Understanding Human Dignity

“Understanding Human Dignity” aims to help the reader make sense of current debates about the meaning and implications of the idea of “human dignity.” The concept of human dignity has probably never been so omni-present in everyday speech, or so deeply embedded in political and legal discourse. In debates on torture, abortion, same-sex marriage, and welfare reform, appeals to dignity are seldom hard to find. The concept of dignity is not only a prominent feature of political debate, but also, and increasingly, of legal argument. Indeed, courts tell us that human dignity is the foundation of all human rights. But the more important it is, the more contested it seems to have become. There has, as a result, been an extraordinary explosion of scholarly writing about the concept of human dignity in law, political philosophy, and theology. This book aims to reflect on these intra-disciplinary debates about dignity in law, philosophy, history, politics, and theology, through a series of edited essays from specialists in these fields, explored the contested concept in its full richness and complexity.

Who is responsible?:The role of family physicians in the provision of supportive cancer care

Purpose: Patients living with cancer identify family physicians (FPs; ie, primary care physicians) as a preferred resource for supportive cancer care (SCC), either through direct provision or referral. However, little research exists on the specific role FPs play in addressing these needs. Methods: A mailed survey was sent to all FPs in a health care region in Ontario, Canada, to determine their current and preferred roles in the specific provision of SCC to patients with cancer who have been newly diagnosed or are at the end of life. Results: Completed surveys were received from 84 (64%) of 183 eligible FPs. Most practitioners reported providing for their patients' various SCC needs. However, clear gaps were demonstrated in psychosocial and nutritional counseling and in providing information about SCC services. FPs were satisfied with their current role reported in SCC coordination, although the type of role varied; FPs who were asked about their end-of-life patients tended to see themselves as part of coordinating teams, whereas FPs asked about their recently diagnosed patients were more likely to defer this responsibly to a third party. Conclusion: This study identified gaps in the provision of psychosocial and informational care to patients with cancer that may result in unmet needs. In general, FPs do not see themselves as primarily responsible for coordinating patients' SCC and do not wish to assume this role. Accordingly, models that involve FPs as team members in SCC coordination are more feasible for reducing patient need. Copyright © 2010 by American Society of Clinical Oncology.

The influence of health education on family management of childhood asthma

The purpose of this study was to examine differences in asthma management among families with a child who has moderate to severe asthma. Half of the 50 families chosen for study had participated in an intensive in-patient asthma treatment program and half had participated in an out-patient day camp. Two broad categories of outcome were examined - illness and self-management skills. Families who participated in the in-patient program exhibited a pattern of illness behaviours which indicated asthma symptoms were better managed in comparison to those families that participated in the out-patient program. It was also observed that children who participated in the in-patient program had a tendency to feel more positive about having asthma with the more self-management behaviours they practised. On the other hand, children from the out-patient program reported a more negative attitude about having asthma with the more self-management behaviours they practised.

Geographic atrophy in retinal angiomatous proliferation

Purpose: To describe the occurrence of geographic atrophy in patients with retinal angiomatous proliferation (RAP). Methods: Demographics, visual acuity, color fundus photographs, fluorescein and indocyanine green angiograms, and fundus autofluorescence and near-infrared autofluorescence images were reviewed in 53 patients (66 eyes) with RAP. Results: Of 53 treatment-naive eyes, 19 (36%) had atrophy at baseline. Of 66 eyes, 57 (86%) developed de novo atrophy or enlargement of preexisting areas of atrophy during the follow-up (median, 17 months; range, 3-53 months) after treatment. Areas of atrophy were observed at the site of the RAP (58 of 66 eyes, 88%) of a previously existing pigment epithelial detachment (18 of 44 eyes; 41%) and elsewhere (43 of 66 eyes, 65%). At presentation, RAP was found to be frequently associated with increased autofluorescence at the fovea because of cystoid macular edema (36 of 53 eyes, 68%) and reduced autofluorescence because of hard exudation (38 of 53 eyes, 72%) and intraretinal hemorrhages (32 of 53 eyes, 60%). Background reticular (39%) and homogeneous (36%) autofluorescence were most commonly observed. Conclusion: Geographic atrophy occurs frequently in patients with RAP after treatment. This information, if confirmed in other cohorts, would be valuable for the counseling of patients with this disease and for the understanding of the pathogenesis of this condition and its progression after treatment. Copyright © 2011 Lippincott Williams &Wilkins.

