Motivations of children and their parents to participate in drug research: a systematic review

Information on motivations for research participation, may enable professionals to better tailor the process of recruitment and informed consent to the perspective of parents and children. Therefore, this systematic review assesses motivating and discouraging factors for children and their parents to decide to participate in clinical drug research. Studies were identified from searches in 6 databases. Two independent reviewers screened and selected relevant articles. Results were aggregated and presented by use of qualitative metasummary. 38 studies fulfilled the selection criteria and were of sufficient quality for inclusion in the qualitative metasummary. Most mentioned motivating factors for parents were: health benefit for child, altruism, trust in research, and relation to researcher. Most mentioned motivating factors for children were: personal health benefit, altruism and increasing comfort. Fear of risks, distrust in research, logistical aspects and disruption of daily life were mentioned most by parents as discouraging factors. Burden and disruption of daily life, feeling like a “guinea pig” and fear of risks were most mentioned as discouraging factors by children. Conclusion: Paying attention to these motivating and discouraging factors of children and their parents during the recruitment and informed consent process in drug research increases the moral and instrumental value of informed consent.What is known:• This systematic review pools the existing empirical literature on motivations of minors and their parents to consent or dissent to participation in clinical drug research.• The most mentioned motivating and discouraging factors for children and their parents to consent to participation in clinical drug research are identified aggregated and presented by use of qualitative metasummary.What is new:• This information can be used to adapt the research protocol, recruitment, and informed consent/assent process to the needs of children and their parents

Models of Recovery in Mental Illness

Background. Discourse on the possibility of recovery from serious mental illness has become increasingly dominant among mental health professionals. Mental health recovery has been conceptualized variously by researchers, practitioners, policy-makers, and persons with mental illness. Several systematic reviews have synthesized the experience of recovery from the perspective of persons with mental illness, and offer different models of recovery. This proposed overview aims to summarize the methodological characteristics of systematic reviews on mental health recovery and to synthesize models of recovery from the perspective of persons with mental illness. Design and analysis. The authors will use systematic review methods to identify and synthesize systematic reviews on the phenomenon of recovery in mental illness. A pre-specified search strategy will be used to search academic databases and libraries of the Campbell Collaboration, Cochrane Collaboration, and Joanna Briggs Institute for published and gray literature. Two authors will independently screen titles/abstracts and full texts. Authors will pilot the data extraction form before independently extracting data and appraising study quality. Reflexive thematic analysis, informed by a hermeneutic orientation towards the included texts, will be used to synthesize models of recovery presented in eligible studies. Discussion. This overview will synthesize systematic review evidence on consumer perspectives of mental health recovery. Findings could inform future research, clinical practice, and policy by elucidating similarities and differences in recovery models across demographic or diagnostic categories and identifying how environmental, interpersonal, and intrapersonal factors contribute to recovery. Systematic review registration: PROSPERO CRD4201914297

Being a bereaved parent : early bereavement experiences and perspectives on paediatric palliative care and bereavement services

La mort d'un enfant est considérée comme l'une des expériences les plus difficiles à laquelle une personne puisse faire face. Les cliniciens, les hôpitaux et plusieurs organismes ont pour objectif d’aider les parents endeuillés, mais leurs efforts sont compliqués par un manque de recherche dans le domaine du deuil parental. Cette thèse est composée de trois articles, soit deux revues de littérature et une étude empirique, qui tentent de combler cette lacune et d’informer les services en soins palliatifs pédiatriques et les services de soutien au deuil en particulier. Le premier article porte sur les besoins des patients recevant des soins palliatifs pédiatriques et de leurs familles. Par le biais d’un méta-résumé de la recherche descriptive et qualitative récente, 10 domaines de besoins ont été identifiés qui correspondent aux lignes directrices actuelles en soins palliatifs pédiatriques et de fin de vie. Ces besoins sont présentés de manière à être facilement applicables à la pratique. Cependant, les résultats mettent aussi en évidence plusieurs aspects des soins identifiés comme déficitaires ou problématiques qui mériteraient une attention particulière dans le cadre de politiques futures. Dans le deuxième article, l'objectif était de résumer une vaste littérature d'une manière utile aux cliniciens. À cette fin, une synthèse narrative a permis d’intégrer la recherche quantitative et qualitative dans le domaine du deuil parental. Les résultats mettent en évidence les éléments susceptibles de favoriser l’adaptation des parents au deuil, éléments qui suggèrent par le fait même des avenues possibles de soutien et d'intervention. Cette synthèse a cependant cerné dans la littérature certaines failles méthodologiques qui rendent l'applicabilité clinique des résultats difficile. L'objectif du troisième article était d'informer les services de suivi et de soutien au deuil auprès des parents en se renseignant directement auprès de parents endeuillés. À cette fin, 21 parents (dont 8 couples) et 7 membres du personnel impliqués dans des activités de suivi de deuil de 2 hôpitaux pédiatriques ont été interrogés dans le cadre d’une description interprétative, et l'application clinique des résultats a été vérifiée par le biais de réunions avec des collaborateurs de recherche et les décideurs des centres hospitaliers. Les résultats décrivent comment les parents ont fait face à leur détresse dans la phase précoce de leur deuil, ainsi que leurs points de vue sur la façon dont les divers services de suivi de deuil ont été aidants. Les résultats suggèrent que les parents gèrent leurs sentiments intenses de douleur par une alternance de stratégies axées soit sur leur deuil ou sur leur quotidien et que dans plusieurs cas leurs relations avec autrui les ont aidé. Cette étude a également permis d'élucider la façon dont divers services de soutien aide les parents à aborder leur deuil. Les implications cliniques de ces résultats sont discutées ainsi que des recommandations à l’intention de ceux qui sont impliqués dans la provision des services en deuil.The death of a child is considered one of the most stressful and difficult experiences a person can face. Clinicians, hospitals, and other organizations want to help and support bereaved parents through their grief, but their efforts are hampered by a lack of research in the area of parental bereavement. This dissertation is comprised of two literature reviews and one empirical study that attempt to address this gap and inform services in paediatric palliative care in general, and in bereavement support in particular. The first article consists of an examination of the needs of patients receiving paediatric palliative care and their families. By metasummarizing the descriptive and qualitative research in the area, 10 need domains were found. The results were generally in agreement with current guidelines in paediatric palliative and end-of-life care; however, there were several aspects of care that were reported as lacking or problematic that are not addressed in these guidelines and that should be considered in future guideline and policy creation. In the second article, parents’ adaptation to their grief and elements found to influence their adaptation were examined. The aim was to synthesize the relevant literature in a way that could be useful to clinicians; to this end, a narrative synthesis method was employed in order to synthesize both quantitative and qualitative research in the area of parental bereavement. The results suggest important elements to keep in mind when assessing how parents adapt to their grief. The results also suggest aspects related to better adaptation, which could serve as potential avenues for support and intervention. However, this review also demonstrated certain methodological issues in the literature that hinder the synthesis and clinical applicability of the findings. The objective of the third article was to inform bereavement follow-up and support services through the use of an interpretive description methodology. To this end, 21 bereaved parents (including 5 parental couples) and 7 hospital staff involved in bereavement follow-up activities at two paediatric hospitals were interviewed, and the clinical applicability of the results verified through various meetings with project collaborators and service/program providers. The results of the study describe how parents coped with their grief in the early phase of their bereavement, as well as their perspectives on how various bereavement follow-up services helped them cope. We found that parents regulate their intense feelings of grief through either loss-oriented or restoration-oriented strategies, including attempts to reorganize their self-identity and connection to their deceased child; often parents’ relationships with others help them cope in these ways. The insights we gained from the respondents also allowed us to elucidate how various bereavement support and follow-up services were helpful. These results are discussed along with the clinical implications and how these findings can inform bereavement service providers

