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2.
Front Public Health ; 12: 1340748, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38751584

RESUMO

Introduction: Parental burnout, known as a state of physical and psychological exhaustion, results in an imbalance between the parent's perceived stressors in relation to parenting, and the resources available to the parent to cope with such stressors. The causes and consequences of parental burnout for the parents themselves have been studied from the parents' point of view, but the perception of parents regarding the impact of parental burnout on the parent-child relationship has not yet been documented. Methods: We conducted a qualitative study through semi-structured interviews with exhausted parents (n=21). We aimed to better understand their general interactions with their children, as well as the way they communicate with them about their state of exhaustion, knowing that dealing with parental suffering can have a long-term impact on the child. Results: Our results reveal that exhausted parents experience a widespread loss of control in all areas of their lives, particularly in their interaction with their children, which generates feelings of guilt and shame. Communicating their experience to their children can create various difficulties for both parents and children. This may complicate the process of seeking help and reinforce the feeling of isolation. Discussion: An emerging result from our analysis leads us to identify a need for the parents to be heard and validated in their suffering who took part in this research.


Assuntos
Relações Pais-Filho , Pais , Pesquisa Qualitativa , Humanos , Feminino , Masculino , Pais/psicologia , Adulto , Criança , Pessoa de Meia-Idade , Entrevistas como Assunto , Esgotamento Psicológico/psicologia , Poder Familiar/psicologia , Adaptação Psicológica , Estresse Psicológico/psicologia
3.
Arch Public Health ; 82(1): 40, 2024 Mar 18.
Artigo em Inglês | MEDLINE | ID: mdl-38500212

RESUMO

BACKGROUND: The current literature highlights a strong link between the poor health outcomes of transgender and gender diverse (TGD) individuals and their negative experiences in various areas of life. Most of these publications rely on adults' memories, lacking a focus on the current experiences and needs of young transgender and gender-diverse individuals. Furthermore, previous studies on support for these young people often solely consider the perspectives of TGD adults or professionals and rarely involve parents' viewpoints. METHODS: This study will use a mixed sequential method with a participatory approach. Firstly, the qualitative phase will explore the difficulties and needs of TGD (15-20 years old) and of the families and professionals who support them. Results from this part will be used to develop the questionnaire for the quantitative phase, with the help of a community board. Secondly, based on participatory epidemiological research, the quantitative phase will use an intersectional perspective to measure the impact of individual and structural factors on the quality of life and well-being of transgender and gender-diverse young people. Finally, a co-creation phase will be undertaken to formulate recommendations based on the results of the first two phases. DISCUSSION: This research aims at better understanding the influence of gender identity on the quality of life and health of TGD young people and their families and to identify protective and risk factors that affect their vulnerabilities. ETHICS AND DISSEMINATION: This study has been approved by the Ethics Committee of the Erasme Faculty Hospital (CCB B4062023000140). As this research is participatory and part of a PhD dissertation, we aim to disseminate the results through our partners' networks and structures locally, and internationally through conferences and peer-reviewed journals.

4.
Gerontologist ; 64(4)2024 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-37846520

RESUMO

BACKGROUND AND OBJECTIVES: The aim of this study was to adapt and validate the Ambivalent Ageism Scale (AAS) among paramedical students for use in the health care sector. RESEARCH DESIGN AND METHODS: A cross-sectional study was conducted among the following paramedical students: physiotherapy, occupational therapy, and nursing students. A total of 6 items were added based on the literature and the scale was evaluated by students and professors with experience working with older adults. The following psychometric properties were evaluated: internal consistency, concurrent validity, structural validity (exploratory factor analysis), and reliability. RESULTS: A total of 265 students participated: 19.2% physiotherapy students, 27.5% occupational therapy students, 50.6% nursing students, and 2.6% other paramedical students. The concurrent validity study showed a significant correlation between AAShc (Ambivalent Ageism Scale in the health care sector) and UCLA-GAS-F (French version of the University of California, Los Angeles Geriatric Attitudes Scale) with r (265) = 0.491 (p < .001). The factor analyses produced an 18-item (α = 0.866) scale composed of 5 factors: Infantilization (5 items, α = 0.766), Control (2 items, α = 0.789), Overaccommodation (2 items, α = 0.829), Unwanted help (2 items, α = 0.656), and Hostile Ageism (7 items, α = 0.717). Finally, the generalizability analysis revealed a G-coefficient of 0.86, a Phi-coefficient of 0.83, and a standard error of measurement of 2.31%. DISCUSSION AND IMPLICATIONS: The AAShc appears to be a valid and reliable scale to measure ageism among paramedical students. This scale can be a useful tool to reduce ageism toward older adults in the health care sector.


