Clinical care area

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The self-care of chronic diseases: the contribution of the research team

Self-care is a ‘decision-making process implemented by the patient to preserve health and manage chronic illness’ (Riegel et al., 2018).
Self-care is also a phenomenon of nursing interest because it includes modifiable everyday life behaviours on which the nurse can act during the entire nursing process.
It consists of three dimensions:
Self-care maintenance: behaviours aimed at improving well-being and maintaining health (e.g. physical activity, adherence to therapy);
Self-care monitoring: behaviours aimed at monitoring the signs and symptoms of the disease (e.g. monitoring of blood pressure, glycaemia, peristomal skin control);
Self-care management: behaviours for managing signs and symptoms of the disease (e.g. modifying physical activity or diet).

The caregiver’s* contribution to self-care is ‘a process of recommendation or substitution to the patient. It is implemented by the caregiver to prompt those behaviours that keep the chronic illness stable and allow the management of signs and symptoms’ (Vellone et al., 2019).

In the context of self-care, the nurse:

identifies patients with inadequate levels of self-care
implements educational interventions and evaluates their outcomes
identifies caregivers with inadequate contribution to self-care
involves the caregiver in the care process.

I Main results of the research group

The research group produced evidence on how inadequate self-care in the chronic conditions taken into consideration (heart failure, diabetes mellitus, COPD, motor neuron disease, spinal cord injury, multiple chronic diseases, intestinal and urinary stomas) has a negative impact on mortality (Jaarsma et al., 2013); number of re-hospitalisations, unplanned accesses to health services and accesses to the emergency department (Buck et al., 2015); flare-ups and complications (Lee et al., 2017).

Further studies allowed the research team to:

develop and validate specific measurement tools to identify patients with self-care defi cit and focus educational interventions on at-risk populations (De Maria et al., 2019;Vellone et al., 2013; Villa et al., 2019);
identify predictors of self-care behaviour, such as: age, gender, education, socioeconomic status and clinical variables (Cocchieri et al., 2015).

The research group also demonstrated that the caregiver’s contribution to self-care has a positive impact on physical function, quality of life, adherence to therapy, reduction in hospitalisations, length of hospital stays and complications in caregivers (Buck et al., 2015).
Studies conducted by the research group on caregivers of patients with heart failure, multiple chronic diseases and bowel and urinary ostomy patients made it possible to describe the caregiver’s contribution to self-care (Durante et al., 2018) develop and validate measurement tools for caregiver contribution to self-care (Villa et al.,2019) identify predictors of caregiver contribution to self-care (Bidwell et al., 2015).
The measurement tools enabled the identification of caregivers who contributed inadequately to self-care and the study of self-care in the patient-caregiver dyad (Buck et al., 2017).

The identification of predictors of caregiver contribution to self-care has shown how some individual caregiver characteristics can influence the self-care process and care outcomes (Durante et al., 2019).
Studies on self-care in the patient-caregiver dyad have produced evidence on how the quality of the interpersonal relationship can influence the entire self-care process (Vellone et al., 2017).

Future developments

The research group intends to carry out studies to test strategies aimed at improving the self-care of the patient-caregiver dyad, reducing mortality, inappropriate re-hospitalisations, emergency room admissions and healthcare expenditure.
The research group intends to carry out further studies to expand the knowledge of the self-care process in patients with neoplastic diseases being treated with oral chemotherapy.
The research group will also conduct longitudinal studies to analyse behavioural trajectories concerning self-care and the caregiver’s contribution to self-care.

Developed/validated instruments

Self Care of Heart Failure Index (SCHFI) > measures the self-care behaviours of the heart failure patient
Self Care of Chronic Obstructive Pulmonary Disease (SC-COPDI) > measures the self-care behaviours of patients with chronic obstructive pulmonary disease
Self Care Of Diabetes Inventory (SCODI) > measures the self-care behaviours of patients with diabetes mellitus
Self Care of Chronic Illness Inventory (SC-CII) > measures the self-care behaviours of the chronically ill patient
Caregiver Contribution of Self Care of Heart Failure Index (CC-SCHFI) > measures caregiver contribution behaviours to self care of heart failure
Caregiver Contribution of Self Care of Chronic Illness Inventory (CC-SC-CII) > measures caregiver contribution behaviours to self care of chronic illness

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The self-care of chronic diseases: the contribution of the research team

The research group focuses on the new care needs, both expressed and unspoken, of the population. In particular, it has identified the following priority aspects within the clinical care context of chronic diseases:

favouring the therapeutic adherence of people suffering from chronic diseases, in order to reduce healthcare costs
understanding the influence of family members on therapeutic adherence and quality of life of people with chronic diseases and frailty
validate specific tools for the correct measurement of care outcomes in the context of chronicity and frailty
assess the impact that family carers (so-called caregivers) have within a household

The main findings of the research team

The research group demonstrated:

the reduction of healthcare expenditure incurred by people with chronic conditions through educational interventions inherent in the preparation of informal caregivers (Pucciarelli et al., 2019)
the reduction of hospital stay days within a cardiac ICU through early detection programmes for adverse events such as delirium (Simeone et al.,2018)
the existence of variables that predict and influence the quality of life of stroke patients and their caregivers (informal caregivers) (Pucciarelli et al., 2019)
the mutual multidimensional interdependence between the person with stroke and informal caregiver (Simeone 2015) (Pucciarelli et al. 2017; Pucciarelli et al., 2019)
the influence of the patient’s physical function and the burden of the informal caregiver on the quality of life of the dyad (stroke patient-family member) (Pucciarelli et al. 2017)
the improvement of the therapeutic adherence of a person with chronic disease through adequate caregiver preparation (Virgolesi et al., 2019)
improving the quality of life of parents of chronically ill children through educational programmes (Simeone et al., 2017)

