Defining consensus norms for palliative care of people with intellectual disabilities in Europe using Delphi methods: A White Paper from the European Association of Palliative care

Background: People with intellectual disabilities often present with unique challenges that make it more difficult to meet their
palliative care needs.
Aim: To define consensus norms for palliative care of people with intellectual disabilities in Europe.
Design: Delphi study in four rounds: (1) a taskforce of 12 experts from seven European countries drafted the norms, based on available empirical knowledge and regional/national guidelines; (2) using an online survey, 34 experts from 18 European countries evaluated the draft norms, provided feedback and distributed the survey within their professional networks. Criteria for consensus
were clearly defined; (3) modifications and recommendations were made by the taskforce; and (4) the European Association for
Palliative Care reviewed and approved the final version.
Setting and participants: Taskforce members: identified through international networking strategies. Expert panel: a purposive sample identified through taskforce members’ networks.
Results: A total of 80 experts from 15 European countries evaluated 52 items within the following 13 norms: equity of access, communication, recognising the need for palliative care, assessment of total needs, symptom management, end-of-life decision making, involving those who matter, collaboration, support for family/carers, preparing for death, bereavement support, education/training
and developing/managing services. None of the items scored less than 86% agreement, making a further round unnecessary. In light of respondents’ comments, several items were modified and one item was deleted.
Conclusion: This White Paper presents the first guidance for clinical practice, policy and research related to palliative care for people with intellectual disabilities based on evidence and European consensus, setting a benchmark for changes in policy and practice.

Testing the psychometric properties of Kidscreen-27 with Irish children of low socio-economic status

Background

Kidscreen-27 was developed as part of a cross-cultural European Union-funded project to standardise the measurement of children’s health-related quality of life. Yet, research has reported mixed evidence for the hypothesised 5-factor model, and no confirmatory factor analysis (CFA) has been conducted on the instrument with children of low socio-economic status (SES) across Ireland (Northern and Republic).

Method

The data for this study were collected as part of a clustered randomised controlled trial. A total of 663 (347 male, 315 female) 8–9-year-old children (M = 8.74, SD = .50) of low SES took part. A 5- and modified 7-factor CFA models were specified using the maximum likelihood estimation. A nested Chi-square difference test was conducted to compare the fit of the models. Internal consistency and floor and ceiling effects were also examined.

Results

CFA found that the hypothesised 5-factor model was an unacceptable fit. However, the modified 7-factor model was supported. A nested Chi-square difference test confirmed that the fit of the 7-factor model was significantly better than that of the 5-factor model. Internal consistency was unacceptable for just one scale. Ceiling effects were present in all but one of the factors.

Conclusions

Future research should apply the 7-factor model with children of low socio-economic status. Such efforts would help monitor the health status of the population.

Recognising Ecological Contexts of Diverse Ethnic Groups: Experiences of British-Indian Adult Children of Divorce

The process of divorce as a family change process including outcomes and consequences has received considerable research attention in the western context. However, the experience of divorce for children within specific ethnic contexts has been rather limited leading to poor planning and practice provision with diverse families. By drawing upon an empirical qualitative study of British Indian adult children, this paper will make a case for recognising diverse needs within specific historical, socio-cultural and developmental contexts. There is a need to acknowledge these contexts in policy design to establish practice that is flexible, accessible and relevant to the needs of different and diverse communities. Results indicate that areas of impact may be similar to those identified by other studies within the literature review. However, the experiences, expressions, implications and larger consequences of impact are located within specific socio-cultural contexts. In support of this, major findings of the study (outlined below) will be discussed - Context: patriarchy, stigma, immigration; Impact: economic, social, emotional, career/education, physical; Coping: psychological strategies, physical strategies, social strategies, sources of support.

Further reflections on Habermas's contribution to discourse in child protection: An examination of power in social life

Hayes and Houston's positive review of Habermas's contribution to discourse in family group conferences (in this journal) has been challenged by Garrett. In this paper, one of the authors replies to Garrett but extends the analysis through a more considered, developed and detailed examination of Habermas's thoughts on power in social life. This leads to a conceptual framework that enables the participants in the conference to exercise power in a positive manner. In developing this earlier analysis, the paper also acknowledges Garrett's argument that Bourdieu helps us to understand the nature of constraining social structures in child protection. However, Bourdieu's ideas are subsequently challenged on the grounds that they lack a competent formulation on human agency - a faculty that Habermas cogently elucidates. This enlarged understanding of agency, it is argued, offers a theoretical resource that fits better with the ethos of emancipatory social work.

A meta-analysis of latitudinal variations in life-history traits of roach, Rutilus rutilus, over its geographical range: linear or non-linear relationships?

1. We collated information from the literature on life history traits of the roach (a generalist freshwater fish), and analysed variation in absolute fecundity, von Bertalanffy parameters, and reproductive lifespan in relation to latitude, using both linear and non-linear regression models. We hypothesized that because most life history traits are dependent on growth rate, and growth rate is non-linearly related with temperature, it was likely that when analysed over the whole distribution range of roach, variation in key life history traits would show non-linear patterns with latitude.