What supports and services post COVID-19 do children with disabilities and their parents need and want, now and into the future?

Introduction: Children and youth with disabilities and special healthcare needs, and their families, have been uniquely affected by the COVID-19 pandemic. However, the voices of children themselves are still not well represented in the existing literature. Methods: This qualitative descriptive study used a combination of visual methods and interviews to learn about the experiences of Canadian children with disabilities (n=18) and their parents (n=14) during the COVID pandemic and into the post-pandemic period. Data collection was carried out between January and July 2023. The aim was to identify the supports and services children and families need at present and moving forward. Results: Families' pandemic experiences were complex and nuanced. For many, the pandemic complicated and disrupted everyday activities and supports. These disruptions were largely buffered by parents. However, some families also identified unexpected benefits. Key themes pertaining to present and future needs included the need for services that are flexible; consistent; conducive to relationship-building; comprehensive; coordinated across sectors; and designed to support the needs of the whole family. Discussion: Implications for policy and practice are outlined.

Knowledge mobilization to spread awareness of the 'F-words' in childhood disability: lessons from a family-researcher partnership.

BACKGROUND: In 2012, two CanChild researchers published an article in Child: Care, Health and Development titled 'The "F-words" in childhood disability: I swear this is how we should think!' Building on the World Health Organization's International Classification of Functioning, Disability and Health (ICF) framework, the article featured key strengths-based ICF themes (i.e. the 'F-words' - Function, Family, Fitness, Fun, Friends and Future). This paper reports on a knowledge mobilization initiative designed to spread awareness of the 'F-words' ideas. METHODS: Families and researchers collaborated to develop, disseminate and evaluate an online awareness video. The video used written descriptions, parents' reflections and their pictures, music and graphics to captivate the audience. Posted on the CanChild website in May 2014, information about the video was distributed via various dissemination strategies and evaluated by tracking its views and through an online survey. RESULTS: After a 2-month evaluation, there were 715 views and 137 survey responses. Of the survey responses, 89% lived in Canada, 55% had not previously heard of the 'F-words', 98% 'extremely liked'/'liked the ideas' and 88% indicated they would share the video. CONCLUSIONS: By creating a short and captivating video, we were able to spread awareness to a wide audience in a short period of time. Engaging families throughout the project was critical to the success of the video. By working together, we hope to continue bridging research and practice and moving the 'F-words' concepts forward one 'word' at a time.

Migraine and tension-type headache in Croatia: a population-based survey of precipitating factors.

The careful monitoring of the trigger factors of headache could be an important step in treatment, because their avoidance may lessen the frequency and severity of attacks. Furthermore, they may provide a clue to the aetiology of headache. The aim of the present study was to estimate the prevalence of tension-type headache (TTH) and to establish the frequency of precipitating factors in subjects with migraine and TTH in the adult population of Bakar, County of the Coast and Gorski Kotar, Croatia. Another important purpose of the study was to examine the relationship of the precipitating factors with migraine and TTH, and with migraine subtypes: migraine with aura (MA) and migraine without aura (MO). We performed a population-based survey using a 'face-to-face door-to-door' interview method. The surveyed population consisted of 5173 residents aged between 15 and 65 years. The 3794 participants (73.3%) were screened for headache history according to the International Headache Society (IHS) criteria. Headache screen-positive responders, 2475 (65.2%), were interviewed by trained medical students with a structured detailed interview focused on the precipitating factors. The following precipitating factors in lifetime migraineurs and tension-type headachers have been assessed: stress, sleep disturbances, eating habits, menstrual cycle, oral contraceptives, food items, afferent stimulation, changes in weather conditions and temperature, frequent travelling and physical activity. A total of 720 lifetime migraineurs and 1319 tension-type headachers have been identified. The most common precipitants for both migraine and TTH were stress and frequent travelling. Stress (odds ratio (OR) 1.4, 95% confidence interval (CI) 1.17, 1.69) was associated with migraine, whereas physical activity (OR 0.72, 95% CI 0.59, 0.87) was related to TTH. Considering MA and MO, frequent travelling (OR 2.2, 95% CI 1.59, 2.99), food items (OR 2.2, 95% CI 1.35, 3.51) and changes in weather conditions and temperature (OR 1.75, 95% CI 1.27, 2.41) exhibited a significant positive association with MA. The present study demonstrated that precipitant-dependent attacks are frequent among both migraineurs and tension-type headachers. Lifetime migraineurs experienced headache attacks preceded by triggering factors more frequently than tension-type headachers. MA was more frequently associated with precipitating factors than MO. We suggest that some triggering factors may contribute to the higher occurrence of precipitant-dependent headache attacks in susceptible individuals.

