text:
Research | Open | Open Peer Review | Published: 01 August 2017
'We knew it was a totally at random thing': parents' experiences of being part of a neonatal trial
Merryl Harvey1,2,3,
Phumza Nongena1,4,
David Edwards1 &
Maggie Redshaw2
Studies exploring parents' trial experiences generally relate to their understanding of the consent process and the development of researcher strategies to facilitate recruitment and retention. The aim was to better understand parents' experience of being part of a trial at the time and their perceptions of trial participation in retrospect.
Data were collected in a number of ways: from recorded discussions between parents and clinicians about the MRI or ultrasound, in open-text responses to questionnaires and in qualitative interviews at 1 and 2 years after participation. Thematic analysis was undertaken using NVivo10.
Key themes identified were 'deciding to take part', with subthemes associated with 'benefitting self', 'benefitting others' and 'being prepared'; 'the randomisation process' with subthemes relating to 'acceptance' and 'understanding' and 'actual engagement' with subthemes of 'practicalities' and 'care from responsive staff'.
Parents' perspectives on the trial and the processes and information received reflect their understanding and experience of the trial and the value of parent-friendly information-giving about participation, randomisation and follow-up. The practical and logistical points raised confirm the key issues and parents' need for sensitive care and support in the course of a trial. Looking back, almost all parents were positive about their experience and felt that the family had benefitted from participation in the trial and follow-up studies, even when the developmental outcomes were poor.
ClinicalTrials.gov, ID: NCT01049594. https://clinicaltrials.gov/ct2/show/NCT01049594. Registered on 13 January 2010.
EudraCT: EudraCT: 2009-011602-42. https://www.clinicaltrialsregister.eu/.
The complexity of studies involving children and the need for proxy consent, usually given by the parents, provides a unique set of circumstances in which to explore perceptions of research and trial participation [1]. Parents seem to welcome being asked if their child could participate in a study even if, for whatever reason, they decide to decline [1, 2]. There are studies which specifically investigated parental motivates to consenting their baby or child to taking part in a study. The most common explanations are personal benefit for the child or family and altruistic reasons [3,4,5]. Researchers have also looked at the views of parents on specific aspects of trials; for example, deferred consent in neonatal and paediatric clinical trials with treatment that was considered emergency, using both quantitative and qualitative methods [6,7,8].
Studies exploring parents' experiences and perceptions of their child being part of a research study generally relate to their recollection and understanding of the consent process [9,10,11,12], the exploration and development of strategies to facilitate recruitment and retention [1] and waiving consent in a trial [13]. Evidence, based on interviews or focus groups suggests that the information that parents value most when deciding about their child's participation in research is practical information about what will be involved and when this will take place [4]. Other factors influencing parental decision-making include their own knowledge and experience, their child's health status, staff attitudes to research and the way that staff communicate with them [3].
Although some studies have investigated parents' longer-term perspectives on their child being part of a trial [4], these are few in number. The present study was part of a programme of work that involved a clinical trial, with qualitative components that focussed on parental perceptions and experience over the whole course of their participation in the planned research programme through to outcomes for their children at 2 years [14]. The aim was better to understand parents' experience at the time, in close proximity to the intervention and their perceptions of trial participation in the longer term.
The ePrime study, involved a trial of information-giving to parents following cerebral magnetic resonance imaging (MRI) and ultrasound (US) scans undertaken at term of babies who had been born before 33 weeks' gestation. We carried out a parallel-group randomised controlled trial with 1:1 allocation that compared the effect of prognostic information derived from either MRI or ultrasound on parental anxiety and coping, health costs, and health-related quality of life; and in a nested diagnostic evaluation with blinded assessment compared the precision of the two types of scan. Thus, in the randomised controlled trial (RCT) we tested whether information from MRI improved infant care and family wellbeing compared to information from cerebral ultrasound. Parents received either the MRI or ultrasound scan result and prognostic information based upon that particular scan. Families were subsequently followed up and a full developmental assessment of the child was carried out at 20–24 months' corrected age.
Babies were recruited to the ePrime study while being cared for in one of 13 neonatal units in the London area. Written informed consent from parents was obtained at the recruitment site and affirmed at the scanning appointment at the specialist centre. Data measuring and exploring the impact on parents' of the scan result were collected over 2 years and the data presented in this secondary analysis were drawn from three study components:
Audio-recordings were made at the time of discussions between parents and clinicians about the baby's MRI or ultrasound result with parental agreement and consent. These discussions took place immediately following the scan at term. The recordings were fully transcribed and analysed thematically using NVivo10 [15]. While the audio-recordings of the clinician-parent discussions were primarily undertaken to capture the ways in which medical staff gave information based on the baby's scan findings and prognosis [16, 17] the discussion also involved parents' reactions to allocation and more generally to participation in the trial. The recordings were made on a subset of 60 clinician-parent discussions targeting three time periods during the first, second and third years of the study, carried out consecutively. Analysis was based on transcripts of 36 of these interviews, saturation having been reached
Parent-completed questionnaires, containing standard measures and general questions giving them the opportunity to respond in their own words, were sent to all parents following the term scanning appointment. The questionnaires were administered at three time points: shortly after the term scan visit, 1 year post scan and immediately prior to the developmental assessment carried out 2 years after the scan
Qualitative interviews with subsamples of parents were carried out by telephone around the time of their child's first birthday and when their child had reached approximately 2 years' corrected age. Those parents who had previously consented to interview were invited to reaffirm their consent by the research nurse when contacted. Initially, parents were randomly selected; however, towards the end of data collection purposive sampling was used to ensure diversity of this sample in terms of age, education and ethnicity. A topic guide was used by the interviewer, which included references to the trial and scanning appointment day. Efforts were made to interview both mothers and fathers. No attempt was made to interview the same parents at 1 and 2 years. The interviews were recorded and fully transcribed
Transcriptions of the parent-clinician discussions, open-text responses in the questionnaires and transcriptions of the 1- and 2-year interviews were analysed thematically with a focus on study participation using NVivo10 [15]. It became apparent in the course of analysis, when examining data from individual study components, that there were commonalities in terms of the themes relating to participation in the trial. Thus, these qualitative data were pooled and analysed thematically in this secondary analysis [18]. Extracts of the data relating to trial participation were coded and the codes were organised into themes and subthemes. New codes were generated when the data appeared to capture something different. The coding framework was then reviewed and revised until the final structure was agreed by MR and MH, leading to the identification of key themes.
A total of 434 families with 510 babies were recruited and participated in the trial, of which 210 were in the MRI arm and 214 in the US arm of the trial, 36.2% of those eligible [14]. All the babies were born before 33 weeks' gestation (mean gestational age of 30 weeks and a mean birth weight of 1305 g.)
Audio-recordings of clinician-parent interviews at around term involving 34 mothers, 17 fathers and 1 grandmother, related to 43 babies (including five sets of twins and one set of triplets) were analysed. Most families (80% of the 434 participating in the main study), agreed to participate in the audio-recorded discussions. A total of 60 recordings were made and a subset of 36 of these carried out by different clinicians, evenly distributed over the three different years of the study, were analysed. The discussions reflected information-giving and parent's understanding and perceptions of the trial.
In the 434 families more mothers than fathers completed the questionnaires: 84% of mothers and 79% of fathers, shortly after the scans were carried out; 82% and 62%, respectively, at 1 year and 97% and 82%, respectively, at 2 years. Of the parents who completed questionnaires, over 94% responded to an open-text question in one or more of the questionnaires.
At 1 year, 30 parents (25 mothers, 5 fathers) were interviewed by telephone. The interviews related to 35 babies (including four sets of twins and one set of triplets). During these interviews parents talked about why they had agreed to take part in the study and recalled the scanning visit. This led to discussion about their perceptions of the study and the way in which it was conducted.
At 2 years, 30 parents (21 mothers, 9 fathers) were interviewed by telephone several weeks after the 20–24 months' corrected age developmental assessment. The interviews related to 31 babies (including four sets of twins). During these interviews, parents recalled the recent developmental assessment and the discussion led them to reflect upon the totality of their 'ePrime experience,' and their reasons for taking part in the study. None of the parents who took part in the 2-year interview had participated in the 1-year interview.
This secondary analysis led to the identification of three key themes about experience of the trial, which include a number of subthemes (Table 1).
Table 1 Key themes and subthemes relating to participation in trial and follow-up
Evidence for all of the trial-related themes and subthemes arose from two or more of the data sources. The themes and subthemes are described with direct quotes used for illustration. Details associated with the quotations are as follows: 'M' denotes mother, 'F', father and 'C' clinician; 'AR' indicates audio-recording; 'Q2', 'Q3', and 'Q4'indicates the questionnaire completed after the scan and at 1 and 2 years; the year-1 and year-2 interviews are indicated as 'Y1 Int' and 'Y2 Int', respectively.
Deciding to take part
This key theme which describes the feelings and self-ascribed motivation of parents who took part in the trial. Three subthemes were identified. The first two relate to the rationale that parents put forward for consenting to their child's participation in the study. Reciprocity was a construct underlying this theme and is reflected from two perspectives: parents framed their reasons in terms of 'benefitting others' and 'benefitting self' (the baby, themselves and the wider family). The third subtheme which arose in the context of deciding to take part was 'being prepared' which concerns their reflections on their own level of understanding at the time of making the decision to participate.
Benefitting others
Parents were explicit about valuing what they had received in terms of health care, particularly the neonatal care that their baby had received. They gave altruistic reasons in principle for agreeing to involvement in the study: they wished to help other babies and families and referred to wanting to 'give something back, after all the help that you get during the process of having a premature baby'. However, they were less specific about how this might work. Nevertheless, all parents were pleased to 'be part of it [the study]', grateful for the care their family had received and felt their involvement in the research had the potential to 'help other people as well' and improve the delivery of neonatal care in the future. At the same time they emphasised the smallness of their role and acknowledged the incremental way in which it might help. The references to giving back continued over the 2-year period that followed recruitment:
M: 'Oh we want to do it anyway, because they were so good.'
C: 'Well, thank you, thank you for that. We're very grateful, for that.'
M: 'If it helps others…'
F: 'I mean, I was a bit dubious about doing it, wasn't I? But you know, they were really good in X [hospital]. Well you know, if a tiny percent helps anyone else.'
M: 'Exactly.' AR 305
'I've always thought it was a good idea for the girls to get involved in stuff like this, you know, studies and that. So the one thing that's been stuck in my mind is that this is their time to help.' Y1 Int M1266-1279
'I think we were in that situation where we felt it would be very easy just to say "no" and let's just not do it. But at some point, you know, if things are to improve, someone has to say, "let's do this". We decided that this had happened to us and actually someone might benefit down the line, if we actually do something.' Y1 Int M3239
'I'm glad to be part of the research programme – if not for me – to help others.' Q2 M3095
'I think, you know, it's, err, nice to feel that we can contribute in a very small way, but just towards, you know,…the amazing things that can be done for premature babies now.' Y2 Int M1776-1769
Benefitting self – should be benefitting self, baby and family
Most parents gave altruistic reasons for taking part in the research in principle; they specifically referred to the potential benefits to their baby, themselves and their wider family. They particularly felt that the opportunity for this more detailed scan could provide them with knowledge and additional information about their baby's prognosis:
'Well it's great to be able to be part of something like this because either way you get to go away with more information… And you can move forward that way.' AR M1636
'Simply I think one of the main reasons, the first main reason is the fact that it gave us the opportunity of possibly finding out a bit more about the situation.' Y1 Int F1130
Although not directly asked, most parents commented that they hoped to be given the MRI findings at the scanning appointment and the possibility of that and the resulting information was a potential gain. This was recognised in close proximity to the scanning and also reflected on over a longer time period:
C: 'The results you're going to get are of the MRI.'
M: 'Oh, fantastic.'
F: 'Great.'
M: 'I think we were hoping for that actually, yea.' AR 1266-1279
'I think the possibility of getting the MRI helped us to decide.' Yr1 Int M3239
'We did it hoping to get the MRI result.' Yr 2 F4845
Similarly, parents agreed to take part in the study because of the developmental assessment which could provide further information about their child's progress and further prognosis. They were explicit about the ongoing contact provided by the research team during the study being another reason why they agreed to participate. At the same time parents could feel valued at being asked to take part in the study and some alluded to their own feelings of self-worth in deciding to participate:
'I think I took part because you don't know when you have a premature baby. You don't know what's wrong with them. You're never going to find out, you know, I mean obviously they give you information why this or why that, in my circumstance it was myself that was ill and that caused 2583 to come 3 months early. But other people, babies just don't grow and they have to come out. So I think the benefit of it and knowing, you know, this is good. You know, you have your babies normally at full term and you go home within 3, 4 hours. But here I was thinking, well 2583 was in hospital a long time. So it's nice to know and also to be quite honest, nice to have the support there after he was brought home. You know, they ring me and we have a chat, he got his first little birthday card from them. For me that's something that I want to keep for him when he grows up.' Yr 1 Int M2583
'I do remember that was another reason why we were happy to take part in this study, because we will be coming in with the children when they're 2 years old and they'll be assessed and it will be really good for us to know where they're up to when they're at that age.' Yr 1 Int M2047-2059
'I think, you know, for us one of the reasons why we decided to be part of the ePrime study was because, you know, it wasn't just…, it wasn't so much to do with the actual brain structure or anything like that, it was all to do with her developmental needs.' Yr 2 Int M4063
'It was wonderful to be part of it, we're just glad we were asked and that we could be part of it.' Yr 2 Int F1910
Being prepared
Within this subtheme parents talked about whether or not they had been adequately prepared for what the scanning actually involved and the results that they might receive in participating in the trial. For some, it was only in retrospect that they realised that they had been poorly prepared. This was either because of their own lack of understanding about the study requirements, not thinking through what the study could involve emotionally or practically, or the implications for them of their child's participation. Insufficient explanations or limited information from the research team about the scans was also felt to have contributed:
'I found it very difficult returning to the neonatal unit for the MRI scan etc.' Q2 M3262
'The sedation, I don't think that had properly been explained because they had to give it in a certain way, it was oral sedation and that was quite distressing.' Yr 1 Int M3088
'I was a bit concerned about her having the MRI when we actually got there and saw the room and saw the machine. She just seemed so little.' Yr 1 Int M2345
'I just remember being there, I just remember that it was intense and it felt slightly intimidating because it seemed so dramatic.' Yr 2 Int F1910
Although their babies had undergone scans while in the neonatal unit, several parents said that they were quite unprepared for the possibility of being given an abnormal result at the scanning visit around term when US and MRI scans were carried out:
'Was very worried about the results when the scans were being done – hadn't really thought before the scanning day that may have been given bad news.' Q2 F7536
'I did get a little upset at the MRI scan as I didn't realise that the tests might find something wrong with my son. I wasn't prepared mentally to find out any bad news.' Q2 M3321
The same mother reiterated the point later when her child had reached the age of 2 years:
'I wasn't aware what they were looking for with the scan… I wasn't prepared for this.' Q4 M3321
I do think though at the time, we didn't really prepare ourselves for how we would feel when we got the results… We thought about being helpful, you know the good intention of the project, but I don't think we'd really thought through how it was going to affect us, in terms of how are we going to then deal with whatever we're told.' Y1 Int M2345
The randomisation process
The second key theme focusses on issues relating to acceptance of the randomisation process, and whether or not parents appreciated what randomisation meant for them and their baby.
Accepting the process
Most parents understood the structure of the trial as described to them and recognised the difference between their wishes and what the study design required. Parents who referred to randomisation generally apprehended that there was an equal chance of them being given the MRI or US result and why randomisation was undertaken:
'We did it hoping to get the MRI result, but we knew there was a 50:50 chance.' Yr 2 Int F4845
'Would have liked MRI result but understand randomisation process.' Q2 M5977
'Yes, it was the ultrasound and not the other one, the MRI. I think we probably would have preferred the MRI because we thought it would be more in detail and more, but we knew it was a totally at random thing.' Yr1 Int M3239
