Offord Centre for Child Studies, McMaster University, Chedoke Site, Central Building, Room 310, 1280 Main Street West, Hamilton, Ontario L8S 4K1, Canada; Department of Psychiatry and Behavioural Neurosciences, St. Joseph's Healthcare Hamilton, West 5th Campus, Administration - J Wing, 100 West 5th, Hamilton, Ontario L8N 3K7, Canada. Electronic address: firstname.lastname@example.org.
The aim of this study was to test for measurement invariance and examine differences in global self-concept between adolescents with and without physical illness or developmental disability. The sample consisted of adolescents 10-19 years who participated in the Canadian National Longitudinal Survey of Children and Youth (N=8491). Multiple group confirmatory factor analysis was used to test for measurement invariance. Twenty-three percent (n=1966) of participants had a physical illness or developmental disability. Support was found for strict measurement invariance between groups suggesting adolescents in both groups perceived items similarly, indicating that comparisons between adolescents with and without physical illness or developmental disability are meaningful. Controlling for several sociodemographic characteristics, evidence suggested that self-concept is lower in adolescents with physical illness or developmental disability, ß=-0.24, p=0.0005, compared to their healthy peers. Future work should attempt to understand the processes leading to compromised self-concept in adolescents with physical illness or developmental disability.
Palliative care patients experience many debilitating symptoms and functional loss, but few longitudinal studies on the subject are available.
To assess the symptoms and functional status of patients admitted to specialised palliative care, to investigate whether changes occur over the admission period, and to establish whether symptoms and physical and cognitive function differ, based on the service setting. In addition, to participate in the development of the interRAI Palliative Care instrument (interRAI PC).
A prospective longitudinal study (N=123) was conducted at three time points: at admission to specialised palliative care, 14 days post-admission, and at discharge or death. The interRAI PC version 8 was used for data collection. Descriptive statistics were used, together with the Friedman statistical test and Wilcoxon post-hoc test.
Patients experienced a wide spectrum of symptoms; the most frequent were fatigue, loss of appetite, pain, difficulty sleeping, insufficient nutritional intake and nausea. Some symptoms stayed relatively stable over time, but others increased, while physical and cognitive function decreased over time. The interRAI PC version 8 proved comprehensive and simple to use.
Patients experienced a significant symptom burden and functional loss from admission to discharge or death. Symptoms indicating progressive deterioration became more frequent and severe, while physical and cognitive function decreased at all levels. Overall, inpatients had more symptoms and functional decline than home-care patients. The interRAI PC version 8 proved valuable in collecting clinical information and detecting changes over time as other interRAI suite instruments.
As part of the Swedish state-funded healthcare system, housing adaptations are used to promote safe and independent living for disabled people in ordinary housing through the elimination of physical environmental barriers in the home. The aim of this study was to describe the cohabitants' expectations and experiences of how a housing adaptation, intended for the partner, would impact their everyday life. In-depth interviews were conducted with cohabitants of nine people applying for a housing adaptation, initially at the time of the application and then again 3 months after the housing adaptation was installed. A longitudinal analysis was performed including analysis procedures from Grounded Theory. The findings revealed the expectations and experiences in four categories: partners' activities and independence; cohabitants' everyday activities and caregiving; couples' shared recreational/leisure activities; and housing decisions. A core category putting the intervention into perspective was called 'Housing adaptations - A piece of the puzzle'. From the cohabitants' perspective, new insights on housing adaptations emerged, which are important to consider when planning and carrying out successful housing adaptations.
Longitudinal twin studies on long term conservation of individual metabolic phenotypes can help to explore the genetic and environmental basis in maintaining metabolic homeostasis and metabolic health. We performed a longitudinal twin study on 12 metabolic phenotypes from Danish twins followed up for 12 years and Chinese twins traced for 7 years. The study covered a relatively large sample of 502 pairs of Danish adult twins with a mean age at intake of 38 years and a total of 181 Chinese adult twin pairs with a mean baseline age of 39.5 years. Bivariate twin models were fitted to the longitudinal measurements taken at two time points (at baseline and follow-up) to estimate the genetic and environmental contributions to phenotype variation and correlation at and between the two time points. High genetic components in the regulation of intra-individual phenotype correlation or stability over time were estimated in both Danish (h2>0.75 except fasting blood glucose) and Chinese (h2>0.72 except blood pressure) twins; moderate to high genetic contribution to phenotype variation at the two time points were also estimated except for the low genetic regulation on glucose in Danish and on blood pressure in Chinese twins. Meanwhile the bivariate twin models estimated shared environmental contributions to the variance and covariance in fasting blood glucose in Danish twins, and in systolic and diastolic blood pressure, low and high density lipoprotein cholesterol in Chinese twins. Overall, our longitudinal twin study on long-term stability of metabolic phenotypes in Danish and Chinese twins identified a common pattern of high genetic control over phenotype conservation, and at the same time revealed population-specific patterns of genetic and common environmental regulation on the variance as well as covariance of glucose and blood pressure.
The aim of this study was to illuminate the lived experiences of families where a child had survived 7 years from a diagnosis of childhood cancer. This article describes one part of an inductive and longitudinal research project that included 17 families. Four families whose child was diagnosed with cancer 7 years previously were interviewed using a hermeneutical phenomenological approach. The families lived experience was described in one essential theme, "Living an everyday life through the child's cancer trajectory," further illuminated in 3 related themes: "Leaving the disease behind yet feeling its presence," "Being the same yet always different," and "Feeling stronger yet vulnerable." The results suggest that family members feel vulnerable even if a long period of time has passed since completion of treatment. To varied degrees they still may need support. When moving forward in life, the family members are helped if they can reconcile their memories and experiences derived from the childhood cancer trajectory.