This article discusses three steps involved in moving us toward a theory of individual quality of life: developing a conceptual model, integrating theory components, and applying and evaluating the ...theory. Each of the proposed steps is guided by established standards regarding theory development and use. The article concludes with a discussion of criteria that can be used to evaluate the theory and the contribution that a theory of individual quality of life would make to the field of disability.
This article presents the framework of a dynamic approach to quality of life (QOL) enhancement based on the conceptualization and measurement of individual-referenced quality of life. Sections of the ...article summarize the premises of QOL enhancement, provide the rationale for a dynamic approach to QOL enhancement, discuss six components of QOL enhancement, and discuss the parameters of an emerging theory of quality of life and the contributions such a theory would make to service delivery, policy development, and QOL-related research.
Two prenatal screening tests for congenital anomalies are offered to all pregnant women in the Netherlands on an opt-in basis: the Combined Test (CT) for Down syndrome at twelve weeks, and the Fetal ...Anomaly Scan (FAS) at around twenty weeks. The CT is free for women who are 36 or older; the FAS is free for all women. We investigated factors associated with the CT and FAS uptake.
This study is part of the DELIVER study that evaluated primary care midwifery in the Netherlands. Associations between the women's characteristics and the CT and FAS uptake were measured using multivariate and multilevel logistic regression analyses.
Of 5216 participants, 23% had the CT and 90% had the FAS, with uptake rates ranging from 4% to 48% and 62% to 98% respectively between practices. Age (OR: 2.71), income (OR: 1.38), ethnicity (OR: 1.37), being Protestant (OR: 0.25), multiparous (OR: 0.64) and living in the east of the country (OR: 0.31) were associated with CT uptake; education (OR: 1.26), income (OR: 1.66), being Protestant (OR: 0.37) or Muslim (OR: 0.31) and being multiparous (OR: 0.74) were associated with FAS uptake. Among western women with a non-Dutch background, first generation (OR: 2.91), age (OR: 2.00), income (OR: 1.97), being Protestant (OR: 0.32) and living in the east (OR: 0.44) were associated with CT uptake; being Catholic (OR: 0.27), Protestant (OR: 0.13) were associated with FAS uptake. Among non- western women with a non-Dutch background, age (OR: 1.73), income (OR: 1.97) and lacking proficiency in Dutch (OR: 2.18) were associated with CT uptake; higher education (OR: 1.47), being Muslim (OR: 0.37) and first generation (OR: 0.27) were associated with FAS uptake.
The uptake of the CT and FAS varied widely between practices. Income, parity and being Protestant were associated with uptake of both tests; ethnicity, age and living in the east were associated with CT uptake, and education and being Muslim with FAS uptake. These findings help to explain some differences between women choosing or declining early and late screening, but not the large variation in test uptake among practices, nor between the Netherlands and other countries.
This paper is written to honor Jean Vanier for being awarded with the Templeton Prize 2015. It revisits the topic of friendship in his work. The aim is to show that there is a strong connection in ...Vanier's views on friendship and his understanding of the providential nature of L'Arche. To highlight this aspect of his thinking, the connection of friendship and providence is contrasted with the modern view that connects friendship with choice. Even though Vanier values Aristotle's views on friendship, he clearly does not follow the ancient philosopher. Vanier emphasizes the transforming nature of friendships in L'Arche, which is very different from Aristotle's conception that in important respects returns in the modern view as friendship as the object of choice.
Background This paper discusses the recent debate on parenting by people with intellectual disabilities in the Netherlands. By and large this debate has been dominated by disastrous examples of ...child abuse and neglect in families where one or both parents have a disability. Feeding on horror stories the media have construed the issue as one of moral and legal constraint: should people with disabilities be allowed to have children? In view of this construal, many professionals in the field have rejected the debate as irrelevant. In their view the issue is about support, not about constraint.
Aim The national organization for self‐advocacy in The Netherlands has claimed the right to parenting based on the principle of equal citizenship. This paper aims at (1) reconstructing and (2) evaluating the positions taken in the Dutch debate since its incipience in 2002, particularly with regard to this principle.
Method A philosophical reconstruction of how the moral principle of equal citizenship structured the Dutch debate on parenting by people with intellectual disabilities, in particular with regard to the nation of ‘good enough parenting’.
Conclusion The analysis shows how the principle of equal citizenship guided research in The Netherlands and how it is crucial in criticizing negative responses that depend on stereotyping of people with intellectual disabilities as parents. It indicates how in at least two instances, these responses can be shown to constitute a case of discrimination against these people.
