Parental caregiving of children prior to hematopoietic stem cell transplant

Using the Caregiver Reaction Assessment (CRA), we assessed positive reactions and burdens of the caregiving experience among parental caregivers (n = 189) of children scheduled to undergo hematopoietic stem cell transplant. Although widely used in non-parental caregivers, the CRA has not been used in parents of pediatric patients. Reliability (Cronbach’s alpha: .72–.81 vs. .63) and concurrent validity (correlation: .41–.61 vs. .28) were higher for negatively framed than positively framed subscales. Results indicate that the caregiving experience is complex. The parents experienced high caregiver’s esteem and moderate family support, but also negative impacts on finances and schedule, and to a lesser degree, health. Compared to non-parental caregivers, parental caregivers experienced higher esteem and more impact on finances and schedule

National Child Development Study: Retirement Plans and Expectations, Qualitative Study, 2016

Abstract copyright UK Data Service and data collection copyright owner.The National Child Development Study (NCDS) is a continuing longitudinal study that seeks to follow the lives of all those living in Great Britain who were born in one particular week in 1958. The aim of the study is to improve understanding of the factors affecting human development over the whole lifespan. The NCDS has its origins in the Perinatal Mortality Survey (PMS) (the original PMS study is held at the UK Data Archive under SN 2137). This study was sponsored by the National Birthday Trust Fund and designed to examine the social and obstetric factors associated with stillbirth and death in early infancy among the 17,000 children born in England, Scotland and Wales in that one week. Selected data from the PMS form NCDS sweep 0, held alongside NCDS sweeps 1-3, under SN 5565. Survey and Biomeasures Data (GN 33004):To date there have been nine attempts to trace all members of the birth cohort in order to monitor their physical, educational and social development. The first three sweeps were carried out by the National Children's Bureau, in 1965, when respondents were aged 7, in 1969, aged 11, and in 1974, aged 16 (these sweeps form NCDS1-3, held together with NCDS0 under SN 5565). The fourth sweep, also carried out by the National Children's Bureau,&nbsp;was conducted in 1981, when respondents were aged 23 (held under SN 5566). In 1985 the NCDS moved to the Social Statistics Research Unit (SSRU) - now known as the Centre for Longitudinal Studies (CLS). The fifth sweep was carried out in 1991, when respondents were aged 33 (held under SN 5567). For the sixth sweep, conducted in 1999-2000, when respondents were aged 42 (NCDS6, held under SN 5578), fieldwork was combined with the 1999-2000 wave of the 1970 Birth Cohort Study (BCS70), which was also conducted by CLS (and held under GN 33229). The seventh sweep was conducted in 2004-2005 when the respondents were aged 46 (held under SN 5579), the eighth sweep was conducted in 2008-2009 when respondents were aged 50 (held under SN 6137) and the ninth sweep was conducted in 2013 when respondents were aged 55 (held under SN 7669). Four separate datasets covering responses to NCDS over all sweeps are available. National Child Development Deaths Dataset: Special Licence Access (SN 7717) covers deaths;&nbsp;National Child Development Study Response and Outcomes Dataset (SN 5560) covers all other responses and outcomes;&nbsp;National Child Development Study: Partnership Histories (SN 6940) includes data on live-in relationships; and National Child Development Study: Activity Histories (SN 6942) covers work and non-work activities. Users are advised to order these studies alongside the other waves of NCDS.From 2002-2004, a Biomedical Survey was completed and is available under&nbsp;End User Licence (EUL) (SN 8731) and Special Licence (SL) (SN 5594).Linked Geographical Data (GN 33497):&nbsp;A number of geographical variables are available, under more restrictive access conditions, which can be linked to the NCDS EUL and SL access studies.&nbsp;Linked Administrative Data (GN 33396):A number of linked administrative datasets are available, under more restrictive access conditions, which can be linked to the NCDS EUL and SL access studies. These include a Deaths dataset (SN 7717) available under SL and the&nbsp;Linked Health Administrative Datasets (SN 8697) available under Secure Access.Additional Sub-Studies (GN 33562):In addition to the main NCDS sweeps, further studies have also been conducted on a range of subjects such as parent migration, unemployment, behavioural studies and respondent essays. The full list of NCDS studies available from the UK Data Service can be found on the NCDS series access data webpage.&nbsp;&nbsp;How to access genetic and/or bio-medical sample data from a range of longitudinal surveys:For information on how to access biomedical data from NCDS that are not held at the UKDS, see the&nbsp;CLS Genetic data and biological samples&nbsp;webpage.Further information about the full NCDS series can be found on the Centre for Longitudinal Studies website.&nbsp; The National Child Development Study (NCDS) originated in the ‘Perinatal Mortality Survey’, which examined social and obstetric factors associated with still birth and infant mortality among over 17,000 babies born in Britain in the week 3-9 March 1958. Surviving members of this birth cohort have been surveying on eight further occasions in order to monitor their changing health, education, social and economic circumstances – in 1965 (age 7), 1969 (age 11), 1974 (age 16), 1981 (age 23), 1991 (age 33), 1999/2000 (age 41/42), 2004/05 (age 46/47), 2008/09 (age 50) and 2013/14 (age 55). There have also been surveys of sub-samples of the cohort, the most recent occurring in 1995 (age 37), when a 10% representative sub-sample was assessed for difficulties with basic skills. Finally, during 2002-04, 9,340 NCDS cohort members participated in a biomedical survey, carried out by qualified nurses.Main Topics:Retirement</p

Identity, politics, and the future(s) of religion in the UK: the case of the religion questions in the 2001 decennial census

With the publication of the results of the United Kingdom's decennial Census questions on religion it is important to situate this data within the wider social and religious contexts that led to the inclusion of these questions in the Census. This includes engagement with some of the issues likely to affect both the data itself and the uses to which it might be put. The varied forms of the questions on religion as asked in different parts of the UK are outlined within the context of a discussion of the scholarly taxonomy of religions. The questions are also explored in the light of the interplay between the varied categories of religions and the official ‘recognition’ implied by their use within the Census. Finally, the place of religious statistics within the ‘politics of identity’ as well as their potential contribution to the development of a communalist ‘identity politics’ are critically explored.N/