Assuntos
Etarismo , Humanos , Idoso , Estudos Transversais , Reprodutibilidade dos Testes , Setor de Assistência à Saúde , Inquéritos e Questionários , Psicometria
5.
PLoS One ; 18(11): e0293947, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37956164

RESUMO

BACKGROUND: Adolescent transition programs are patient education programs. They are geared towards enabling adolescents with chronic or long-term illnesses to become active partners in their health care and manage their own health. Although there is agreement about their importance, there is not an agreement on content or how they should be delivered. The study reported here was part of the first steps of an action research project. AIM: Our aim was to explore how health professionals understand the program at our hospital, and their opinions of its implementation. This would advance our knowledge of the practice of the program to support its development. METHODS: We conducted semi-structured individual interviews with 18 physicians and nurses. Data were analysed using qualitative content analysis. In our discussion of the generated data, we use the theory of practice architectures as a lens. RESULTS AND DISCUSSION: We generated four themes through the analysis, namely "We are (back) at scratch", "Time is always an issue", "Getting them ready for what is to come-transition as a synonym to transfer" and "Raising topics that go beyond medical issues". Changes to a practice requires changes to the practice architectures. Practice architectures can both enable and constrain a practice. Our analysis suggests a need for a more unified perception of the program goals, the cultural-discursive arrangements. Health professionals see time as a significant barrier to implementation and changes to the material-economic arrangements are particularly called for, i.e., more time, space and staff to practice the program. These also tie into the social-political arrangements of the program. CONCLUSION: There are arrangements in the practice architecture that currently seem to constrain the practice of the program. The practice is currently fragmented both within and across subspecialties. Efforts should be made to establish a more shared understanding of the program among health professionals. Furthermore, we should investigate how the practice of the program can be better supported.


Assuntos
Médicos , Percepção do Tempo , Humanos , Adolescente , Seguimentos , Atenção à Saúde , Pessoal de Saúde
6.
Children (Basel) ; 10(7)2023 Jul 05.
Artigo em Inglês | MEDLINE | ID: mdl-37508664

RESUMO

BACKGROUND: Paediatric palliative care (PPC) aims to improve children's quality of life, but this outcome is rarely measured in clinical care. PPC is provided in Belgium through six 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 followed-up by PLTs and the QoL of their parents. METHODS: During interviews, an original socio demographic 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 caregiver (QOLLTI-F) were filled in by PLT members. Statistics were used to investigate significant differences between scores. Results were discussed and interpreted with six PLTs. RESULTS: 73 children aged 1-18 were included in the study. Especially for items focusing on emotional items, children reported their QoL as higher than their parents did. The QoL scores were not significantly associated with the child's condition's severity. CONCLUSIONS: This study provides, for the first time, an overview of the QoL of children and parents followed-up by PLTs in Belgium.

7.
BMC Health Serv Res ; 22(1): 1589, 2022 Dec 28.
Artigo em Inglês | MEDLINE | ID: mdl-36575470

RESUMO

BACKGROUND: To understand better what influences the practice of our transition program, we wanted to explore the underlying theory of health. METHODS: We performed a qualitative content analysis of the written material that guides the program, comprising a quality system guideline, two checklists, a guide to health professionals and managers, and three patient brochures. RESULTS: The analysis resulted in the formulation of three themes; "Being on top of medical management", "Ability to promote own health" and "Awareness of own goals and expectations". CONCLUSION: Our analysis indicates that the program content revolves mainly around medical management and that other dimensions of health are not emphasised. We question what the goals of the program are and if these goals are explicit and shared among the program stakeholders. An explicit program theory is vital and needs to be evident in material supporting transition programs.


