The experience of parents of children with rare diseases when communicating with healthcare professionals: towards an integrative theory of trust

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Abstract

Background

Given 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.

Results

The 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.

Conclusions

Trust 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.

Electronic supplementary material

The online version of this article (10.1186/s13023-019-1134-1) contains supplementary material, which is available to authorized users.

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Most cited references 48

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Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support

Matilda Anderson, Elizabeth J Elliott, Yvonne A Zurynski (2013)

Background Families of children living with a rare disease report significant health and social burden, however, few studies have systematically examined family needs by using validated tools to assess the scope and extent of this burden. Our aim was to develop a comprehensive survey to assess health, psychosocial and financial impacts on Australian families caring for a child with a rare disease. Methods We developed a self-administered survey for parents/carers incorporating pre-validated tools. The survey included questions about experiences of diagnosis, health services use and needs, needs for peer and financial supports. Forty-seven families attending the state-wide Genetic Metabolic Disorders Service at the Children’s Hospital at Westmead, Sydney were invited to participate. Results Of 46 families who received the survey, 30 (65%) completed it. Most (93%) found the survey acceptable and relevant (91%). Patients were 1–17 years old, 14 (47%) male, and 12 (40%) non-Caucasian. Eighteen (60%) had a lysosomal storage disease and 12(40%) had a mitochondrial disorder. Eleven (38%) saw 3–5 doctors and four (14%) saw 6–10 doctors before receiving the correct diagnosis; 43% felt diagnosis was delayed. Four (13%) were dissatisfied with the way diagnosis was given, due to insensitive style of communication, inadequate information and psychological support. Psychosocial impact was moderate to high for 90% of families and the level of impact was not dependent on the level of health functioning of the child. Twenty-six (87%) wanted, but only 13(43%) received, information about peer-support groups. The 30 children accounted for 168 visits to general practitioners and 260 visits to specialist doctors; 21 (70%) children had at least one admission to hospital, including one who had 16 admissions in the previous 12 months. Most families (77%) received financial assistance but 52% believed this was insufficient. Families benefited from a specialised multi-disciplinary clinic but called for patient-held electronic medical records. Conclusions Australian families caring for children with genetic metabolic disorders are adversely impacted by delays in diagnosis, lack of easy access to peer support groups and lack of psychological support. Further research is needed to estimate economic impact and to analyse health service delivery models for children with rare diseases in Australia.

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The supportive care needs of parents caring for a child with a rare disease: A scoping review.

Lemuel Pelentsov, Thomas Laws, Adrian Esterman (2015)

Parents caring for a child with a rare disease report unmet needs, the origins of which are varied and complex. Few studies have systematically attempted to identify the supportive care needs of parents with a child with a rare disease comprehensively. We have used the widely accepted Supportive Care Needs Framework (SCNF) as the structure for this review.

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Improving the quality of end-of-life care in the pediatric intensive care unit: parents' priorities and recommendations.

E Meyer, Michael B. Burns, Marilyn Ritholz … (2006)

Despite recognition that dying children and their families have unique palliative care needs, there has been little empirical inquiry of parent perspectives to improve the quality of end-of-life care and communication. The purpose of this study was to identify and describe the priorities and recommendations for end-of-life care and communication from the parents' perspective. This was a qualitative study based on parental responses to open-ended questions on anonymous, self-administered questionnaires, conducted at 3 pediatric ICUs in Boston, Massachusetts. Fifty-six parents whose children had died in PICUs after withdrawal of life support participated in this study. We measured parent-identified priorities for end-of-life care and communication. Parents identified 6 priorities for pediatric end-of-life care including honest and complete information, ready access to staff, communication and care coordination, emotional expression and support by staff, preservation of the integrity of the parent-child relationship, and faith. Parental priorities and recommendations offer simple yet compelling guidance to improve pediatric end-of-life clinical practice and research.

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Author and article information

Contributors

Beni Gómez-Zúñiga:

ORCID: http://orcid.org/0000-0001-7968-588X

bgomezz@uoc.edu

Rafael Pulido Moyano: rpulido@ual.es

Modesta Pousada Fernández: mpousada@uoc.edu

Alicia García Oliva: agarciaoliva@uoc.edu

Manuel Armayones Ruiz: marmayones@uoc.edu

Journal

Journal ID (nlm-ta): Orphanet J Rare Dis

Journal ID (iso-abbrev): Orphanet J Rare Dis

Title: Orphanet Journal of Rare Diseases

Publisher: BioMed Central (London )

ISSN (Electronic): 1750-1172

Publication date (Electronic): 28 June 2019

Publication date PMC-release: 28 June 2019

Publication date Collection: 2019

Volume: 14

Electronic Location Identifier: 159

Affiliations

[1 ]ISNI 0000 0001 2171 6620, GRID grid.36083.3e, Estudis de Psicologia i Ciències de l’Educació, , Universitat Oberta de Catalunya, ; Rambla Poblenou, 156 08018 Barcelona, Spain

[2 ]ISNI 0000000101969356, GRID grid.28020.38, Edificio Departamental de Humanidades y Ciencias de la Educación I (Edif. A). Planta 2, despacho 14, , Universidad de Almería, ; Ctra. Sacramento s/n, La Cañada de San Urbano, 04120 Almería, Spain

[3 ]ISNI 0000 0001 2171 6620, GRID grid.36083.3e, PSiNET Research Group, , Universitat Oberta de Catalunya, ; Barcelona, Spain

[4 ]ISNI 0000 0001 2171 6620, GRID grid.36083.3e, eHealth Center, Estudis de Psicologia i Ciències de l’Educació, , Universitat Oberta de Catalunya, ; Ctra. Sacramento s/n, La Cañada de San Urbano, 04120 Barcelona, Spain

Author information

Beni Gómez-Zúñiga http://orcid.org/0000-0001-7968-588X

Article

Publisher ID: 1134

DOI: 10.1186/s13023-019-1134-1

PMC ID: 6599337

PubMed ID: 31253163

SO-VID: 07e13ddd-386d-45ba-b9e9-e42a23aeed94

License:

Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.