ArticleHealth expectations : an international journal of public participation in health care and health policy2016
An exploration of how young people and parents use online support in the context of living with cystic fibrosis.
Article in Health expectations : an international journal of public participation in health care and health policy, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 28 papers, 3 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
28 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Opportunities and pitfalls of social media research in rare genetic diseases: a systematic review.Genetics in medicine : official journal of the American College of Medical Genetics · 2021Pooled it
- Pooled it
- Experiences of interventions aiming to improve the mental health and well-being of children and young people with a long-term physical condition: A systematic review and meta-ethnography.Child: care, health and development · 2019Pooled it
- Effect and Process Evaluation of e-Powered Parents, a Web-Based Support Program for Parents of Children With a Chronic Kidney Disease: Feasibility Randomized Controlled Trial.Journal of medical Internet research · 2018Trial
- Utilization of Netnography as a Health Care Research Methodology: Scoping Review.Journal of medical Internet research · 2025Article
- A scoping review of health literacy in rare disorders: key issues and research directions.Orphanet journal of rare diseases · 2024Article
- Use and impact of virtual resources for peer support by young adults living with cancer: A systematic review.Canadian oncology nursing journal = Revue canadienne de nursing oncologique · 2024Article
- Parent's Perception of the Types of Support Given to Families with an Infant with Phenylketonuria.Nutrients · 2023Article
- Review
- Self-Expression and Sharing around Chronic Illness on TikTok.AMIA ... Annual Symposium proceedings. AMIA Symposium · 2023Article
- Living with cystic fibrosis during the COVID-19 pandemic: a social connectedness perspective.International journal of qualitative studies on health and well-being · 2022Article
- Online Ethnography for People With Chronic Conditions: Scoping Review.Journal of medical Internet research · 2022Article
- Needs of people with rare diseases that can be supported by electronic resources: a scoping review.BMJ open · 2022Article
- Parent Intention to Enroll in an Online Intervention to Enhance Health Behavior Change among Youth Treated with Psychotropic Medication Who Are Overweight or Obese: An Elicitation Study.International journal of environmental research and public health · 2022Article
- Unsettling experiences: A qualitative inquiry into young peoples' narratives of diagnosis for common skin conditions in the United Kingdom.Frontiers in psychology · 2022Article
- Hearing the Voice of a Shadow Child: Healthy Siblings Experience of Cystic Fibrosis and Other Life-Threatening Conditions.Journal of patient experience · 2020Article
- Virtual Peer Support for People With Cystic Fibrosis and Their Family Members: A Program Evaluation.Journal of patient experience · 2020Article
- The Use of Mumsnet by Parents of Young People With Mental Health Needs: Qualitative Investigation.JMIR mental health · 2020Article
- The lived experience of adults with cystic fibrosis: what they would tell their younger selves about the gut.Journal of human nutrition and dietetics : the official journal of the British Dietetic Association · 2020Article
- Exploring Research Priorities of Parents Who Have Children With Down Syndrome, Cleft Lip With or Without Cleft Palate, Congenital Heart Defects, or Spina Bifida Using ConnectEpeople: A Social Media Coproduction Research Study.Journal of medical Internet research · 2019Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
Abstract
backgroundThere is increasing recognition of the Internet's potential role in providing information and support for people living with long-term conditions. However, how young people and parents use online forms of self-care support in the context of living with childhood chronic illness has been under-researched.
objectiveTo explore how online peer support is used by young people and parents to support self-care in relation to cystic fibrosis (CF). SETTING AND
participantsOnline forum for young people and parents based on a CF charity website. A total of 279 individuals participated in the forum during the study.
designAn online ethnographical approach, involving observing, downloading and analysing discussion group postings. All postings made over a random 4-month period were included (151 discussion threads).
resultsThe online setting enabled a physically disconnected group to connect and create a safe space to collectively share experiences and receive support to manage and live with cystic fibrosis. Participants exchanged experientially derived advice and views on how to manage treatments, emotions, relationships, identity and support from services. While parents sought information and support on managing specific therapies/services and ways of maintaining their child's health, the information and support young people desired appeared to be more directed at how to 'fit' CF into their everyday lives. DISCUSSION AND
conclusionsOnline support groups appear to supplement professional support in relation to self-management. They enable young people and parents to share experiences, feelings and strategies for living with long-term conditions with peers and develop the expertise to empower them in interactions with health-care professionals.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.