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Research paper thumbnail of Appropriate care at the end of life. Report number 296

Appropriate care at the end of life

Research paper thumbnail of Use and perception of information sources on COVID-19 measures by citizens of Belgium

Frontiers in Communication

BackgroundThe effectiveness of adherence to COVID-19 infection prevention and control (IPC) measu... more BackgroundThe effectiveness of adherence to COVID-19 infection prevention and control (IPC) measures depends on effective risk communication. This study assessed use and perception of COVID-19 information sources and channels in Belgium, and the relationship with adherence to measures.MethodsData were collected through an online questionnaire among a sample of 2008 respondents, representative for citizens of Belgium in terms of gender, age, socio-economic status, and region. Potential information sources named in the questionnaire were politicians, experts, journalists, and close contacts.ResultsOverall, experts contributed most to informing people on COVID-19 measures, and their information was considered clearest and most trustworthy, while politicians scored lowest for information clarity. All information channels were used by large proportions of respondents, namely television 80.2%, (online) newspapers 56.5%, radio 35.7% and social media 27.7%. Factors that contributed signific...

Research paper thumbnail of The quality of life of children facing life limiting conditions and of their parents in Belgium: a cross sectional study

Background: Paediatric palliative care (PPC) aims to improve the quality of life of children, how... more Background: Paediatric palliative care (PPC) aims to improve the quality of life of children, however, this objective is rarely measured in clinical care. PPC is provided in Belgium through 6 transmural paediatric liaison teams (PLTs) ensuring continuity of care for children with life-limiting or life-threatening conditions (LLC/LTC). This study aims to measure the quality of life (QoL) of children with LLC/LTC monitored by PLT and the QoL of their parents.Methods: During interviews with children and parents, an original sociodemographic questionnaire, the Children Palliative Outcome Scale – version 2 (CPOS-2), the Fragebogen für Kinder und Jugendliche zur Erfassung der gesundheitsbezogenen Lebensqualität (KINDL) and the Quality of Life in Life-threatening Illness-Family Caregivers (QOLLTI-F) were completed by PLT members. Descriptive statistics were conducted on the sociodemographic data and the CPOS-2 and QOLLTI-F scores. The association between clinicians’ judgement of QoL and th...

Research paper thumbnail of Changing attitudes towards female genital mutilation. From conflicts of loyalty to reconciliation with self and the community: The role of emotion regulation

PLOS ONE

The practice of female genital mutilation (FGM) is a social norm embedded in the patriarchal syst... more The practice of female genital mutilation (FGM) is a social norm embedded in the patriarchal system and is resistant to change due to its roots in the tradition of the practising communities. Despite this difficulty in change, some women succeed in changing their attitudes towards the practice. In trying to understand what makes these women change their attitudes, we identified in a previous study, the critical life events at which change occurs (turning point). These turning points were described with emotions and conflicting feelings based on which we hypothesised that emotion regulation and the resolution of conflicts of loyalty might be possible mechanisms that explain the change of attitudes by the women. In this article, we sought to investigate how the mechanisms interact and how they were at play to explain the change. We, therefore, triangulated our previous data, fifteen women interviewed twice, with the published life stories and public testimonies of 10 women with FGM, a...

Research paper thumbnail of Psychosocial assessment of complex multicultural situations in paediatric liver transplantation with living donors: the benefits of a systemic approach

From 1984 to 2018, 1115 paediatric liver transplantations have been performed, of which 433 with ... more From 1984 to 2018, 1115 paediatric liver transplantations have been performed, of which 433 with living donors. With patients coming from 13 different countries, our centre has a strong international dimension. The Live Organ Donor Consensus Group has formulated a statement according to which “a psychological evaluation is necessary for each potential donor”[i]. In our centre, we systematically conduct pre-transplant psychological assessments, which consist in a clinical family interview. The complexity of the family situations having increased over the last few years, we aimed to address the relevance and efficiency of our pre-transplant interviews. Methods: Content analysis of 130 pre-transplant reports written between 1/07/2014 and 31/10/2018 were reviewed, as well as personal prospective notes by the psychologist, in the follow-up of the families after transplantation during the same period, with a systemic attention to the transplanted child’s family. Results: Our reflective wo...

Research paper thumbnail of Quels sont les principaux facteurs d'adaptation psychosociale à la maladie et au traitement chez les enfants et les adolescents atteints de maladies chroniques ?

Research paper thumbnail of Additional file 2 of "When my mother called me to say that the time of cutting had arrived, I just escaped to Belgium with my daughter": identifying turning points in the change of attitudes towards the practice of female genital mutilation among migrant women in Belgium

Additional file 2. Interview guide.