Assuntos
Saúde do Adolescente , Pessoal de Saúde , Adolescente , Humanos , Hospitais Universitários , Pesquisa Qualitativa , Saúde , Doença Crônica , Educação de Pacientes como Assunto , Transição Epidemiológica
8.
Health Promot Int ; 37(5)2022 Oct 01.
Artigo em Inglês | MEDLINE | ID: mdl-36166263

RESUMO

This scoping review aims to give a narrative account of existing realist evaluation practices in health promotion. Realist evaluations of health promotion interventions published between 2010 and 2021 were identified by searching five academic databases: Embase, Pubmed, PsycINFO, ScienceDirect and Scopus. A data-charting form was created based on the characteristics of realist evaluation and four core features of an approach appropriate for evaluating health promotion interventions. Seventeen articles met the inclusion criteria. These were classified into two types of studies: those aiming to build an initial program theory and those aiming to test an initial program theory. Our results revealed a great variety of realist evaluation practices and uncovered a growing interest in realist evaluation over the years. Our searches identified a lack of participative practice and capacity-building intention. Our examination of the data collection and analysis methods points to some common practices in using multi-methods. Perspectives on realist evaluation practices and on assessing the effectiveness of health promotion have been identified.


This scoping review aims to critically examine current practices of realist evaluation in the field of health promotion with respect to four core features of an approach appropriate for evaluating health promotion initiatives, namely the need to accommodate the complex nature of health promotion interventions; drawing on a variety of disciplines and a broad range of information-gathering procedures; involving stakeholders in the evaluation; and building capacity for addressing health promotion concerns. Seventeen articles met the inclusion criteria. These were classified into two types of studies: those aiming to build an initial program theory, and those aiming to test an initial program theory. Our results suggest that the use of a realist evaluation approach in the field of health promotion is guided mainly by the need to accommodate the complex nature of health promotion interventions. Our searches identified a lack of participative practice and capacity-building intention in current practice. Our examination of the data collection and analysis methods points to some common practices in using multi-methods. Perspectives on more meaningful practices of realist evaluation and on more relevant evaluation practices of the effectiveness of health promotion have been identified.


Assuntos
Fortalecimento Institucional , Promoção da Saúde , Coleta de Dados , Promoção da Saúde/métodos , Humanos
9.
PLoS One ; 17(6): e0270088, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35727746

RESUMO

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, and interviews of six experts chosen for their complementary fields of expertise to discuss the emerging concepts and theory, generated by our study. The data were analysed using framework analysis and an element of the grounded theory approach (constant comparison). As a result of our theorisation process, we propose a model of change in five stages (Emotion suppression, The awakening, The clash, Re-appropriation of self, and Reconciliation). This describes the process of a woman's journey from compliance with FGM and community norms to non-compliance. Our study reveals how the women whose stories were analysed, moved from being full members of their community at the cost of suppressing their emotions and denying their selves, to becoming their whole selves while symbolically remaining members of their communities through the forgiveness of their mothers.


Assuntos
Circuncisão Feminina , Regulação Emocional , Circuncisão Feminina/psicologia , Emoções , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Mães/psicologia
10.
Artigo em Inglês | MEDLINE | ID: mdl-35627665

RESUMO

Therapeutic patient education (TPE) aims to empower the patients and their caregivers to effectively care for and manage their conditions. Such educational programs have been shown to improve health behaviors, disease outcomes, and quality of life among different patient populations. The field of TPE has evolved extensively over decades, owing to interdisciplinary research. No study so far has been done to map this field, to identify the stakeholders and gaps requiring future research. By leveraging the theory of co-citation, CiteSpace was used to visualize the bibliographic data pertaining to TPE research. A total of 54,533 articles published in English language were analyzed to identify influential funders, regions, and institutes contributing to this field. Besides these, significant theoretical and empirical contributions that shaped this field were mapped. Our analysis revealed several important insights. Most of the important theories that helped shape TPE were inspired from the social sciences. Five important research themes were identified: disorders, study designs utilized in TPE research, the scope of the TPE literature and outcomes, and populations. The research focused on improving perceptions, behaviors, and attitudes toward health promotion, reducing stigma, self-management and medication adherence. Most of the research was developed in the context of high-income countries. Future research should involve patients and use digital technology. Meta-analytical studies need to be done to identify the effectiveness and moderators of TPE interventions across different disorders. Further research should involve low and middle-income countries (LMIC) to ensure knowledge and technology transfer.