While most had accepted the notion of randomisation, at the same time some acknowledged they would have preferred to be in the MRI arm of the trial:
'I would love to know the results of the MRI scan! I realise, however, that this would negate the purpose of the study!' Q2 M1358
However, a few parents 'would have liked both results' and on the scanning day they were not prepared for only one result, though they had been told that at the 2-year follow-up they would be given the result of the 'other' scan:
'Would have liked result of "other" scan – didn't realise wouldn't get both results.' Q2 M5301
The qualitative data did show that a few parents had not understood what was implicit in the randomisation process and that this was integral to the trial:
'The selection on which result is get is unfair.' Q4 M2675
'I didn't understand why the results were split between MRI and ultrasound. I would have liked both results.' Q2 F4362
Some parents felt mixed about having the results and the role of the randomisation process which may have meant only having some of the information available:
'We were very upset for a few weeks following the scan and results. We found it difficult to come to terms with the possibility of problems down the line.' Q2 M1017 (MRI result received)
'It was reassuring that the scan did not pick up any problems, but as it is not conclusive, it is hard to fully relax due to the results.' Q4 M1757 (US result received)
'I would have liked more information about the type of outcomes and what it meant/could mean, that is what could an MRI determine for example, what empirical evidence is there about imaging and future cognitive impairment etc.' Q2 M7427 (MRI result received)
Actual engagement with the study
Within this key theme, two subthemes were identified that arose from parent's reflections on what the study really involved. The first focusses on the 'practicalities' of the study processes and the second on 'care from responsive staff'.
This subtheme arises from parents' comments about the way in which the study was conducted. There was a particular focus on practical and logistical issues and the ways in which these impacted on their child, themselves and the family. Many of the comments related to the scanning appointment; the care that they and their babies received, the facilities available and managing the scanning of twins and triplets on the same day. While the scans were seen as valuable, the clinical environment and necessary procedures could be perceived as uncomfortable and distressing. Having finally taken their preterm babies home, several parents described the challenge of bringing them back to a hospital for the research study so soon after discharge. Some parents had clearly been conflicted on this point and referred to practical issues such as a lack of space and facilities for suitable for siblings, being back in hospital and negative issues relating to feeding and the use of sedation. Feeling that they were doing the right thing was moderated by some of the difficulties experienced at this time:
Appointments that involved twins and triplets were longer and more tiring:
'Yes, it was a pretty tough day because it was a bit full-on, so, I can't remember which one of them actually was a bit fractious that day. But it was a long day.' Y1 Int F2047-2059
'Helpful to have full facilities for baby care. Generally a long day with twins but easier to do together than on separate days.' Q4 M6470-6487
Most parents, though they may have been worried at the start of the discussion, did not receive abnormal results and on reflecting back later indicated that they enjoyed the scanning day and that they had been made to feel welcome, comfortable and relaxed: 'You feel sort of at home here'; 'Everything was fine today. I'm normally quite nervous'; 'We've had a good day out'; and 'it felt like it was done very well indeed':
'I would just like to add that throughout the day we were well looked after which made us feel at ease whatever the outcome of the test results were going to show.' Yr 1 Int M2753
Many commented positively about the conduct of the study, particularly what was seen as the later follow-up of their child's development, valuing the arrangements and the way in which they had been 'looked after' in the context of the 'assessment' or 'test' that was carried out:
'Thanks for looking after us so well on the assessment day; this was the first time we has been out all day and in itself was a great confidence boosting exercise with the safety net of being in a hospital!' Q2 M1447-1459
Care from responsive staff
The importance of a responsive and professional research team was recognised and the individualised nature of the care that parents felt they received was emphasised in the text giving rise to this subtheme capturing parents' thoughts about the study team carrying out the trial. They referred to a need to be treated 'sympathetically and respectfully' and staff who had 'consideration and patience with us… bearing with us':
'Staff [were] very supportive when I got emotional [at the scanning appointment].' Q4 M2663
'So when we came there the first time [scanning appointment]… the people who have been with us have been very sensitive and very, very good, so it's been a very good experience for us.' Yr 2 Int M1804
While most were parents were grateful to the research nurses and physicians for the way in which the scans were carried, not all were positive. Critical comments generally related to what parents saw as a lack of knowledge or sensitivity. This particularly related to feeling their role as a parent was being usurped or negated:
'The nurses kept taking my daughter off me [at the scanning appointment], i.e. to undress her, etc. Being back in the neonatal is difficult enough without nurses trying to do everything as well.' Q2 M3262
'I think it's crucial that staff make sure parents don't feel excluded from their baby's care. When our baby had her assessment [scanning] visit, she was taken away, without our permission, because she started crying when the doctor was speaking to us. This was apparently to help us focus, but it resulted in quite the opposite effect. I was also made to feel in the way when I attempted to comfort her during her head scan.' Q2 M3438
'One of my baby's earplugs came off over and over again… I let them know… Then X [health care professional] told me to leave the MRI room. …Her attitude was extremely aggressive, and I felt as if she was saying I was an idiot who didn't listen to her. This made me so upset and angry. I considered calling off the test. I volunteered to bring my babies to the test and saw them not handling my babies with confidence.' Q2 M1515-1521
This paper addresses the need identified by Shilling et al. [1] to inform clinicians and practitioners what parents think about participating in trial-based research. The parts played by altruism and self-interest in 'deciding to take part' in the trial were identified in the analysis and are evident in the subthemes of 'benefitting self' and 'benefitting others'. The subtheme 'being prepared' highlights the key need for participants to have access to good quality information, to be well informed and prepared for what might be learned as a consequence of the trial. 'Actual engagement' reflects 'the practicalities', that is the realities of participating in the trial for parents and their needs in terms of sensitive and 'care from responsible staff'.
The themes identified in this study echo some aspects of other studies in the academic literature have identified [19, 20]. In a systematic review of studies on consent to clinical trials with pre-term or sick neonates, the basic motivations of parents in agreeing to research [20) were fairly consistent across multiple studies [4]. Points of difference are likely to be related to study design, timing and the nature of the research question asked.
In the trial on which this study was based, the intervention involved significant diagnostic and prognostic information-giving, but did not, as with some clinical trials, take place in an urgent or emergency context. Neither did it involve a clinical intervention such as medication given in a placebo-controlled trial [21, 22], though it did involve outcome assessed at 20–24 months' corrected age. Relatively well preterm babies and mothers were scanned having been discharged from hospital [14]. Knowing more about their baby's condition and the possibilities for the longer term was perceived as a particular benefit of participation for parents taking part in this trial. The prognostic information provided following the scanning appointment and the longer-term follow-up were personal drivers for participation and for some parents contributed to empowerment. The small babies and the mismatch in size with the MRI equipment, together with the relief experienced when results were in the normal range underpinned some parents' views about the trial experience. The painful emotional responses of some mothers to some of the interactions with the health professionals on the scanning day may reflect echoes of their neonatal experience, their continued vulnerability after their baby had been discharged home and their strong sense of the need to naturally protect and care for their babies in the clinical environment [23, 24].
Other researchers have noted that benefits are not always tangible. Increasing self-esteem, pride in participation [25] and feeling valued were important to parents in this study as was also found in non-trial studies [5]. More broadly, the study parents valued the opportunity to participate and described appreciating being part of something bigger, in a continuing way [1].
The study adds to the evidence about parents' experience of trials. Engaging them in research and providing sufficient and appropriate information for them to be well informed, while balancing their information and emotional needs is not easy and checks need to be made on their understanding both at the time of the recruitment and consent processes, and following the intervention [17]. The demands and expectations placed on parents need to be thought through. Most participate willingly, but there is an impact and a potential emotional burden and staff should not underestimate parents' emotional as well as information needs in trial participation, particularly in bringing their baby or babies back to the hospital environment. A challenge for those taking consent is to ensure that parents understand all aspects of the study and the implications without overloading them with lengthy, complex information [26]. Ensuring that the randomisation process is understood by all participating parents is critical in avoiding misunderstandings about this necessary aspect of study design and its implications for care or treatment [21, 22, 27].
The triangulation of data using the different sources available in this study, that is parents' reflection on their experiences (interviews and questionnaires) and communication with clinicians (audio-recordings) at the start of the trial is a strength, as is the number and diversity of parents involved [1]. The study also captured the views and experiences of mothers and fathers. As with other studies on this topic, a limitation may be that parents could have felt less able to make critical comments during the early stages of trial data collection due to the recency of the care that their infants had received. However, some clearly did feel able to make negative comments about the way in which the study was conducted as shown in some of their responses to the questionnaires and in the interviews. The time lag between early parts of study and later interviews and questionnaires may have affected parental recall; however, similar views were expressed across the whole period of data collection. The longer time frame, during which parents may have become less anxious, allowed them to reflect and may be considered a further strength.
Implications for practice
The themes identified and parents' responses suggest that there is a need for clinicians and practitioners to reflect on their practice and the ways in which they give information and interact with parents during a study. An inevitable challenge is that what is right for one family is not necessarily right for another. Recognising the parental role during studies of preterm infants and at clinic is critical from the parents' perspective, as most will have experienced early separation and the rollercoaster of feelings common to parents following preterm birth. The goal of providing individualised care for each family, even within a trial, in addition to provision in the broader environment of neonatal and paediatric care is critical.
The comments and reflections on the trial described in this paper represent an opportunity to better understand what trial participation meant to parents, both at the time and subsequently. The findings provide insights on the issues that are important for parents and the ways in which they viewed the trial design, recruitment and research process. Almost all were positive about their experiences and felt that the family had benefitted from participation. The practical and logistical points raised confirm the key issues with regard to research conducted on young babies and their parents and their need for sensitive care and support in the course of a trial.
MRI:
Shilling V, Williamson PR, Hickey H, Sowden E, Beresford MW, Smyth RL Young B. Communication about children's clinical trials as observed and experienced: qualitative study of parents and practitioners. PLoS One. 2011. doi: 10.1371/journal.pone.0021604.
Cartwright K, Mahoney L, Ayers S, Rabe H. Parents' perceptions of their infants' participation in randomized controlled trials. J Obstet Gynecol Neonatal Nurs. 2011;40(5):555–65. ISSN 1552-6909.
Caldwell PHY, Butow PN, Craig JC. Parents' attitudes to children's participation in randomized controlled trials. J Pediatr. 2003;142(5):554–9.
Helgesson G, Hansson MG, Ludvigsson J, Swartling U. What parents find important when participating in longitudinal studies: results from a questionnaire. Clin Ethics. 2010;5(1):28–34.
Ayers S, Sawyer A, Düring C, Rabe H. Parents report positive experiences about enrolling babies in a cord-related clinical trial before birth. Acta Paediatr. 2015;104(4):e164–70.
Kenyon S, Dixon-Woods M, Jackson C, Windridge K, Pitchforth E. Participating in a trial in a critical situation: a qualitative study in pregnancy. Qual Saf Health Care. 2006;15:98–101. doi:10.1136/qshc.2005.015636.
Woolfall K, Frith L, Gamble C, Gilbert R, Mok Q, Young B, CONNECT Advisory Group. How parents and practitioners experience research without prior consent (deferred consent) for emergency research involving children with life threatening conditions: a mixed method study. BMJ Open. 2015;5(9):e008522.
Jansen-van der Weide MC, Caldwell PH, Young B, de Vries MC, Willems DL, Van't Hoff W, Woolfall K, van der Lee JH, Offringa M. Clinical trial decisions in difficult circumstances: parental consent under time pressure. Pediatrics. 2015;136(4):e983–92.
Allmark SA, Mason PJ. Obtaining informed consent to neonatal randomised controlled trials: interviews with parents and clinicians in the Euricon study. Lancet. 2000;356(9247):2045–51.
Hubert O, Ballard H, Shook LA LA, Nirmala SD, Anand KJS. Neonatal research and the validity of informed consent obtained in the perinatal period. J Perinatol. 2004;24:409–15. doi:10.1038/sj.jp.7211142. Published online 20 May 2004.
Tait IR, Voepel-Lewis T, Malviya S, Philipson SJ. Improving the readability and processability of a pediatric informed consent document. Effects on parents' understanding. Arch Pediatr Adolesc Med. 2005;159(4):347–52.
Snowdon C, Brocklehurst P, Tasker R, Ward Platt M, Harvey S, Elbourne D. Death, bereavement and randomised controlled trials (BRACELET): a methodological study of policy and practice in neonatal and paediatric intensive care trials. Health Technol Assess. 2014;18(42):1–410.
Rich, WD and Katheria, AC. Waiver of consent in a trial intervention occurring at birth—how do parents feel? Frontiers in Pediatrics. 2017;5(6). doi:10.3389/fped.2017.00056 Published online 21 March 2017
Edwards AD et al. Effect of MRI on preterm infants and their families: a randomized trial with nested diagnostic and economic evaluation. Archives of Disease in Childhood 2017 in submission.
Corbin J, Strauss A. Basics of qualitative research. 3rd ed. Thousand Oaks: Sage; 2008.
Redshaw M, Harvey ME. Explanations and information-giving: clinician strategies used in talking to parents of preterm infants. BMC Pediatr. 2016;16:25.
Harvey ME, Redshaw M. Qualitative study of the clinician-parent interface in discussing prognosis following MRI and US imaging of preterm infants in the UK. BMJ Open. 2016;6(9):e011472. doi:10.1136/bmjopen-2016-011472.
Heaton J. Secondary analysis of qualitative data. In: Alasuutari P, Bickman, L and Brannen J, editors. The handbook of social research methods. London: Sage; 2009.
Tooher RL, Middleton PF, Crowther CA. A thematic analysis of factors influencing recruitment to maternal and perinatal trials. BMC Pregnancy Childbirth. 2008;8:36.
Wilman E, Megone C, Oliver S, Duley L, Gyte G, Wright JM. The ethical issues regarding consent to clinical trials with pre-term or sick neonates: a systematic review (framework synthesis) of the empirical research. Trials. 2015;16:502. doi:10.1186/s13063-015-0957-x.
Snowdon C, Garcia J, Elbourne D. Making sense of randomisation: responses of parents of critically ill babies to random allocation of treatment in a clinical trial. Soc Sci Med. 1997;45:1337–55.
Snowdon C, Garcia J, Elbourne D. 'It was a snap decision': parental and professional perspectives on the speed of decisions about participation in perinatal randomised controlled trials. Soc Sci Med. 2006;62(9):2279–90.
Eiser C, Eiser JR, Mayhew AG, et al. Parenting the premature infant: balancing vulnerability and quality of life. J Child Psychol Psychiatry. 2005;46:1169–77.
Henderson J, Carson C, Redshaw M. Impact of preterm birth on maternal well-being and women's perceptions of their baby: a population-based survey. BMJ Open. 2016;6:e012676. doi:10.1136/bmjopen-2016-012676.
Jollye S. An exploratory study to determine how parents decide whether to enrol their infants into neonatal clinical trials. J Neonatal Nurs. 2009;15(1):18–24. http://dx.doi.org/10.1016/j.jnn.2008.07.012.
Freer Y, McIntosh N, Teunisse S, Kanwaljeet JS, Anand MB, Boyle EM. More information, less understanding: a randomized study on consent issues in neonatal research. Pediatrics. 2009;123(5):1301–5.
Woolfall K, Frith L, Gamble C, Young B. How experience makes a difference: practitioners' views on the use of deferred consent in paediatric and neonatal emergency care trials. BMC Med Ethics. 2013;14:45. doi:10.1186/1472-6939-14-45.
Particular thanks are due to the parents and clinicians who participated in the study, the ePrime study collaborators: principle investigators: Denis Azzopardi, Mary Rutherford, Serena Counsell, Nigel Kennea, Merran Thompson and the ePrime team; trial manager: Nuria Gonzalez-Cinca; clinicians: Ash Ederies and Andrew Chew; research nurses: Laurelle Hughes-Carre, Naomi Hayward, Vana Wardley, Julia Wurie and Naima Ali.
This paper presents independent research funded by the National Institute for Health Research in the UK: RP-PG-0707-10154. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.
Centre for the Developing Brain, Division of Imaging and Biomedical Engineering, King's College, London, UK
Merryl Harvey
, Phumza Nongena
& David Edwards
National Perinatal Epidemiology Unit, Nuffield Department of Population Health, University of Oxford, Old Road, Oxford, OX3 7LF, UK
& Maggie Redshaw
Faculty of Health, Education and Life Sciences, Birmingham City University, Birmingham, UK
Department of Paediatrics, Walter Sisulu University, Cecelia Makiwane Hospital, Mdantsane, East London, South Africa
Phumza Nongena
Search for Merryl Harvey in:
Search for Phumza Nongena in:
Search for David Edwards in:
Search for Maggie Redshaw in:
DE, chief investigator, planned the overall programme of work and MR, principle investigator, planned the qualitative component. MR and MH planned and undertook this secondary analysis. MH and MR, with feedback from PN who was the clinical research fellow in the ePrime study and DE, drafted and revised the manuscript. All authors contributed to, and agreed, the final version. All authors read and approved the final manuscript.
Correspondence to Maggie Redshaw.
Approvals for the larger study programme of work, of which this study was part, were obtained from the Hammersmith, Queen Charlotte's and Chelsea Research Ethics Committee, number: 09/H0707/87. Written informed consent was obtained from parents following recruitment and affirmed at the scanning appointment.
Consent to publish de-identified data arising from interviews with parents and returned questionnaires was obtained on recruitment, reconfirmed prior to interview and taken as consent on questionnaire completion and return.
Neonatal trial
Preterm
Trial recruitment


