Table 2 Summary of included studies
Author/Year/Title | Country of Origin | Setting | Methodology & Method | Study Participants | Findings: Enabling, inhibiting & Environmental factors that influence SDM |
|---|---|---|---|---|---|
Abrahamson et al. (2016) “The experiences of family members in the nursing home to hospital transfer decision” [33] | USA | Nursing Home | Qualitative study Semi-structured interviews | 20 Family members | Inhibiting factors: Family members felt they were left to make decisions in the absence of clear, accurate information from staff. Enabling factors: Recommends development & training for staff to enhance communication skills with families in SDM Environmental issues: Family roles are variable depending on their willingness to engage in decision-making. |
Ampe et al. (2015) “Advance care planning for nursing home residents with dementia: policy vs. practice” [28] | Belgium | Nursing Home/ Dementia care units | Quantitative study | Staff from 20 dementia care units | Inhibiting factors: ACP conversations with residents & their families on admission, were not ongoing over time. Enabling factors: Recommends development of strategies to translate ACP policy into practice. Environmental issues: Staff assumed that people with dementia are no longer able to talk about their preferences. |
Arendts et al. (2015) “They never talked to me about…’: Perspectives on aged care resident transfer to emergency departments” [22] | Australia | Residential Aged Care Facility (RACF) | Qualitative descriptive study | 6 RAC facilities 14 Family members 17 Staff | Inhibiting factors: Low staffing levels, inadequate skill mix & knowledge levels of staff limited staff’s capacity to promote SDM. Enabling factors:. Family meetings are seen as a way to include families and improve SDM. Environmental issues: Residents are not active participants in the decision-making process & acquiesce as a means of preserving dignity. |
Bauer et al. (2014) “Staff–Family relationships in residential aged care facilities: the views of residents’ family members and care staff” [23] | Australia | Residential Aged Care Facility (RACF) | Qualitative study Family members small group interviews (2–4 participants) or individual interviews. Staff focus groups | 5 RAC facilities 14 Family members 27 Staff | Enabling factors: Effective communication & sharing mutual information about the resident between staff and families are key factors that promoted SDM. Inhibiting factors: Understaffing, staff with English as a second language, non-regular staff, and low education levels, affect staff-family relationships and SDM. Environmental issues: Unidentified factors that seem to prevent SDM from being successfully translated into practice. |
Beck et al. (2017) “Health care professionals’ perspective of advance care planning for people with dementia in long-term care settings: A narrative review of the literature” [32] | Northern Ireland | Long-term care(LTC) settings | A narrative literature methodology | 205 articles screened from four databases published in English, within time limitation (2002–2014) | Inhibiting factors: Lack of recognition by health care professionals (HCPs) that dementia is a condition that would benefit from a palliative approach to care and subsequent initiation of ACP. Enabling factors: Education & training for HCPs. Registered nurse has the expertise to see and understand the ultimate consequences of ACP. Environmental issues: HCPs perspectives on ACP were influenced by moral & ethical concerns, determining if ACP was initiated or not. |
Bedin et al. (2013) “Caring for elders: the role of registered nurses in nursing homes” [37] | Switzerland | Nursing Home | Qualitative study inspired by activity analysis | 9 Nursing Homes 16 Registered Nurses | Enabling factors: Expertise of a Registered Nurse (RN) in care homes is a key enabling factor necessary to facilitate SDM. The RN’s attributes of knowing the personhood of the resident & being able to adapt & respond with careful regard to each resident as an individual. Environmental issues: Management support & participation are necessary to facilitate the RN’s leadership role in nursing homes. |
Bennett et al.. (2020) “Resident perceptions of opportunity for communication and contribution to care planning in residential aged care” [41] | Australia | Residential Aged Care Facility (RACF) | Qualitative inductive study Individual interviews. | 6 not-for-profit RAC facilities 102 Residents | Enabling factors: SDM is determined by the communication opportunities afforded to the residents and the quality and nature of resident-staff communication during daily care. Inhibiting factors: Without communication support many residents experience difficulty expressing preferences & participating in SDM. Environmental issues: Lack of reference to communication needs & support in aged care policy & funding assessments, hinders communication support services in RACFs. |
