ArticleOrphanet journal of rare diseases2019
The experience of parents of children with rare diseases when communicating with healthcare professionals: towards an integrative theory of trust.
Article in Orphanet journal of rare diseases, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 33 papers, 1 of them a synthesis that pooled it.
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Who cites it
33 citing papers in PubMed, 1 synthesis or guideline pooled it, 78 citations in OpenAlex.
- Children with a rare congenital genetic disorder: a systematic review of parent experiences.Orphanet journal of rare diseases · 2022Pooled it
- Integrative Literature Review on the Lived Experiences of Parents of Children with a Rare Disease.Healthcare (Basel, Switzerland) · 2026Review
- Coping with the challenges of caregiving: A qualitative exploration of the experiences of family caregivers of children with rare diseases in South Africa.Journal of genetic counseling · 2026Article
- Self-compassion and self-efficacy among parents of children with autism: the mediating role of trust and the moderating role of social support.BMC psychology · 2026Article
- Article
- Navigating rare disorder healthcare in Aotearoa New Zealand: an interpretative phenomenological analysis.Frontiers in health services · 2026Article
- Fragmentation of healthcare systems: challenges through patients' eyes.International journal of qualitative studies on health and well-being · 2025Article
- Exploring the experience of communication in healthcare settings with parents of children with a rare genetic condition: "It's the more negative ones that you remember".Journal of genetic counseling · 2025Article
- Disentangling trust of patients with rare cancer in their healthcare professionals and the healthcare system: a qualitative interview study.Journal of cancer survivorship : research and practice · 2025Article
- Estimating a preference-based index for patients with myasthenia gravis from the MGQoL-6D measure.Health and quality of life outcomes · 2025Article
- Communicating a diagnosis of Dravet syndrome to parents/caregivers: An international Delphi consensus.Epilepsia open · 2025Article
- 'A team around the child' professionals' experiences of unmet needs, access and expectations in children's palliative care services, a phenomenological study in the UK.Journal of child health care : for professionals working with children in the hospital and community · 2024Article
- The experience of albinism in France: a qualitative study on dyads of parents and their adult child with albinism.BMC medicine · 2024Article
- Exploring the psychological problems of mothers having the experience of death of children with untreatable genetic disorders: A qualitative study.Journal of education and health promotion · 2024Article
- Trust of inpatient physicians among parents of children with medical complexity: a qualitative study.Frontiers in pediatrics · 2024Article
- Parental Intervention Program for Preschool children with Rare Diseases - a mixed methods evaluation of parents' experiences and utility.Orphanet journal of rare diseases · 2023Article
- Living with a rare disease - experiences and needs in pediatric patients and their parents.Orphanet journal of rare diseases · 2023Article
- Barriers to and Facilitators of Providing Care for Adolescents Suffering from Rare Diseases: A Mixed Systematic Review.Pediatric reports · 2023Review
- The Right to Ask, the Need to Answer-When Patients Meet Research: How to Cope with Time.International journal of environmental research and public health · 2023Article
- Rare disease education in Europe and beyond: time to act.Orphanet journal of rare diseases · 2022Article
Corrections and comments
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Authors and funding
5 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundGiven the inherent complexity of rare paediatric diseases and the sensitive emotional context of the situations they create (due to the patients' age and the tense uncertainty surrounding the progression of the disease), communication between the adults involved is a key tool in the efforts to provide these children and youths a better quality of life. We conducted ten interviews with families of children with rare diseases, in the aim of exploring how communication between doctors and patients affect their daily lives. All participants, members of FEDER (a Spanish federation of associations of patients with rare diseases) were invited by phone or email to participate in a semi-structured interview including questions on clinical information, communication experiences with healthcare professionals, and the impact these had on the interviewees' relationships with them. To analyse these interviews, we used the 'grounded theory' methodology and open and axial text coding techniques, in addition to those identifying the properties and dimensions of the categories formulated.
resultsThe core category we have proposed is 'adjustment of mutual trust', with said category describing the attitude and behaviour of doctors who inspire trust in the parents of paediatric patients diagnosed with a rare disease. More specifically, said behaviours or sources of trust are: appearing human, sensitive and empathetic; showing transparency and communicative openness; being supportive of parental proactivity; and being available to families at all times.
conclusionsTrust is the cornerstone of parent-doctor communication in the field of children with rare diseases. If the sources of trust are present, they create a degree of trust that bolsters both parties in the search for a common goal: providing the child with the best possible care.
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