Albion under-23 skipper Max Sanders.
Brighton & Hove Albion's under-23s will look to close the gap on Premier League 2 Division 1 leaders Everton to just one point when Derby County visit the People's Pension Stadium this evening, kick-off 7pm.
The Toffees are also in action tonight, against Liverpool at Anfield, but victory for the Seagulls over the Rams would stretch their unbeaten run in the league to six matches and strengthen their challenge for top spot.
After remaining unbeaten in the first six league matches of the season, Albion tasted their first defeat against tonight's opponents when they visited Loughborough University in October — Jacob Butterfield's goal sealed a 1-0 victory for the Rams.
Back-to-back wins over Tottenham Hotspur and Manchester City have kept the Seagulls one place above tonight's visitors, who have lost four of their last six matches, but most recently beat Leicester City 1-0 at the King Power Stadium.
Albion have enjoyed a 13-day break since their last outing in the Sussex Senior Cup, and Simon Rusk's side will be keen to continue their unbeaten record at the People's Pension Stadium this season.
Danny Cashman has fired winning goals in each of Albion's last two outings against Manchester City and Eastbourne Town, while fellow striker Bojan Radulovic netted twice against Spurs last month.
Season ticket holders can gain free admission at the turnstiles on presentation of their season cards, otherwise entry is priced at £5 for adults and £2 for concessions and under-16s.
Supporters not attending the game can follow a live text blog on the Match Centre, with a report and gallery to follow after the full-time whistle.
Albion celebrate Soufyan Ahannach's goal against Derby County.
Brighton & Hove Albion's under-23s extended their unbeaten league run to six matches with a hard-earned 2-1 victory over Derby County at the People's Pension Stadium this evening.
First-half goals from Bojan Radulovic and Soufyan Ahannach gave Simon Rusk's side a comfortable lead, and despite Cameron Cresswell's last-gasp penalty, Albion managed to hold on for maximum points.
The victory moved the Seagulls four points clear of the Rams, who occupy third spot, but Everton's 2-0 win at Liverpool kept a four-point gap between the Toffees and Rusk's side with four matches remaining.
Albion had to cope with some early pressure from the Rams, with numerous balls being delivered into Robert Sanchez's penalty area, but the visitors were unable to cause considerable damage.
Soufyan Ahannach then played his team-mates into trouble when his back-pass was intercepted by Cresswell, but after the striker rounded Sanchez and laid the ball back, the Albion winger recovered with a well-timed tackle.
Viktor Gyokeres created Albion's first opening after 22 minutes when his delicate pass picked out Jayson Molumby over the top of Derby's defence, but the Irishman could only find the side-netting with his angled effort.
Albion grew into the game and almost took the lead when Gyokeres latched onto a searching ball over the top, but with just Josh Barnes to beat, after opening his body to shoot, the Swede's curling effort was saved.
But Rusk's side found the reward for their early positivity, and it came after Barnes failed to claim a harmless Albion delivery into the penalty area, which left Radulovic the simple task of heading into an empty net.
It was fairly comfortable for Rusk's team towards the end of the half, with Sanchez making a routine stop from Cresswell's 25-yard free kick, and on the stroke of half-time the lead was doubled.
Alex Cochrane delivered an excellent cross from the left wing to find Ahannach inside the penalty area, and the Dutchman timed his run to perfection and glanced a header past Barnes to make it 2-0.
The teams returned for the second half and Gyokeres went in search of getting his name on the scoresheet, but the forward's powerful effort, after shifting the ball onto his left foot, swerved wide of the target from 20 yards.
Derby full-back Kellan Gordon then surged forward and broke into Albion's penalty area shortly before the hour mark, but Sanchez was equal to his effort, which fizzed towards the bottom corner of the Spaniard's goal.
The visitors continued to press for a deficit-halving goal, but Albion remained strong in defence, as Cochrane raced across and bravely threw his body in front of Ikechi Anya's ferocious shot.
Haydon Roberts could have extended Albion's lead late on when he arrived late in the penalty area to meet a loose ball, but the midfielder's side-footed effort sailed just wide of Barnes's left-hand upright.
Sanchez made an excellent reaction save from Alex Babos shortly before Cresswell gave the visitors hope from the penalty spot in stoppage time, but Albion saw out the remaining minutes to seal their third league victory in a row.
ALBION: Sanchez; A.Davies, O'Hora, Ostigard, Cochrane; J.Davies (Spong 62), Molumby, Roberts, Ahannach; Gyokeres, Radulovic (Longman 86).
Subs not used: Collings (GK), Moore, Ljubicic.


