Child development and quality of parenting in lesbian families: no psychosocial indications for a-priori withholding of infertility treatment. A systematic review

Among fertility centres, much discussion focuses on whether to withhold infertility treatment from special patient groups (lesbians, prospective single parent(s), prospective parent(s) of relatively advanced age, or with severe diseases) because it is assumed that this is in the best interest of the child. The present study aimed to establish whether there is any empirical evidence for this assumption. A literature search was made in PubMed/Medline and PsycINFO to identify studies that had assessed psychological outcomes of children and quality of parenting after infertility treatment. Eight studies met the following inclusion criteria: published in an English-language peer-reviewed journal between 1978 and 2002, and focused on psychosocial child development and quality of parenting after infer

The development of the DISCO-RC for measuring children's discomfort during research procedures

Background: There is a need for data on children's self-reported discomfort in clinical research, helping ethics committees to make their evaluation of discomfort described in study protocols evidence-based. Since there is no appropriate instrument to measure children's discomfort during medical research procedures, we aimed to develop a generic, short and child-friendly instrument: the DISCO-RC questionnaire (DISCOmfort in Research with Children). Methods: This article describes the six steps of the development of the DISCO-RC. First, we updated a literature search on children's self-reported discomfort in clinical research to get insight in what words are used to measure discomfort (step 1). Subsequently, we interviewed 46 children (6-18years) participating in research to get insight into important forms of discomfort for children (step 2), and asked them about their preferred response option for measuring discomfort (step 3). Next, we consulted nine paediatric research professionals from various backgrounds for input on the content and feasibility of the DISCO-RC (step 4). Based on the previous steps, we developed a draft version of the DISCO-RC, which we discussed with the professionals. The DISCO-RC was then pretested in 25 children to ensure face-validity from the child's perspective and feasibility (step 5). Finally, validity, reliability and internal consistency were tested (step 6). Results: The search-update revealed several words used for measuring discomfort in research (e.g. 'worries', 'unpleasantness'). The interviews gave insight into important forms of discomfort for children in research (e.g. 'pain', 'boredom'). Children preferred a 5-point Likert scale as response option for the DISCO-RC. The experts recommended a short, digital instrument involving different forms of discomfort, and measuring discomfort of individual research procedures. Pretesting of the DISCO-RC resulted in a few layout changes, and feedback from the children confirmed the feasibility of the DISCO-RC. Convergent validity and test-retest reliability were acceptable. Internal consistency based on item-rest correlations and Cronbach's alpha were low, as expected. Conclusions: The DISCO-RC is a generic, practical and psychometrically sound instrument for measuring children's discomfort during research procedures. It contributes to make the evaluation of discomfort in paediatric research evidence-based. Therefore, we recommend including the DISCO-RC as standard component of paediatric research studies

Shortening the State-Trait Anxiety Inventory

Abstract Questionnaires that are used in studies with severely ill patients should be as short as possible. Abridged versions of existing inventories are very practical in these instances. The answers of 444 subjects in three samples (cancer patients, medical students, surgical patients) were used to investigate the possibility of constructing short and reliable versions of the scales of the State and Trait Anxiety Inventory. A stepwise regression procedure showed the possibility to reliably predict the total score of the unabridged versions by means of weighted sums of eight items for each scale. Omission of weights did not lead to substantial loss of information. Cronbach's α of the State-scale decreased from 0.93 to about 0.85 for different combinations of items and from 0.91 to about 0.82 for combinations of eight items of the Trait-scale. The relationship between both scales was only slightly modified by the shortening procedure

De Behoefte aan Psychosociale Steun bij Deelnemers aan het Nederlandse Cross-over Transplantatie Programma

