Components of a model of person-centredness in palliative care among patients with non-communicable diseases in Slovenian hospitals

doctoral dissertation

Sergej Kmetec (Avtor), Brendan McCormack (Mentor), Mateja Lorber (Komentor)

Povzetek

Introduction: Palliative care aims to provide an early person-centred approach to patients with non-communicable disease(s) by monitoring distressing symptoms, providing support at all four domains of health, supporting their care partners, and enhancing the quality of patients and their care partners' lives. A problem lies in the late introduction of person-centred palliative care in acute care and the emergence of barriers to providing such care. Therefore, the present doctoral thesis explores the perceptions of person-centred palliative care of healthcare professionals and patients with non-communicable disease(s). Based on the results of both data analyses, we identified the key components of a model to provide person-centred palliative care for patients and their care partners. Methods: A two-phase sequential explanatory design was used, which involved collecting data in consecutive phases between August 2020 and July 2021. The study's first phase involved health professionals and patients from eight institutions, and the second phase involved health professionals, patients and care partners. Data from the first part of the study were gathered using validated questionnaires, and inferential and descriptive statistics were used to analyse the results. Semi-structured interviews were used in the second phase to collect data, then thematically analysed. We have merged the outcomes of the quantitative and qualitative stages utilising the pillar integration approach in order to interpret them in a more thorough and comprehensive manner. Results: Through the data integration process, we identify four key components to providing person-centred palliative care in patients with non-communicable disease(s). These components are: (1) Healthcare professionals' prerequisites and traits; (2) Person-centred palliative care environment; (3) Person-centred palliative process; and (4) Person-centred palliative care outcome. A Healthcare professional's prerequisites and traits can be said to contain three aspects: (1) Attitudes, (2) Commitment to the work and (3) Values and beliefs. When these three aspects are considered, a person-centred palliative care environment can be created. Here it is important to consider four aspects: (1) Transdisciplinary approach; (2) Patient empowerment; (3) Partner engagement; and (4) Institution/policy climate. A person-centred palliative process that allows the patient to maintain their quality of life and dignity includes the following aspects: (1) Person-centred approach; (2) Establishing an advance care plan; (3) Early integration of person-centred palliative care, and (4) Enlightenment and raising awareness. Person-centred palliative care outcomes can be (1) Positive experiences and (2) Negative experiences. Discussion and conclusion: Person-centred palliative care is essential in treating patients with non-communicable diseases. For that reason, it is pivotal to follow the four key components of how to provide person-centred palliative care, comprising: (1) Healthcare professionals' prerequisites and traits, (2) The person-centred palliative environment, (3) The person-centred palliative process and (4) The person-centred palliative outcomes. These four key components provide healthcare professionals and transdisciplinary palliative teams with the steps for providing person-centred palliative care to the patient and support to the care partners. The term ‘patient’ is herein used to denote patients with one or more non-communicable disease(s).

Ključne besede

person-centred care;palliative care;patients;care partners;healthcare professionals`;mixed-method;sequential explanatory design;

Podatki

Jezik:	Angleški jezik
Leto izida:	2023
Tipologija:	2.08 - Doktorska disertacija
Organizacija:	UM FZV - Fakulteta za zdravstvene vede
Založnik:	[S. Kmetec]
UDK:	616-036.8-083:614.21(043.3)
COBISS:	171535363
Št. ogledov:	54
Št. prenosov:	5
Ocena:	0 (0 glasov)
Metapodatki:

