Table 1 Characteristics of included studies

Abrahamson et al. (2016) USA [23]

Experiences of family members in the NH to hospital transfer decision-making process.

Semi-structured interviews (telephone)

Qualitative content analysis

Family members(n = 20) involved in transfer decision of residents with dementia within the past three months

9 NHs

Even though family members appreciated staff’s good knowlegde of the resident, they perceived NHs as providing” low-level “medical care. Hospitalization decisions were influenced by family members’ perception that physicians’ presence in NH was lacking, nursing staff was unable to notice changes quickly enough and that more care was available in hospital.

Arendts et al. (2015) Australia [29]

Perspectives of residents, relatives and nursing staff concerning transfers from NH to ED and influencing factors.

Semi-structured interviews (face-to-face)

Qualitative content analysis

Residents (n = 11) with previously ED admission without life- or limb-threatening reason for transfer and cognitively able to participate

Family members (n = 14)

Nursing staff (n = 17), (nurses or nursing assistants)

6 NHs

Depending on the relationship to nursing staff, family members’ involvement in transfer decisions differed. They mostly accepted staff’s advice with or without communication of the situation. Because of negative impacts on their relative, family members often tended to avoid transfer – but recognizing that transfer was often necessary. They perceived that transfers were motivated by lack of nursing staff and physicians in NH or risk-averse behaviour of nursing staff.

Arendts et al. (2010) Australia [30]

Factors influencing transfers decisions from NH to ED and interventions that could reduce number of transfers.

A) Three focus groups:

1) Family members, community representatives, non-health professional carers

2 + 3) family members, NH staff, ED staff, GP

B) Semi-structured interviews

Thematic analysis

A) In total (n = 33):

family members (n = 5)

NH carer (n = 7)

NH nurses (n = 5)

NH manager (n = 5)

ED staff (n = 7)

GP (n = 4)

B) Residents (n = 9) previously been transferred to ED

Not stated

The perceptions of family members and nursing staff corresponded concerning following aspects: understaffing, insufficient qualification of staff (e.g. end-of-life) and lack of physicians providing care in NHs. In addition, nursing staff perceived bureaucracy of GP visits and insufficient communication with ED staff as difficult providing adequate care. Interventions that could reduce transfers aimed on training of NH staff (clinical procedures, palliative care) and families (information about end-of-life care) as well as new organizational structures.

Carusone et al. (2006) Canada [27]

Resident and family members’ perspectives on in situ care for pneumonia in NHs

Semi-structured interviews (face-to-face + telephone)

Thematic analysis

Residents (n = 6) with recent case of pneumonia and capable of making their own decisions

Family members (n = 8) directly involved in decision-making for residents unable to speak about their own care

4 NHs

Family members took pneumonia as a condition manageable in NH. They generally preferred care in NH because of more personal attention and comfort. On the other hand hospital-based care seemed to be more adequate because of understaffing, lack of physicians and lack of necessary equipment in NHs. In contrast to residents which ceded the transfer decisions to nursing staff or the physician, family members wanted to be involved in decision-making and were mostly thankful for staffs’ recommendations.

Dreyer et al. (2009) Norway [31]

Relatives’ experiences of decision-making processes when life-prolonging treatment of residents is limited.

(Semi-structured) in-depth interviews

Constant comparative analysis

Family members (n = 15)

(children, spouse, children-in-law)

10 NHs

Relatives were mostly not contacted until resident’s condition deteriorated. The knowledge about residents’ wishes and recognition of end-of-life symptoms was insufficient among family members. Involvement in end-of-life decision was therefore associated with emotional burden. Hospitalization was not discussed with relatives.

Kayser-Jones et al. (1989) USA [24]

Clinical conditions and social-cultural factors contributing to hospitalization of NH residents

Event analysis of 215 acute-illness episodes

Semi-structured interviews

‘Qualitative analysis’

Residents (n = 215)

Family members (n = not stated)

3 NHs

Frustration and fear about conditions of NH care (e.g. inadequate nursing skills) triggered relatives to insist on hospitalization. On the other hand hospital care was sometimes described as traumatic experience in an unfamiliar situation. Hospitalization was therefore mostly influenced by social-structural rather than clinical reasons.

Robinson et al. (2012) Canada [28]

Key elements influencing the success of transitions of residents moving between NHs and EDs in the perspective of residents, family members and health care providers within three settings

A) Semi-structured interviews (n = 24) (individual and group interviews)

B) Focus groups (n = 6)

C) Interviews (n = 7)

Constant comparison analysis

A) Residents (n = 7) with previous transition from NH to ED within the last 12 months

+ family members (n = 20)

B) Healthcare provider (n = 37), registered nurses, licensed practical nurses, paramedics, physicians, and administrators

C) Healthcare provider (n = 7)

NHs

EMS

ED

Family members are mostly seen as key figures in decision-making process because of knowing the resident. They were able to fill in information gaps between different healthcare providers. However, family members also felt uncomfortable in case of ACP discussions. Conflicts with nursing staff typically occurred around the interpretation of resident’s best interest and because of different perspectives.

Tappen et al. (2016) USA [25]

Residents and family members’ perspectives on decision-making process when confronted with a (real or hypothetical) possibility of transfer to acute care when a change in the resident’s condition occurred.

Integrated mixed methods design

171 semi-structured interviews based on Critical Decision Method

‘Qualitative analysis’

+ Quantitative analysis of sociodemographic data compared to decision mode

Residents (n = 96)

Family members (n = 75)

(children (n = 36), spouses (n = 26), others (i.e. sibling, grandchild, parent) (n = 13)

19 NHs

Decision-making was driven by different aspects among family members. Weighing pros and cons of hospital-based and NH-based care was the most common behaviour. In a few cases hospital decisions were emotion-based because of relatives’ positive or negative experiences about care in NH or hospital in the past. Every fifth family member completely trusted others and delegated the decision to nursing staff or physician.

van Soest-Poortvliet et al. (2015) Netherlands [32]

Experiences with the process of ACP in NH residents with dementia.

Factors related to the timing and content of ACP as perceived by family, physicians and nurses.

In-depth interviews (n = 65)

(Telephone + face-to-face)

Thematic analysis

Family members (n = 20)

Physicians (n = 21)

Nurses (n = 24)

Perspectives of all 3 caregivers available on 14 of the 26 patients

16 NHs

Care goals, treatment decisions (e.g. cardiopulmonary resuscitation) and hospitalization were commonly discussed together with physicians, nursing staff and family members. Hospital transfers were mostly initiated by the physician when change in resident’s health status occurred. Sometimes family members’ willingness to ACP discussions was limited.

Waldrop et al. (2011) USA [26]

Family members’ experiences with a dying NH resident and the living–dying interval in a NH

Interviews

In-depth interviews

‘Qualitative data analysis’

Family members (n = 31) of 27 NH residents who had died 2 months previously

1 NH,

Family members favoured hospital transfers in cases of sudden deterioration. In some instances they were not aware of typical end-of-life symptoms or ignored the imminent death of their relative. Being confronted with end-of-life situation caused stress among family members which sometimes led to conflicts between them and nursing staff.