text:
Martin Kaye signals outsourcing is still in with new contract for e-know.net
e-know.net sees Lees into the Cloud
e-know.net closes City deal
Tags: new client win
Share on LinkedIn Share on Twitter Share on Facebook Email a link to this page Print this page
Managed services provider e-know.net has announced the signing and go-live of another law firm to add to its growing tally of legal sector clients. City of London-based commercial and property specialist Druces LLP has contracted for a five-year term, with e-know.net delivering its Managed Desktop solution, complete with SOS Connect, to some seventy staff.
The actual switchover took place over a single weekend, with staff arriving on Monday morning able to access the new system, supported by an on-site e-know.net team to help smooth the transition.
"The whole project has been a great success", commented Druce's IT manager Paul Davies. " Despite some challenging circumstances, we were up and running straightaway with no impact on productivity and we can now look forward to driving the business forward in the knowledge that we have enterprise-class IT in place.
Technology is a key driver within the firm but our previous IT outsourcing arrangement was not keeping pace with the demands of the organisation. We needed a partner whose strength and reliability would underpin our future growth and performance, and who could help us maintain our focus on legal service delivery rather than being distracted by on-going technical issues.
A scalable subscriber model from a provider with a proven track record in legal, who could support us 24/7, and was well versed in some of our key applications such as SOS and BigHand, that was the perfect fit. Add in e-know.net's manifest passion and commitment to what it does, and the decision to switch was very easily made."
Nigel Redwood, e-know.net's managing director, is delighted to welcome another law firm into the fold. "It's vital that we maintain and build our track record in the sector and another successful signing helps build our capabilities and our credentials. It also breeds confidence in other firms looking to make the same move – while Druces' original engagement with outsourcing didn't quite measure up, they still have faith in the concept and we have been able to demonstrate that consistent, quality IT provision is indeed available on a managed basis.'
CR:
Allowed HTML tags:

