Initial validation of a healthcare needs scale for young people with congenital heart disease

Chen, Chi-Wen; Ho, Ciao Lin; Su, Wen‐Jen; Wang, Jou‐Kou; Chung, Hung Tao; Lee, Pi Chang; Lu, Chun‐Wei; Hwang, Be Tau

doi:10.1111/jan.13390

Cited by 12 publications

(13 citation statements)

References 30 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…More than 90% of caregivers believe that more support for heart patients is necessary, and more than 86% of caregivers believe that the intervention should be completed by cardiac healthcare professionals [12]. Our study aimed to explore the home care experiences of caregivers taking care of CHD children before and after cardiac surgery.…”

Section: Introductionmentioning

confidence: 99%

Home care experience and nursing needs of caregivers of children undergoing congenital heart disease operations: A qualitative descriptive study

Ding

Yao

2019

PLoS ONE

View full text Add to dashboard Cite

Aims and objectivesTo explore the home care experiences of caregivers taking care of CHD children before and after cardiac surgery.BackgroundDespite the prevalence of congenital heart disease (CHD) in childhood, little is known about the experiences and impacts on the children and their caregivers after CHD diagnosis and surgery. Such knowledge is needed for meaningful support.DesignA qualitative descriptive study.MethodsTwenty-two caregivers of CHD children undergoing cardiac surgery participated in semi-structured interviews at a University Children’s Hospital in China. Data were collected by an experienced and trained interviewer. Qualitative content analysis was chosen to describe the experiences of the caregivers.ResultsCaregivers of CHD children experienced significant demands. After the children underwent their CHD operations, the caregivers experienced complex psychological feelings and excessive stress impacting upon theirlives. In addition, caregivers constantly adapted their roles with self-fulfillment in caring activities.ConclusionsCHD surgery has a major impact on the emotions and daily lives of children and their caregivers. This study offers a framework for understanding the importance of actively listening to caregivers so coping strategies can be implemented.Relevance to clinical practiceTheexperiencesdescribed in this study contribute to a better understanding of the needs of caregivers whose children underwent CHD operations. They also provide valuable information to professional medical care staff that developfuture nursing assessments.

show abstract

Section: Introductionmentioning

confidence: 99%

Home care experience and nursing needs of caregivers of children undergoing congenital heart disease operations: A qualitative descriptive study

Ding

Yao

2019

PLoS ONE

View full text Add to dashboard Cite

show abstract

“…Adolescents with Type 1 Diabetes (n=7) and HIV (n=4) constituted half of the total number of studies. Other conditions were Asthma [34,35], Cerebral Palsy [36,37], Cystic Fibrosis [38,39] and Chronic Pain [40,41] with two studies each; with single studies on Congenital Heart Disease [42], Sickle cell disease [34], Cancer [38], Adolescent Idiopathic Scoliosis [43], Juvenile Idiopathic Arthritis [44], Strabismus and Short Stature [45]. Chronic Disease (unspeci ed by authors) [35].…”

Section: Study Characteristicsmentioning

confidence: 99%

“…The VSP-A is a generic HRQoL instrument for adolescence that was originally developed in France. The instrument has 10 subscales in total and seven mental wellbeing subscales-psychological wellbeing, relationships with friends, relationships with parents, leisure activities, relationships with teachers, relationships with medical staff and body image Additionally, three of the instruments were identi ed as QoL instruments namely, WHO Quality of Life BREF [42]; Cerebral Palsy Quality of Life Questionnaire-Teen [36,57]; and the Quality of Life in Short Stature Youth (QoLiSSY) [45].…”

Section: Health Related Quality Of Life and Quality Of Life Scalesmentioning

confidence: 99%

“…The Healthcare Needs Scale for youth with Congenital Heart Disease HNS-CHD [42] is a disease speci c instrument which assesses the transitional healthcare needs of adolescents and young adults living with a congenital heart disease. Two of the ve subscales measure individual and interpersonal and policy needs which are related to the patient's mental wellbeing.…”

Section: Instrument Measuring Healthcare Needs In Youthmentioning

confidence: 99%

See 1 more Smart Citation

Measuring Mental Wellness Among Adolescents Living With A Physical Chronic Condition: A Systematic Review of the Mental Health and Mental Wellbeing Instruments