Final technical report of the project.The Dutch kidney exchange donation program started in January 2004. A literature review has shown that several factors of the exchange program could influence the psychological well being of participants, such as the loss of the possibility of a “medical excuse” for unwilling donors and the issue of anonymity. However, these factors have not been the subject of empirical study yet. We therefore studied these factors to determine whether additional psychosocial support is necessary for donors and recipients in the Dutch kidney exchange program. We used structured interviews for all 48 donors and recipients that had undergone exchange donation/ transplantation in 2004. A psychologist interviewed the participants before and 3 months after transplantation. We included a comparison group of 48 donors and recipients participating in the regular living kidney donation program. Donors did not experience additional pressure to donate due to the exchange donation. Most participants preferred anonymity between the couples. We found few needs for additional emotional support. In this respect the exchange group did not differ from the comparison group. We conclude that the psychosocial support offered to exchange couples can be comparable to the support normally offered to participants in the regular living kidney donation program

Living Kidney Donation: Psychological and Ethical Aspects

DOELSTELLING Nierdonatie bij leven levert medisch en maatschappelijk gezien veel voordelen op, maar toch willen of kunnen niet alle nierpatiënten op de wachtlijst en/of hun naasten zich opgeven voor het nierdonatie bij leven programma. De doelstelling van het project ‘Nierdonatie bij leven: psychologische en ethische aspecten’ is het verkrijgen van meer inzicht in de kennis en acceptatie van nierdonatie bij leven. Het gaat hierbij om kennis en acceptatie onder proefpersonen die daadwerkelijk in aanmerking komen voor nierdonatie/ transplantatie bij leven, dat wil zeggen (1) patiënten met eindfase nierfalen op de wachtlijst voor een niertransplantatie en (2) de mensen uit hun omgeving; de potentiële donoren. Het benaderen van deze groepen is de strategie om uit te vinden of, en onder welke voorwaarden, uitbreiding van het nierdonatie bij leven programma praktisch haalbaar en ethisch verdedigbaar is. VRAAGSTELLINGEN Het project omvat twee vraagstellingen. De eerste vraagstelling is: wat zijn de psychologische barrières voor nierdonatie bij leven voor patiënten op de wachtlijst, en de mensen uit hun omgeving? De tweede vraagstelling luidt: wat zijn de morele argumenten om de patiënt en de mensen uit de omgeving van de patiënt (de potentiële donoren) al dan niet actief te benaderen over nierdonatie bij leven? In andere woorden; in hoeverre zijn interventies ethisch verdedigbaar? OPZET PATIËNTEN EN (POTENTIËLE) DONOREN Wij hebben allereerst de groep patiënten die op de wachtlijst voor niertransplantatie staat benaderd (regio Erasmus MC). Aan de patiënt vragen wij toestemming om ook de potentiële donoren uit zijn of haar omgeving te benaderen. Indien beiden hiermee instemmen, vindt het interview met deze potentiële donor plaats. Voor deze studie hebben we tevens een controlegroep benaderd. In de controlegroep zitten patiënten en donoren die nog geen familietransplantatie hebben ondergaan, maar die wel al hebben besloten door te gaan met de donatie bij leven procedure en dit met hun artsen hebben overlegd. INTERVIEW Alle deelnemers aan ons onderzoek zijn geïnterviewd middels een semi-gestructureerd interview. Voorafgaand onderzoek heeft aangetoond dat een aantal factoren een rol kan spelen bij het niet kunnen of willen ondergaan van nierdonatie bij leven. Deze factoren komen terug in de interviews: · Demografische en medische variabelen · Kennis en informatie · Standpunten en argumenten ten aanzien van nierdonatie bij leven, · Communicatie met de arts en de omgeving · Risicoperceptie · Verwachtingen ten aanzien van de gevolgen voor de persoonlijke relatie tussen donor en ontvanger. ETHISCHE ANALYSE De resultaten van de empirische gedeelte van deze studie dienen als basis voor de ethische analyse. Argumenten zoals gevonden in het empirische gedeelte van de studie worden getoetst op houdbaarheid met behulp van ethische theorieën over de structuur van argumenten.,Wij hebben met name gebruik gemaakt van de theorien zoals die geformuleerd zijn door Toulmin, Rawls en Nagel. BEREIKTE RESULTATEN/NIEUWE INZICHTEN De bereidheid om een nier van iemand in de naaste omgeving te accepteren is zeer hoog voor de patiënten in de onderzoeksgroep: slecht 19% is negatief over