  <map> <area>

           <quote>

 <address>   <embed> <object> <param>

Bold & Italic
Allowed HTML tags:
To post your comment you must first sign in with one of the following...
Legal Secretary –...
Commensurate with experience...

redpajama_set_name: RedPajamaCommonCrawl


Marmaris is famous for its amazing views and wonderful coastline.We offer you to have a ride along the coastline of the city.Wlile staying on board the boat, our guests can swim in the sea, dive, sunbathe and listen to music, eat a delicios lunch and have a drink. Also we organise funny pastime for those who have a lot of energy. The trip gives you an apportinity to observe virgin nature and places without people.
Boat excursion includes all inclusive service. We pick you up from your hotel at about 9.30 in the morning, the excursion itself starts at 10.30, and the boat goes to various bays, grottos and visiting the village of Turunc and other sights.
Our Marmaris Boat trip is a pastime full of positive emotions. During the voyage we visit seven bays of Marmaris that are splendid. We appreciate the comfort of our guests and make breaks for a swim in very picturesque places. You get a perfect chance to dive and swim in the crystal water of very warm Mediterranean sea. The main purpose of this trip is to refresh you and to fulfill with life energy. For those who want to have a lot of fun we organise a great variety of entertainments. It can be competitions, dancing, games, riddles, puzzles and etc.
You don't have to worry about necessary facilities for diving or snorkeling, as we supply our guests with everithing. Even your lunch is included in the price. We will make you glad with our delicius barbecue and soft drinks. When we come to the shores of Turunc village you can visit a very colorful market. There are a lot of spices, fruit, souvenirs and etc.
But it is a must for you to have a camera. You will see lots of things to photograph great bays of Marmaris. Moreover, it is better to bring you sun protective cream.


text:
AT&T Broadband, Doug Krile, Equity Broadcasting, KGBC, KQUP, KSKN, Spokane, Television, The WB, TV, UPN
Viewers will miss UPN premieres
By Jim Kershner
It looks as if Inland Northwest TV watchers will be without their UPN for at least a few weeks.
The new UPN affiliate in the Inland Northwest, Equity Broadcasting's KBGC-24 in Pullman, will not have its transmitter up and running until the end of the year.
However, Equity said on Thursday that it's close to a deal with Spokane's main cable system, AT&T Broadband, to carry the UPN programs on cable before that. But it may take a few weeks to complete the arrangements.
"It won't be fast enough to avoid a little disruption," said Doug Krile, the Equity Broadcasting spokesman. "Realistically, it will be October sometime."
Meanwhile, viewers of "Enterprise," "Buffy the Vampire Slayer" and other popular UPN series will probably be out of luck unless AT&T Broadband can rush the new station into its lineup sooner than expected. The UPN season debuts in mid-September.
Also out of luck will be customers of the many smaller cable systems serving the Inland Northwest. Krile said Equity has not yet talked to any of them about carrying UPN this fall.
Viewers in Coeur d'Alene should be better off, since a low-power transmitter is already on the air (or will be within days) on channel 47. However, this signal won't carry much beyond the Coeur d'Alene area.
The entire problem should be solved by the end of the year when the KBGC transmitter is up and running in Pullman. The signal should cover a great deal of the Inland Northwest, and at that point, all area cable companies will be required to carry the station, too.
The new WB station
KSKN-22 was the region's UPN affiliate – until today.
Now, KSKN is changing its name to "Spokane's WB22" to reflect the fact that it has become the region's primary WB station.
WB shows will be carried in prime time in Spokane from now on. KSKN used to sandwich the WB programs around the UPN lineup.
It should be easier to find the WB's shows, which include "Gilmore Girls," "Smallville," "7th Heaven" and "Dawson's Creek."
KSKN will continue to carry its 10 p.m. newscast, using the people and resources of KREM-2. However, it has been renamed "The Ten @ 10 News on WB22."
From → KQUP, KSKN
KSKN-22 shows some 'Enterprise' « Spokane Television History
« Solutions coming for UPN
Secondary networks find homes »


text:
New to the TBR Pile (46) - January 2016
Freebie from Amazon.ca:
Kahayatle (Apocalypsis #1)
My name is Bryn Mathis. I'm seventeen years old, and I live in a neighborhood outside of Orlando, Florida. I'm here alone because my dad died almost a year ago, along with all the other adults in the world. I'm almost out of food, and the gangs of kids that roam around my town are getting more vicious by the day. It's time for me to leave and find another place to live... a place where I can find food and shelter... a place where they won't be able to find me. Alone, it might have been possible, but now I've got company. I'm worried that I don't have what it takes to get from here to my final destination, and I have no idea what might be waiting for me when I get there.
Reap (The Harvest Saga #1)
by Casey L. Bond
The remnants of the United States of America have been divided. From five enormous, technologically-advanced cities, the Greaters rule over the Lessers.
In the Lesser village of Orchard, things are not as perfect as Abby Kelley thinks they are. When the apple harvest draws near and the Greater's engineered fruits become too much for one village to handle alone, reinforcements from neighboring villages are called upon.
Having to choose between her best friend, whom she has no romantic feelings for, and mysterious newcomer Crew, Abby finds herself in the middle of a harvest that she had no intention of becoming a part of. She becomes involved in a situation that threatens the strict rule of the Greaters, and just might give the Lessers hope for a better tomorrow. But, can she help the Lessers without losing Crew? And if she chooses Crew, will she lose her best friend?
What's new to your TBR pile this month?
Did you get any books you're really looking forward to reading?
Mused upon and posted by La Coccinelle at 11:59 PM 4 comments:
Keywords: January, Kahayatle, New to the TBR Pile, Reap
Review - The Body Electric (DNF)
The Body Electric
by Beth Revis
Publisher: Scripturient Books
Reading level: NA
Book type: prose novel
Source: Amazon.ca
The future world is at peace.
Ella Shepherd has dedicated her life to using her unique gift--the ability to enter people's dreams and memories using technology developed by her mother--to help others relive their happy memories.
But not all is at it seems.
Ella starts seeing impossible things--images of her dead father, warnings of who she cannot trust. Her government recruits her to spy on a rebel group, using her ability to experience--and influence--the memories of traitors. But the leader of the rebels claims they used to be in love--even though Ella's never met him before in her life. Which can only mean one thing...
Someone's altered her memory.
Ella's gift is enough to overthrow a corrupt government or crush a growing rebel group. She is the key to stopping a war she didn't even know was happening. But if someone else has been inside Ella's head, she cannot trust her own memories, thoughts, or feelings.
So who can she trust?
How can a book with a cover so lovely be so bad? I don't know... but The Body Electric tried really hard to be my first dead-ladybug review of the year. Luckily for the book, I don't have much of a tolerance at the moment for books that make me want to throw them through the drywall. So this'll just have to be a plain ol' DNF.
At first, I was intrigued by the setting. The Body Electric is set in 23rd-century Malta, after some sort of (global?) conflict called the Secessionary War. Everything seems shiny and peaceful and wonderful, except for the fact that Ella's father is dead and her mother is dying. But there are clues that Ella's not really living in a utopian paradise; some aspects of her society are downright dystopian. Everybody's walking around filled with nanobots, despite the fact that it was discovered years earlier that too many can literally melt your brain; for some reason that Ella never explains, they're still used liberally in the population, as if they're as safe as water. After high school, kids are assigned to a year of service, whether it's interning (like Ella) or going into the military (like Ella's best friend, Akilah); there doesn't appear to be a choice, which makes Ella come off like a spoiled little twit when she judges someone else to be a loser for defecting from his military service, while she gets to go to her cushy intern job in her mother's spa.
Speaking of Ella, she's not a very interesting character. I know little about her, except that she's Mediterranean-looking and landed a pretty easy intern assignment. She's got a best friend who lives on the moon. Her father died in some sort of terrorist attack. Her mother's dying from Hebb's Disease, a new illness that's possibly due to some universal cancer vaccine that was developed at around the same time the disease showed up. She really dislikes androids, to the point where she thinks they shouldn't even have names (good luck trying to command a robot to do anything if it doesn't know you're talking to it). That's all fine and good. But who is Ella? I have no idea. Granted, I didn't get very far into the book... but I want to know the characters I'm going to be spending so much time with. After 33 pages, is that too much to ask?
The science is also rather silly, and much of it seems to be stuck in there just because the author thought it sounded cool. Unfortunately, much of it is glossed over and there's no real explanation for how these things actually work. Just saying they inject nanobots into everyone to cure everything from astigmatism to chicken pox doesn't really tell me anything. How do they work? What do they do? Why doesn't the body reject all those foreign objects floating around? The same thing goes for the reveries that Ella's mother sells at the spa. Ella says they're expensive to create. Why? She then goes on to say that a reverie is created with the combination of a drug, an electrical current, and a person's own memories. Why would that be expensive? I don't mind tech-speak in books (especially in science fiction), but if something is going to play an important role in the story (like the nanobots and the reveries), I want more explanation.
But my main issue with this book is continuity. You know that scene in The Wizard of Oz when Dorothy and her friends have arrived in the Emerald City and are riding in the carriage? Every time the scene changes, the horse pulling the carriage is a different colour. That's what I felt I was reading here. Ella contradicts herself over and over again, nullifying or altering what she just said a few paragraphs earlier. She talks about noticing -- for the first time -- the empty space on her father's memorial plaque when she visits the groveyard (no, that's not a typo... that's what she calls it), despite the fact that she was the one who made all the funeral arrangements. Then the plaque (which usually denotes something made of metal) is suddenly a stone marker. As she fights off an attacker in the park, she bashes him in the nose and splits his lip... and then comments on the bruise on his cheek. It was as if the author couldn't remember from one moment to the next what she'd already written... and while this is a book about memories, I sort of doubt that all of these things were intentional.
So, in the final analysis, the reasons why I didn't finish The Body Electric are as follows:
weak writing
cardboard main character
silly science
continuity issues
Keywords: Beth Revis, DNF, dystopian, Malta, new adult, review, science fiction, The Body Electric