Research paper thumbnail of Additional file 1: of End-of-life decisions and practices for very preterm infants in the Wallonia-Brussels Federation of Belgium

Contains a printed version of the original online questionnaire in French. Authors are happy to h... more Contains a printed version of the original online questionnaire in French. Authors are happy to help with the translation of the questionnaire on request. (PDF 103 kb)

Research paper thumbnail of Additional file 2 of "When my mother called me to say that the time of cutting had arrived, I just escaped to Belgium with my daughter": identifying turning points in the change of attitudes towards the practice of female genital mutilation among migrant women in Belgium

Additional file 2. Interview guide.

Research paper thumbnail of Additional file 1 of "When my mother called me to say that the time of cutting had arrived, I just escaped to Belgium with my daughter": identifying turning points in the change of attitudes towards the practice of female genital mutilation among migrant women in Belgium

Additional file 1. A construction of a 'lifeline' from a fictive vignette of a typical re... more Additional file 1. A construction of a 'lifeline' from a fictive vignette of a typical reconstructed story from different participants after the 1st and 2nd interviews.

Research paper thumbnail of Ecouter et analyser la parole du patient

Research paper thumbnail of Maladie chronique et identité personnelle : adaptation ou création ?

Research paper thumbnail of Le don vivant parental en transplantation pédiatrique: la question du consentement du receveur

Research paper thumbnail of Entendre la voix du patient – Patient Empowerment

Research paper thumbnail of From research ‘on’ to research ‘with’ children about their family lives: A scoping review of ethical and methodological challenges

Child: Care, Health and Development, 2021

Since the Convention on the Rights of the Child in 1989 (UN General Assembly, 1989), interest in ... more Since the Convention on the Rights of the Child in 1989 (UN General Assembly, 1989), interest in the ethical and methodological challenges involved in conducting research with children has increased considerably. Researchers who work with children have to take into account children's intrinsic physical, mental and emotional vulnerability as well as their interdependence with other family members, particularly their parents. This is especially challenging in research that seeks to explore children's lived experience in relation to aspects of their family lives. We aimed to identify specific ethical issues and ways of overcoming challenges in conducting research with children on some aspects of their family lives. We conducted a scoping review according to the PRISMA Extension for Scoping Reviews Checklist (Tricco et al., 2018). Seventeen publications were selected for data extraction and synthesis, 4 of which were original studies and 13 reflexive papers. Our results confirm that a research project that asks children about aspects of their family lives leads to a number of ethical tensions: while children depend on their parents and family to ensure that their safety and physical needs are met, they also greatly contribute to the development of family dynamics. We highlight methodological strategies that allow researchers to mitigate the ethical challenges that are inherent to this type of research. A promising approach is to use participative methods at each stage of research, including developing a trusting and triadic partnership that includes parents, children, a multidisciplinary research team, and professional gatekeepers. Benefits as well as possible risks for participants should also be considered when children and their parents are engaged in a study.

Research paper thumbnail of Empowerment du patient : possibilités et limites pour la pratique de l’éducation du patient

Research paper thumbnail of “Le développement de la e-santé: des promesses initiales aux enseignements actuels quant aux conditions de son succès pour les partenaires de la relation de soin”

info:eu-repo/semantics/publishe

Research paper thumbnail of Face and Content Validity, Acceptability, and Feasibility of the Adapted Version of the Children's Palliative Outcome Scale: A Qualitative Pilot Study

Journal of Palliative Medicine, 2021

Objective: To assess the face and content validity, acceptability and feasibility of a French ver... more Objective: To assess the face and content validity, acceptability and feasibility of a French version of the Children's Palliative Outcome Scale (CPOS). Background: Instruments in French used to measure outcomes in pediatric palliative care are lacking. Methods: After forward-backward translation of the 12-item English CPOS to French, we conducted a qualitative pilot study. During semi structured interviews among children and parents, we used the CPOS, the Schedule for the Evaluation of Individual Quality of Life interview guide (SEIQoL) and the Quality of Life in Life-threatening Illness-Family Carer questionnaire (QOLLTI-F), in addition to three expert meetings with PLTs. Results: Fourteen children and adolescents (8-18 years) with life-limiting or life-threatening conditions cared for at home, in hospital or in respite care services, 19 parents, and 9 members of 4 pediatric liaison teams (PLTs) providing palliative care in a Belgian francophone region were included in the study. No families refused to participate. All children with verbal capacities chose to be interviewed in the presence of their parents and a PLT member. The children valued being given the opportunity to share their experiences. New QOL dimensions pertaining to social, emotional, and administrative health-care related issues were added to the original version of the 12-item CPOS, leading to a 22-item CPOS-2. Discussion: The CPOS-2 was perceived as relevant and easy to use by the principal stakeholders. Our study paves the way for a large-scale field study assessing its psychometric characteristics and its implementation in routine clinical care.

