Caregiver-centred empowerment for families raising autistic children: A qualitative case study from Argentina.

LAY ABSTRACT: Caregivers of children with developmental disabilities, including autism, often struggle to access services, information and resources in Argentina. Little is known about how caregivers can be empowered to support their children as they wish to in the Argentinian setting. We spoke with 32 people online to understand existing and potential practices of supporting caregivers. The people we spoke with included caregivers, health service providers, non-governmental organisations' representatives providing services or technical support, special education teachers and policy representatives. Participants said that poverty, and inequalities in accessing support, impact how caregivers can support their children. They mentioned examples that help caregivers feel empowered, such as peer support groups and caregiver training. Many caregivers spoke about how they became advocates for their children and how they developed initiatives such as advocacy campaigns and well-being support groups. Caregivers in Argentina may be empowered in various ways, and the following strategies can improve empowerment: strengthening collaboration between professionals and caregivers; focusing on caregiver mental health; and addressing the profound impact of poverty on the quality of life of families.

Correction: Exploring contextual adaptations in caregiver interventions for families raising children with developmental disabilities.

[This corrects the article DOI: 10.1371/journal.pone.0272077.].

Conceptualising the empowerment of caregivers raising children with developmental disabilities in Ethiopia: a qualitative study.

BACKGROUND: Caregivers of children with developmental disabilities (DDs) in Ethiopia experience stigma and exclusion. Due to limited existing services and substantial barriers to accessing care, they often lack support. Caregiver empowerment could help address injustices that hinder their capacity to support their child as they would like. The aim of this study was to explore the meaning and potential role of empowerment for caregivers raising a child with a DD and how empowerment was situated in relation to other priorities in service development. METHODS: This was a qualitative phenomenological study. Semi-structured interviews were conducted in Amharic and English with caregivers of children with a DD (n = 15), clinicians (n = 11), community-based health extension workers (n = 5), representatives of non-governmental organisations working with families with DDs (n = 17), and representatives of local authorities in health, education, and social care (n = 15). Data were analysed thematically. RESULTS: Three main themes were developed: "Barriers to exercising caregivers' agency"; "Whose decision is it to initiate empowerment?"; and "Supporting caregivers through support groups". Caregiver capacity to do what they thought was best for their child was undermined by poverty, a sense of hopelessness, experience of domestic abuse and multiple burdens experienced by those who were single mothers. Caregivers were nonetheless active in seeking to bring about change for their children. Caregivers and professionals considered support groups to be instrumental in facilitating empowerment. Participants reflected that caregiver-focused interventions could contribute to increasing caregivers' capacity to exercise their agency. A tension existed between a focus on individualistic notions of empowerment from some professionals compared to a focus on recognising expertise by experience identified as vital by caregivers. Power dynamics in the context of external funding of empowerment programmes could paradoxically disempower. CONCLUSION: Caregivers of children with DDs in Ethiopia are disempowered through poverty, stigma, and poor access to information and resources. Shifting power to caregivers and increasing their access to opportunities should be done on their own terms and in response to their prioritised needs.

Exploring contextual adaptations in caregiver interventions for families raising children with developmental disabilities.

There are increasing efforts to scale up services globally for families raising children with developmental disabilities (DDs). Existing interventions, often developed in high income, Western settings, need substantial adaptation before they can be implemented in different contexts. The aim of this study was to explore perspectives on the role that context plays in the adaptation and implementation of interventions targeting caregivers of children with DDs across settings. The study question was applied to the Caregiver Skills Training (CST) programme of the World Health Organization specifically, as well as to stakeholder experiences with caregiver interventions more broadly. Two focus group discussions (FGDs; n = 15 participants) and 25 individual semi-structured interviews were conducted. Participants were caregivers of children with DDs and professionals involved in adapting or implementing the CST across five continents and different income settings. Data were analysed thematically. Four main themes were developed: 1) Setting the scene for adaptations; 2) Integrating an intervention into local public services; 3) Understanding the reality of caregivers; 4) Challenges of sustaining an intervention. Informants thought that contextual adaptations were key for the intervention to fit in locally, even more so than cultural factors. The socio-economic context of caregivers, including poverty, was highlighted as heavily affecting service access and engagement with the intervention. Competing health priorities other than DDs, financial constraints, and management of long-term collaborations were identified as barriers. This study validates the notion that attention to contextual factors is an essential part of the adaptation of caregiver interventions for children with DDs, by providing perspectives from different geographical regions. We recommend a stronger policy and research focus on contextual adaptations of interventions and addressing unmet socio-economic needs of caregivers.

