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Psychosocial aspects of living with congenital heart disease: child, family, and professional perspectives
Umeå University, Faculty of Medicine, Department of Clinical Sciences, Paediatrics.
2012 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background: The vast majority of infants born with congenital heart disease (CHD) reach adulthood because of the developments in cardiology in recent decades. This thesis aims to describe the psychosocial situation of child/adolescent cardiac patients and their families, investigate the situation faced by parents and siblings initially and over time, investigate the approaches paediatric cardiologists use in encountering the family, and describe the teamwork occurring in paediatric cardiology teams (PCTs) in Sweden.

Theoretical framework: The theoretical framework was based on a quality of life model applied to children, a stress-coping model, and a psychosocial approach including support, profession, and teamwork.

Methods: The research combines quantitative data collection/analysis and qualitative research interviews/content analysis.

Results:

Complexity: The three grades of medical complexity differed regarding the number and severity of psychosocial symptoms, the children with the most complex CHD having the most severe symptoms. The most frequent symptoms in the whole patient group regarding various spheres were: healthcare and treatment-related needs in the external sphere, family symptoms in the interpersonal sphere, and mental/psychosomatic symptoms in the personal sphere.

Coping: Being informed of a child’s/sibling’s heart disease has emotional consequences, so information, communication, and support are essential. Breaking the news of a child’s disease can be described as a turning point still significant after ten years. The professionalism of the doctor’s approach in breaking the news is crucial.

Profession: Among paediatric cardiologists, how to break bad news to a family is an important concern, evident in findings regarding the significance of trust and confidence and the use of various emotional positions. Paediatric cardiologists commonly wish to be skilled at handling this situation, and attaining the needed skills calls for reflection, education, and sharing experience.

Team: PCTs in Sweden aim and try to work in a structured way. In PCTs, there is a need for leadership, resource coordination, coaching, and a forum for joint reflection. Dependence on the physician on the team was identified in all PCTs. The challenge of managing increasing complexity at both the family and system levels requires interprofessional teams.

Conclusions: These studies illustrate the psychosocial complexity and the need of psychosocial support. Emotional consequences, communication, information and support are essential both for the children, parents/families and for the professionals. To manage this complexity organizational alteration action plans are required. There is a need for a forum to stimulate dialogue and common reflection in the local PCT and at the regional and national centres.

Place, publisher, year, edition, pages
Umeå: Umeå universitet , 2012. , 51 p.
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 1532
Keyword [en]
breaking bad news, children/adolescents, congenital heart disease, communication, content analyse, coping, counselling, interprofessional team, medical education, patient relationships, paediatric cardiology, professional role, psychosocial inventory method, qualitative method, quantitative method stress, teamwork
National Category
Pediatrics
Identifiers
URN: urn:nbn:se:umu:diva-60761ISBN: 978-91-7459-511-6 (print)OAI: oai:DiVA.org:umu-60761DiVA: diva2:562652
Public defence
2012-11-30, Biomedicinhusets suterrängplan, sal E04, Byggnad 6E, Norrlands universitetssjukhus, Umeå, 09:00 (Swedish)
Opponent
Supervisors
Available from: 2012-11-06 Created: 2012-10-25 Last updated: 2012-11-08Bibliographically approved
List of papers
1. The complexity of the psychosocial situation in children and adolescents with heart disease
Open this publication in new window or tab >>The complexity of the psychosocial situation in children and adolescents with heart disease
2005 (English)In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 94, no 10, 1495-1501 p.Article in journal (Refereed) Published
Abstract [en]

Aim: To describe the psychosocial situation of children/adolescents with heart disease and their families, an inventory method was worked out.

Methods: Ninety-seven children/adolescents with congenital heart disease (CHD) were graded into three categories with respect to complexity of CHD. Group I included 42 patients with malformations requiring standardized operations. Group II included 20 patients with more complicated malformations, and group III included 35 patients with very complex malformations. The patients were compared with controls without heart disease, matched for age and gender. The psychosocial impact of CHD was measured by the inventory.

