ABSTRACT
There is a lack of highly reliable tools evaluating healthcare professionals' competences on Pediatric Palliative Care (PPC) and Pain Therapy (PT). The aim of this study is to document the development of an online questionnaire to assess Perceived, Wished and Actual Knowledge of healthcare workers on PPC/PT. The tool was built on the basis of the Italian Society for Palliative Care PPC Core Curriculum (CC) for physicians, nurses and psychologists. Face validity, internal consistency and the underlying structure were evaluated after a field testing in a referral hospital, Friuli-Venezia Giulia, Italy. One hundred five respondents completed the questionnaire. High internal consistency for both scales of Perceived and Wished Knowledge was found (α = 0.95 and α = 0.94, respectively). Psychologists reported higher levels of self-Perceived skills on the psychosocial needs of the child and family at the end of life (p = 0.006), mourning (p = 0.003) and ethics and deontology in PT/PC (p = 0.049). Moreover, when Actual Knowledge was tested, they also provided the highest number of correct answers (p = 0.022). No differences were found by profession for Wished Knowledge. The questionnaire showed promising psychometric properties. Our findings suggest the need of continuous training in this field and identify contents to be addressed in future training programs.
ABSTRACT
BACKGROUND: Care coordination is widely recognized as a key element of care for patients with chronic and complex medical conditions and their families. In care for children with special health care needs the Family Pediatrician (FP) plays a central role as care coordinator. This study aims to evaluate the FPs' activities of care coordination for children with special health care needs in the pediatric primary care setting, using an on-line measurement tool. METHODS: Within the prospective cohort study SpeNK (Special Needs Kids), newborns and children with special health care needs were recruited at discharge from three hospital facilities in Bologna province, from October 1st 2012 to September 30th 2014. Their FPs were invited to complete a questionnaire (SpeNK-FP) at each encounter for the patient during a 9-month period after hospital discharge. SpeNK-FP was developed by adapting the Care Coordination Measurement Tool (CCMT©) developed by Antonelli et al., to the Italian organizational context. The outcome of interest, derived from the questionnaire, is inappropriate use of services. RESULTS: Forty FPs completed assessments for 49 children at each of 382 clinical encounters. The majority of children (71.4%) had special health care needs, without complicating social issues. FPs reported "no need for care coordination" in 50.8% of the encounters and 41.1% of records about patient needs requiring care coordination. The most common activity implemented to meet children's needs was telephone contact with a medical provider. According to FPs, 80% of encounters prevented inappropriate services use. In multivariate regression, pediatric-specialist contact (telephone or in person) was associated with reduced odds of physician report of preventable hospitalization (OR = 0.06, 95% CI 0.01-0.42, p = 0.005). CONCLUSIONS: The study shows the potential for FPs in Italy to serve as care coordinators and facilitate the implementation of integrated care pathways for children with special health care needs.
Subject(s)
Disabled Children , Needs Assessment , Pediatrics , Physician's Role , Adolescent , Adult , Child , Child Health Services/organization & administration , Child, Preschool , Cohort Studies , Female , Follow-Up Studies , Humans , Infant, Newborn , Italy , Male , Patient Care Team/organization & administration , Pediatrics/organization & administration , Prospective Studies , Surveys and QuestionnairesABSTRACT
BACKGROUND: To explore parents' experiences and perceptions on informational, management and relational continuity of care for children with special health care needs from hospitalization to the first months after discharge to the home. METHODS: Semi-structured interviews and a focus group were carried out to capture parents' experiences and perceptions. Transcripts were analyzed using a directed approach to the qualitative content analysis. RESULTS: 16 families participated to this study: 13 were involved in interviews (10 face-to-face and 3 by phone) and 3 in a focus group, within 1-6 months after discharge from the University Hospital of Bologna (S.Orsola/Malpighi) and from hospitals of Bologna Province. To parents of children with special health care needs, the three domains of continuity of care were relevant in a whole but with different key elements during hospitalization, at discharge and after discharge. Moreover, empowerment emerged from parents' narratives as essential to help parents cope with the transition from the hospital setting to the new responsibilities connected with the home care of their child. Parent's perceptions about the family pediatrician concerned his/her centrality in the activation and coordination of the healthcare network. Moreover, parents exhibited different attitudes towards involvement in decision making: some wished and expected to be involved, others preferred not to be involved. CONCLUSIONS: Care coordination for children with special care needs is a complex process that need to be attended to during the hospitalization phase and after discharge to the community. The findings of this study may contribute to elucidating the perceptions and experiences of parents with children with special health care needs about the continuity of care from hospital to community care.
Subject(s)
Attitude to Health , Child Health Services , Continuity of Patient Care , Disabled Children , Parents , Adaptation, Psychological , Child , Chronic Disease/therapy , Focus Groups , Health Services Research , Humans , Interviews as Topic , Needs Assessment , Qualitative ResearchABSTRACT
INTRODUCTION: Children with special health care needs are an exponentially growing population needing integrated health care programmes that involve primary, community, hospital and tertiary care services. The aims of the study are (1) to develop and validate the Special Needs Kids Questionnaire (SpeNK-Q) designed to measure parents' perspective on continuity of care for children with special health care needs and (2) to evaluate the continuity of care based on parental experiences in this population. METHODS: SpeNK-Q was derived from a previous qualitative study and was based on Haggerty's constructs of informational, management and relational continuity. Parents of preterm birth children completed the 20-item SpeNK-Q at the second or subsequent planned follow-up visit after the child's hospital discharge. Principal component analysis was used to examine the structure of the instrument. RESULTS: Principal component analysis of 101 questionnaires administered allowed us to identify five factors explaining 60.2% of item variance: informational continuity; coordination of care; continuity of family-paediatrician relationship; family support; information on care plan. CONCLUSIONS AND DISCUSSION: SpeNK-Q proved to be a psychometrically promising instrument. Its utilisation could improve the identification of areas for service development, the delivery of coordinated care and support policy makers in redesigning integrated services.
