This is the first study documenting the development and validation of a questionnaire to assess Perceived, Wished and Actual Knowledge of healthcare workers on PPC/PT based on CC in Italy. The study collected data from different professional profiles and highlighted that psychologists have higher Perceived and Actual Knowledge on PPC/PT; nevertheless, unexpectedly, Wished Knowledge was not significantly different among professions. Findings suggest that the questionnaire has very good internal consistency, content and construct validity. These relevant psychometric properties allow its utilisation to support future multi-professional training programs design and/or implementation in similar settings, alongside with other essential strategies for improving health outcomes on paediatric population with palliative care needs.
To our knowledge, there is no previous experience on other multi-professional tools directly based on CC to compare with. Although many surveys have investigated educational needs of health care providers about PPC, few have proposed or used validated tools considering both subjective and objective perspective and/or within a multidisciplinary approach in a European setting.
For example, the End-of-Life Professional Caregiver Survey (EPCS) is a validated tool to assess multidisciplinary educational needs based only on a subjective perspective, which was developed and tested for health care providers working with adults and pediatric patients in US.[26–28] Our results show some similarities with these studies. Indeed, psychologists showed higher level of knowledge about mourning and psychosocial needs of families, compared to nurses and physicians. Similarly, in the study by Lazenby et al.,[27] social workers reported more confidence than nurses and physicians about grief counseling for families and generally about cultural and ethical values in palliative and EOL care.[27] We can argue that these issues are professional-specific and this finding could suggest the ability of our tool to discriminate between different professional profiles. Also, sharing “PPC principles and national guidelines” emerged as an educational need of health care providers in Schulman-Green et al. as well as “policies and protocols” in our study, where participants showed lower levels of Perceived and Actual Knowledge about these topics.[26, 28]
Concerning the objective evaluation of competences, the Pediatric Palliative Care Questionnaire (PPCQ) included some questions that turned out to be inadequate for drawing conclusions on the tool validity or reliability.[17] Conversely, in our work all items of Actual Knowledge scale show good discrimination powers, except for one question on continuity of care characterized by 97% of correct answers. This was revised and edited for further use.
Consistently with other studies in which respondents reported less confidence on “knowing and accessing community PC resources”,[7] our participants have less self-perceived knowledge of transitional cares and are particularly interested in the evaluation of patients for the PPC/PT network. On the other hand, respondents were more comfortable with pain assessment strategies, in line with other findings.[29]
It is known that there can be disparities between recognized and unrecognized learning needs, with technical skills vs. interpersonal and intrapersonal skills predominating respectively.[30] Accordingly, our participants showed higher confidence on communication and psychosocial aspects of PPC than measured with the Actual Knowledge scale. On the other hand, disparities are reduced for knowledge of Policies and protocols. These differences highlight the importance of taking into account both subjective and objective perspective in assessing knowledge and educational needs.
Regarding prior education and/or work experience in PC/PPC, an association with higher Perceived Knowledge was found, in accordance with other studies.[26, 29] Moreover, Wished Knowledge was higher for senior workers. In our opinion, this finding could be justified by the need of continuous training of healthcare professionals working since long time, asking for update and education about the emerging topic of PC/PPC. Whished Knowledge levels are higher also for those working primarily in the hospital or in the community compared to those working on both settings. This result may be explained by the fact that professionals working on both settings are more likely to be part of PPC/PC local/regional network, rather than health care providers working directly on a single site (hospital vs. community).
In our study of Whished Knowledge, the most interesting topic for participants was team work, which has also been identified as educational need of health professionals by other studies. [7, 29, 30] According to this result, in our view, team work needs to be addressed as specific learning need in training about PPC/PT.
The methodology used for the questionnaire development had several strengths. The four sequential steps start from a recognized national recommendation, i.e. the CC validated by the scientific community, and the involvement of a multidisciplinary health professional group in all rounds of revisions and optimizations assures it content validity. The inclusion of a Wished Knowledge scale implies that health workers learning needs may be in deep evaluated by length of service experience and/or working setting before PPC/PT training programs implementation, increasing the utility of this tool for decision makers and educational planners. Indeed, our results for this scale might be useful for decision makers on planning future educational programs. In order to plan effective educational programs, it is necessary to define learning outcomes on the basis of learners’ educational needs, considering prior knowledge and also experience.[31–33]
We acknowledge that data from this single-center study in Italy are not directly generalizable to other settings and that our sample possibly has auto-selection bias (health providers particularly interested in PPC/PT may have participated). Also, the online website that hosted the questionnaire and the institutional request for possible respondents was crucial to increase health worker’s participation. It is difficult to estimate how this selection may have influenced study findings. However, the low response rate is common among dedicated surveys for health professionals linked to length of forms and dissemination strategies.[34–36] Future research should further explore acceptability of this tool and barriers faced for the implementation of a similar study without the important support of authorities or institutions.
Our questionnaire represents a valuable tool to assess educational needs on PPC in a multidisciplinary sample and to evaluate progresses after educational interventions. Data collected with this study may be taken into account to address the contents of training courses and the educational interventions on PPC for health care providers in study area. Further research could investigate the reliability and discrimination ability of the instrument on a larger sample (e.g. at regional or national level) and test it as pre and post intervention measure to assess the impact of educational interventions and training programs. Future research should also investigate its acceptability in other settings and facilitators and barriers for its implementation. As for the implications for practice and research, our study represents a first step to investigate the level of knowledge (perceived, whished and actual) on PPC and PT of health care workers with an easy-to-use validated instrument, with a multi-professional perspective, based on CC. Indeed, to ensure quality of care, it is necessary to provide education to all professionals involved in the care of children with PPC needs and their families, but also to assess their competences in order to target educational interventions and to measure their impact.