A pilot study on the effects of the transition of paediatric to adult health care in patients with haemophilia and in their parents: patient and parent worries, parental illness‐related distress and health‐related Quality of Life

Geerts, Erwin; Wiel, van de Harry; Tamminga, R. Y. J.

doi:10.1111/j.1365-2516.2008.01798.x

Cited by 40 publications

(71 citation statements)

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“…It appears to have a stronger impact on parents of patients with hemophilia than on the patients themselves (19).But our patients have not undergone this transition to adult health care facilities.…”

Section: Discussionmentioning

confidence: 96%

An examination of the symptoms of anxiety and parental attitude in children with hemophilia

Abali

Zulfikar²,

Demirkaya³

et al. 2014

Turk J Med Sci

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Background/aim: Hemophilia is an inherited disease with serious repercussions. Psychiatric symptoms are frequently seen in children and adolescents with hemophilia. The aim of this study was to assess symptoms of anxiety in children with hemophilia and parental attitude towards children with hemophilia.Materials and methods: 42 boys were assessed according to child and adolescent psychiatry. Anxiety symptoms and parental attitude were obtained by the State-Trait Anxiety Scale, the Self-Report for Childhood Anxiety Related Disorders (SCARED) and the Parent Attitude Research Instrument (PARI). Results:The mean age was 11.6 ± 2.5 (range; 7-16). State anxiety scores (44.02 ± 6.9) were higher than trait anxiety scores (32.7 ± 7.5). The most interesting results were high scores related to overprotective mothering (47.9 ± 9.7) and the application of strict discipline (39.4 ± 9.1). The total SCARED scores obtained were (23.25 ± 11.3). Conclusion:Assuring a high quality of life is important for children and adolescents with chronic illness. Quality of life is negatively affected by psychiatric symptoms (e.g. anxiety symptoms, depression, intra-familial stress symptoms) in children with hemophilia. This study suggests that high anxiety scores and problems related to parental attitude can be seen in children and adolescents with hemophilia. These problems caused by parental attitude and anxiety symptoms should be considered in the treatment of hemophilia.

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Section: Discussionmentioning

confidence: 96%

An examination of the symptoms of anxiety and parental attitude in children with hemophilia

Abali

Zulfikar²,

Demirkaya³

et al. 2014

Turk J Med Sci

View full text Add to dashboard Cite

show abstract

“…Young people have also expressed frustration at the over-involvement of parents post healthcare transition [53,54]. Parents therefore appear to be more concerned than their children about the adolescent's ability to be autonomous [35,55]. It is essential that parents understand the importance of supporting young people to develop the skills and confidence they need to effectively manage their own LTC throughout and beyond transfer to adult care [56].…”

Section: Discussionmentioning

confidence: 99%

“…Working in partnership with parents, as well as young people, will likely lead to a smoother and more effective transition for all. However, despite acknowledgement of the need for parent-targeted transition support [10,55,62] Allen et al [28] highlight that provision for parents is withdrawn at the time they need it most. Intervention studies remain limited.…”

Section: Discussionmentioning

confidence: 99%

Parenting a child with chronic illness as they transition into adulthood: A systematic review and thematic synthesis of parents’ experiences

Heath

Farré

Shaw

2017

Patient Education and Counseling

168

116

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Highlights Parents view young person progression to self-care as an incremental process.  Parent perceptions of child readiness and wellness impact on healthcare autonomy.  Parents are concerned about a lack of transitional healthcare.  Parents can adjust their behaviour to support their child's independence.  Healthcare professionals can support parents to facilitate adolescent autonomy. AbstractObjective: To understand how parents view and experience their role as their child with a long-term physical health condition transitions to adulthood and adult healthcare services. Methods: Five databases were systematically searched for qualitative articles examining parents' views and experiences of their child's healthcare transition. Papers were quality assessed and thematically synthesised. Results: Thirty-two papers from six countries, spanning a 17-year period were included. Long-term conditions were diverse. Findings indicated that parents view their child's progression toward self-care as an incremental process which they seek to facilitate through up-skilling them in self-management practices. Parental perceptions of their child's readiness, wellness, competence and long-term condition impacted on the child's progression to healthcare autonomy. A lack of transitional healthcare and differences between paediatric and adult services served as barriers to effective transition. Parents were required to adjust their role, responsibilities and behaviour to support their child's growing independence. Conclusion: Parents can be key facilitators of their child's healthcare transition, supporting them to become experts in their own condition and care. To do so, they require clarification on their role and support from service providers. Practice

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“…The Canadian Pediatric Society issued two position statements stating paediatricians should be flexible and highlighted the importance of considering the child’s developmental age when planning transition to adult services [14,15]. Research in the Netherlands has reported studies of adolescents’ and their parents’ experiences of transition [16,17], and more recently [18] evaluation of transition programmes available and the effect of transition to adult services on young people.…”

Section: Introductionmentioning

confidence: 99%

Study protocol: longitudinal study of the transition of young people with complex health needs from child to adult health services

et al. 2013

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BackgroundYoung people with complex health needs have impairments that can limit their ability to carry out day-to-day activities. As well as coping with other developmental transitions, these young people must negotiate the transfer of their clinical care from child to adult services. The process of transition may not be smooth and both health and social outcomes may suffer.Increasingly, policy-makers have recognised the need to ensure a smoother transition between children’s and adult services, with processes that are holistic, individualised, and person-centred; however, there is little outcome data to support proposed models of care. This study aims to identify the features of transitional care that are potentially effective and efficient for young people with complex health needs making their transition.Methods/DesignLongitudinal cohort study. 450 young people aged 14 years to 18 years 11 months (with autism spectrum disorder and an additional mental health problem, cerebral palsy or diabetes) will be followed through their transition from child to adult services and will contribute data at baseline, 12, 24 and 36 months. We will collect data on: health and wellbeing outcomes (participation, quality of life, satisfaction with services, generic health status (EQ-5D-Y) and condition specific measure of disease control or management); exposure to proposed beneficial features of services (such as having a key worker, appropriate involvement of parents); socio-economic characteristics of the sample; use of condition-related health and personal social services; preferences for the characteristics of transitional care.We will us regression techniques to explore how outcomes vary by exposure to service features and by characteristics of the young people. These data will populate a decision-analytic model comparing the costs and benefits of potential alternative ways of organising transition services.In order to better understand mechanisms and aid interpretation, we will undertake qualitative work with 15 young people, including interviews, non-participant observation and diary collection.DiscussionThis study will evaluate the effect of service components of transitional care, rather than evaluation of specific models that may be unsustainable or not generalisable. It has been developed in response to numerous national and international calls for such evaluation.

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A pilot study on the effects of the transition of paediatric to adult health care in patients with haemophilia and in their parents: patient and parent worries, parental illness‐related distress and health‐related Quality of Life

Cited by 40 publications

References 23 publications

An examination of the symptoms of anxiety and parental attitude in children with hemophilia

An examination of the symptoms of anxiety and parental attitude in children with hemophilia

Parenting a child with chronic illness as they transition into adulthood: A systematic review and thematic synthesis of parents’ experiences

Study protocol: longitudinal study of the transition of young people with complex health needs from child to adult health services

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