The road to independence: Lived experiences of youth with chronic conditions and their parents compared

__Abstract__ PURPOSE: To gain insight into the development of young persons with chronic conditions towards independence by comparing their lived experiences to those of their parents. METHODS: Semi-structured interviews were held with 16 young persons (7 males, 9 females; 15-22 years) and one of their parents (n=16), asking about the young persons' daily lives and their development towards adulthood. Themes were deductively derived from the Skills for Growing Up framework, i.e. agency, living and daily activities, social and intimate relationships, education, work, leisure activities, transportation, and healthcare. Parents also reflected on how they dealt with the child's chronic condition. A paired thematic analysis was conducted. RESULTS: Parents were often less convinced that their children could act independently than the young persons themselves. They were concerned about them and tended to interfere with their daily lives, often to the annoyance of their children. Also, parents often perceived more barriers in social participation, while young persons were more positive. CONCLUSION: The perceptions of young persons and their parents clashed on living independently, intimate relationships, leisure activities, and healthcare. Young people might benefit from professional support in these domains to help them strengthen their autonomy and to prevent child-parent conflict and negative outcomes

Treatment of AML in Older Patients

Acute myeloid leukaemia (AML) is a disease mostly diagnosed in older adults. Treatment of older patients with AML remains challenging with higher rates of intrinsic chemotherapeutic resistance and decreased treatment tolerance. Indeed AML in older patients has different clinical and biologic characteristics compared to younger patients. Several treatment options are available for treatment of AML in older patients, namely conventional intensive chemotherapy (‘3 + 7’), low-dose cytarabine, and hypomethylating agents. Combinations with new drugs have been recently approved or are in advanced stages of clinical testing, namely venetoclax, midostaurin, glasdegib. Clinical decision making should take into account disease characteristics (e.g. cytogenetic and molecular abnormalities, white blood cell count), patient characteristics (e.g. performance, comorbidities, geriatric assessment) and patients’ preference when considering which treatment option is most suitable for the older patient. Allogeneic haematopoietic cell transplantation (HCT) as post-remission strategy should also be considered for older patients with AML. Allogeneic HCT following reduced-intensity conditioning or non-myeloablative conditioning has made this treatment option more suitable for older patients with a reduction in treatment-related mortality

Layers of Disability Terminology Experiences of People with Disabilities and their Relatives: An Analysis of Dutch Newspapers between 1950–2020

Despite the current terminology debate, little is known about the terminology experiences of people with disabilities and their relatives. Therefore, their interviews and letters to editors about disability terminology experiences published in Dutch newspapers between 1950 and 2020 were examined using inductive qualitative analysis. Three themes were derived. Contributors (1) objected to the use of particular terms and explained why a change in disability terminology was required; (2) argued that a change in disability terminology was viable; and (3) opposed proposed terminological changes. Contributors stated that derogatory and outmoded terms did not accurately depict the abilities of people with disabilities, resulting in stigmatisation and exclusion. Few contributors addressed a cross-disability perspective, and there was no mention of disability policy in the terminology debate. Meaningful associations between disability terminology experiences and the visibility and onset of the disability could be established. The newspaper contributions reflected the growing self-awareness of people with disabilities and their relatives

Impairments and comorbidities in adults with cerebral palsy and spina bifida: a meta-analysis

IntroductionAging with a childhood-onset disability, such as cerebral palsy (CP), spina bifida (SB), and muscular diseases (MD), comes along with significant impairments and comorbidities. Despite the increasing evidence an overall picture is lacking. This study aimed to review the literature about adults with CP/SB/MD and impairments and comorbidities to perform a meta-analysis.Materials and methodsEmbase, PubMed, Cinahl, and Google Scholar were searched (2000–2020). Search terms included adults with one of the aforementioned disabilities combined with impairments and comorbidities. If specific impairments or comorbidities were reported by at least four studies, these were included in the study. Pooled prevalence (95% Confidence Interval) of impairments/comorbidities were calculated.ResultsThe search yielded 7,054 studies of which 95 were included in the meta-analysis (64 CP, 31 SB, 0 MD). In total estimates were calculated for 26 (CP) and 11 (SB) outcomes. In adults with CP, pain [56.4% (95%CI 48.8–63.8)], deformities [44.2% (95%CI 12.9–78.4)], intellectual disability [37.2% (95%CI 26.7–48.3)], and fatigue [36.9% (95%CI 24.6–50.1)] were most prevalent; renal disease [3.0% (95%CI 2.1–4.2)] and stroke/rheumatic diseases {4.8% (95%CI 3.4–6.5; 4.8% (95%CI 1.5–9.9)] respectively} were least prevalent. For adults with SB, bladder incontinence [60.0% (95%CI 50.5–69.2)], bowel incontinence [49.2% (95%CI 34.5–64.0)], pain [44.1% (95%CI 27.4–61.5)], and sleeping problems [30.3% (95%CI 4.7–65.8)] were most prevalent; diabetes [4.8% (95%CI 2.8–7.3)] and renal disease [8.7% (95%CI 2.0–19.9)] were least prevalent. The included studies showed large heterogeneity.ConclusionsMore research is needed to study health issues in adults with MD. Adults with CP or SB deal with a variety of health issues. More attention for the mental health of these adults is needed. There also is a need for accessible and adequate screening, preventive measures and clinical follow-up