In the Netherlands, prenatal screening follows an opting in system and comprises two non-invasive tests: the combined test to screen for trisomy 21 at 12 weeks of gestation and the fetal anomaly scan ...to detect structural anomalies at 20 weeks. Midwives counsel about prenatal screening tests for congenital anomalies and they are increasingly having to counsel women from religious backgrounds beyond their experience. This study assessed midwives' perceptions and practices regarding taking client's religious backgrounds into account during counseling. As Islam is the commonest non-western religion, we were particularly interested in midwives' knowledge of whether pregnancy termination is allowed in Islam.
This exploratory study is part of the DELIVER study, which evaluated primary care midwifery in The Netherlands between September 2009 and January 2011. A questionnaire was sent to all 108 midwives of the twenty practices participating in the study.
Of 98 respondents (response rate 92%), 68 (69%) said they took account of the client's religion. The two main reasons for not doing so were that religion was considered irrelevant in the decision-making process and that it should be up to clients to initiate such discussions. Midwives' own religious backgrounds were independent of whether they paid attention to the clients' religious backgrounds. Eighty midwives (82%) said they did not counsel Muslim women differently from other women. Although midwives with relatively many Muslim clients had more knowledge of Islamic attitudes to terminating pregnancy in general than midwives with relatively fewer Muslim clients, the specific knowledge of termination regarding trisomy 21 and other congenital anomalies was limited in both groups.
While many midwives took client's religion into account, few knew much about Islamic beliefs on prenatal screening for congenital anomalies. Midwives identified a need for additional education. To meet the needs of the changing client population, counselors need more knowledge of religious opinions about the termination of pregnancy and the skills to approach religious issues with clients.
to explore what role religious beliefs of pregnant Muslim women play in their decision-making on antenatal screening, particularly regarding congenital abnormalities and termination, and whether ...their interpretations of the religious doctrines correspond to the main sources of Islam.
qualitative pilot study using in-depth interviews with pregnant Muslim women.
one midwifery practice in a medium-sized city near Amsterdam participated in the study.
10 pregnant Muslim women of Turkish origin who live in a high density immigrant area and who attended primary midwives for antenatal care were included in the study.
to explore the role of religion in decision-making on antenatal screening tests, a topic list was constructed, including four subjects: being a (practising) Muslim, the view on unborn life, the view on disabled life and the view on termination. To analyse the interviews, open and axial coding based on the Grounded Theory was used and descriptive and analytical themes were identified and interpreted.
all 10 interviewees stated that their faith played a role in their decision-making on antenatal screening, specific to the combined test. They did not consider congenital anomalies as a problem and did not consider termination to be an option in case of a disabled fetus. However, the Islamic jurisprudence considers that termination is allowed if the fetus has serious abnormalities, but only before 19 weeks plus one day of gestation.
religious convictions play a role regarding antenatal screening in pregnant Muslim women of Turkish origin. The interviewees did not consider a termination in case of an affected child. Women were unaware that within Islamic tradition there is the possibility of termination if a fetus has serious anomalies. Incomplete knowledge of religious doctrines may be influencing both decisions of antenatal screening and diagnostic tests uptake and of terminating a pregnancy for fetuses with serious anomalies.
counsellors should be aware of the role of religious beliefs in the decision-making process on antenatal screening tests.
to gain insight into pregnant Muslim Moroccan women's preferences regarding the content of and approach to antenatal counselling for anomaly screening.
qualitative study using in-depth interviews.
...participants were recruited from one midwifery practice in a medium-sized city near Amsterdam.
12 pregnant Muslim Moroccan women who live in an area with a high density of immigrants. DATA COLLECTION AND DATA ANALYSES: we conducted open interviews after the cut-off date for the 20 week fetal anomaly scan and used techniques from the thematic analysis approach described by Braun and Clarke (2006).
pregnant Muslim Moroccan women's preferences towards counselling could be summarised in three main findings. Firstly, pregnant Muslim Moroccan women underlined the importance of accurate and detailed information about the tests procedures and the anomalies that could be detected. Secondly, pregnant Muslim Moroccan women preferred counsellors to initiate discussions about moral topics and its relationship with the women's religious beliefs and values to facilitate an informed choice about whether or not to participate in the screening tests. Thirdly, pregnant Muslim Moroccan women preferred a counsellor who respects and treats them as an individual who has an Islamic background. The counsellor should have practical knowledge of Islamic rulings that are relevant to the anomaly tests.
pregnant Muslim Moroccan women preferred to be accurately informed about antenatal anomaly tests and to be asked about their individual views on life by a counsellor who has genuine interest in the individual client and applied knowledge of Islamic beliefs regarding the value of life.
counsellors should explore clients' moral values about quality of life and termination and its relationship with religious beliefs. Counsellors should know about Islamic rulings related to antenatal anomaly screening.
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