The research team tested the validity and reliability of the following scales:

Cardiac Children’s Hospital Earling Warning Scoring, (Simeone et al., 2019)
Stroke Imapct Scale (Vellone et al., 2015)
Cornell Assessment of Pediatric Delirium (Simeone et al.,2019)
Mutuality scale (Pucciarelli et al.,2018) (Pucciarelli et al., 2016)
Caregiver Preparedness Scale (Pucciarelli et al.,2018)

Future developments

The research group has initiated new studies in order to design, test and implement specific care outocomes evaluation tools in chronic conditions (e.g.: reduction of hospital stay, reduction of social and individual health expenditure)
specific educational programmes for carers of people with chronic conditions
specific educational programmes for family carers

The research group hypothesises that these future developments may lead to a reduction in social and individual health care expenditure, reducing hospitalisation days and inappropriate admissions.

Developed/validated instruments

Cardiac Children’s Hospital Earling Warning Scoring (C-CHEWS)> can rapidly identify children undergoing cardiac surgery who are admitted to a post-operative surgical ward and require intensive care, and can predict sudden cardiac arrest in this population
Stroke Imapct Scale (SIS)> A specific instrument to measure the quality of life of people with stroke
Cornell Assessment of Paediatric Delirium (CAPD)> can detect hypoactive, hyperactive or mixed delirium in the paediatric population, mostly under school age
Mutuality scale (MS)> assesses the level of mutuality present in the care dyad
Caregiver Preparedness Scale (CPS)> assesses the perceived preparedness of the caregiver

Prizes and awards

2016 G. Zunnino national prize Italian Society of Paediatric Cardiology
2017 G.Zunnino national prize Italian Society of Paediatric Cardiology
2018 G.Zunnino national prize Italian Society of Paediatric Cardiology
2017 CVSN Stroke Article of the Year Award
2018 SISI award 2018 Italian Society of Nursing Sciences
2018 GRANT Cardiac research Fondazione cuore Domani Italian Society of Surgery
2018 Post-doctoral mentorship Award- European Society of Cardiology
2019 national award Italian Society for Cardiovascular Prevention
2019 CVSN Clinical Article of year Award American Heart Association’s Council onCardiovascular and Stroke Nursing

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The Nursing Minimum Data Set (NMDS): the contribution of the research group

The rapid spread of nursing knowledge has generated a large amount of data that nurses use and process for the provision of care. This framework guided the research group to investigate computerised systems and standardised terminologies that would make the compilation and management of nursing documentation easier.

“A minimum set of information elements, with uniform definitions and categories related to the specific dimension of nursing care, which meets the information needs of multiple users within the health care system” (Werley, 1991).

In particular, the research group dealt with:

to trace back to a standardised nursing language what nurses report in their nursing documentation
develop a NMDS that guides nurses in the implementation of the nursing process
to check the influence of NMDS on the accuracy of nursing documentation
to validate in Italian a tool (D-Catch) that measures the accuracy of nursing documentation
to investigate the impact of nursing care elements (diagnoses and interventions) on nursing and organisational outcomes
to translate the Clinical Care Classifi cation (CCC) Model, an internationally recognised nursing taxonomy, into Italian through backtranslation

The main results obtained by the research group

The research group achieved the following results:

demonstrated that what Italian nurses write in their documentation can be easily traced back to a standardised nursing terminology shared at an international level (D’Agostino et al., 2018)
developed a nursing information system, called PAI (Professional AssessmentInstrument), which includes a NMDS characterised by a standardised nursing language (D’Agostino, Vellone, Tontini, Zega, & Alvaro, 2012). This system, registered with theSIAE, has been integrated into the electronic health records of Policlinico A. Gemelli since 2013 (D’Agostino et al., 2013). The PAI is also being used in other realities of the Lazio Region
described the prevalence of nursing diagnoses and interventions and analysed their positive impact on the level of dependency of patients and their correlation with medical diagnoses, both in hospital and territorial settings (Sanson et al., 2019; Zeffiro et al., 2018)
demonstrated that care complexity, given by the type of nursing diagnoses, is correlated with length of stay and mortality (D’Agostino et al., 2017)
identified the number of nursing diagnoses to be a strong independent predictor of length of stay (D’Agostino et al., 2019)
demonstrated that the Italian version of the D-Catch is a valid and reliable tool (D’Agostino et al., 2015)
produced evidence that the use of the PAI improves the descriptive chronological and diagnostic accuracy of nursing documentation (D’Agostino et al., 2019)

translated the CCC Model, in collaboration with the author, Dr Virginia Saba. It has also been included in the CCC website (https://www.sabacare.com/framework/translations/) among the translations.

Future developments

The research group is working on new projects and/or research studies in order to:

study the applicability and effectiveness of NMDS in community settings
investigate the impact of nursing care elements on care and organisational outcomes in further hospital and community settings
to analyse the prevalence of nursing diagnoses in different national and international care settings
to compare the 5 standardised nursing terminologies recognised by the American Nurses Association (ANA) by analysing the international literature in order to define their advantages and disadvantages
develop an updated version of the PAI

The research group hypothesises that these future developments may lead to the identification of a NMDSadapted to the Italian nursing reality. Furthermore, the group believes that by demonstrating the effectiveness of NMDS in clinical practice, these information systems can be disseminated and validated in different care settings and used not only for care purposes but also for health policy purposes (improvement of the quality of care and remuneration of nursing care).

The group proposes the inclusion of nursing care within the DRG calculation, to be considered as one of the hospital costs.

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Clinical care area

Rosaria Alvaro

Ercole Vellone

Rosaria Alvaro

Ercole Vellone

Gianluca Pucciarelli

Rosaria Alvaro

Ercole Vellone

Valentina Zeffiro

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