Ostali podatki

Sekundarni jezik:	Slovenski jezik
Sekundarni naslov:	Komponente modela na osebo usmerjene oskrbe v paliativni oskrbi pri pacientih s kronično nenalezljivo boleznijo v slovenskih bolnišnicah
Sekundarni povzetek:	Uvod: Cilj paliativne oskrbe je zagotoviti zgodnji pristop pacientu z nenalezljivo boleznijo, ki je usmerjen na osebo samo, ter zagotavljanje podpore na vseh ravnih, skupaj s podporo njegovih svojcev pri oskrbi ter izboljšanju kakovosti življenja pacienta ter njegovih svojcev. Težava je v pozni vključitvi osebe v usmerjeno paliativno oskrbo in v pojavu ovir pri zagotavljanju takšne oskrbe. Zato je namen doktorske disertacije ugotoviti, kako zdravstveni delavci in pacienti z nenalezljivimi boleznimi dojemajo takšno usmerjeno paliativno oskrbo. Na podlagi rezultatov kvantitativne in kvalitativne analize podatkov so bile opredeljene ključne komponente modela za zagotavljanje usmerjeno paliativne oskrbe za paciente z nenalezljivimi boleznimi in njihove svojce. Metoda: Ta doktorska raziskava temelji na zasnovi mešanih metod. Uporabljena je bila dvofazna zaporedna pojasnjevalna metoda, ki je vključevala zbiranje podatkov v zaporednih fazah. V prvi fazi raziskave je bila uporabljena presečna raziskovalna metoda z uporabo vprašalnikov. V kvantitativnem delu so bile uporabljene deskriptivne in inferenčne statistične metode. Za ugotavljanje veljavnosti in zanesljivosti vprašalnika sta bili uporabljeni obrazna veljavnost, zanesljivost notranje skladnosti, raziskovalna faktorska analiza in Cronbachov koeficient α. Kot mejno vrednost za statistično pomembnost smo uporabili p<,05. V drugi fazi raziskave je bil uporabljeni polstrukturirani intervjuji za opis izkušenj, dogodkov in pojavov. Integracija podatkov je potekal po Pillar procesu. V raziskavi so sodelovale osem institucij, ki izvajajo splošno ali specializirano paliativno oskrbo (stopnja odziva institucij je bila 53 %). Vzorec za kvantitativno fazo so bili zdravstveni delavci (n = 480) in pacienti (n = 480). Iz treh sodelujočih institucij so bili k sodelovanju v polstrukturiranih intervjujih povabljeni pacienti s kroničnimi nenalezljivimi boleznimi, svojec in zdravstveni delavci. Do nasičenja s podatki smo prišli pri 13 pacientih, 11 zdravstvenih delavcih in 12 svojcih. Pred izvedbo raziskave smo za odobritev zaprosili Nacionalni odbor za medicinsko etiko (ref. št. 0120-270/2020/3). Udeleženci raziskave so bili pisno obveščeni o namenu in ciljih raziskave; poudarjena je bila zaupnost, anonimnost in prostovoljni odstop od sodelovanja v raziskavi. Rezultati: V kvantitativni fazi raziskave smo uporabili inferenčno statistiko ter smo izbrali neparametrične statistične teste, saj ni bila normalna porazdelitev podatkov. Mann-Whitneyev U test nam je pokazal statistično razliko med dojemanjem usmerjene paliativne oskrbe s strani pacientov z nenalezljivimi boleznimi in zdravstvenih delavcev (U = 56395,500, p<,001). Kruskal Wallisov test nam je pokazal statistično razliko v dojemanju usmerjene paliativne oskrbe v povezavi z izkušnjami zdravstvenih delavcev (χ2(2) = 57,192, p<,001) in stopnjo izobrazbe (χ2(2) = 269,459, p<,001). Spearmanova korelacija je pokazala, da obstaja pozitivna korelacija med spremenljivkama (rs(480) = ,501, p<,001). V kvalitativni fazi smo dobili eno glavno temo: usmerjena paliativna oskrba pri pacientih z nenalezljivimi boleznimi. Štiri sekundarne podteme: (1) Pristop k usmerjeni paliativni oskrbi; (2) Vidiki usmerjene paliativne oskrbe; (3) Okolje usmerjene paliativne oskrbe in (4) Izkušnje z usmerjeno paliativno oskrbo. Razprava in zaključek: Na osebo usmerjena paliativna oskrba je bistvenega pomena pri zdravljenju in oskrbi pacientov z nenalezljivimi boleznimi. Zato je ključnega pomena, da upoštevamo štiri ključne komponente zagotavljanja usmerjene paliativne oskrbe: (1) pogoji in lastnosti zdravstvenih delavcev, (2) okolje paliativne oskrbe, (3) proces na osebo usmerjena paliativna oskrba in (4) rezultati na osebo usmerjeno paliativno oskrbo. Te štiri ključne komponente zdravstvenim delavcem in transdisciplinarnim paliativnim timom zagotavljajo na osebo usmerjeno paliativno oskrbo pacientu in podporo svojcem.
Sekundarne ključne besede:	na osebo usmerjena oskrba;paliativna oskrba;bolniki;pomembni drugi;zdravstveni delavci;mešana metoda;sekvenčna pojasnjevalna zasnova;Nursing care;Palliative care;Patient care;Zdravstvena nega bolnika;Paliativna oskrba;
Vrsta dela (COBISS):	Doktorsko delo/naloga
Komentar na gradivo:	Univ. v Mariboru, Fak. za zdravstvene vede
Strani:	XVII, 156 str., 23 str. pril.
ID:	17885257