Health expectations : an international journal of public participation in health care and health policy

BACKGROUND: Introduced in 2002, the Essure® implant was promoted as a minimally invasive permanent contraceptive. After widespread use, increasing reports of adverse effects led to its global withdrawal in 2018. This study explores the expe…

BACKGROUND: Endometriosis treatment requires women to navigate complex, preference-sensitive decisions. Patient Decision Aids (PtDAs) help patients make value-aligned choices. However, the scope and quality of digital PtDAs for endometriosi…

CONTEXT: Medical mistrust and delayed diagnoses drive patients to seek information outside of formal healthcare channels, meaning that traditional research recruitment methods then struggle to reach them. Social media health content creator…

INTRODUCTION: One in five women enters pregnancy with multiple long-term health conditions, which is associated with increased risks of adverse maternal and child outcomes. There is a lack of research exploring individuals' experiences of p…

RESEARCH QUESTION: What are Black women's experiences when seeking reproductive health care in Iowa? DESIGN: Narrative-style qualitative research. METHODS: Adult Black women in Iowa were recruited for phone interviews. Data was analysed u…

BACKGROUND: Primary ciliary dyskinesia (PCD) affects fertility in both females and males. To understand the impact and concerns among people with PCD and parents of affected children (family caregivers), we explored how they report their ex…

INTRODUCTION: Young adults with chronic autoimmune conditions face unique and often overlooked challenges in post-secondary education due to the invisible and unpredictable nature of these conditions. This patient-led qualitative study aims…

BACKGROUND: General practitioners (GPs) are gatekeepers to specialist attention for endometriosis in the public system in Aotearoa New Zealand (Aotearoa-NZ). Their perspective of the endometriosis care landscape in Aotearoa-NZ has not been …

BACKGROUND: Long COVID, an infection-associated chronic condition characterised by new or worsening signs or symptoms for more than 3 months after a SARS-CoV-2 infection, is a chronic debilitating illness which remains poorly understood. Ep…

INTRODUCTION: Many people experience persistent symptoms for more than 12 weeks following SARS-CoV-2 infection, which is known as post-COVID-19 condition (PCS) or Long COVID (LC). PCS can impair people's quality of life and daily functionin…

BACKGROUND: Diagnostic uncertainty is common, but its communication to patients is under-explored. This study aimed to (1) characterise variation in doctors' communication of diagnostic uncertainty and (2) explore why variation occurred. M…

IntroductionThere is a pressing need to understand and explore the complex experiences and psychosocial support needs of people LWBC-CM and their informal caregivers, to inform survivorship and supportive care interventions.MethodsIn-depth …

INTRODUCTION: Over a fifth of pregnant women are living with multiple long-term health conditions, which is associated with increased risks of adverse outcomes for mothers and infants. While there are many examples of research exploring ind…

INTRODUCTION: James Lind Alliance (JLA) Priority Setting Partnerships (PSPs) produce 'Top 10' lists of health and care research priorities through a structured, shared decision-making process with patients or service users, carers and healt…

BACKGROUND: Disability is often an essentialised and oversimplified concept. We propose refining this while incorporating the multidimensional nature of disability by increasing the use of existing survey questions and their corresponding d…

OBJECTIVE: The aim of this study is to identify and explore the unmet needs of adolescents and young adults living with endometriosis. DESIGN: An open-ended online survey was conducted, with questions derived from prior research looking at…

INTRODUCTION: There is a growing body of literature concerning endometriosis patients' perspectives on the healthcare system and endometriosis care in New Zealand. However, there is little research available on the perspectives of general p…

INTRODUCTION: There is growing scientific and policy recognition that optimising health before a potential pregnancy (preconception health) improves reproductive outcomes and the lifelong health of future children. However, public awareness…

INTRODUCTION: Approximately 20% of people with a long-term condition (LTC) experience depressive symptoms (subthreshold depression [SUBD]). People with SUBD experience depressive symptoms that do not meet the diagnostic criteria for major d…

BACKGROUND: The aim of this project was to identify the top 10 priorities for childhood chronic conditions and disability (CCD) research from the perspectives of children and young people with lived experience, their parents and caregivers …

BACKGROUND: Early detection of symptoms and prompt diagnosis of ovarian cancer are considered important avenues for improving patient experiences and outcomes. METHODS: This qualitative study used a phenomenological approach to perform pat…

BACKGROUND: In 2020, the long-lasting effects of the Covid-19 virus were not included in public messages of risks to public health. Long Covid emerged as a novel and enigmatic illness with a serious and life-changing impact. Long Covid is p…

CONTEXT: The aim of this study was to ask whether there are shared ideas about what good health care looks like that apply across different populations and conditions. Do priorities among "seldom heard" groups differ from mainstream views a…

BACKGROUND: Health communication research and guidelines often recommend that medical terminology be avoided when communicating with patients due to their limited understanding of medical terms. However, growing numbers of e-patients use th…

BACKGROUND: Researchers are being urged to involve patients in the design and conduct of studies in health care with limited insight at present into their needs, abilities or interests. This is particularly true in the field of reproductive…