Assuntos
Educação de Pacientes como Assunto , Qualidade de Vida , Promoção da Saúde , Humanos , Pobreza , Estigma Social
11.
BMC Public Health ; 22(1): 245, 2022 02 07.
Artigo em Inglês | MEDLINE | ID: mdl-35125099

RESUMO

BACKGROUND: Since the onset of the COVID-19 pandemic, Belgium has been hit by a series of surges in the number of COVID-19 cases. Each of these resulted in more stringent measures being taken to curb the pandemic. This study compared perception of and adherence to COVID-19 measures of the Belgian population at two time periods: September 2020 (survey 1) and April/May 2021 (survey 2). METHODS: Two samples of approximately 2000 participants, representative for the Belgian population in terms of gender, age, province and socio-economic status, participated in an online survey. The survey questionnaire measured the perceived infection risk and severity, and the perception of and adherence to protective measures. Answers were compared between the time periods and risk factors for lower adherence were identified using multivariate linear regression. RESULTS: In survey 2, at which time the measures were more stringent, respondents assessed the risk of infection for themselves as lower, and for parents and grandparents as higher than in survey 1. Scores for understanding and usefulness of the measures were higher in survey 2 compared to survey 1, while reported past and future adherence were lower. Risk factors for a lower adherence were being male, being young, speaking French vs. Dutch, and having undergone a symptomatic infection. CONCLUSIONS: It is important to consider the potential effect of fatigue among the population with regards to measures that are sustained for a long time, especially regarding measures related to social contacts. The identified risk factors for lower adherence offer insights to policy makers for future crisis communication regarding COVID-19.


Assuntos
COVID-19 , Bélgica/epidemiologia , Humanos , Masculino , Pandemias , Percepção , SARS-CoV-2 , Inquéritos e Questionários
12.
Child Care Health Dev ; 48(2): 203-216, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-34859480

RESUMO

BACKGROUND: Since the Convention on the Rights of the Child in 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. OBJECTIVE: We aimed to identify specific ethical issues and ways of overcoming challenges in conducting research with children on some aspects of their family lives. METHODS: We conducted a scoping review according to the PRISMA Extension for Scoping Reviews Checklist. Seventeen publications were selected for data extraction and synthesis, 4 of which were original studies and 13 reflexive papers. RESULTS: 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. DISCUSSION/CONCLUSION: 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.


Assuntos
Relações Familiares , Família , Criança , Família/psicologia , Humanos , Pais/psicologia
13.
Artigo em Inglês | MEDLINE | ID: mdl-34639503

RESUMO

To reduce the spread of COVID-19 among the population, Belgium has implemented various infection prevention and control measures over time. This study investigated the extent to which understanding of the COVID-19 measures contributed to adherence, and which personal characteristics were considered risk factors for lower adherence. It consisted of a large online survey among a sample of the population (n = 2008), representative of citizens of Belgium in terms of gender, age, province and socio-economic status. The survey was conducted in September 2020, and included questions on perceived and actual understanding of COVID-19 protective measures in place during that time, as well as past and future adherence to those measures. The results showed that both perceived and actual understanding contributed significantly to past as well as future adherence. Risk factors for perceived understanding included being male and belonging to a younger age group, while risk factors for actual understanding were speaking French (versus Dutch) and belonging to a lower socio-economic level. Communication about COVID-19 measures should put more focus on trying to improve the understanding of the measures, instead of only making them known, particularly for those who are less health literate and as such at risk of poor understanding.


Assuntos
COVID-19 , Bélgica , Estudos Transversais , Humanos , Masculino , SARS-CoV-2 , Inquéritos e Questionários
14.
BMC Health Serv Res ; 21(1): 965, 2021 Sep 14.
Artigo em Inglês | MEDLINE | ID: mdl-34521415

RESUMO

BACKGROUND: Managing older people in the emergency department remains a challenge. We aimed to identify the factors influencing the care quality of older patients in the emergency department, to fine-tune future interventions for older people, considering the naturalistic context of the ED. METHODS: This is a qualitative study of some 450 h of observations performed in three emergency departments selected for their diverse contexts. We performed seventy observations of older patient trajectories admitted to the emergency department. Themes were extracted from the material using an inductive reasoning approach, to highlight factors positively or negatively influencing management of patient's trajectories, in particular those presenting with typically geriatric syndromes. RESULTS: Four themes were developed: no geriatric flow routine; risk of discontinuity of care; unmet basic needs and patient-centered care; complex older patients are unwelcome in EDs. CONCLUSIONS: The overall process of care was based on an organ- and flow-centered paradigm, which ignored older people's specific needs and exposed them to discontinuity of care. Their basic needs were neglected and, when their management slowed the emergency department flow, older people were perceived as unwelcome. Findings of our study can inform the development of interventions about the influence of context and organizational factors.


