The hidden ill-health of mothers of young disabled children: The health and primary healthcare use of mothers of preschool children with developmental disabilities

Mothers of disabled children (caregivers) have worse health than mothers of typically developing children. Ill-health increases perception of the difficulties of caregiving, and adversely affects mother-child attachment, child development and behaviour. Caregivers may also experience barriers to accessing healthcare (time-consuming caregiving tasks, unsuitable transportation), increasing the risk of undetected and untreated symptoms. Most research is non-UK based and focuses on stress and depression in mother-caregivers of children over five, despite disability diagnosis often occurring earlier. In my thesis, I explore differences in the psychological and physical ill-health and healthcare use of caregivers of children with disabilities compared with other mothers of preschool (0-5 years) children in the UK, and the influence of child disability diagnosis. I conducted a systematic review of the association between caregiving and ill-health. This informed analyses of the Born in Bradford cohort with linked primary care data for caregivers of children with developmental disabilities and delay and other mothers, including: prevalence of symptoms of ill-health; frequency of visits for symptoms; and healthcare use by mothers of children with Autism Spectrum Disorders (ASD). In the review, there was evidence of a large adverse association between caregiving and health. The high heterogeneity in the data was not explained by disability diagnosis. In the cohort analysis, compared with other mothers: caregivers had worse health; visited the doctor for psychological distress slightly more often but were less likely to visit when actually distressed; visited as often for exhaustion and head/musculoskeletal pain. Differences in patterns of healthcare use were not associated with caregiving for children with ASD. I show that disparities in the health of caregivers and other mothers emerge in the preschool period, and caregiver ill-health may be under-detected in primary care. Unlike older child groups, caregiving rather than specific child diagnoses is associated with ill-health during the preschool period

Patients' perspective on pulmonary rehabilitation: experiences of European and American individuals with chronic respiratory diseases

Despite the fact that pulmonary rehabilitation (PR) is the most powerful nonpharmacological intervention to improve the symptoms, exercise capacity and quality of life of people living with chronic lung disease [1], fewer than 2% of eligible patients enrol [2, 3]. While preparing a joint American Thoracic Society (ATS)/European Respiratory Society (ERS) Policy Statement on pulmonary rehabilitation [4], we developed a survey to better understand patients' perspectives on PR, and to identify challenges faced both by patients who have taken part in PR and those who might be eligible but have not had the opportunity. The survey was disseminated via the European Lung Foundation/ERS and ATS Public Advisory Roundtable professional patient networks, and via the COPD Foundation and Pulmonary Fibrosis Foundation to patients with a wide range of chronic lung diseases. The survey was available online from July, 2014 to November, 2014 in 10 languages (Dutch, English, Flemish, French, German, Greek, Italian, Polish, Portuguese and Spanish). Responses were received from 1685 people (73% female) with self-reported chronic lung disease in 29 countries (USA: 71.1%; Europe: 27.4%; others: 1.5%) and were included in the analyses (table 1)

Communication difficulties reported by patients diagnosed with idiopathic pulmonary fibrosis and their carers : a European focus group study

This paper explores commonalities in the experience and unmet needs of idiopathic pulmonary fibrosis (IPF) patients and carers in Europe throughout the care pathway, focusing specifically on the unmet communication needs of patients and carers. Four patient organisations/groups in Europe held focus groups (Italy (seven patients and four carers); Belgium (six patients); Ireland (23 patients and 10 carers); and England, UK (five patients and three carers)). A focus group schedule was provided and translated into the language of each focus group by the European Lung Foundation (ELF). Content analysis was conducted by the ELF and verified by the authors of the paper. Three main themes emerged: professional-patient, professional-professional and patient-patient communication. Within these themes, eight priority areas were highlighted by two or more of the focus groups. In addition, 17 suggested action points were identified. Patients and carers in Europe have unmet communication needs, which could be met by specialist physicians and specialist centres providing more effective information and signposting to support services, including support groups and patient organisations

Attitudes and preferences of home mechanical ventilation users from four European countries: an ERS/ELF survey