The role of advocacy and empowerment in shaping service development for families raising children with developmental disabilities.

INTRODUCTION: Empowerment of families raising children with developmental disabilities (DDs) is essential to achieving rights-based service development. METHODS: In this qualitative study, we investigated stakeholder perceptions on the role of advocacy and empowerment in developing caregiver interventions for families of children with DDs in a global context. Participants had experience with at least one intervention, namely the Caregiver Skills Training developed by the World Health Organization (WHO). Participants were clinicians, caregivers and researchers representing five continents, and representatives of WHO and Autism Speaks. Two focus group discussions and 25 individual interviews were conducted. Data were analysed thematically. RESULTS: Three themes were developed: empowerment as independence and as a right; the role and practices of advocacy; and using evidence to drive advocacy. Many professional participants defined empowerment within the realms of their expertise, focusing on caregivers' individual skills and self-confidence. Caregivers expressed that this expert-oriented view fails to acknowledge their intuitive knowledge and the need for community-level empowerment. Participants discussed the challenges of advocacy in light of competing health priorities. The gap between the rights of caregivers and the availability of services, for example, evidence-based interventions, was highlighted as problematic. Scientific evidence was identified as a key for advocacy. CONCLUSION: Rights-orientated empowerment of caregivers and advocacy may make vital contributions to service development for children with DDs in contexts worldwide. PATIENT AND PUBLIC CONTRIBUTION: Research questions were revised based on views presented during focus group discussions. Participant feedback on preliminary themes informed the development of the interview guides.

Mental Health Support in the Time of Crisis: Are We Prepared? Experiences With the COVID-19 Counselling Programme in Hungary.

The Coronavirus disease 2019 (COVID-19) posed unexpected global economic and societal challenges. These include a heavy impact on mental health due to fast changing lockdown and quarantine measures, uncertainty about health and safety and the prospect of new waves of infections. To provide crisis mental health support during the pandemic, Eötvös Loránd University in Hungary launched a specialist online counselling programme, consisting of one to three sessions. The programme was available to all university members between 4th March and 25th May 2020. Overall, 47 clients received support. In this paper we discuss challenges reported by clients, key features of providing a brief mental health intervention online, reflect on counsellor experiences and give recommendations on how mental health services could be developed in the time of crisis. Most clients had challenges with developing a daily routine under quarantine; and many had hardship related to finances, housing, and distance learning. Common mental health consequences included fear from the virus and stress, anxiety, and fatigue due to the interruption to everyday life. In some cases, more complex conditions were triggered by the pandemic. Examples include addictive behaviours and symptoms of depression or psychosis. However, referring cases beyond the competency of counselling proved to be a challenge due to the closure of specialist services. Counsellors observed three key features to the online delivery of a brief crisis mental health intervention: [1] an explicit problem-oriented approach to counselling; [2] challenges of building rapport online; and [3] frames of online counselling. Counsellor experiences often overlapped with those of clients and included challenges of working from home and adjusting to online counselling methods. The possibility of online counselling allowed that mental health care could take place at all during the pandemic. Client experiences reflect findings from previous literature. Like other mental health initiatives launched to tackle COVID-19, the intervention's effectiveness was not measured given the unexpected context and short time frame for programme development. We recommend the use of impact measurement tools to develop mental health services in crises. Meanwhile, the pandemic brought to attention the need to better understand online delivery models. Counsellors should have access to training opportunities on online counselling and managing work-life balance in a remote setting. The COVID-19 counselling programme in Eötvös Loránd University, Hungary is an example of providing online mental health counselling in the time of crisis. Clearly, more studies are needed discussing delivery models and effectiveness of mental health interventions during the pandemic. Experience and knowledge sharing across practitioners should be encouraged to improve how the field reacts to unexpected, high risk events and crises.