Assuntos
Serviço Hospitalar de Emergência , Hospitalização , Idoso , Humanos , Pesquisa Qualitativa , Qualidade da Assistência à Saúde
15.
Health Expect ; 24(4): 1044-1055, 2021 08.
Artigo em Inglês | MEDLINE | ID: mdl-33991369

RESUMO

BACKGROUND: As part of a research project aimed at evaluating a hospital-based adolescent transition programme, we asked ourselves what is known about the ethical and methodological challenges of research involving adolescent patients as co-researchers. The aim of our review was to summarize empirical evidence and identify knowledge gaps about the involvement of young patients as co-researchers. METHODS: We conducted a scoping review through searches in MEDLINE, EMBASE, PsychINFO, AMED. RESULTS: We found reports of young patients being actively engaged as co-researchers in any stage of a research project, although commonly they were not involved in every stage. Including young patients as co-researchers is resource demanding and time-consuming. Involving young patients as co-researchers contributes to the fulfilment of their right to participation and may improve the relevance of research. Benefits for the young co-researcher include empowerment, skills building and raised self-esteem. Few authors go into detail about ethical considerations when involving young co-researchers. None of the included articles discuss legal considerations. DISCUSSION AND CONCLUSION: No lists of recommendations are given, but recommendations can be deduced from the articles. There is need for time, funding and flexibility when including young patients as co-researchers. Knowledge gaps concern legal and ethical dilemmas of including a vulnerable group as co-researchers. More reflection is needed about what meaningful participation is and what it entails in this context. PATIENT OR PUBLIC CONTRIBUTION: This review is part of a research project where the hospital youth council has been involved in discussions of focus area and methods.


Assuntos
Projetos de Pesquisa , Pesquisadores , Adolescente , Humanos , Adulto Jovem
16.
Arch Public Health ; 79(1): 74, 2021 May 12.
Artigo em Inglês | MEDLINE | ID: mdl-33980316

RESUMO

BACKGROUND: Since the start of the COVID-19 outbreak, the Belgian government has implemented various infection prevention and control measures. This study assessed the extent to which the general population in Belgium adhered to these measures, and which determinants were associated with adherence. METHODS: We undertook an internet survey among a sample of the Belgian population, representative for sex, age, socio-economic status and province. The questionnaire included various demographic, socio-economic and health-related questions, and also drew upon the Protection Motivation Theory as a theoretical framework to measure levels of perceived severity, vulnerability, perceived usefulness of the measures (response efficacy), perceived personal capacity to adhere (self-efficacy), and past and future adherence. Data were collected in Dutch and French, the main languages of Belgium. RESULTS: Our study was carried out in September 2020, and the number of respondents was 2008. On average, respondents provided high scores for each of the measures in place in September in terms of response efficacy (range of 3.54-4.32 on 1 to 5 Likert-scale), self-efficacy (range of 3.00-4.00), past adherence (4.00-4.68) and future adherence (3.99-4.61). The measure that overall received the highest scores was wearing a face mask in public spaces, while 'the social bubble of 5' generally received the lowest scores. There was a statistically significant relationship between response efficacy and self-efficacy on the one hand and (past and future) adherence on the other hand, in a multivariate model corrected for confounders. Vulnerability and severity did not show statistical significance. CONCLUSION: Risk communication regarding COVID-19 should place a stronger emphasis on helping people understand why implemented measures are useful and how they can be put into practice, more than on increasing fear appeals.

17.
Front Public Health ; 9: 602509, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33718318

RESUMO

Background: Resilient hospitals are increasingly recognized as a cornerstone of disaster reduction in global policies such as the Sendai Framework for Action. However, current hospital resilience frameworks emerged from pre-disaster conceptualizations, and have not been verified in real-life disaster contexts nor in the frontlines. Our aim was to study a tertiary hospital's resilience after the 2015 earthquake in Nepal, as experienced by its staff. Methods: We undertook a qualitative study in the Tribhuvan University Teaching Hospital (TUTH), where we conducted 18 semi-structured interviews with hospital staff. We inductively created themes to describe the earthquake burden to the hospital, and to analyze individual resilience of hospital staff. In addition, we deductively documented the resilience of the hospital as a system, according to the system resilience dimensions: means of resilience (redundancy and resourcefulness), and ends of resilience (robustness and rapidity). Results: In terms of robustness, TUTH increased its capacity for earthquake victims as elective activities were temporarily interrupted and quality of care was not a priority. Three stages of rapidity were identified: critical rapidity to address immediate needs, stabilizing rapidity until the hospital re-started routine activities, and recovery rapidity. In addition to the disaster plan, emerging adaptations played a major role in redundancy and resourcefulness. We found that individual resilience depended on three determinants: safety, meaningfulness, and sense of belonging. Conclusions: Hospital resilience results from a complexity of emerging and planned adaptations, as well as from interdependencies with individual resilience. Frameworks and plans to improve hospital resilience must reflect flexibility of response, and a concern for well-being of hospital staff is central for sustainable disaster response and improved resilience.