A Longitudinal Study of Stargardt Disease: Clinical and Electrophysiologic Assessment, Progression, and Genotype Correlations

Purpose: To investigate the clinical and electrophysiologic natural history of Stargardt disease and correlate with the genotype. Design: Cohort study of 59 patients. Methods: Clinical history, examination, and electrophysiologic assessment were undertaken in a longitudinal survey. Patients were classified into 3 groups based on electrophysiologic findings, as previously published: Group 1 had dysfunction confined to the macula; Group 2 had macular and generalized cone system dysfunction; and Group 3 had macular and both generalized cone and rod system dysfunction. At baseline, there were 27 patients in Group 1, 17 in Group 2, and 15 in Group 3. Amplitude reduction of >50% in the relevant electroretinogram (ERG) component or a peak time shift of >3 ms for the 30 Hz flicker ERG or bright flash a-wave was considered clinically significant ERG deterioration. Molecular screening of ABCA4 was undertaken. Results: The mean age at baseline was 31.7 years, with the mean follow-up interval being 10.5 years. A total of 22% of patients from Group 1 showed ERG group transition during follow-up, with 11% progressing to Group 2 and 11% to Group 3. Forty-seven percent of patients in Group 2 progressed to Group 3. There was clinically significant ERG deterioration in 54% of all subjects: 22% of Group 1, 65% of Group 2, and 100% of Group 3. At least 1 disease-causing ABCA4 variant was identified in 47 patients. Conclusions: All patients with initial rod ERG involvement demonstrated clinically significant electrophysiologic deterioration; only 20% of patients with normal full-field ERGs at baseline showed clinically significant progression. Such data assist counseling by providing more accurate prognostic information and are also highly relevant in the design, patient selection, and monitoring of potential therapeutic interventions. © 2013 Elsevier Inc. All rights reserved.

Research Review: Teenage pregnancy and parenthood: the role of fathers

From the research available in America and Britain it would appear that the men who father children by teenage mothers tend to be a few years older than their teenage partners, although a minority may be significantly older. With regard to the factors associated with fatherhood there are striking similarities to the literature on teenage mothers. Like teenage mothers young fathers tend to be from low socio-economic backgrounds, experience lower educational attainment and fewer employment opportunities than their childless peers. Similarly they tend to experience greater psychological and emotional difficulties and may have a history of delinquent behaviour.

These young fathers are involved in a variety of relationships with teenage mothers, few of which result in marriage and many of which result in the breakdown of cohabitation or the termination of the relationship. This pattern of increasing relationship breakdown over time is related to decreasing paternal contact with children in both America and Britain. Often conflictual relationships with teenage mothers or maternal grandparents and a lack of financial resources are cited by young fathers as barriers to their continued involvement and contact with their children. However, the mothers are much more likely to cite paternal disinterest as the reason for a lack of paternal involvement and there is some indication that mothers and fathers have different views on the level of practical involvement expected from fathers. While most of quantitative data on the subject provides a rather negative picture of paternal involvement, qualitative research highlights how many young fathers genuinely want to be involved with their children and would have more contact and input if they could.

While much less is known about the support provided to young fathers in comparison with their female counterparts, there is some suggestion that the support and role expectations provided by the paternal grandmother may influence how involved young fathers are. There is also some indication that a sizeable minority of young men may receive no such support from their family and may also be treated with hostility or ignored by the maternal grandparents. Young fathers also report limited or no contact with midwives, health visitors and social workers.

Next generation sequencing-based molecular diagnosis of retinitis pigmentosa: identification of a novel genotype-phenotype correlation and clinical refinements