Orth

Wyk

2021

Preprint

View full text Add to dashboard Cite

Background: Globally, promoting mental health and wellbeing among adolescents has become a public health priority, especially for adolescents living with a chronic condition (CC) as research suggests they may be more at risk of developing mental health co-morbidities. Valid and reliable instruments are needed to measure and better understand mental health and mental wellbeing among adolescents living with a CC. To this end, we reviewed studies reporting on mental health and well-being instruments used in adolescent populations living with a chronic physical condition/disease globally.Methods: We used a systematic review method guided by PRISMA to identify assess mental health and mental wellbeing instruments used in adolescents living with a CC. In this instance, mental health instruments were defined as those representing negative domains of mental health (i.e. depression and anxiety) while mental wellbeing instruments included positive aspects of mental health (i.e. self-concept and resilience). Results: We identified 22 articles, which include 31 instruments that were used to measure either mental health (n= 8) or mental wellbeing (n= 15) or both (n=8) in adolescents living with a CC. Of these, thirteen studies used a Health-Related Quality of Life (HRQoL) scale to measure mental health and/or mental well-being; and three studies used. The KIDSCREEN questionnaires and the Strengths and Difficulties Questionnaire were identified as being frequently used across the 22 studies. Additionally, 7 out of the 31 instruments were disease specific, with 3 focusing on adolescents with diabetes. All the instruments were developed in high income countries and adapted for use in lower- and middle-income countries (LMICs). Adolescents with Type 1 Diabetes (n=7) and HIV (n=4) were researched in 11 out of 22 studies. Only eight studies were conducted in LMIC, of which four were in Africa. Conclusions: The findings suggest that HRQoL instruments seem to be useful in measuring mental health - and wellbeing in adolescents living with a CC. Relatively few valid measures of mental health and mental wellbeing for adolescents living with a CC exist generally, which confirms the paucity of research on mental health and mental well-being of adolescents who are living with a CC. There is a need for measures to be developed in LMIC where cultural contexts differ greatly and affects well-being in unique ways.Systematic review registration: PROSPERO CRD42020186707

show abstract

“…Yapılan araştırmalar göstermiştir ki konjenital kalp hastalığı olan adölesanlarda erişkin bakıma sorunsuz geçişin sağlanması için hemşirelere önemli roller düşmektedir. Etkin geçiş bakımı verebilmek için; adölesan ve ebeveynlerinin geçiş bakımı eğitimlerine erken adölesanlık döneminde başlanmalı, hastane politikalarına geçiş bakım modelleri entegre edilmeli, pediatri ve erişkin kardiyoloji ekipleri koordineli çalışmalıdır (9,33,34). Flocco ve ark.…”

Section: Sonuç Ve öNeri̇lerunclassified

Konjeni̇tal Kalp Hastaliği Olan Adölesanlarin Eri̇şki̇n Bakima Geçi̇şi̇nde Yaşadiklari Sorunlar Ve Hemşi̇reli̇k Yaklaşimlari

Ercan¹,

Kiziler²

2020

Journal of Anatolia Nursing and Health Sciences

View full text Add to dashboard Cite

Günümüzde konjenital kalp cerrahisindeki gelişmeler, konjenital kalp hastalığı olan çocukların yaşam süresinin uzamasına ve %95'ten fazlasının erişkin yaşama ulaşmasına olanak sağlamıştır. Bu durum hormonal, bilişsel, fiziksel ve entelektüel değişikliklere uyum sağlamaya çalışan adölesanların kalp hastalığı ile birlikte pediatriden erişkin bakıma geçişini gerekli kılmaktadır. Erişkin sistem yönetimine hazır olmayan adölesanlar, pediatrik ve yetişkin üniteleri arasındaki bakım ve yaklaşım farklılıkları, bakımın planlanması ve kurum desteğindeki eksiklikler gibi nedenlerle çeşitli sorunlar yaşamakta ve geçişe direnç göstermektedir. Pediatri hemşireleri konjenital kalp hastalığı olan adölesanların erişkin bakıma geçişinde kritik rol oynamaktadır. Bu çalışmada konjenital kalp hastalığı olan adölesanların pediatrik bakımdan erişkin bakıma geçişte yaşadıkları sorunlar ile etkin bir geçişe rehberlik edecek hemşirelik uygulamalarının belirlenmesi amaçlanmıştır.

show abstract

Initial validation of a healthcare needs scale for young people with congenital heart disease

Abstract: Aim: To validate the initial psychometric properties of a Healthcare Needs Scale for Youth with Congenital Heart Disease.Background: As the number of patients with congenital heart disease surviving to

Cited by 12 publications

References 30 publications

Home care experience and nursing needs of caregivers of children undergoing congenital heart disease operations: A qualitative descriptive study

Home care experience and nursing needs of caregivers of children undergoing congenital heart disease operations: A qualitative descriptive study

Measuring Mental Wellness Among Adolescents Living With A Physical Chronic Condition: A Systematic Review of the Mental Health and Mental Wellbeing Instruments

Konjeni̇tal Kalp Hastaliği Olan Adölesanlarin Eri̇şki̇n Bakima Geçi̇şi̇nde Yaşadiklari Sorunlar Ve Hemşi̇reli̇k Yaklaşimlari

Contact Info

Product

Resources

About