The adverse effects of bisphosphonates in breast cancer: A systematic review and network meta-analysis.

BACKGROUND: Bisphosphonate drugs can be used to improve the outcomes of women with breast cancer. Whilst many meta-analyses have quantified their potential benefits for patients, attempts at comprehensive quantification of potential adverse effects have been limited. We undertook a meta-analysis with novel methodology to identify and quantify these adverse effects. METHODS: We systematically reviewed randomised controlled trials in breast cancer where at least one of the treatments was a bisphosphonate (zoledronic acid, ibandronate, pamidronate, alendronate or clodronate). Neoadjuvant, adjuvant and metastatic settings were examined. Primary outcomes were adverse events of any type or severity (excluding death). We carried out pairwise and network meta-analyses to estimate the size of any adverse effects potentially related to bisphosphonates. In order to ascertain whether adverse effects differed by individual factors such as age, or interacted with other common adjuvant breast cancer treatments, we examined individual-level patient data for one large trial, AZURE. FINDINGS: We identified 56 trials that reported adverse data, which included a total of 29,248 patients (18,301 receiving bisphosphonate drugs versus 10,947 not). 24 out of the 103 different adverse outcomes analysed showed a statistically and practically significant increase in patients receiving a bisphosphonate drug compared with those not (2 additional outcomes that appeared statistically significant came only from small studies with low event counts and no clinical suspicion so are likely artifacts). Most of these 24 are already clinically recognised: 'flu-like symptoms, fever, headache and chills; increased bone pain, arthralgia, myalgia, back pain; cardiac events, thromboembolic events; hypocalcaemia and osteonecrosis of the jaw; as well as possibly stiffness and nausea. Oral clodronate appeared to increase the risk of vomiting and diarrhoea (which may also be increased by other bisphosphonates), and there may be some hepatotoxicity. Four additional potential adverse effects emerged for bisphosphonate drugs in this analysis which have not classically be recognised: fatigue, neurosensory problems, hypertonia/muscle spasms and possibly dysgeusia. Several symptoms previously reported as potential side effects in the literature were not significantly increased in this analysis: constipation, insomnia, respiratory problems, oedema or thirst/dry mouth. Individual patient-level data and subgroup analysis revealed little variation in side effects between women of different ages or menopausal status, those with metastatic versus non-metastatic cancer, or between women receiving different concurrent breast cancer therapies. CONCLUSIONS: This meta-analysis has produced estimates for the absolute frequencies of a range of side effects significantly associated with bisphosphonate drugs when used by breast cancer patients. These results show good agreement with previous literature on the subject but are the first systematic quantification of side effects and their severities. However, the analysis is limited by the availability and quality of data on adverse events, and the potential for bias introduced by a lack of standards for reporting of such events. We therefore present a table of adverse effects for bisphosphonates, identified and quantified to the best of our ability from a large number of trials, which we hope can be used to improve the communication of the potential harms of these drugs to patients and their healthcare providers.

Comparison of approaches and measurement of continuing professional development for specialists in laboratory medicine within four European countries.

BACKGROUND: This study investigated approaches to continuing professional development (CPD) for specialists in laboratory medicine within four European countries: Croatia, the Czech Republic, Malta and the UK. METHODS: The research questions focussed on ascertaining if continued registration/licence was linked to CPD and if so, were there requirements for certain amounts and types of CPD and for CPD activities to meet specified accreditation criteria. The Professional Associations Research Network (PARN) model of CPD measurement was applied to each country's registration/licencing body's CPD requirements. RESULTS: Our results indicate a spectrum of approaches to CPD within participating countries. CONCLUSIONS: It will be necessary for European employers to be familiar with these differences and to take them into account for this increasingly mobile European workforce.