Retinitis pigmentosa (RP) is a devastating form of retinal degeneration, with significant social and professional consequences. Molecular genetic information is invaluable for an accurate clinical diagnosis of RP due to its high genetic and clinical heterogeneity. Using a gene capture panel that covers 163 of the currently known retinal disease genes, including 48 RP genes, we performed a comprehensive molecular screening in a collection of 123 RP unsettled probands from a wide variety of ethnic backgrounds, including 113 unrelated simplex and 10 autosomal recessive RP (arRP) cases. As a result, 61 mutations were identified in 45 probands, including 38 novel pathogenic alleles. Interestingly, we observed that phenotype and genotype were not in full agreement in 21 probands. Among them, eight probands were clinically reassessed, resulting in refinement of clinical diagnoses for six of these patients. Finally, recessive mutations in CLN3 were identified in five retinal degeneration patients, including four RP probands and one cone-rod dystrophy patient, suggesting that CLN3 is a novel non-syndromic retinal disease gene. Collectively, our results underscore that, due to the high molecular and clinical heterogeneity of RP, comprehensive screening of all retinal disease genes is effective in identifying novel pathogenic mutations and provides an opportunity to discover new genotype-phenotype correlations. Information gained from this genetic screening will directly aid in patient diagnosis, prognosis, and treatment, as well as allowing appropriate family planning and counseling.

Queering the Family: Attitudes towards Lesbian and Gay Relationships and Families in Northern Ireland

The Northern Ireland Life andTimes (NILT) Survey has asked questions on lesbian, gay, bisexual and transgender (LGBT) issues since 1998. To date survey data have focused primarily on issues relating to prejudice, discrimination and tolerance. In 2012 a range of questions focussing more specifically on LGBT1 issues was included. This collected information on knowledge and perceptions of the LGBT population; personal prejudice; attitudes on equality issues; the visibility of LGBT people and family-related issues.

This update provides an overview of some of the information emerging from this data. It discusses attitudes towards same-sex relations and notable changes over time. Given recent political debate the primary focus of this paper is on attitudes relating to ‘queer’ marriage, family and parenting. We use the term ‘queer’ here to refer to ‘the diverse family structures formed by those with non-normative gender behaviours or sexual orientations’ (Bernstein and Reimann, 2001: 3). As previous updates have noted, there have been significant legislative and policy changes in this area (Jarman, 2010) and this continues with ongoing discussions regarding the development of a Sexual Orientation Strategy for Northern Ireland (Gray et al, 2013).

Nonresident Father Involvement with Children and Divorced Women's Likelihood of Remarriage

Although remarriage is a relatively common transition, little is known about how nonresident fathers affect divorced mothers’ entry into remarriage. Using the 1979–2010 rounds of the National Longitudinal Study of Youth 1979, the authors examined the likelihood of remarriage for divorced mothers (N = 882) by nonresident father contact with children and payment of child support. The findings suggest that maternal remarriage is positively associated with nonresident father contact but not related to receiving child support.

(Re)-Introducing Themes of Religion and Spirituality to Professional Social Work Training in the Land of ‘Saints and Scholars’.

This chapter begins by alluding to Ireland’s historical reputation as the land of “Saints and Scholars” and then briefly charts its demise from this position. A parallel process in relation to religiously motivated provision of health and social care is outlined. The inclusion of themes of religion and spirituality within the current professional social work codes in the USA and Britain and the framework for social work training in Northern Ireland is noted. In this context the lack of any substantive inclusion of themes of religion and/or spirituality within the Bachelor of Social Work (BSW) degree at Queens University Belfast will be situated. A series of intersecting reasons for this lack of inclusion are proposed in terms of the experience of living through the recent troubled history of Northern Ireland and a variety of biases in academic thought.
A rationale for the re-introduction of inputs on religion and spirituality is articulated in terms of the widespread resurgence of these themes within health and social care and psychotherapy literature and the new emphasis on practicing in culturally sensitive ways in Britain. The first steps to re-introduce these themes under the higher context marker of “culturally competent practice” are described and an analysis of data from the students’ feedback presented along with illustrative quotations. The dissonance between the initial misgivings of staff and the overwhelmingly positive responses of students are highlighted. The chapter concludes with a discussion of lessons learned through the process with an emphasis on how the inclusion of these themes can result in better practice for service users, including those impacted by “the Troubles” in Northern Ireland.

Management and diagnosis of psychogenic cough, habit cough, and tic cough: A systematic review

BACKGROUND: Several pharmacologic and nonpharmacologic therapeutic options have been used to treat cough that is not associated with a pulmonary or extrapulmonary etiology.

METHODS: We conducted a systematic review to summarize the evidence supporting different cough management options in adults and children with psychogenic, tic, and habit cough. Medline, EMBASE, the Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews, and Scopus were searched from the earliest inception of each database to September 2013. Content experts were contacted, and we searched bibliographies of included studies to identify additional references.

