Digital Theses Archive


Tesi etd-03292019-114343

Type of thesis
Family caregivers in end-of-life heart failure: exploring experiences and needs
Scientific disciplinary sector
SCIENZE MEDICHE - Translational Medicine
  • end-of-life heart failure
  • family caregivers
  • family caregivers' experiences and needs
  • palliative care
Exam session start date
Background:<br>Heart failure (HF) is a chronic, progressive condition considered as the final stage of all cardiovascular (CV) diseases [Coronary artery disease (CAD), spectrum of cardiomyopathies, valve diseases].<br>Together with cancer, HF is a most challenging condition to manage for healthcare providers, given the aging of population and the complexity of various comorbidities associated. With the advance in diagnostics and therapeutics, patients live with HF up to several years until the last period of their life, called End of Life (EoL). This situation causes several medical, psychosocial and economic issues throughout the course of disease. <br>In the last decade, there is a growing evidence that, in EoL period, current medical treatments for HF should be integrated with palliative care (PC), that is a holistic approach focusing on relieving suffering and addressing specific needs of patients and families facing life-threatening diseases.<br>With the worsening of patients’ conditions, an integrated management between all professional figures become fundamental. Physical and mental status of patients is managed by healthcare professionals as physicians, social workers and nurses as well as by family caregivers (FCGs) that constitute an emerging reality with their own experiences and needs. Poor literature has been developed focusing on FCGs’ experiences and although a growing number of papers has been published during the last 10 years, several issues still need to be assessed in this field of interest.<br>Aim of the study:<br>With this project, our aim is to go deeply in needs and experiences of family caregivers, focusing on settings of care delivery and professional figures involved in the team. Then, we want to assess FCGs’ experiences and needs of a small pilot group of FCGs of patients in EoL HF, followed-up at the Fondazione Toscana G. Monasterio (FTGM) in Pisa (Tuscany, Italy). Our final aim is to create a new model of managing FCGs of EoL HF patients during the whole course of disease and suitable for the current model of care in Italy and Tuscany.<br>Methods: First, we explored the state of the art of HF management in EoL and its interaction with PC with particular focus on FCGs’ sphere. After a comprehensive analysis of these themes, we performed a review of literature identifying those papers: a) focusing on healthcare professionals in the care team; c) focusing on place(s) of care; d) reporting empirical data (qualitative or quantitative) on FCG needs and experiences. <br>After having identified the most relevant FCG’s experiences and needs using a qualitative method, we built up a pilot group focused interview study with six FCGs of patients with EoL HF and followed-up at FTGM with the aim to investigate experiences and needs in a context never assessed before.<br>Results: The literature review found 27 papers suitable for analysis with the majority of them using a qualitative approach by means semi-structured or narrative interviews. The principal place of care was home care while professional figures involved were cardiologist as the most diffused profile, followed by nurses, palliative physicians and general practitioners (GPs). Looking together at team and place of care, cardiologists and nurses were the most diffused figures in home care teams (72% and 77%, respectively), while GPs and palliative physicians were present both in 38% of home care setting. The two most expressed topics, regarding experiences of FCGs of advanced HF patients were the “presence of negative feelings” and “lack of relationships with professionals”. Other three important topics emerged were “FCGs are not prepared for the future”, “FCGs do not have a clear understanding of disease” and “FCGs have a negative impact on daily relationships with patients”. The most diffused expectation from FCGs was “a need for more information about future/prognosis” followed by “a need of more communication with Professionals”.<br>Looking at experiences and model of care, in all the papers in which FCGs “were not prepared for the future” the setting of care was home and in five out of seven papers there was a lack of palliative physicians in the team. A similar configuration emerged for the topic “presence of negative feelings”. A “negative impact on daily relationship with patients” seems to be related to home care setting and few professionals in the team. The topic “a lack in relationships with professionals” is more expressed when a palliative physician was not present in the team as if it were a key figure for this aspect. The topic “FCGs do not have a clear understanding of disease” seems to be present in all settings of care and irrespective of care team composition. Finally, FCGs expressed positive opinions about the management of EoL period and improvement of their negative feelings when setting of care was different from home care in five out of six papers [i.e. hospitals, long-term care (LTC) facilities, hospices]. Among expectations related to model of care, the most relevant result was that the most diffused one, “need of more information about prognosis/disease”, was present in all settings of care and irrespective of team composition. <br>Concerning the group focused interview, we found four different topics of interest in family caregiving: a) individual emotional reactions, b) relationships with patients, c) relationships with professionals, d) experience of the care process. With regard to the emotional reactions, we noticed that the most important emotions were fear, anxiety, often linked to everyday life. Furthermore, in the social dimension, FCGs felt lonely and, in most cases, they lost their hobbies, their independence and stopped having recreational activities. With regard to the relationships with patients, the most relevant finding was that FCGs assumed a dominant role, becoming a near-medical professional figure. With regard to the relationships with professionals, FCGs had generally a good relationship with GPs, even though these physicians appeared not so involved in patients care, and positive opinions on specialists that have in charge their relatives. As concerns experiences of care, FCGs complained about lack of continuity between hospital and home care, characteristics of hospital care and problems in home care services. Then, we assessed FCGs’ needs dividing them in satisfied, unmet and unexpressed needs. They were satisfied about the help they received from family network and professionals, but they also had unmet needs related to problems with GPs, to hospital assistance and problems with physicians and to deficiency in healthcare services and psychosocial support. Finally, for the unexpressed needs, the most relevant ones were the unawareness of their role and the need of a psychological support.<br>Conclusions:<br>This research explored deeply the state of the art of EoL HF and how HF and PC can be integrated in a unique management. Then, our attention was turned on patients’ experiences and with particular focus on FCGs’ role, experiences and needs.<br>With the literature review, we explored for the first time, experiences and needs of FCGs of HF patients in the EoL stage related to the model of care (who are the professionals involved in the patients’ care and which is the place of care). The review provided significant insights in the field of family caregiving in EoL HF and identified specific topics of interest when patients are followed-up in home care. <br>The group focused interview looked at FCGs’ experiences and needs in a local setting of care (patients followed-up by FTGM in Pisa, Italy). From the interview, we identified 4 different dimensions in FCGs’ experiences and their respective needs. We concluded that experiences (primarily pertaining to the behavior of professionals involved in patients’ care, and on the high family caregivers’ burden related) and needs (mainly the need of more communication and coordination with professionals, by being more involved in patients’ care) were similar to those found by the literature review, demonstrating their universal significance. Furthermore, family caregivers had also important unexpressed needs as the unawareness about their own role in our model of care and about the facilities almost absent.<br>The findings of this project provide healthcare providers with valuable information on integration between PC and HF and on FCGs’ world. This data can help professionals to improve assistance for HF patients and to allocate resources for the most important unsolved issues. The findings of the review and the group focused interview can be applied to build up a pilot model to face FCGs’ experiences and needs in advanced HF care of Tuscany and Italy.<br>