Headtorches are amazing, although I think I'm using mine in a strange way. It's still attached to my head, but I'm using it to do the gardening. At this time of year it is really difficult to find the daylight to carry out some tasks. I leave the cottage in darkness, and I return in darkness. Although, this morning I found my journey partially lit by a setting moon. The moonset has been a feature of our mornings for the last three days. I first caught it resting on the edge of the horizon on Monday as I got out of bed. As we darted about getting washed and dressed, I called the lovely Sharon to the window, "come here and see this". She sighed, "really? I don't have time for this." Then when she arrived at the window the moon cast its spell and she paused, rested her head on my shoulder, and we watched for a minute or two. It's too easy to let these moments slip by.
By the time I arrived home today the moon was a bold feature again. Under this Celtic 'Dark Moon' I slipped on my headtorch, grabbed a spade and pickaxe, and headed out into the garden to dig a trench. I need to put in sixty feet of hedge and apparently the winter is the best time to plant them. In the summer I toyed with the idea of planting this hedge but suspected that it was a dream due to the expense of buying the trees. After a little research I stumbled upon conservation ni where I could get sixty trees for a total cost of thirty pounds! They only sell local species, but this was exactly what I want anyway. I hope to plant sixty trees which are a mixture of hawthorn, blackthorn and dog rose. With the order in I have only a short time to prepare the ground.
Under the moon I wondered how ridiculous I must have seemed if any neighbours caught sight of my headtorch bobbing about. I imagine that it is suspicious to be digging holes at night and under a full moon. And, in truth, it was only a few days ago that I buried a dead body in the back garden.
I tried a little cheating today. Is it possible to make sourdough without the epic wait for a culture of wild yeast? I tried a little experiment to discover/eliminate one option.
The recipe above omits the 15g of yeast I added at the start, a vital ingredient. It grew overnight and then spent the day in a cold garage. The theory is that the yeast slowed down but the bacteria that is found naturally carried on and added some sour flavours. After a little rewarming in the house the yeast began to bubble again and the bread was made.
It's cooling now and the cottage certainly smells like sourdough, but it's late. The tasting will have to wait until the morning.
So there I was reading the little man his bedtime book. We delved into the realms of story and make believe, a world with morals and lessons around every corner. This particular story (spoiler alert) was about a tiger who did not want to go to bed. His mother decided to let him learn his lesson and told him he could stay up all night. He went searching for his friends, the lion, hippo, elephant etc. only to find them all in various stages of bedtime preparation. Eventually he wandered back home exhausted and regretting not going to bed. This was a nice little story which was spoiled by the visit to the elephants.
I know there is something wrong with me, but seeing the moon like that upset me so much. It could not be unseen. With the setting sun on the right the moon should be a crescent facing the other way around as it is lit up by the sun. The same realisation happens when I see actors drinking from empty cups.
It ruined it for me. I know it shouldn't upset me, but it does.
There are some unexpected aspects of pregnancy that you don't read about in books. One of these is the ratchet effect. This is a consequence of having a large bump and having to sleep on the left side of your body. For many nights now I have observed the ratchet effect in the lovely Sharon. She lies on her left side until she feels uncomfortable. Then she turns onto her back momentarily before turning back onto her left side. When this happens the bump takes the bedsheets with it. When this repeats itself over and over in the night it leaves me with the edge of the sheets feeling cold. For some reason I just let it happen and i'm not sure why. It could be that it forces me closer to her so that I can bury my nose in her hair. The tickly-ness of her hair is worth enduring for the lovely smell. Or it could be because I am scared of waking her and facing the anger of the ratchet.
On Thursday morning I stepped out to carry out the morning chores and no-one stepped out of the garage to meet me. The greeting of our black cat crying for breakfast is as constant as the sun and moon. On Thursday she was not to be seen, in my heart I already knew something was wrong.
On thursday evening she was missing again and in the winter darkness I went hunting for her.
I dug a hole under one of the apple trees. I choose a young tree so as not to disturb mature roots and also, although the thought disturbed me, to give a boost of growth to the growing tree. My pragmatism disturbed me.
She was gone. She slipped away from us in her sleep. From her pose it was not a cold curled sleep. It was not a sleep of illness or pain. It was a relaxed and deep comfortable sleep. As I looked at her in her cosy bed I kept expecting, wished for, her body to rise and fall and let out her usual deep snore.
Tille was a wonderful little cat. She was always at my heels in the morning and evening as I pottered around the cottage. When we walked down the lane she would always follow in all kinds of weather. On a few occasions she even followed us to our neighbours and waited obediently outside their door, more dog-like than cat. She loved scratches under her chin, her fur was always soft, and when I put my nose to her forehead she always smelled beautifully of grass and warm earth.
I had to lift her and I hesitated. This was our dearest pet. She was gone and what was left was only death. I hesitated and did not want to touch death. With these hands I had taken life, the life of our livestock, but in that moment I was afraid of death, as if death was something contagious. I lifted her, and although I knew this was an empty shell, I caught myself appologising to her. I caught myself crying and saying, "I'm sorry girl". I set her underneath the apple tree. She still held her sleeping pose and this was not lost on me, this eternal sleeping.
They say pets teach children about many things including death. I'm not naive enough to think that it is only our children they teach.
I can't remember anything about Thursday morning apart from her absence and a small part of me preparing myself for the possibility. The evening was different. I remember it all in detail. In that waukrife moment I remember the dark, the moon hanging over us, the bare branches around us, the woodsmoke in the air, and the cold clotted soil piled up. I remember the feeling of loss and I remember her sleeping deep in the earth.
Somewhere in the middle of the night a sound split my sleep. The rattle of sprung chicken wire and claws on wood meant only one thing; the fox. After the crashing of wire there was a few frustrated whines that sounded half dog wuff and half cat meow. I lay awake for a while and listened to the winter night. The sound I expected was silence, the sound I feared was the possibility of chickens being eaten in their sleep. There was only silence.
One of my students brought a fox with him on his journey to school the other day. His own chickens were being menaced. He purchased a fox trap and happened to catch it without bait after the chickens had pottered in and out of it all day, leaving only their scent, enough for a famished fox. Just before arriving to school he released it far from its home, far from the menaced flock.
The cold will be stirring up a hunger in all the creatures on these long nights. The birds strip our feeders daily. If there is a shred of light left by the time I arrive home from work I try, in vain, to identify some of them. I have an identification chart opportunistically left by the window as I am poor at twitching, apart from crows. For some unfathomable reason I know the species of crows, the corvids, and can name them all from a distance. I once felt like a bit of a freak when I met a friend of a friend and I happened to have my nose deep in a book about the fine details and habits of ravens. He was an avid twitcher and mistook me for one of his kind. I didn't really know how to explain that I didn't know a sparrow from a finch, unless it was black and had eyes that burn with wild intelligence. Even if a crow did want to visit the bird feeders, then it would be uncharacteristic and futile. If there is a thin fade of light when I arrive home all I usually see is three empty feeders hanging pathetically, stripped bare like fish skeletons after a piranha attack.
If the foxes are driven by the same hunger as the finches and sparrows, or whatever they are, then they have a high fence to vault over. I have also started up the winter habit of locking the chickens into their shed. This is to kill two birds with one stone, a poor choice of words. It is to give them added protection and to keep out the cold night air. This sounds lovely and caring until I reveal that I am only human and love to be lazy. At the weekends I cannot face getting up to let them out before dawn. At the weekends they have an open hatch, a cold night, and the clawings of predators on the fence.