Motivations for Remittances and Philanthropy – Lessons from a Qualitative Meta-Synthesis of Literature

Why do people send remittances? Also, what are the motivations for diaspora philanthropy? While each of these questions have been addressed by scholars in different way – with the most influential theories suggesting that ‘identification’ is the key theme that explains each of these phenomenon, we contend that there is much more than purely ‘identification’ with the recipients that is at play. In this study, based on synthesis of various theories and some empirical studies, we propose a new ‘mid-range’ theory, that seeks to explain the motivations for giving – both remittances and philanthropy. We explain how the motivations in each can be similar and distinct and offer insights that aim to further the scholarship on philanthropy and remittances. We hope to contribute to the discussion on the motivations for remittances and philanthropy and how it plays out, in the context of international development. With the urgency in fund-raising efforts and the need to accurately identify mechanisms and tools that will address the urgent needs of millions of people around the world, scholars are also coming together with innovative approaches and models to help understand how and why people give money. In addition, there is also the factor of donor fatigue that one has to contend with

Mobile phone and tablet apps to support young people’s management of their physical long-term conditions: a systematic review protocol

Background: The prevalence of long-term or chronic conditions that limit activity and reduce quality of life in young people aged 10-24 years is rising. This group has distinct health care needs and requires tailored support strategies to facilitate increasing personal responsibility for the management of their condition wherever possible, as they mature. Mobile phone and tablet mobile technologies featuring software program apps are already well used by young people for social networking or gaming. They have also been utilized in health care to support personal condition management, using condition-specific and patient-tailored software. Such apps have much potential, and there is an emerging body of literature on their use in a health context making this review timely. Objective: The objective of this paper is to develop a systematic review protocol focused on identifying and assessing the effectiveness of mobile phone and tablet apps that support young people’s management of their chronic conditions. Methods: The search strategy will include a combination of standardized indexed search terms and free-text terms related to the key concepts of young people; long-term conditions and mobile technology. Peer-reviewed journal articles published from 2003 that meet the inclusion and exclusion criteria will be identified through searching the generated hits from 5 bibliographical databases. Two independent reviewers will screen the titles and abstracts to determine which articles focus on testing interventions identified as a mobile phone or tablet apps, and that have been designed and delivered to support the management of long-term conditions in young people aged 10-24 years. Data extraction and quality assessment tools will be used to facilitate consistent analysis and synthesis. It is anticipated that several studies will meet the selection criteria but that these are likely to be heterogeneous in terms of study design, reported outcomes, follow-up times, participants’ age, and health condition. Sub-group analyses will be undertaken and where possible meta-analyses will take place.Results: This review will synthesize available knowledge surrounding tablet and mobile phone apps that support management of long term physical health conditions in young people. The findings will be synthesized to determine which elements of the technologies were most effective for this population. Conclusions: This systematic review aims to synthesize existing literature in order to generate findings that will facilitate the development of an app intervention. The review will form the first phase of development and evaluation of a complex intervention as recommended by the United Kingdom Medical Research Council. The knowledge gained from the review will be verified in subsequent phases, which will include primary qualitative work with health professionals and young people with long term conditions as research participants. Young people living with long-term conditions will be involved as co-researchers and consumer advisors in all subsequent phases to develop and evaluate an app to support the management of long-term physical health conditions