Research paper thumbnail of Transforming Vulnerability into Power: Exploring Empowerment among Women with Female Genital Mutilation/Cutting (FGM/C) in the Context of Migration in Belgium

Journal of Human Development and Capabilities, 2019

This paper discusses an aspect of empowerment in relation to the central human capabilities for w... more This paper discusses an aspect of empowerment in relation to the central human capabilities for women with FGM/C in the diaspora. Many women who have undergone the practice of FGM/C come from societies where gender inequalities and gender-based discrimination between men and women persist, which compromises their capabilities, and many find themselves in vulnerable positions in their relationships with men, at work and in their everyday-life. The participants in this study however appeared somehow to have been empowered through certain health-promoting activities where they exercised agency in the western social context, they reside in. This paper examines the empowerment gained by the migrant women with FGM/C after participating in health-promoting activities. We compared this form of empowerment to the reinforcement of their capabilities according to Nussbaum's central human capabilities. Drawing on Nussbaum's list as a starting point we explore the relationship between capabilities and empowerment. We found that some central human capabilities appeared to be reinforced through health-promoting activities, whereas issues relating to asylum seeking became a

Research paper thumbnail of La qualité de vie des enfants en contexte palliatif, comment la documenter ? Peut-on la mesurer ?

Médecine Palliative, 2019

Resume Les soins palliatifs pediatriques visent a promouvoir la meilleure qualite de vie des enfa... more Resume Les soins palliatifs pediatriques visent a promouvoir la meilleure qualite de vie des enfants. Cependant, mesurer cette qualite de vie, qui est un construit hautement subjectif et multidimensionnel, est complexe car il faut tenir compte de l’heterogeneite des maladies, des âges, des trajectoires de soins ainsi que des types d’interventions. Actuellement, la plupart des instruments de mesure ne tiennent pas suffisamment compte de la perspective des enfants au sujet de ce qui est important pour eux. De plus, la pertinence de certaines proprietes psychometriques des outils standardises existants a ete questionnee dans le contexte particulier des soins palliatifs pediatriques.

Research paper thumbnail of Appropriate care at the end of life. Report number 296

Appropriate care at the end of life

Research paper thumbnail of Use and perception of information sources on COVID-19 measures by citizens of Belgium

Frontiers in Communication

BackgroundThe effectiveness of adherence to COVID-19 infection prevention and control (IPC) measu... more BackgroundThe effectiveness of adherence to COVID-19 infection prevention and control (IPC) measures depends on effective risk communication. This study assessed use and perception of COVID-19 information sources and channels in Belgium, and the relationship with adherence to measures.MethodsData were collected through an online questionnaire among a sample of 2008 respondents, representative for citizens of Belgium in terms of gender, age, socio-economic status, and region. Potential information sources named in the questionnaire were politicians, experts, journalists, and close contacts.ResultsOverall, experts contributed most to informing people on COVID-19 measures, and their information was considered clearest and most trustworthy, while politicians scored lowest for information clarity. All information channels were used by large proportions of respondents, namely television 80.2%, (online) newspapers 56.5%, radio 35.7% and social media 27.7%. Factors that contributed signific...

Research paper thumbnail of The quality of life of children facing life limiting conditions and of their parents in Belgium: a cross sectional study

Background: Paediatric palliative care (PPC) aims to improve the quality of life of children, how... more Background: Paediatric palliative care (PPC) aims to improve the quality of life of children, however, this objective is rarely measured in clinical care. PPC is provided in Belgium through 6 transmural paediatric liaison teams (PLTs) ensuring continuity of care for children with life-limiting or life-threatening conditions (LLC/LTC). This study aims to measure the quality of life (QoL) of children with LLC/LTC monitored by PLT and the QoL of their parents.Methods: During interviews with children and parents, an original sociodemographic questionnaire, the Children Palliative Outcome Scale – version 2 (CPOS-2), the Fragebogen für Kinder und Jugendliche zur Erfassung der gesundheitsbezogenen Lebensqualität (KINDL) and the Quality of Life in Life-threatening Illness-Family Caregivers (QOLLTI-F) were completed by PLT members. Descriptive statistics were conducted on the sociodemographic data and the CPOS-2 and QOLLTI-F scores. The association between clinicians’ judgement of QoL and th...