Superb property, built in 2002, finished in Donegal quartz complemented with natural stone lintels & cills, sitting on a mature elevated ½ acre site, comprising fully landscaped gardens to front side and rear located in the outskirts of Eglinton village with panoramic views of Lough Foyle.
Property has large open plan kitchen and family room with vaulted ceiling, wood burning stove in family room and double doors leading to west facing decking and paved patio areas. German designed & built kitchen with oil fired Rayburn & large central island (integrated elevated BOSCH dishwasher), 5 ring gas hob and fan electric oven. Underfloor heating to kitchen and living areas. Spacious tiled utility room with separate large walk-in storeroom. Back door (split door) with covered external porch area.
Arched solid front door with 5 point locking system (exterior half round sandstone steps) opening onto large hall with bespoke staircase. Living room with cream overmantle and Georgian basket with gas fire, Brintons carpet & bay window. Family bathroom, modern free standing double ended bath with wall mounted taps, spacious wet area shower and glass panel, free standing twin sinks on contemporary units. Ground floor - Bedrooms 1 & 2, both double bedrooms with large integrated wardrobes, shelved & railed. Cloakroom/ hotpress with hotwater tank & central heating controls.
First floor landing carpeted. Bedroom 3, large, bright airy room with twin velux windows. Bedroom 4 – large master bedroom with triple velux windows. Ensuite with glass sink and wall length high gloss fitted units. Walk-in dressing room fully fitted with bespoke shelving and cupboard areas.
Washed gravel driveway to side and rear of property with extensive parking area to the rear & with natural stone cobbled area to front of house. Detached large double garage with 2 roller doors and side entrance, & vacuum beam system. Upstairs of garage accessed via an external staircase – suitable for office space or additional storage. Gated dog pen. Woodstore with roller door. Concreted car wash area.
Stone wall & steps to orchard area and vegetable patch to the rear. Side and front gardens landscaped and boundaried by mature native and copper beech hedging.
A much sought after property like this rarely comes on the market. Viewing highly recommend to appreciate it.


Google is set to announce its plans for the upcoming Google Nexus One phone in an Android press gathering to be held at its Headquarters in Mountain View, California. Engadget has grabbed a screenshot of what looks like an invitational card for the said event. This is what it reads.
Nexus One surely is going to be the highlight of the event. For those of you don't know, Nexus One is the name of the Google phone which has been designed by the folks at Google, and the hardware is manufactured in partnership with HTC. It will be powered by the latest version of Android OS and will be sold online by Google, fully unlocked so that you can use it with any carrier you like.


When you use email promoting to suit a customer's needs of each type of person your message comes across more clear. This article will go over the various ways to create emails that appeal to all types of consumers.
Do not ever send emails with an obnoxious "Buy now!" approach. They are aware that you would like them to purchase your items, so it would be best if you built a solid, professional relationship with them before encouraging them to buy anything. Your customers will find this refreshing and be more apt to make purchases from your company.
Use lots of different resources to learn everything that you possibly can about marketing through emails. You may find books in libraries and on the web. You may also be able to find local workshop or workshops to attend; pay attention to the classifieds and bulletin boards.
Test variations of your subject line by using A/B testing. This can help you to determine which subject lines are successful and which ones are simply ignored.
Try different email formats until you find what works best for you and your email. Always try to place the most essential information and new offers on the top of your emails. You must try different types of formats and determine which gives you lots of response. Once you find what works, stick with it. This can help your customers will know what they are getting from your emails and where to find information they need.
If you fail to do this, people will not trust you and you will build a bad reputation. Some ISPs may even consider blacklisting you, ensuring that your marketing campaigns fail and your profits diminish.
Look at some of the spam to learn what to avoid looking like it. Get a free email address, post this address all over the Internet, and it won't be long before your inbox is jammed with spam.Learn from the wrong things these emails do and adjust your email that look as professional as possible. Taking measures to keep you from spammers will boost the credibility of your brand's credibility.
Use passive and active feedback to improve your email marketing efforts. Active feedback is obvious: ask visitors for suggestions and opinions from your subscribers. Passive feedback may not seen by the readers. You can utilize any tools and other software you have available to determine what links are getting clicked on the most clicks.
Give your customers some type of incentive in your email message.They are more interest in doing business with you when they are given an advantage to it. For instance, advertise a discount, you could offer them free shipping on orders over $50.
Do not send out emails that rely on images to get critical information across. A lot of email clients do not display images automatically. Your messages may look strange or be impossible for some people to read if the information depends too much on graphics. Always put your most important information into clear text, and use descriptive alt tags for any images that you do use.
Change up the format of your emails from time to time. If you typically send out marketing via email messages composed in HTML, try sending messages written in text format on occasion.
As you now know, there are many ways that you can make your e-mail marketing methods more successful. When you cater to your customers' various needs, your message will be delivered in the best way possible. Use the tips that you read in this article to communicate effectively with your customers.


