Perceived Quality of Life and Health of Hospitalized Children

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Perceived Quality of Life and Health of
Hospitalized Children
ISCI INAUGURAL CONFERENCE Chicago, June 26-28,
2007

• Francisca González-Gil, PhD.
• Cristina Jenaro Río, PhD.
• María Gómez-Vela, PhD.
• Noelia Flores Robaina

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HOSPITALIZACION
QUALITY OF LIFE OF HOSPITALIZED CHILDREN
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Core Principles and domains
QUALITY OF LIFE
Difficulties of assessment at early ages
Subjective and objective assessment
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OBJECTIVES

• To assess the extent in which hospitals are
  prepared to meet the needs of hospitalized
  children.
• To identify the impact of organizational factors
  in the quality of life of hospitalized children.
• To determine the perceived quality of life of
  hospitalized children.
• To determine the impact of the emotional state of
  hospitalized children on their quality of life.
• ..

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RESEARCH QUESTIONS

• 1- What are the needs related to the quality of
  life of hospitalized children?
• 2- Are the general hospitals prepared to meet the
  needs of hospitalized children?

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HYPOTHESIS

• 1- Hospitalized children will experience a low
  quality of life (differences based on nº of
  hospitalized days, and no differences based on
  age, gender, and hospital)
• 2- Organizational variables will significantly
  impact on perceptions toward quality of life of
  hospitalized children (differences based on
  amount of information received)
• 3- Emotional states will impact on childrens
  perceptions on their quality of life (differences
  based on feeling or not worried, anxious, angry,
  happy, sad, scared or busy)

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PARTICIPANTS

• 105 children, between 6 and 15, hospitalized in 8
  public hospitals in Castilla-Leon (Spain)

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MEASURES

• Questionnaire of Subjective Perception of
  Hospitalization -CPSH (González, Jenaro Ortiz,
  2001)
• Questionnaire of Quality of Life KINDL
  (Bullinger y Ravens-Sieberer, 1997, translated
  and adapted by González, Jenaro Ortiz, 2001)
• Questionnaire of Health SF-36 (Ware, 1992
  translated and adapted by González, Jenaro
  Ortiz, 2001)

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Measures CPSH

• Sociodemographich data and 35 open-ended
  questions

• General questions
• Reasons of hospitalization
• Activities
• The hospital
• Feelings

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Measures KINDL

• Adapted version of the KINDL

• 40 items, Likert-type answers of 5 point, to
  assess

• Physical well-being
• Emotional well-being
• Daily living activities
• Social relationships

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Measures SF-36

• Childrens appraisal of their health and
  expectations of recovery
• 36 closed-ended questions regarding

1- interferences with physical activity 2-
health 3- limitations on tasks/activities during
last 4 weeks 4- interferences of feelings on
tasks 5- interferences of pain 6- depressive mood
or lack of well-being 7- interferences of health
on moderate activity 8- subjective assessment of
general health
2 factors
1- Subjective assessment of health and its
impact 2- Objective assessment of health and its
impact
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RESULTS

• Analysis of Research Questions
• Contrast of Hypotheses

CONCLUSIONS
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First QuestionNeeds related to QoL

• CPSH low Emotional Well-being (feelings
  correlated)
• KINDL Mean-low scores on QoL domains
• SF-36 Psychological discomfort, confusion, and
  lack of knowledge

Correlations among measures
- Between feelings associated to low Emotional
Well-being (CPSH SF-36)
- Association between health and perceived QoL
Hospitalized children have QoL related
needs Psychological, educational, and social
support
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Second QuestionAre the Hospitals prepared?
Pediatric units of general hospitals are not
prepared to meet the needs of Hospitalized
children
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Hypothesis 1Low QoL

• Association Hospitalization-QoL

- Medium-low scores on QoL (DLA, PW, EM
TOTAL) - VARIABLES - Age No significant
differences in TOTAL. Youngest Lowest
IR Oldest Lowest DLA - Gender - Nº days
Hospitalized - Hospital
No significant differences
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Hypothesis 2 Organizational Variables

• Association Knowledge, explanations and QoL

Knowledge/ Explanations
- disease/ reasons of hospitalization
significant differences on EM, DLA TOTAL
Knowledge associated to Higher QoL
- procedures No significant differences
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Hypothesis 3Emotional State and QoL

• Association CPSH QoL

Emotional States of children
- worry - anxious - scared - sad
Significant differences
- angry - happy - busy
No significant differences
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DISCUSSION

• 1- Hospitalized children experience low QoL
• 2- General hospitals are not prepared to meet
  the needs of hospitalized children
• 3- Emotional states of hospitalized children
  impact on their QoL.
• 4- Hospitalized children experience
  psychological, educational and social support
  needs
• 5- Measures with appropriate psychometric
  properties to assess children hospitalization,
  QoL and health appraisal

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SUGGESTIONS for IMPROVEMENT
Person-Centered Planning
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Tonucci, 1984