Assuntos
Desastres , Terremotos , Hospitais , Humanos , Nepal , Recursos Humanos em Hospital
18.
J Palliat Med ; 24(2): 181-188, 2021 02.
Artigo em Inglês | MEDLINE | ID: mdl-32679002

RESUMO

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.


Assuntos
Cuidados Paliativos , Qualidade de Vida , Adolescente , Criança , Estudos de Viabilidade , Humanos , Projetos Piloto , Psicometria , Inquéritos e Questionários
19.
Eur J Gen Pract ; 26(1): 146-153, 2020 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-33078644

RESUMO

BACKGROUND: To deliver optimal palliative care, a Care Pathway for Primary Palliative Care (CPPPC) was developed. This CPPPC was implemented by general practitioners (GPs) in territories of five Belgian palliative care networks (2014-2016). Belgian doctors have much therapeutic freedom, and do not commonly follow guidelines. OBJECTIVES: To assess how palliative care was provided by GPs before the CPPPC and its implementation project were presented publicly. METHODS: Between 2013 and 2015, seven focus groups with GPs were conducted. Participants included 15 GPs in three French-speaking focus groups and 26 GPs in four Dutch-speaking focus groups, with diversity for age, gender, palliative care experience and practice context. Some GPs implemented the CPPPC later. RESULTS: GPs considered each palliative care case unique and disliked strict protocols. However, they expressed a need for peer review and reflective frameworks. GPs felt it is important to identify palliative care patients 'timely', but found this difficult. Screening methods help, but are not widely used. GPs struggled most with identifying palliative care needs in non-oncological patients. Bad news breaking was considered difficult. Continuity of care was considered very important. However, advance care planning seemed more widely practised by Dutch-speaking GPs than by French-speaking GPs. The taboo of palliative care provoked emotional discussions. CONCLUSION: Palliative care frameworks which help GPs to deliver 'tailor-made' care have more chance to be adopted than strict protocols. GPs should be given education for bad news breaking. Palliative care and advance care planning practices differ locally: guideline dissemination plans should respect these local differences.


Assuntos
Clínicos Gerais , Necessidades e Demandas de Serviços de Saúde , Cuidados Paliativos , Atenção Primária à Saúde , Adulto , Idoso , Bélgica , Continuidade da Assistência ao Paciente , Feminino , Grupos Focais , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa
20.
Pan Afr Med J ; 36: 296, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-33117490

RESUMO

INTRODUCTION: in order to improve the safety of blood transfusion, the retention of voluntary donors remains a major concern in the Democratic Republic of Congo. Nevertheless, retention is still difficult to assess because of the lack of local studies. The present study establishes the donors' profile and regularity, as well as regularity-associated factors, at the Provincial Blood Transfusion Centre in Bukavu. METHODS: this descriptive and analytical cross-sectional study included the records of 387 out of 773 blood donors during the period from 2015 to 2017. Donor retention and its associated factors were measured. The composite approach used here considered the number of blood donations, their frequency, the previous regularity of donors and the inter-donation interval. RESULTS: we bring to light an important loss of regular voluntary donors in the centre. Only 23.8% of them were still regular donors in 2017. The majority of donors registered in the centre are young males and have no income. On the contrary, factors associated with the profile of a regular donor in 2017 were: age at least 46 years old, being a woman and working in the formal sector. The composite classification highlighted that an important proportion of former regular donors, namely 72.8% (N=161/221), had not given blood in 2017. CONCLUSION: the use of a composite classification to assess the regularity of voluntary blood donors provides more accurate information that will enable the improvement of donors' awareness and retention as well as the possible reinstatement of former donors.


Assuntos
Doadores de Sangue/estatística & dados numéricos , Seleção do Doador/métodos , Participação do Paciente/estatística & dados numéricos , Adulto , Doadores de Sangue/classificação , Segurança do Sangue/normas , Estudos Transversais , Bases de Dados Factuais , República Democrática do Congo/epidemiologia , Seleção do Doador/classificação , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Fatores Socioeconômicos , Voluntários/estatística & dados numéricos , Adulto Jovem
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