Research paper thumbnail of Changing attitudes towards female genital mutilation. From conflicts of loyalty to reconciliation with self and the community: The role of emotion regulation

PLOS ONE

The practice of female genital mutilation (FGM) is a social norm embedded in the patriarchal syst... more The practice of female genital mutilation (FGM) is a social norm embedded in the patriarchal system and is resistant to change due to its roots in the tradition of the practising communities. Despite this difficulty in change, some women succeed in changing their attitudes towards the practice. In trying to understand what makes these women change their attitudes, we identified in a previous study, the critical life events at which change occurs (turning point). These turning points were described with emotions and conflicting feelings based on which we hypothesised that emotion regulation and the resolution of conflicts of loyalty might be possible mechanisms that explain the change of attitudes by the women. In this article, we sought to investigate how the mechanisms interact and how they were at play to explain the change. We, therefore, triangulated our previous data, fifteen women interviewed twice, with the published life stories and public testimonies of 10 women with FGM, a...

Research paper thumbnail of Psychosocial assessment of complex multicultural situations in paediatric liver transplantation with living donors: the benefits of a systemic approach

From 1984 to 2018, 1115 paediatric liver transplantations have been performed, of which 433 with ... more From 1984 to 2018, 1115 paediatric liver transplantations have been performed, of which 433 with living donors. With patients coming from 13 different countries, our centre has a strong international dimension. The Live Organ Donor Consensus Group has formulated a statement according to which “a psychological evaluation is necessary for each potential donor”[i]. In our centre, we systematically conduct pre-transplant psychological assessments, which consist in a clinical family interview. The complexity of the family situations having increased over the last few years, we aimed to address the relevance and efficiency of our pre-transplant interviews. Methods: Content analysis of 130 pre-transplant reports written between 1/07/2014 and 31/10/2018 were reviewed, as well as personal prospective notes by the psychologist, in the follow-up of the families after transplantation during the same period, with a systemic attention to the transplanted child’s family. Results: Our reflective wo...

Research paper thumbnail of Quels sont les principaux facteurs d'adaptation psychosociale à la maladie et au traitement chez les enfants et les adolescents atteints de maladies chroniques ?

Research paper thumbnail of Additional file 2 of "When my mother called me to say that the time of cutting had arrived, I just escaped to Belgium with my daughter": identifying turning points in the change of attitudes towards the practice of female genital mutilation among migrant women in Belgium

Additional file 2. Interview guide.

Research paper thumbnail of Additional file 1: of End-of-life decisions and practices for very preterm infants in the Wallonia-Brussels Federation of Belgium

Contains a printed version of the original online questionnaire in French. Authors are happy to h... more Contains a printed version of the original online questionnaire in French. Authors are happy to help with the translation of the questionnaire on request. (PDF 103 kb)

Research paper thumbnail of Additional file 2 of "When my mother called me to say that the time of cutting had arrived, I just escaped to Belgium with my daughter": identifying turning points in the change of attitudes towards the practice of female genital mutilation among migrant women in Belgium

Additional file 2. Interview guide.

Research paper thumbnail of Additional file 1 of "When my mother called me to say that the time of cutting had arrived, I just escaped to Belgium with my daughter": identifying turning points in the change of attitudes towards the practice of female genital mutilation among migrant women in Belgium

Additional file 1. A construction of a 'lifeline' from a fictive vignette of a typical re... more Additional file 1. A construction of a 'lifeline' from a fictive vignette of a typical reconstructed story from different participants after the 1st and 2nd interviews.

Research paper thumbnail of Ecouter et analyser la parole du patient

Research paper thumbnail of Maladie chronique et identité personnelle : adaptation ou création ?

Research paper thumbnail of Le don vivant parental en transplantation pédiatrique: la question du consentement du receveur

Research paper thumbnail of Entendre la voix du patient – Patient Empowerment

Research paper thumbnail of From research ‘on’ to research ‘with’ children about their family lives: A scoping review of ethical and methodological challenges

Child: Care, Health and Development, 2021

Since the Convention on the Rights of the Child in 1989 (UN General Assembly, 1989), interest in ... more Since the Convention on the Rights of the Child in 1989 (UN General Assembly, 1989), interest in the ethical and methodological challenges involved in conducting research with children has increased considerably. Researchers who work with children have to take into account children's intrinsic physical, mental and emotional vulnerability as well as their interdependence with other family members, particularly their parents. This is especially challenging in research that seeks to explore children's lived experience in relation to aspects of their family lives. We aimed to identify specific ethical issues and ways of overcoming challenges in conducting research with children on some aspects of their family lives. We conducted a scoping review according to the PRISMA Extension for Scoping Reviews Checklist (Tricco et al., 2018). Seventeen publications were selected for data extraction and synthesis, 4 of which were original studies and 13 reflexive papers. Our results confirm that a research project that asks children about aspects of their family lives leads to a number of ethical tensions: while children depend on their parents and family to ensure that their safety and physical needs are met, they also greatly contribute to the development of family dynamics. We highlight methodological strategies that allow researchers to mitigate the ethical challenges that are inherent to this type of research. A promising approach is to use participative methods at each stage of research, including developing a trusting and triadic partnership that includes parents, children, a multidisciplinary research team, and professional gatekeepers. Benefits as well as possible risks for participants should also be considered when children and their parents are engaged in a study.

