Few opportunities to influence decisions regarding the care and treatment of an older hospitalized family member: a qualitative study among family members

Abstract

BackgroundThe drive towards patient involvement in health services has been increasingly promoted. The World Health Organisation emphasizes the family’s perspective in comprehensive care. Internationally there is an increased emphasis on what patients and their family tell about the hospital experiences. However, current literature does not adequately address the question of participation experiences among relatives of older hospitalized family members. There is a paucity of research with a generational perspective on relatives’ opportunities to exert influence. The aim of the study was to explore relatives’ experiences of opportunities to participate in decisions about the care and treatment of older hospitalized family members and whether there are different experiences of influence to the relatives’ age.MethodsThis was an explorative study applying individual qualitative interviews. The interviews were analysed following hermeneutic methodological principles. Two Norwegian geriatric wards participated: one at a university hospital and one at a local hospital. Twelve participants, six women and six men, were purposively selected. The relatives were aged from 36 to 88 (mean age 62) and were spouses, children and/or children-in-law of patients.ResultsThe relatives’ experienced opportunities to exert influence were distributed along a continuum ranging from older relatives being reactive waiting for an initiative from health professionals, to younger adults being proactive securing influence. Older “invisible” carers appeared to go unnoticed by the health professionals, establishing few opportunities to influence decisions. The middle-aged relatives also experienced limited influence, but participated when the hospital needed it. However, limited participation seemed to have less impact on their lives than in the older relatives. Middle-aged relatives and younger adults identified strategies in which visibility was the key to increasing the odds of gaining participation. The exceptional case seemed to be some older carers’ experiences of influencing decisions with the help of professionals.ConclusionsOur findings suggest that experiences of influence were limited regardless of age. However, the results indicated that participation among relatives decrease with age while vulnerability for not having influence seemed to increase with age. The problem of patient choice most clearly manifested among the older carers, which might indicate that the relatives’ age sets terms for opportunities to participate.

The influence of sociodemographic factors and close relatives at hospital discharge and post hospital care of older people with complex care needs: nurses’ perceptions on health inequity in three Nordic cities

“…Informants reported that such information from close relatives was particularly important if the older adult was previously unknown to the care teams or was cognitively impaired. This supports studies demonstrating a shift towards patient and family involvement (Lin and Fagerlin 2014 ; Lindhardt et al 2008 ; Nyborg et al 2017 ) including a recent systematic review on older adults admitted to hospital emphasizing close relatives’ important role in providing information as it often gets lost in the transfer to hospital (Pulst et al 2019 ). These previous studies have, however, not considered the potential risks of inequity including the impact of not having close relatives.…”

Relatives’ experiences of the hospitalisation of older people with COVID‐19: A qualitative interview study

“…The first author, who did not know any of the relatives in advance, conducted all interviews between June and November 2020. A semi‐structured interview guide with open‐ended questions was developed, inspired by previous research about the interaction between relatives of older hospital‐admitted patients and HCPs (Bragstad et al, 2014 ; Dyrstad, Laugaland, et al, 2015 ; Lindhardt et al, 2006 ; Mackie et al, 2019 ; Nyborg et al, 2017 ; Stein‐Parbury et al, 2015 ). The focus during the interview was relatives’ experiences of the admission, including experiences of their contact with the HCPs (e.g., communication and information received).…”

“…Studies published before the COVID-19 pandemic have demonstrated that relatives to older acutely admitted patients play a vital role in the patient's treatment and care (Bragstad et al, 2014;Dyrstad, Laugaland, et al, 2015;Nyborg et al, 2017;Sagoo & Grytnes, 2020;Stein-Parbury et al, 2015;Storm et al, 2014).…”

“…Studies published before the COVID‐19 pandemic have demonstrated that relatives to older acutely admitted patients play a vital role in the patient’s treatment and care (Bragstad et al, 2014 ; Dyrstad, Laugaland, et al, 2015 ; Nyborg et al, 2017 ; Sagoo & Grytnes, 2020 ; Stein‐Parbury et al, 2015 ; Storm et al, 2014 ). Relatives can act as advocates, requesting information from HCPs and helping to ensure that essential services and care are based on the older patient’s needs and wishes (Dyrstad, Testad, et al, 2015 ; Moyle et al, 2016 ; Stein‐Parbury et al, 2015 ; Storm et al, 2014 ).…”

Family caregivers' perceived level of collaboration with hospital nurses: A cross‐sectional study

“…Previous studies primarily report on experiences of family caregivers' involvement in the care for hospitalized older persons based on qualitative studies. These studies indicated that family caregivers find their ability to influence decisions seriously reduced when an older person is admitted to the hospital (Lowson et al., 2013 ; Nyborg et al., 2017 ). These caregivers did not always feel acknowledged as competent care partner by professionals (Aasbø et al., 2017 ; Lindhardt et al., 2006 ) and experienced an insufficient exchange of information and knowledge about disease related aspects, care and support (Bove et al., 2016 ; Røthing et al., 2015 ).…”