Results: The most frequent problems in the patient group were healthcare and treatment-related needs (71/97) in the external sphere, family symptoms (68/97) in the interpersonal sphere, and somatic symptoms (19/97) in the personal sphere. Corresponding numbers in the controls were treatment-related needs (15/97), family (9/97) and somatic symptoms (25/97). Fifty per cent of the symptoms in the patient groups were mild, 30% moderate and 20% severe. The most severe symptoms were found in the interpersonal sphere, where family symptoms constituted the most severe variable. The frequency of severe problems in the personal sphere was 11% in the patients and 1% in the controls. This inventory method differentiates the grades of medical complexity both regarding number and severity of psychosocial symptoms. It indicates severe personal problems in the most complex group and shows that they have severe personal problems independent of family problems.

Conclusion: This study elucidates the psychosocial complexity in children/adolescents with CHD, which has clinical implications in developing a psychosocial care programme.

Keyword
Adaptation, Psychological, Adolescent, Cardiac Surgical Procedures/*economics/methods, Child, Child; Preschool, Cost of Illness, Cross-Sectional Studies, Family Characteristics, Female, Follow-Up Studies, Heart Defects; Congenital/*diagnosis/epidemiology/*surgery, Humans, Infant, Male, Needs Assessment, Parent-Child Relations, Prevalence, Psychology, Questionnaires, Reference Values, Risk Assessment, Severity of Illness Index, Socioeconomic Factors, Survival Rate, Sweden
National Category
Pediatrics
Identifiers
urn:nbn:se:umu:diva-13838 (URN)10.1080/08035250510037272 (DOI)16299885 (PubMedID)
Available from: 2007-05-16 Created: 2007-05-16 Last updated: 2012-11-08Bibliographically approved
2. Facing bad news: a case study focusing on families having a child with congenital heart disease
Open this publication in new window or tab >>Facing bad news: a case study focusing on families having a child with congenital heart disease
Show others...
(English)Manuscript (preprint) (Other academic)
National Category
Pediatrics
Identifiers
urn:nbn:se:umu:diva-60766 (URN)
Available from: 2012-10-25 Created: 2012-10-25 Last updated: 2012-10-31Bibliographically approved
3. Breaking bad news: an interview study of paediatric cardiologists
Open this publication in new window or tab >>Breaking bad news: an interview study of paediatric cardiologists
2011 (English)In: Cardiology in the Young, ISSN 1047-9511, E-ISSN 1467-1107, Vol. 21, no 3, 286-291 p.Article in journal (Refereed) Published
Abstract [en]

Technical developments in paediatric cardiology over the last few decades have increased expectations on professionals, demanding of them more emotional competence and communicative ability. The aim of this study was to examine the approach of paediatric cardiologists in informing and communicating with the family of the patient.

Method: A qualitative interview method was first tested in a pilot study with two paediatric cardiologists. There were nine subsequent semi-structured interviews that were carried out with paediatric cardiologists. A researcher performed all the interviews, which were taped, transcribed, decoded, and analysed.

Results: Among paediatric cardiologists, how to break bad news to the family is an important concern, evident in findings regarding the significance of trust and confidence, the use of different emotional positions, and a common ambition to achieve skills to handle the situation. There is a need for reflection, education, and sharing of experiences. The cardiologists desire further development of teamwork and of skills in medical students and residents for delivering bad news.

Conclusions: Doctors are expected to cope with the complexities of diagnoses and decisions, while simultaneously being sensitive to the feelings of the parents, aware of their own emotions, and able to keep it all under control in the context of breaking the bad news to the parents and keeping them informed. These conflicting demands create a need to expand the professional role of the doctor by including more training in emotional competence and communicative ability, beginning in medical school and continuing through consultancy.

Keyword
Counselling; patient relations; medical education; professional role
National Category
Cardiac and Cardiovascular Systems
Identifiers
urn:nbn:se:umu:diva-40939 (URN)10.1017/S1047951110001952 (DOI)21272428 (PubMedID)
Available from: 2011-03-15 Created: 2011-03-15 Last updated: 2012-11-08Bibliographically approved
4. Teamwork in Swedish paediatric cardiology: a national exploratory study examining function and dynamics
Open this publication in new window or tab >>Teamwork in Swedish paediatric cardiology: a national exploratory study examining function and dynamics
(English)Manuscript (preprint) (Other academic)
National Category
Pediatrics
Identifiers
urn:nbn:se:umu:diva-60765 (URN)
Note

Accepted

Available from: 2012-10-25 Created: 2012-10-25 Last updated: 2012-10-31Bibliographically approved

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Birkeland, Anna-Lena

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