donatie bij leven. Het is dus niet zo dat de patiënt in het algemeen niet zou willen. Voor een aantal variabelen vonden we verschillen tussen de onderzoeksgroep en de controlegroep. Een opvallende uitkomst is dat in vrijwel àlle gevallen in de controle groep de communicatie over de donatie gestart wordt vanuit de donor: het al dan niet aangeboden krijgen van een nier lijkt bepalend voor het doorgaan van de (levende donor) transplantatie. Patiënten vinden het erg moeilijk om uit zichzelf over het onderwerp te beginnen. Ethische analyse laat zien dat de argumenten en bezwaren tegen nierdonatie bij leven zoals gevonden in de onderzoeksgroep weerlegbaar zijn. Dit gegeven draagt bij aan de rechtvaardiging van interventies in de situatie van paPURPOSE Living kidney donation offers many advantages, both from a medical and societal point of view. However, there is a group of patients that cannot or will not make use of the living kidney donation program. The purpose of the study ‘Living Kidney donation: psychological and ethical aspects’ is to gain insight into the knowledge and acceptance of this form of kidney transplantation. The group we investigate is the group that actually is eligible for living kidney donation / transplantation, namely (1) patients with end stage renal disease on the transplantation waiting list and (2) the persons in their close environment, the potential donors. Investigating these groups is the strategy to find out if, and under what circumstances, expansion of the living kidney donation program is feasible and ethically acceptable. RESEARCH QUESTIONS The project comprises two research questions. The first research question is: what are the psychological barriers for living kidney donation for the patients and the people in their close environment? The second research question is: what are the moral arguments to deal or actively or passively with the persons in the close environment of the patients who are the potential donors? In other words, to what extent are interventions morally acceptable? DESIGN PATIENTS We have approached the group of patients on the waiting list for a kidney transplant (region of the Erasmus University Medical Center). We asked the patients for permission to approach individuals in their personal environment, the potential donors. If both (patient and relative of patient) agreed on this, we interviewed these potential donors as well. We also included a control group in our study. This group consists of patients and their actual donors who have planned to undergo living kidney donation/transplantation in the near future and had already made arrangements together with their clinicians. INTERVIEW All participants in our study were interviewed by means of a semi-structured interview. Former research has shown various variables that influence willingness to undergo living kidney donation / transplantation. These variables are included in the interview: · Sociodemographic and medical variables · Knowledge and information · Acceptance of, and argument about of living kidney donation · Communication with the specialist and the personal environment · Risk perception · Expectations regarding the personal relationship between patient and donor. ETHICAL ANALYSIS Ethical analysis is based on the results of the empirical part of the study. Reasoning as found in the empirical part of the study is tested for ethical justification, using ethical theory on the structure of argumentation especially the theories as formulated by Toulmin, Rawls and Nagel. BEREIKTE RESULTATEN/NIEUWE INZICHTEN The willingness to accept the offer of a living kidney donor is very high for patients in the group of interest: only 19% has a negative attitude towards ling donation. Thus, it is not a matter of unwillingness of the patients to accept a living kidney donor. We found a number of differences between the group of interest and the control group. A notable finding is that the communication about kidney donation in the control group is almost always initiated by the donor : being offered a kidney (or not) seems to be decisive for either or not pursuing living kidney donation. Patients find it very difficult to bring up the topic them selves. Ethical analysis shows that the arguments or objections against living kidney donation as raised by the group of interest can be refuted. This adds to the moral acceptability of interventions in the situation of patients on the waiting list for transplantation who do not enter the living kidney donation program initially

Mens (dood of levend) of dier? Attitudes over en morele implicaties van orgaanverwerving

