Assessment of family needs for providing palliative are in the house in the Republic of Croatia - pilot research

Razvojem palijativne skrbi prepoznaje se važnost i doprinos skrbi koju pružaju obitelji i prijatelji bolesnika. Članovi obitelji pružaju neformalnu skrb čime daju veliki doprinos i podršku dobrobiti bolesnika koji ima potrebu za palijativnom skrbi, ali i cjelokupnoj zajednici. Pružanje palijativne skrbi u kući bolesnika i uspješnost ostanka bolesnika u terminalnoj fazi bolesti na kućnoj skrbi ovisi o tome koliko su bliski njihovi obiteljski odnosi te koliko su obitelji voljne i sposobne pružiti skrb. Vezano na to važna je procjena potrebe obitelji za pružanjem palijativne skrbi u kući. Ovo presečno istraživanje provedeno je u srpnju 2021. godine te je uključivalo 65 obitelji bolesnika s potrebom za palijativnom skrbi na području Republike Hrvatske. Istraživanje može biti polazište daljnjim istraživanjima koja će se provoditi s ciljem unapređenja pružanja podrške obiteljima u pružanju neformalne skrbi u kući i razvojem dodatnih resursa u toj podršci. Osnovni cilj provođenja ovoga istraživanja je procjena potreba obitelji za pružanjem palijativne skrbi u kući na području Republike Hrvatske. Uz samoprocjenu znanja i vještina obitelji koje pružaju neki oblik neformalne palijativne skrbi u kući procijeniti i njihove potrebe. A ujedno, cilj je utvrditi stresne situacije kojima su izložene obitelji bolesnika koji ima potrebu za palijativnom skrbi za vrijeme pružanja skrbi u kući. Također, istraživanje nastoji utvrditi mišljenja obitelji o nedostacima pružanja palijativne skrbi u kući. Ovim istraživanjem potvrđene su potrebe obitelji koje pružaju neki oblik neformalne palijativne skrbi u kući kao i dosadašnja istraživanja u svijetu. Dolazimo do zaključka da su potrebne valjane i pouzdane metode da se identificiraju oni obiteljski njegovatelji koji su možda manje pripremljeni za ulogu podrške osobi kojoj je potrebna palijativna skrb. Identifikacija nedostatne podrške obiteljskim njegovateljima jedna je od ključnih komponenti za razvoj kvalitetne palijativne skrbi, kao i odgovor na pitanje kako istaknuti i poboljšati njihov rad koji je značajan i vitalan resurs u palijativnoj skrbi. Kako bi se dizajnirali standardi pružanja podrške članovima obitelji, nužno je dobro razumjeti njihove potrebe kroz faze bolesti i njihove osobne dinamike i otpornosti.The development of palliative care has brought recognition of the importance and contribution of care provided by the families and friends of patients. Family members providing informal care, make a great contribution and support to the well-being of the patient in need of palliative care, as well as to the entire community. The provision of palliative care in a patient's home and the success of remaining the terminally ill patients in home care depends on closeness of their family relationships, as well as on the wiilingness and the capabilities of the families to provide the care. All of this make important to assess the family’s needs in respect of palliative care provision at home. This cross-sectional study was conducted in July 2021 and included 65 families of patients in need of palliative care in the Republic of Croatia. The research can be the starting point for further researches aimed to improving the support for families giving the home care, as well as to developing the additional resources for that support. The main goal of this research is to assess the needs of families providing the palliative care at home in the Republic of Croatia. Self-assessment of the knowledge and skills of families that provide some form of informal palliative care at home was performed, as well as the assessment of their needs. Stressful situations to which the families of a patient in need of palliative care are exposed during the provision of home care were detected. Also, the research sought to identify family opinions on the shortcomings of providing the palliative care at home. This research confirmed the needs of families providing palliative care at home, previously as described in the previous researches around the world. We conclude that valid and reliable methods are needed to identify those family carers who may be less prepared for the role of supporting the family member in need of palliative care. Identification of insufficient support to family carers is one of the key components for the development of quality palliative care, as well as answering the question of how to distinguish and improve their work which is a significant and vital resource in palliative care. In order to design standards of support for family members, it is necessary to have a good understanding of their needs through the stages of illness and their personal dynamics and resilience