Elsevier

Ambulatory Pediatrics

Volume 7, Issue 5, September 2007, Pages 374-382
Ambulatory Pediatrics

Adolescent Health
Chronic Health Condition
Cross-cultural Development of a Child Health Care Questionnaire on Satisfaction, Utilization, and Needs

https://doi.org/10.1016/j.ambp.2007.04.007Get rights and content

Objective

The instrument Child Health Care–Satisfaction, Utilization and Needs (CHC-SUN) has been developed cross-culturally to evaluate pediatric health care services for children with special health care needs (CSHCN) from the proxy perspective of parents.

Methods

The children of the participating parents received treatment in pediatric specialty clinics in 7 European countries for asthma, cystic fibrosis, diabetes, epilepsy, cerebral palsy, rheumatoid arthritis, and atopic dermatitis. The instrument was developed through a process including literature review, expert consensus, and item generation through focus groups. The pilot instrument was extensively tested to assess psychometric properties, support item reduction, and evaluate clinical validity. The final field version was tested in a new sample of 795 parents in 7 countries.

Results

Pilot testing and item reduction resulted in a practical 40-item instrument with 14 single items related to provision of services (module 1), and 26 items related to 6 scales on satisfaction with care (module 2), and 1 item on general satisfaction with care. Satisfaction with care scales showed very good psychometric properties, both initially and in the field version, with Cronbach’s alpha ranging between .80 and .95 in the revised scales. Both modules discriminated well between functional status and diagnosis across countries.

Conclusions

A new instrument is available to measure provision of services and satisfaction with care for children with chronic conditions from the perspective of parents. Cross-cultural analysis reveals that the measure is useful in multinational studies evaluating health services against the background of different health systems.

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).

References (44)

  • M. Seid et al.

    Measuring quality of care for vulnerable children: challenges and conceptualizations of a pediatric outcome measure of quality

    Am J Med Qual

    (2000)
  • O.A. Arah et al.

    Conceptual frameworks for health systems performance: a quest for effectiveness, quality and improvement

    Int J Qual Health Care

    (2003)
  • Kelley E, Hurst J. Health Care Quality Indicators Project: Conceptual Framework Paper. Organization for Economic...
  • M. Bullinger et al.

    Assessing quality of life of children with chronic health conditions and disabilities: a European approach

    Int J Rehabil Res

    (2002)
  • S. Schmidt et al.

    The DISABKIDS Manual

    (2006)
  • A.W. Riley et al.

    Determinants of children’s health care use: an investigation of psychosocial factors

    Med Care

    (1993)
  • A. Donabedian

    An Introduction to Quality Assurance in Health Care

    (2003)
  • R.E. Stein et al.

    Health care services received by children by children with chronic illness

    Am J Dis Child

    (1983)
  • G.A. King et al.

    Family centered-caregiving and well-being of parents of children with disabilities: linking process to outcome

    J Pediatr Psychol

    (1999)
  • C.D. Bethell et al.

    Using existing population-based data sets to measure the American Academy of Pediatrics definition of medical home for all children and children with special health care needs

    Pediatrics

    (2004)
  • S. Wharton et al.

    The accessibility of general NHS services for children with disabilities

    Child Care Health Dev

    (2005)
  • L. Quine et al.

    Stress and Coping in Families Caring for a Child with Severe Mental Handicap: A Longitudinal Study

    (1989)
  • Cited by (30)

    • Evaluation of a questionnaire to measure parent/carer and child/young person experience of NHS epilepsy services

      2018, Seizure
      Citation 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 Counseling
      Citation 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.

    • Parental satisfaction with quality of care in neonatal follow-up programs

      2011, Journal of Neonatal Nursing
      Citation 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.

    View all citing articles on Scopus

    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).

    View full text