Listening to the Voice of the Hospitalized Child: Comparing Children’s Experiences to Their Parents (original) (raw)
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Developing an Interactive Survey Instrument to Capture Hospitalized Children’s Experience
2019
Most child-patients do not provide their own account of their healthcare experiences and are instead represented by their parents/legal guardians. A common belief is that children lack the perceptiveness, knowledge, experience, or maturity needed to answer questions on a complex subject such as their health and the care received while hospitalized. However, the literature suggests that children can provide valuable feedback about their experiences, which can differ from the perspective of their parent/guardian. The overall goal of this project is to 1. Determine whether child-patients perceive their healthcare experiences differently than their parents. 2. Identify the key domains whereby they differ. 3. Evaluate and explain the differences in perceived healthcare quality between child-patient and parent. 4. Develop innovative and engaging tools/instruments to obtain hospitalized children’s experience and meaningful feedback. This paper will describe the methodology, insights, and c...
The child's voice in satisfaction with hospital care
Journal of Pediatric Nursing, 2020
Patient satisfaction is a quality improvement indicator used to evaluate care. Ratings of patient satisfaction in pediatrics exclude the child voice. We tested the feasibility and acceptability of a new model that included both child and parent satisfaction ratings. Design and methods: We executed a randomized, two-arm, unblinded cohort study comparing child (aged 7-17 years) and parent reports (Arm 1) to parent report only (Arm 2) among a convenience sample of inpatients at a single urban pediatric medical center. The primary (feasibility and acceptability) and secondary outcomes were assessed at the time of discharge (T1) and approximately 10 days following discharge (T2) (standard timing). Results: Of 672 screened families, 89.3% (n = 600) enrolled in the study; 362 children and parents were randomized to Arm 1 and 238 parents to Arm 2. Patients (98.6%) and parents (99.8%) indicated preference for providing satisfaction ratings at the time of discharge. Seventy-five percent of families (n = 488) completed T1 and T2; neither child nor parent ratings differed significantly between T1 and T2 nor did parent ratings differ between the two study arms. Nurse friendliness, courtesy, and feeling well cared for were among the highest rated items at T1 and T2 by both children and parents. Conclusions: Children 7 to 17 years of age and their parents are willing and like to provide satisfaction with care ratings prior to hospital discharge. Practice implications: This measurement model could yield valid findings representative of hospitalized children and their parents, and could become the basis for a new and needed measurement approach for pediatric satisfaction with hospital care.
2004
Other studies have shown that health care professionals were sometimes unwilling to share their power, rejecting the mothers' input and suggestions. Conversely, when hospital staff recognize the mothers' competence, hospital staff were reported to place too much responsibility on the mothers (Darbyshire 1993). In a study by Neill (1996) parents wanted to participate in decisions about their degree of involvement in the child's care. Problems of communication between parents and hospital staff were identified in this study as well. In a study by Hallström et al. (2002) the purpose was to examine the extent to which parents participate in decisions during the hospitalization. Thirty-four parents of 24 children were observed. The results showed that parents have varying abilities to be involved in decisionmaking, and that hospital staff need to communicate more openly with them, since some parents are unable or unwilling to express their needs. Marino and Marino (2000) demonstrated that the more problems parents experienced with communication or with partnership, the less satisfied they were with care. A recently published study by Nobile and Drotar (2003) reviewed thirty-one articles that focused on parent-provider communication in the context of pediatric care. An effective parent-provider communication is associated with parent satisfaction with care and adherence to treatment recommendations. According to the authors, previous research has been limited by the lack of theory. This limited the generalizability of the research findings and the ability to evaluate in interventions aimed at enhancing parent-provider communication on pediatric outcomes (Nobile and Drotar 2003).
Self-reported experience of hospitalized children: an integrative review
Revista Brasileira de Enfermagem
Objective: To identify available evidence about the self-reported experience of hospitalized children. Methods: An integrative review was carried out, and the survey occurred between September and November 2017, in the electronic sources DLTD-USP, CAPES, IBICT, MEDLINE, LILACS and BDENF. Results: Ten studies were found, prevailing samples with descriptive design and approach in qualitative and mixed methods research. The literature evidenced the experience of hospitalized children through the report of parents and health professionals; few were self-reported by the child itself. Five themes were identified: Understanding the time of hospital admission, relevance of care received, feeling of pain, importance of the patient companion, information received about hospitalization. Conclusion: It was found that experiences in childhood are able to have repercussions throughout life, and it is relevant that nursing is attentive to their clients’ perception in order to have more satisfactio...
