Publication Date

2011-07-18

Availability

Embargoed

Embargo Period

2013-07-17

Degree Type

Dissertation

Degree Name

Doctor of Philosophy (PHD)

Department

Psychology (Arts and Sciences)

Date of Defense

2010-10-18

First Committee Member

Alexandra L. Quittner

Second Committee Member

Annette M. La Greca

Third Committee Member

Alan M. Delamater

Fourth Committee Member

Neena M. Malik

Abstract

Objective: A significant number of children suffer from life-limiting illnesses, with many dying each year in the U.S. Services, beyond standard medical care, aimed at increasing overall quality of life for children with life-limiting illnesses, are greatly needed within and outside of our hospitals. Palliative care is conceptualized as treatment provided to relieve symptoms and improve quality of life. Despite the empirically supported benefits of providing pediatric palliative care, only a small percentage of pediatric patients actually receive these services. Thus, there is a great need for the development and provision of these services. The first aim of the current study was to compare results from Holtz Children’s Hospital (HCH) at the University of Miami with those from Lucile Packard Children's Hospital (LPCH) at Stanford University, where a survey assessing pediatric healthcare providers’ palliative care needs was originally developed. The second aim was the modification and further development of the measure, including an evaluation its psychometric properties. The third aim was to identify the educational and training needs of healthcare providers in providing pediatric palliative care. The fourth aim was to evaluate whether completing the survey improved awareness of a palliative care team. Method: Two hundred and twenty five healthcare providers at HCH completed the Survey on Pediatric Palliative Care for Healthcare Providers (SPPCHP). Participants were diverse with regards to ethnicity/race and profession. Results: Healthcare providers at both hospitals reported feeling inexperienced in similar aspects of delivering palliative care and desired further training and support. The SPPCHP demonstrated strong internal consistency and good construct validity, evidenced in factor analyses. Pediatric healthcare providers at HCH reported only feeling “somewhat” experienced in all aspects of pediatric palliative care and rated families’ inability to accept terminal diagnosis as the top barrier to providing this care; half of healthcare providers reported not receiving adequate support. Although referrals did not increase six months after study completion, awareness at the hospital was improved. Conclusions: Clinical implications include the need for systematic training and support in palliative care for a range of pediatric professionals, with an emphasis on addressing key barriers to care. Given the similarity of the findings at HCH and LPCH, these results appear generalizable to a variety of children’s hospitals.

Keywords

Pediatric palliative care; barriers; education; support for healthcare providers

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