text:
Skill differences (comparison of chess and go)
Thread: Skill differences (comparison of chess and go)
CC Candidate Master
Some of the questions I hear about board games kinda make me laugh, as well as the statements. One, from a rabid asiophile and big fan of go, was "go is more skillful than chess", after which I challenged him to a game of chess and he declined. Also I told him about chess' origins being Indian and therefore asian, just to mess with him a little.
But I find it interesting when people ask (or say) which game is harder, more skillful, whatever. I don't think most people realise what they're asking. I mean, first of all, a game itself can't be skillful. Second of all, what definition of harder are you going for? Requires more effort/time? In an even game, both chess and go should take equal time and effort from both players, so that's not it. Harder to learn? Both games have comparatively simple rules, though chess' in this case would have to be harder, but I don't think that's what they're asking. More prone to failure? Failure at chess is extremely contingent on the skill relative to you of your opponent.
I think the only real way to give any answer at all to the question is to frame the question as "which game makes it such that the smallest increase in skill results in one player having a reliable advantage against the other" or something like that. Now obviously skill is only measured in relative terms, so the "smallest increase in skill" has to be determined in a different way, most likely through analysis of rankings and ratings.
The way I'd do it is something like this: look up results for when players of a game ranked about #10 play players ranked about #100, and see what kind of elo point difference that would imply. do the same for #100 and #1000, and if world rankings still allow, #1000 and #10000. Then, to approximate players ranked about #100,000, you're probably looking for club champions etc., then for 1,000,000, maybe active competitive players etc.
Now, if multiplying the ranking by a factor of 10 results in a higher implied elo difference for one game than another, I think that game would have at least some claim to being the "more skillful game" or something like that, there are probably better words for it. I wonder though, I think checkers could possibly pip both, considering that the top player went decades with fewer than 10 defeats. How about sporting pursuits? Rarely do you see Federer or Nadal lose to someone not ranked in the top 20, but it certainly does happen.
Avatar is a game I played at a party and finished by castling queenside for checkmate, and has a pleasing degree of symmetry.
A very interesting topic for discussion!
I think rules and their application must also be taken under consideration in deciding the complexity, depth, skills required for a game/sport.
Luck (or dearth of it) is another factor as well as the physical, mental, psychological condition of players involved!
Upsets in mental sports as in Chess are very frequent and in the highest level!
BTW and in passing, could Fischer vs Spasky (1972) and Kramnik vs Kasparov (2000) World Championship results be considered as upsets?
ACF 3118316
FIDE 3201457
https://aus2020.chesschamp.net/
In defense of Capitalism.
Money is the cause of all evil!
Lack of money is the cause of all evil!
Fischer's win was perhaps an upset in terms of psychology, since he'd never beaten him before, but I think most people realised that Fischer had been the best chessplayer around for about a decade, and if he ever got a chance to play at his full capacity for a WC and got over his own hoodoos, he'd have a good a chance as anyone. Just think about him destroying Taimanov and Larsen 6-0 and destroying Petrosian too. Kramnik's was a genuine upset. Euwe was another, Khalifman another, they happen.
Upsets are going to still happen though, you can't control everything, and people will play better than usual some times, worse other times. The only thing I'm worried about in this context is how much skill difference is needed before other factors become almost impossibly unlikely to change the outcome.
pappubahry
The problem with making these sorts of cross-sport/game comparisons is that there are two things that are changing:
- the structure of the game (this is what you're interested in studying)
- the number of people who play the game/sport
To elaborate on the second point, suppose someone wanted to answer your questions, but instead of chess and go, he compares the Australian sport of chess and the Russian sport of Шахматы.
They would see that in chess, the best player is Zhao, and he has about a 500-point Elo gap to the 50th best player. But the best Шахматы player is Jakovenko, and he's only about 200 points clear of the 50th best player. You can't conclude that the top tier of Australian chess is more skilful than Russia's....
It should be possible to properly control for differences in participation rates, but I'm not sure off the top of my head how you'd go about doing so.
Originally Posted by Schu
Kramnik's was a genuine upset. Euwe was another, Khalifman another, they happen.
Kramnik did have a very good record against Kasparov specifically and it was one of the rare cases where head-to-head scores would have been a better predictive tool than ratings. (I recall Sonas listing Kasparov-Kramnik as one of only five established player pairings for which this was demonstrably true though I do not recall how he derived that.)
Most wins of the FIDE knockout pseudo-World Championships were upset winners - Khalifman, Ponomariov and Kasimdzhanov were all nowhere near being the strongest players in the events they won. Only Anand was an expected winner. The short-match format with fast tiebreakers made it highly unlikely that the best player would actually win.
I wonder though, I think checkers could possibly pip both, considering that the top player went decades with fewer than 10 defeats.
That is probably simply because checkers is more drawish when played at top level than chess; it is easier to avoid defeat.
Determining how to compare skill factors between different games seems very challenging to me. One issue is straining out the influence of luck. In a game that contains a strong chance element even great differences in skill will not necessarily result in a reliable victory for the superior player. But it may still be the case that massive differences in skill exist. I previously mentioned the Monopoly club I used to be involved in at the Uni, in which I ran a rating system and found that win rates by player in games with an average of about five players could be as low as 5% or as high as 40%, over very large numbers of games.
Another issue, related to chance, is the influence of sample size. Is a game of chess really comparable to a five-set match of tennis in terms of the extent to which the result will reflect a skill difference should one exist? Or is a game of chess more comparable to one set, or to a three-match series? Suppose you rated tennis on a similar system to ELO, the ratings would be closer together if you did the ratings set by set than if you did them match by match.
Sports with "granular" scoring systems also mess with the idea that a great difference in skill leads to a reliable victory. In soccer one team will sometimes win the match with a goal scored against the run of play, converting 1 of its 2 serious opportunities while the other team converts say 0 of 5. But that doesn't mean there is less skill in the game than in, say, Aussie Rules; what it means is that the disconnect between the skill and the scoreboard might be greater. Chess is a bit like this too because in a game between two good players of slightly different strengths, the most likely result is a draw.
Originally Posted by pappubahry
I'm sure there are ways. You could work out where players lie on a percentile score of all chess players that at the very least play club chess, or something like that. I'm no statistician though, so I wouldn't know how to go about that exactly.
Originally Posted by Kevin Bonham
Well since checkers is solved as a draw, that is not so surprising. Clearly in checkers it is extremely diffucult to lose to someone that's worse than you, but the question remains how much advantage is required to overcome checkers demonstrated drawishness and get a win.
That would tell you how skillful a chessplayer is at chess against other chessplayers but not sure what inferences could be drawn compared to other games.
One could infer that if, by comparing game x and game y, x players come out as having results such that smaller degrees of skill difference (measured in possibly many different ways: percentile, standard deviation etc.) result in, say, 80% results, then that game is "more skillful" in the sense that this topic is concerned with.
But is skill just the probablity to win? Let me put this to you:
Let's say that to get from the level of beginner to master of a given game there is a number of "units of skill" that need to be attained. These units might be nuances, patterns, strategies, tactics etc whatever you want to call them depending on the given game, but let's just give them a number for simplicity.
The number of these units varies game to game. So for example game A might have 100 units and game B might have 1000.
A master in each game might have that 80% edge you mention, but how is your system going to report on the 100 vs 1000 thing?
The other point I was thinking of was that maybe in game A those 100 units of mastery might only yield a 10% advantage whereas in game B those 1000 units might yield 80% (or vice versa) but maybe that would be caught by the different measures you mention.
I'm not really sure why you bring units into it. Having more elements to a game doesn't neccesarily make it more skillful. I don't think the amount of elements in a game makes a difference to what I say, and that is how I'm interpreting your "units", correct me if I'm wrong there. You can't really measure skill with these units, because people will not have entire mastry of each of elements. The only way you can measure skill is by results.
All that my idea is trying to measure is how much of a skill difference (measured in percentiles, standard deviations, whatever system is appropriate at the time) transfers to what kind of advantage in terms of average results, and my assertion is that the game that has the least amount of skill difference required for a certain named advantage, this game is the "most skillful", or at least the one where the elements affecting the result other than skill have the lease influence.
I agree that this would be fairly problematic. There must be some statistical method for scaling to compensate for drawishness. I suppose a simple way would be to force all games to replay draws until a result is achieved.
CC FIDE Master
I remember seeing some sort of comparison between chess skill and go skill once (30 seconds of googling failed to find it, sorry).
The method used there was to start with the best player in the world. Find somebody he scores 75% against. Then, find somebody who player B scores 75% against, etc, until you get reach the level of a complete beginner. Count the number of steps.
I think 200 rating point advantage means you expect to score 75%? Then in chess we would take about 15 steps to go from the world champion to a complete beginner. If I remember correctly, there were significantly more steps in Go than there were in chess.
Leave the gun. Take the cannoli.
I'm not really sure why you bring units into it.
To make it easier to compare different games. So maybe Lucena position in chess is a skill. Maybe you want to assign that 1 unit of skill. Maybe in Go there is a skill that requires similar knowledge/experience/aptitude and you also want to assign that to be 1 unit. Then you add up all the skills in each game and you get the totals.
Not sure if that is what you meant by "elements" or not.
That's what I understood it to be. But I don't really get the applicability to this topic, if only because you can't quantify chess like that, you can accumulate skills like that but it won't represent your actual skill (though there will be some correlation of course). You can only judge a person's skill by results.
Hobbes: that's roughly what I'm thinking about, yeah, though I think getting the top player isn't that good idea, he might be an outlier. Thanks for your recollection 200 difference in elo gives 75.974% results, so close enough
Quick Navigation Games Australia Top
Good books for social players
By Kevin Bonham in forum Coaching Clinic
Stinginess of Chess Players
By Paul S in forum Australian Chess
Mt Buller - Chess World letter to ACF
By ChessGuru in forum Mt Buller Chess
By chesslover in forum Australian Chess


Luxo L-1 The Original - Newly redesigned to be more energy-efficient. The worlds original architect lamp designed in 1937 by Luxo. Unique design, ingenious lighting properties and a flexible spring-balanced arm have earned L-1 a place among the world?s all time classics.


text:
AITE Edge
The Student News Site of AITE High School
Axel Webber: From Rejected Actor to Newly Signed Model?
Xiomara Suscal|February 28, 2022
Famous TikToker Axel Webber has been on quite the journey over the past year. Webber is well-known on TikTok for his comedic videos about his impoverished lifestyle. He lives in a small apartment in Manhattan and has become relatively famous because of it. His videos involve him documenting what he does in his day-to-day life.
As a result of his growing fame on TikTok, he was invited to talk on the Kelly Clarkson Show where he stated that he pays $1,200 monthly for his small apartment. His dream was to get into Juilliard, and he expressed that acting is his passion. "I can be anywhere and I can be anything," he said, and explained how he came from his job in Michigan to his new life in New York.
He later made a video documenting his audition to get into Juilliard and expressed his feelings of nervousness and feelings of doubts about the audition. His comments were filled with fans consoling him with kind words and encouragement. His next video involved him talking about his rejection. Again, his comments were filled with sympathy and enraged fans claiming he deserves a spot in the school. A few days later he made a video sharing his news about a new modeling contract that was offered to him by The Society.
As a result of his growing fame, Webber gained suspicion for his online persona on TikTok. Many have started to question if he was lying about being impoverished and have even started to suspect him of being an industry plant. Industry plants are people who gain fame easily due to their secret help of professionals and coordinated effort in the professional industry. The 22-year-old had no acting experience prior to the audition and seems to have come from a well-off middle-class family. He's received some scrutiny due to the fact that he pays $1,200 for a 95 square foot apartment while others pay the same amount for more standard-size apartments.
Despite all the criticism, scrutiny, and the theory of him being an industry plant, he continues to make videos and share his life while gaining more popularity and being offered many great opportunities. "I had zero connections when I got here. I just started making TikTok's" said Webber.
Axel Webber
The Star Wars Celebration of 2022
Fans Devastated After Doja Cat Cancels Tour Dates to Recover from Throat Surgery
'Turning Red' Review: The Groundbreaking Red-Furred Monster
Marvel's Eternals Has Its Ups and Downs
Marvel Should Get More Oscar Nominations
Tick Tick Boom Movie Review
Don't Miss Spider Man No Way Home
Red (Taylor's Version) is Not Nothing New
Trading for Dummies
Dune 1984 Compared To Dune 2021
All AITE Edge Picks Reader Picks Sort: Newest


Coaching each other to success in a fast-paced business.
The Precision Organisation network of brand ambassadors has access to a shared workspace that drives both client growth and professional achievement.
The Holiday Gala Was an Amazing Success!
PRESS RELEASE: Precision Organisation Expands Learning Opportunities to U.S.


All pre-shoot and trial bookings are to be done ONLY at My Style My Way Studio.
NOTE: There MUST be four or more people booking for touch up in the same bridal party for the above price to apply.
PLEASE NOTE: Traveling fee will apply for second time visit to the required location for touch up.
Traveling fee apply depending on your location.
Traveling fee will apply again if client requires touch up.
Clients must pay for parking if needed.
We do not have surcharge for public holiday or early morning start.
ALL BOOKINGS REQUIRES A DEPOSIT OF 30% OF THE TOTAL AMOUNT AND IT IS NON REFUNDABLE UNDER ANY CIRCUMSTANCES.