Maternal and Child Health Journal, 2016
The aim of this study was to determine how pediatric patients and their parents perceive health care during hospital stays, what are their expectations of doctor behaviors, and which components of care do they consider to be the most important. Methods A qualitative descriptive study was carried out using the open interview technique. Twenty-six parents and 22 children undergoing hospital treatment participated. Results Our analysis identified two major themes: (1) doctor verbal and non-verbal behaviors, which included informing and explaining, conversations on topics other than the illness, tone of voice and other behaviors; and (2) perceived strategies used by doctors. This category included claims of doctors' intentional use of medical jargon to avoid addressing parental questions directly. Parents admitted that they did not understand medical vocabulary, but they also thought they might understand more of the medical issues if the doctor spoke using terms comprehensible to them. Conlcusions Our study shows the importance of interpersonal relationship affecting patient perception of quality of pediatric care. Parents of pediatric patients perceive that doctors behave in ways that deflect parents' questions and avoid providing them with medical information. Such behaviors include doctors excusing themselves by saying they are busy and using medical jargon. Medical students and doctors should be trained to communicate effectively with patients and their parents and develop skills to convey information in a simple and comprehensible way.
Children's voices in public hospital healthcare delivery: intention as opposed to practice
The New Zealand medical journal, 2014
To determine the extent to which children have the opportunity to provide feedback on public hospital care in New Zealand. A scan of the web sites of the Ministry of Health and the Health Quality and Safety Commission New Zealand (HQSC) together with a search of core District Health Board publications was conducted to identify existing or planned processes to capture the hospital experience of patients under 18 years. The importance of gathering patient feedback was recognised but, currently, ad hoc strategies are being used to put these good intentions into practice. Although some DHBs are introducing novel methods of gathering patient feedback, details of data collection methods and characteristics of participants are often not publicised. The HQSC has developed an adult Inpatient survey to provide a coherent means of assessing patient experience nationally but there is currently no children's survey available. Our analysis suggests a lack of opportunity for children's per...
Children and young people’s versus parents’ responses in an English national inpatient survey
Archives of Disease in Childhood, 2018
ObjectiveDespite growing interest in children and young people’s (CYP) perspectives on healthcare, they continue to be excluded from many patient experience surveys. This study investigated the feasibility of, and additional information gained by, measuring CYP experiences of a recent hospital admission.DesignCross-sectional analysis of national survey data.SettingInpatients aged 8–15 years in eligible National Health Service hospitals, July–September 2014.Participants6204 parents/carers completed the parent section of the survey. The CYP section of the survey was completed by CYP themselves (n=3592), parents (n=849) or jointly (n=1763).Main outcome measuresPain relief, involvement, quality of staff communication, perceived safety, ward environment, overall experience.AnalysesSingle-measures intraclass correlations (ICCs) were used to assess the concordance between CYP and parent responses about the same inpatient episode. Multilevel logistic regression models, adjusted for individu...
Factors Associated With Family Experience in Pediatric Inpatient Care
Pediatrics, 2020
BACKGROUND: Hospitals are rapidly increasing efforts to improve the pediatric inpatient experience. However, hospitals often do not know what to target for improvement. To determine what matters most to families, we assessed which aspects of experience have the strongest relationships with parents’ willingness to recommend a hospital. METHODS: Cross-sectional study of 17 727 surveys completed from November 2012 to January 2014 by parents of children hospitalized at 69 hospitals in 34 states using the Child Hospital Consumer Assessment of Healthcare Providers and Systems Survey. Hierarchical logistic regressions predicted the “top box” for willingness to recommend from measures of specific care dimensions (nurse-parent communication, doctor-parent communication, communication about medicines, keeping parents informed about the child’s care, privacy with providers, preparing to leave the hospital, mistakes and concerns, child comfort, cleanliness, and quietness), adjusting for parent-...
Patient-Reported Experience in the Pediatric Emergency Department: What Matters Most?
Journal of patient safety, 2018
Although the Child Hospital Consumer Assessment of Healthcare Providers and Systems is a validated tool for the inpatient experience, it may not address features unique to the pediatric emergency department (PED). There is currently no publicly available validated patient-reported experience survey for the PED, and what matters most in this setting remains unknown. Twelve semistructured interviews were conducted with a convenience sample of parents of children younger than 14 years at a Canadian PED. Data analysis was performed using inductive thematic analysis to identify aspects of patient-reported experiences that matter most to parents in the PED. Five themes were identified: (1) making waiting a positive experience, (2) taking the time to provide care, (3) forging a positive partnership, (4) speak up for safe care, and (5) making the environment feel safer. Parents highlighted that while waiting for care is not desirable, it is made more acceptable through the communication of ...
A study of parental involvement in pediatric hospital care: implications for clinical practice
Journal of Pediatric Nursing, 2004
Background: Although it has become common practice for parents to stay with their sick child in hospital, most hospitals lack routines and staff guidelines for involving parents in care processes and decisions. Aim: To gain a deeper understanding of factors that influence parental involvement and to clarify the parental role in the hospital care of chronically ill children. Methods: Semistructured interviews with 14 parents of chronically ill children. Results: Four themes were identified: support, professionalism, work environment, and responsibility. These themes describe the experience and perceptions of parents who regularly spend time in the hospital with their children. Conclusions: Clinical practices regarding parental involvement need to be established to optimize the hospital care of chronically ill children.