Prevalence of migraine in Croatia: a population-based survey.

OBJECTIVES: The aim of the present study was to estimate the prevalence of migraine among Croatian adults. This is the first epidemiological study of migraine in Croatia in which the operational diagnostic criteria of the International Headache Society have been applied. METHODS: The study population consisted of all residents (aged 15 to 65 years) of Bakar, County of The Coast and Gorski Kotar, Croatia. A population-based survey was undertaken using a "face-to-face, door-to-door" interview METHOD: The participation rate was 73.3%. All participants were screened for headache history according to the International Headache Society criteria. Headache screen positive responders (65.7%) were interviewed by trained medical students with a structured detailed interview focused on migraine. RESULTS: A total of 720 lifetime migraineurs were identified. The lifetime prevalence of migraine was 22.9% (95% confidence interval, 20.9 to 25.1) in women, 14.8% (95% confidence interval, 13.1 to 16.8) in men, and 19% (95% confidence interval, 17.6 to 20.5) in both sexes. The highest lifetime prevalence of migraine was in women in the age group 40 to 49 years (38.1%). Among 636 active migraineurs, 399 (62.7%) were women and 237 (37.3%) were men; 55.8% had migraine without aura, 35.2% migraine with aura, and 6.9% migraine both with and without aura. The 1-year prevalence of migraine, migraine without aura, migraine with aura, and migraine both with and without aura in women was 18%, 11.3%, 8.6%, and 2.2%, respectively. In men, the 1-year prevalence of migraine, migraine without aura, migraine with aura, and migraine both with and without aura was 12.3%, 7.3%, 3%, and 0.7%, respectively. CONCLUSIONS: The prevalence of migraine in this Croatian population showed rates quite similar to those reported in neighboring countries, such as Italy and France. Further studies are needed to estimate the prevalence rates of migraine in the total Croatian population.

Nutritional factors and multiple sclerosis in Gorski Kotar, Croatia.

An analysis was made of the possible influence of nutritional factors on the etiology of multiple sclerosis in Gorski Kotar (Croatia), a high-risk zone for this disease. A total of 46 MS patients and 92 controls, native-born residents of the area studied, participated in a case-control study. The questionnaire comprised 51 questions concerning dietary habits. An odds ratio (OR) estimate was obtained for all the factors which were more frequently found in the patients than in the controls. Large differences were found in the daily consumption of different quantities of full fat unskimmed milk (OR 21.7; chi 2 42.34; LL 7.12), potatoes with lard and fresh or smoked meat (OR 20.7; chi 2 15.52; LL 2.72), and new potatoes (OR 20.7; chi 2 15.52; LL 2.72). The consumption of unpasteurized milk, animal fat, smoked meat and potatoes are nutritional risk factors which could have an influence on the severity of primary demyelinization in a high-risk area for multiple sclerosis.

[Diagnostic criteria in multiple sclerosis]. / Dijagnosticki kriteriji multiple skleroze.