Home mechanical ventilation is increasingly used by people with chronic respiratory failure. However, there are few reports on attitudes towards treatment. A web-based survey in eight languages was disseminated across 11 European countries to evaluate the perception of home mechanical ventilation provision in ventilator-assisted individuals and caregivers. Out of 787 responders from 11 European countries, 687 were patients and 100 were caregivers. 95% of patients and 94% of caregivers were from only 4 countries (Germany, the Netherlands, Italy, Spain). The majority of respondents were male and aged 46-65\u2005years. Obstructive lung diseases were proportionally more represented among respondent patients (46%), and neuromuscular diseases (65%) were more represented among patients of respondent caregivers. About 20% of respondent patients and caregivers were not sure of the modality of ventilation. Different interfaces were used, with a minority of respondents in all countries using invasive home mechanical ventilation by tracheostomy. These results may be useful for healthcare providers and policy makers to improve the quality of patients' daily lives

Stakeholder engagement in the health policy process in a low income country : a qualitative study of stakeholder perceptions of the challenges to effective inclusion in Malawi

Abstract Background Inclusive engagement in healthcare policies and decision-making is essential to address the needs of patients and communities, reduce health inequities and increase the accountability of the government. In low income countries such as Malawi, with significant health challenges, stakeholder inclusion is particularly important to improve performance and service delivery. The 2017 National Health Plan II (NHP II) and accompanying Health Sector Strategic Plan II (HSSP II) aimed to improve the functioning of the healthcare system. The Ministry of Health for Malawi intended to involve all key health sector stakeholders in their development. This study explores the extent of stakeholder engagement in the health policy process through local level stakeholders’ perceptions of their involvement in the NHP II and HSSP II. Methods A qualitative study design was used. Interviews were conducted with 19 representatives of organisations operating at the local level, such as CSOs and local government. Open questions were asked about experiences and perceptions of the development of the NHP II and HSSP II. Inductive content analysis was performed. Results Stakeholders perceived barriers to inclusive and meaningful engagement in the health policy process. Five categories were identified: tokenistic involvement; stakeholder hierarchy; mutual distrust; preferred stakeholders; no culture of engagement. Conclusions Serious challenges to the meaningful and equitable engagement of local level stakeholder groups in the health policy process were identified. Issues of trust, accountability and hierarchy in donor-citizen-government relations must be addressed to support stakeholder engagement. Engagement must go beyond tokenism to embed a range of stakeholders in the process with feedback mechanisms to ensure impact from their contributions. Local level stakeholders can be empowered to advocate for and participate in consultation exercises alongside greater top-down efforts to engage stakeholders via diverse and inclusive methods. These issues are not unique to Malawi or to health policy-making

Diagnosing primary ciliary dyskinesia: an international patient perspective

Primary ciliary dyskinesia (PCD) is a rare genetic disorder characterised by progressive sinopulmonary disease, with symptoms starting soon after birth. A European Respiratory Society (ERS) Task Force aims to address disparities in diagnostics across Europe by providing evidence-based clinical practice guidelines. We aimed to identify challenges faced by patients when referred for PCD diagnostic testing. A patient survey was developed by patient representatives and healthcare specialists to capture experience. Online versions of the survey were translated into nine languages and completed in 25 countries. Of the respondents (n=365), 74% were PCD-positive, 5% PCD-negative and 21% PCD-uncertain/inconclusive. We then interviewed 20 parents/patients. Transcripts were analysed thematically. 35% of respondents visited their doctor more than 40 times with PCD-related symptoms prior to diagnostic referral. Furthermore, the most prominent theme among interviewees was a lack of PCD awareness among medical practitioners and failure to take past history into account, leading to delayed diagnosis. Patients also highlighted the need for improved reporting of results and a solution to the “inconclusive” diagnostic status. These findings will be used to advise the ERS Task Force guidelines for diagnosing PCD, and should help stakeholders responsible for improving existing services and expanding provision for diagnosis of this rare disease