Adolescent HealthChronic Health ConditionCross-cultural Development of a Child Health Care Questionnaire on Satisfaction, Utilization, and Needs
Section snippets
Process of Instrument Development
A multistage process was employed for instrument development: 1) literature review of conceptual frameworks and existing measures, 2) a priori definition of inclusion of items in the provision-of-services module, 3) focus groups to generate items valid for the population, 4) translation of items into English, 5) generating an item pool through a card-sorting procedure and expert rating, 6) forward-backward translations of a pilot version, 7) pilot testing in all countries, 8) psychometric
Development of the Pilot Version
From the focus group interviews, 367 statements with respect to health care were derived. The majority were derived from parents (87.5%); 45 statements from adolescents (8.6%), and 20 from professionals (3.9%).
The pilot version of provision of services had 43 items. Only 16 statements were extracted from focus groups and 27 statements from the literature review on utilization, access, and needs. Generally, the first question asked for utilization within the last year (yes/no), followed by a
Discussion
The aim of the study was to develop and test an instrument to assess health care needs and satisfaction with care in parents of CSHCN. We aimed to develop an instrument available in different languages to contribute to evaluation of health services for children with chronic conditions across countries and health care settings. The current instrument focuses on specialist care for CSHCN and can be compared with other health care instruments in similar populations. Compared with the adult
Conclusions
Increasing mobility, the political aim to harmonize systems across Europe,44 a shared agenda in promoting healthy development, and maximizing participation in those growing up with a chronic health condition led to a multinational approach to address health care needs from a consumer’s perspective. We developed a measure (CHC-SUN) that includes a provision-of-service module concerning service utilization and access as well as unmet needs on a descriptive level, and a 6-scale
Acknowledgments
The DISABKIDS study was funded by the European Commission, grant QLG5-CT-2000-00716 (the European DISABKIDS Group).
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2018, SeizureCitation Excerpt :An advantage of developing a robust tool which reliably and accurately measures the experience of parents/carer and young people is that it can then be used in future audits of paediatric epilepsy services. The composition and face validity of the PREM was informed by an extensive literature review which focussed on previous surveys of patient’s experiences and satisfaction [4–6], and experience among patient users with epilepsy and other NHS services [7–9]. Face validity was ensured by consulting health professionals, young people with epilepsy, and parents of children and young people with epilepsy on the design of the questionnaire.
A multicenter prospective quasi-experimental study on the impact of a transition-oriented generic patient education program on health service participation and quality of life in adolescents and young adults
2016, Patient Education and CounselingCitation Excerpt :For our study, the questionnaire was slightly adapted for the situation of adolescents resulting in few semantic differences (for example by replacing the word “health care provider” with “medical specialist”). Satisfaction with health care was measured using a self-report version for children and adolescents with chronic conditions [CHC-SUN self,35] adapted from the German version of the Child Health Care Questionnaire on Satisfaction, Utilization and Needs [CHC-SUN,36]. The 42-item instrument was developed to evaluate pediatric health services for children and adolescents with special health care needs.
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2015, Disability and Health JournalParental satisfaction with quality of care in neonatal follow-up programs
2011, Journal of Neonatal NursingCitation Excerpt :Parents whose children were classified as neurodevelopmentally normal were significantly more satisfied than parents with a child classified as neurodevelopmentally abnormal, but only when considered in combination with study site. These findings are similar to a number of studies found in the pediatric and neonatal literature, where higher levels of parental satisfaction were associated with better health and developmental outcomes (Carrigan et al., 2001; Halfon et al., 2004; King et al., 2001; McCormick et al., 2008; Schmidt et al., 2007; Ygge and Arnetz, 2001). It is not surprising that the current study identified that children with normal neurodevelopmental status have parents who are more satisfied as the diagnosis of normal neurodevelopmental status is the desired (positive) outcome for parents of high-risk children.
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The DISABKIDS Group comprises a coordinating group (Monika Bullinger, Silke Schmidt, Corinna Petersen) and study centers in 7 countries: Michael Quittan, Othmar Schuhfried (Austria); Marie Claude Simeoni, David Debensasson (France); Ute Thyen, Esther Müller-Godeffroy (Germany); Athanasios Vidalis, John Tsanakas, Elpis Hatziagorou, Paraskevi Karagianni (Greece); Hendrik Koopmann, Rolanda Baars (the Netherlands); John Chaplin (Sweden); Mick Power, Clare Atherton, Peter Hoare (United Kingdom).