Almost all the neurological diseases can imitate multiple sclerosis. No strictly specific laboratory test has become as yet available for its diagnosis. Information obtained by clinical examination of the patient--dissemination of different symptoms at the same time and the same symptom in various periods--supplemented by neuroradiological, neurophysiological and biological supplementary tests allow making diagnosis of multiple sclerosis with about hundred percent certainty.

Locked-in syndrome.

A patient, young fisherman, with a locked-in syndrome is reported, in whom intact consciousness, quadriplegia of spastic type, voluntary eye blinking, (de)sursumvergence and anarthria were observed. Thrombosis of the basilar artery and slightly disturbed bioelectrogenesis of the cerebral cortex were proved by clinical examination. The patient died after 41 days. At the autopsy thrombosis a. basilaris and ventrobasal pontine infarction were confirmed. Differential diagnosis of this and similar syndromes has been discussed.

Immunological observations in Guillain-Barré syndrome.

The results of some immunological analyses in 12 patients with the acute Guillain-Barré syndrome (GBS) are presented. The mean cerebrospinal fluid (CSF) concentrations of IgG and IgA were significantly increased. A longitudinal study of CSF IgG concentrations in 5 patients shows that the recovery period of the disease is not regularly accompanied by a decline of the IgG level. The finding of significantly reduced percentages of active T cells in the peripheral blood of patients with the acute GBS in comparison with the controls supports the view of the cellular immunity role in the pathogenesis of the disease. With the exception of HLA--B5 and HLA--B15, no other individual antigen was significantly more present in either the cases or controls.

[Immunology of epilepsy]. / Imunologija epilepsije.

An idea of the experimental and the clinical immunology of epilepsy has been presented in this paper. Experimental investigations suggest that the causality of epilepsy to molecular-immunological level has not been identified. Clinical observations testify the disordered immunologic homeostasis by primary effect of cerebral damage or, more frequently, by secondary expression of long-term anticonvulsant therapy. The behaviour of humoral immunology in chronic epileptic patients indicates the hiperimmune condition of organism; more evident effect of monotherapy by anticonvulsants on the level (rather lowered) of some immunoglobulins; the presence of anti-tissue antibodies in the absence of known autoimmune diseases. Cell immunity shows the tendency of suppression regardless of the form of epilepsy and its treatment.

Epidemiology of Huntington's disease in Rijeka district, Yugoslavia.

Epidemiologic study of Huntington's disease (HD) in the Rijeka district represents the first research of its kind carried out in Yugoslavia. After a detailed investigation of all available sources of health information, ten families, with a total number of 24 HD patients, were found. The prevalence rate of HD on March 31, 1981, was 4.46/100,000 population. Most of the patients involved were members from the second or third familial generation. The age at recognition of disease was 41.6 years, with earlier onset among the males. Involuntary movements frequently appeared as the initial symptomatology (45.8%). Duration of the disease from initial symptomatology to death averaged at 10.6 years. Six of nine patients who died had committed suicide. It took physicians of primary care, neurologists, and psychiatrists 5.3 years (1-12 years) to make a definite diagnosis. Nine of the affected families from Rijeka district were autochthonic households. Six of these families immigrated from Saxony, Slovakia and Upper Carinthia during the reign of the Habsburg dynasty (1619-1780).

Multiple sclerosis in Istria, Yugoslavia.

An epidemiological research of multiple sclerosis (MS) in Istria, Yugoslavia, was made in the period of 1980-1981. After examining all the sources of health care information, 125 potential MS patients were found in the investigated area. According to the diagnostic criteria by Schumacher et al., 47 affected were recognized and accepted as clinically definite MS patients. The MS prevalence rate in Istria on March 31st, 1981 amounted to 25.0/10(5) inhabitants (CI: 19.9-38.9). Such rates classify Istria in the middle between the medium and high risk zones for the disease in Europe and in the world. The onset age of MS in Istria was about 30 years, the female/male sex ratio was 2.13. The average duration of MS in Istria up to the prevalence day was 16.5 years. The average annual incidence rate was 1.5/10(5) inhabitants.