Research paper thumbnail of Empowerment du patient : possibilités et limites pour la pratique de l’éducation du patient

Research paper thumbnail of “Le développement de la e-santé: des promesses initiales aux enseignements actuels quant aux conditions de son succès pour les partenaires de la relation de soin”

info:eu-repo/semantics/publishe

Research paper thumbnail of Face and Content Validity, Acceptability, and Feasibility of the Adapted Version of the Children's Palliative Outcome Scale: A Qualitative Pilot Study

Journal of Palliative Medicine, 2021

Objective: To assess the face and content validity, acceptability and feasibility of a French ver... more Objective: To assess the face and content validity, acceptability and feasibility of a French version of the Children's Palliative Outcome Scale (CPOS). Background: Instruments in French used to measure outcomes in pediatric palliative care are lacking. Methods: After forward-backward translation of the 12-item English CPOS to French, we conducted a qualitative pilot study. During semi structured interviews among children and parents, we used the CPOS, the Schedule for the Evaluation of Individual Quality of Life interview guide (SEIQoL) and the Quality of Life in Life-threatening Illness-Family Carer questionnaire (QOLLTI-F), in addition to three expert meetings with PLTs. Results: Fourteen children and adolescents (8-18 years) with life-limiting or life-threatening conditions cared for at home, in hospital or in respite care services, 19 parents, and 9 members of 4 pediatric liaison teams (PLTs) providing palliative care in a Belgian francophone region were included in the study. No families refused to participate. All children with verbal capacities chose to be interviewed in the presence of their parents and a PLT member. The children valued being given the opportunity to share their experiences. New QOL dimensions pertaining to social, emotional, and administrative health-care related issues were added to the original version of the 12-item CPOS, leading to a 22-item CPOS-2. Discussion: The CPOS-2 was perceived as relevant and easy to use by the principal stakeholders. Our study paves the way for a large-scale field study assessing its psychometric characteristics and its implementation in routine clinical care.

Research paper thumbnail of Transforming Vulnerability into Power: Exploring Empowerment among Women with Female Genital Mutilation/Cutting (FGM/C) in the Context of Migration in Belgium

Journal of Human Development and Capabilities, 2019

This paper discusses an aspect of empowerment in relation to the central human capabilities for w... more This paper discusses an aspect of empowerment in relation to the central human capabilities for women with FGM/C in the diaspora. Many women who have undergone the practice of FGM/C come from societies where gender inequalities and gender-based discrimination between men and women persist, which compromises their capabilities, and many find themselves in vulnerable positions in their relationships with men, at work and in their everyday-life. The participants in this study however appeared somehow to have been empowered through certain health-promoting activities where they exercised agency in the western social context, they reside in. This paper examines the empowerment gained by the migrant women with FGM/C after participating in health-promoting activities. We compared this form of empowerment to the reinforcement of their capabilities according to Nussbaum's central human capabilities. Drawing on Nussbaum's list as a starting point we explore the relationship between capabilities and empowerment. We found that some central human capabilities appeared to be reinforced through health-promoting activities, whereas issues relating to asylum seeking became a

Research paper thumbnail of La qualité de vie des enfants en contexte palliatif, comment la documenter ? Peut-on la mesurer ?

Médecine Palliative, 2019

Resume Les soins palliatifs pediatriques visent a promouvoir la meilleure qualite de vie des enfa... more Resume Les soins palliatifs pediatriques visent a promouvoir la meilleure qualite de vie des enfants. Cependant, mesurer cette qualite de vie, qui est un construit hautement subjectif et multidimensionnel, est complexe car il faut tenir compte de l’heterogeneite des maladies, des âges, des trajectoires de soins ainsi que des types d’interventions. Actuellement, la plupart des instruments de mesure ne tiennent pas suffisamment compte de la perspective des enfants au sujet de ce qui est important pour eux. De plus, la pertinence de certaines proprietes psychometriques des outils standardises existants a ete questionnee dans le contexte particulier des soins palliatifs pediatriques.