership challenges at a system level and that doctors should take on leadership roles in primary health care.
Method: Participants were six parents of children with CP who participated in a CO-OP upper limb task-specific training program. Parents participated in semi-structured interviews conducted via phone. A grounded theory approach was used. Interviews were transcribed verbatim and coded to identify categories and overarching themes of the parent experience of CO-OP.
Results: The theory of CO-OP for children with CP was one of offering a unique and motivating learning experience for both the child and the parent, differing from other therapeutic approaches that families had previously been involved in. Five categories were identified: the unique benefits of CO-OP; the importance of intensity; the child’s motivation; challenging the parent role; and the benefits and challenges of therapy within a group context.
Conclusion: Parents felt that CO-OP was a worthwhile intervention that leads to achievement of goals involving upper limb function and had the capacity to be transferred to future goals. Intensity of therapy and a child’s motivation were identified as important factors in improvements. Further studies using quantitative research methods are warranted to investigate the benefits of CO-OP for children with neurological conditions.
- Implications for rehabilitation
The cognitive orientation to daily occupational performance (CO-OP) is a promising upper limb cognitive motor training intervention for children with cerebral palsy.
In a small sample, parents perceived that CO-OP leads to achievement of upper limb goals.
Intensity of therapy, the child’s motivation and the parents’ ability to “step-back” were identified as important to the success of CO-OP.
Method: Publications were identified from 1991 to 2015 in ERIC, web of science via web of knowledge, CINAHL, SCOPUS, IEEEXplore, engineering village, business source complete and PubMed databases using search terms and synonyms for accommodations, advanced manufacturing, additive manufacturing, assistive technology (AT), barriers, engineering, facilitators, instructor, laboratory, STEM education, science, students with disabilities and technology.
Results: Twenty-two of the 233 publications that met the review’s inclusion criteria were examined. Barriers and facilitators were grouped based on the international classification of functioning, disability and health framework (ICF). None of the studies directly found barriers or facilitators to SwD-P in science or engineering laboratories within postsecondary environments. The literature is not clear on the issues specifically related to SwD-P.
Conclusion: Given these findings, further research (e.g., surveys or interviews) should be conducted to identify more details to obtain more substantial information on the barriers that may prevent SwD-P from fully participating in S&E instructional laboratories.
- Implications for Rehabilitation
Students with disabilities remain underrepresented going into STEM careers.
A need exist to help uncover barriers students with disabilities encounter in STEM laboratory.
Environments.
Accommodations and strategies that facilitate participation in STEM laboratory environments are promising for students with disabilities
Method: Studies published from 1 January 1990 to 19 July 2016 were identified using Medline, Cinahl, PsycINFO, Web of Science, email requests and cross citations. Studies were reviewed narratively in relation to identified themes.
Results: A total of 35 studies were included in the review. Themes identified were as follows: health conditions associated with dysphagia; mortality; health service use; practice and knowledge in supporting people with intellectual disabilities and dysphagia; intervention effectiveness and quality of life. Dysphagia is associated with respiratory infections and choking and may be under-recognised. Silent aspiration is common and may go unnoticed. Management practices exist, but there are few intervention studies and no randomised controlled trials (RCTs), and hence, the effectiveness of these is currently unclear.
Conclusion: Dysphagia is a key concern in relation to people with intellectual disabilities. There is urgent need for research on the management of dysphagia in people with intellectual disabilities, including mealtime support offered, positioning, dietary modification and impact on wellbeing.
- Implications for Rehabilitation
Dysphagia is common in people with intellectual disabilities, associated with serious health risks and may be under-recognised.
Caregivers of people with intellectual disabilities should be educated about dysphagia.
There is an urgent need for research on improving the management of dysphagia in people with intellectual disabilities.
Improved recognition and management of dysphagia may reduce the occurrence of associated health conditions and reduce hospital admissions and premature death in people with intellectual disabilities.