RESULTS: A total of 18 uncontrolled studies were identified, enrolling 223 patients (46% male subjects, 96% children and adolescents). Psychogenic cough was the most common descriptive term used (90% of the studies). Most of the patients (95%) had no cough during sleep; barking or honking quality of cough was described in only eight studies. Hypnosis (three studies), suggestion therapy (four studies), and counseling and reassurance (seven studies) were the most commonly used interventions. Hypnosis was effective in resolving cough in 78% of the patients and improving it in another 5%. Suggestion therapy resolved cough successfully in 96% of the patients. The greatest majority of improvements noted with these forms of therapy occurred in the pediatric age group. The quality of evidence is low due to the lack of control groups, the retrospective nature of all the studies, heterogeneity of definitions and diagnostic criteria, and the high likelihood of reporting bias.

CONCLUSIONS: Only low-quality evidence exists to support a particular strategy to define and treat psychogenic, habit, and tic cough. Patient values, preferences, and availability of potential therapies should guide treatment choice.

Patient safety and communication: A new assessment for doctors trained in countries where language differs from that of the host country: Results of a pilot using a domain-based assessment

Objective

Global migration of healthcare workers places responsibility on employers to comply with legal employment rights whilst ensuring patient safety remains the central goal. We describe the pilot of a communication assessment designed for doctors who trained and communicated with patients and colleagues in a different language from that of the host country. It is unique in assessing clinical communication without assessing knowledge.

A 14-station OSCE was developed using a domain-based marking scheme, covering professional communication and English language skills (speaking, listening, reading and writing) in routine, acute and emotionally challenging contexts, with patients, carers and healthcare teams. Candidates (n = 43), non-UK trained volunteers applying to the UK Foundation Programme, were provided with relevant station information prior to the exam.

The criteria for passing the test included achieving the pass score and passing 10 or more of the 14 stations. Of the 43 candidates, nine failed on the station criteria. Two failed the pass score and also the station criteria. The Cronbach's alpha coefficient was 0.866.

This pilot tested ‘proof of concept’ of a new domain-based communication assessment for non-UK trained doctors.

The test would enable employers and regulators to verify communication competence and safety in clinical contexts, independent of clinical knowledge, for doctors who trained in a language different from that of the host country.

Intermarriage in a Divided Society: Ireland a Century Ago

This paper explores the characteristics associated with marriages between Roman Catholics and members of other religious denominations in Ireland before the Great War. Using the entire digitized returns of the 1911 population census, we find that such marriages were relatively rare, occurring in less than one percent of total marriages. Some of this infrequency can be attributed to ethno-religious hostility-especially in the north of the country. However, we also show that the rarity of intermarriage reflects local marriage markets, as non-Roman Catholics living in communities with fewer coreligionists were more likely to intermarry. We examine the individual characteristics of partners in these marriages, looking at the religious denomination of their children, their decision to marry out, and their fertility behavior. Our findings illustrate how the frequency of intermarriage reflects historical levels of intolerance, but only after local marriage market conditions have been accounted for.

Next-generation sequencing-based molecular diagnosis of 82 retinitis pigmentosa probands from Northern Ireland

Retinitis pigmentosa (RP) is a group of inherited retinal disorders characterized by progressive photoreceptor degeneration. An accurate molecular diagnosis is essential for disease characterization and clinical prognoses. A retinal capture panel that enriches 186 known retinal disease genes, including 55 known RP genes, was developed. Targeted next-generation sequencing was performed for a cohort of 82 unrelated RP cases from Northern Ireland, including 46 simplex cases and 36 familial cases. Disease-causing mutations were identified in 49 probands, including 28 simplex cases and 21 familial cases, achieving a solving rate of 60 %. In total, 65 pathogenic mutations were found, and 29 of these were novel. Interestingly, the molecular information of 12 probands was neither consistent with their initial inheritance pattern nor clinical diagnosis. Further clinical reassessment resulted in a refinement of the clinical diagnosis in 11 patients. This is the first study to apply next-generation sequencing-based, comprehensive molecular diagnoses to a large number of RP probands from Northern Ireland. Our study shows that molecular information can aid clinical diagnosis, potentially changing treatment options, current family counseling and management.