Dit rapport is het verslag van een verkennende studie naar attitudes met betrekking tot orgaandonatie, en de morele implicaties hiervan. Psychologisch en ethisch onderzoek vullen elkaar in dit rapport aan. Er wordt aandacht geschonken aan twee ontwikkelingen op het gebied van orgaanverwerving: de toename van orgaandonaties bij leven, met name bij donatie van nieren en de verminderde interesse in de ontwikkeling van xenotransplantatie. Het psychologische deel van het rapport valt uiteen in literatuurstudie en eigen empirisch onderzoek. In dit deel wordt zowel de attitude van patiënten als de psychosociale belasting beschreven voor xenotransplantatie en voor nierdonatie bij leven. Patiënten zien nierdonatie bij leven in het algemeen als een wenselijk alternatief voor de wachtlijstsituatie, terwijl men in dit opzicht een stuk terughoudender is ten aanzien van xenotransplantatie. Om te bepalen welke rol van overheid, zorgverleners en onderzoekers gepast is, is het van belang te begrijpen hoe persoonlijke overtuigingen worden gevormd en kunnen veranderen. In het ethische, tweede deel van het rapport wordt dan ook meer aandacht besteed aan de verschillende motivaties voor orgaandonatie. Bij postmortale donatie worden vooral waarden als vrijwilligheid, anonimiteit en altruïsme genoemd. Bij familiedonatie doen begrippen als vanzelfsprekende solidariteit, morele plicht en lotsverbondenheid hun intrede, maar ook begrippen als eigenbelang, afhankelijkheid en wederkerigheid. Onderzocht wordt hoe de verschillende donatievormen zich tot elkaar verhouden, teneinde te bepalen op welke motivaties voor orgaandonatie we als maatschappij een beroep willen doen. Op dit punt wordt expliciet ingegaan op de rol van de overheid. Tevens is er een meer losstaand hoofdstuk gewijd aan commerciële orgaandonatie

Employing quality control and feedback to the EQ-5D-5L valuation protocol to improve the quality of data collection

Objectives: In valuing health states using generic questionnaires such as EQ-5D, there are unrevealed issues with the quality of the data collection. The aims were to describe the problems encountered during valuation and to evaluate a quality control report and subsequent retraining of interviewers in improving this valuation. Methods: Data from the first 266 respondents in an EQ-5D-5L valuation study were used. Interviewers were trained and answered questions regarding problems during these initial interviews. Thematic analysis was used, and individual feedback was provided. After completion of 98 interviews, a first quantitative quality control (QC) report was generated, followed by a 1-day retraining program. Subsequently individual feedback was also given on the basis of follow-up QCs. The Wilcoxon signed-rank test was used to assess improvements based on 7 indicators of quality as identified in the first QC and the QC conducted after a further 168 interviews. Results: Interviewers encountered problems in recruiting respondents. Solutions provided were: optimization of the time of interview, the use of broader networks and the use of different scripts to explain the project’s goals to respondents. For problems in interviewing process, solutions applied were: developing the technical and personal skills of the interviewers and stimulating the respondents’ thought processes. There were also technical problems related to hardware, software and internet connections. There was an improvement in all 7 indicators of quality after the second QC. Conclusion: Training before and during a study, and individual feedback on the basis of a quantitative QC, can increase the validity of values obtained from generic questionnaires

Home measures of anxiety, avoidant coping and defence as predictors of anxiety, heart rate and skin conductance level just before invasive cardiovascular procedures

The question was whether anxiety, heart rate and skin conductance level just before invasive cardiac procedures could be predicted by anxiety related measures obtained at patients homes approximately 3 weeks before treatment. Trait measures of avoidant coping and defence were provided by sixty-three male and thirty-three female patients who were scheduled for a diagnostic or interventional heart catheterization. In hospital physiological measures were registered continously during a 20 min interview and subsequently patients reported their anxiety. Results with hierarchical regres