Bollig et al. (2016) “They know!—Do they? A qualitative study of residents and relatives views” [27] | Bergen, Norway | Nursing Home | Qualitative study based on interpretive description Semi-structured in-depth interviews with residents and focus group interviews with relatives | 9 Nursing Homes 25 Residents 18 Relatives | Enabling factors: A systematic approach to ACP with repeated conversations & support of a key worker for residents & relatives. Inhibiting factors: Absence of ACP in nursing homes seems not to be problematic for the residents but may lead to psychological stress for the relatives. Environmental issues: Most relatives avoided making important health-related and end-of-life care decisions, deferring these decisions to the knowledge of the staff. |
Cameron, (2020) “Challenges faced by residential aged care staff in decision-making for residents with dementia” [40] | Australia | Residential Aged Care Facility (RACF) | Qualitative exploratory design Individual or group interviews | 14 RAC facilities 80 staff | Inhibiting factors: Most staff felt that the extent of residents’ participation in SDM should reflect the stage of their dementia. Others suggested that residents cannot generally make decisions at all. Enabling factors: Robust policies and procedures on SDM to support staff and a decision-making tool to empower staff. Environmental issues: Staff decided from one instance to the next about which of residents’ preferences they should support/ facilitate. |
Cranley et al. (2020) “Strategies to facilitate shared decision-making in long-term care” [24] | Canada | Long-Term Care Home (LTCH) | Qualitative descriptive design Individual semi-structured interviews | 40-bed non-for-profit LTCH 3 Residents 3 Family members 3 Staff | Inhibiting factors: Residents and families require more emotional support when making difficult decisions on behalf of the resident. Enabling factors: Key strategies essential to facilitate SDM in long-term care that include training staff to communicate effectively with residents & families and assigning a key worker for each resident to support the resident in decision-making. |
Fetherstonhaugh et al. (2016) “The Red Dress or the Blue?” How Do Staff Perceive That They Support Decision Making for People With Dementia Living in Residential Aged Care Facilities?” [34] | Australia | Residential Aged Care Facility (RACF) Persons with dementia | Qualitative study Individual & group interviews | 80 direct care staff | Enabling factors: There was an existing culture of relationship-centred care. Staff utilised a range of strategies to support decision-making for the person living with dementia. Environmental issues: By limiting the choices offered, staff felt they could preserve the decisional autonomy of the person with dementia whilst also helping to reduce confusion. |
Gjerberg et al.. (2015) “End-of-life care communications and shared decision-making in Norwegian nursing homes - experiences and perspectives of patients and relatives” [29] | Norway | Nursing Home | Qualitative study Semi-structured interviews and focus groups | 6 Nursing Homes 35 Residents 33 Relatives | Inhibiting factors: Residents & families felt unprepared for SDM. Most patients stated that they had no opportunity to discuss their preferences for treatment and care related to end-of-life. Enabling factors: Nursing home staff should take responsibility for initiating conversations about preferences for end-of-life care. SDM should be individualised and iterative. Environmental issues: Residents and families acquiesce, deferring decision-making to the staff. |
Godwin (2014) “Colour consultation with dementia home residents and staff” [42] | England | Specialist Dementia Nursing Home | Qualitative study Mixed methods consultation: | 1 Specialist Dementia Nursing Home 34 Residents 42 Staff | Enabling factors: Visual aids supported communication with people living with dementia, de-emphasising the spoken word and promoting SDM. Result: greater participation and improved self-esteem. Environmental issues: Staff helped develop an unpatronising, person-centred approach to SDM. |
Goossens et al.. (2020) “Shared decision-making in advance care planning for persons with dementia in nursing homes: a cross-sectional study” [30] | Belgium | Nursing Home | Quantitative study Cross-sectional design | 46 Nursing Homes 311 Staff members 42 Residents | Enabling factors: Three-talk model by Elwyn et al. (2012) used to achieve SDM and has utility beyond ACP. Inhibiting factors: Staff do not perceive themselves sufficiently competent to practice this guided approach frequently & lack role models in how to apply SDM in their conversations. |
Hanson et al. (2011) “Improving decision-making for feeding options in advanced dementia: A randomised, controlled trial” [38] | USA | Nursing Home | Quantitative study Randomized controlled trial - Questionnaire (Decisional conflict scale administered at 1 and 3 months) | 24 Nursing Homes Residents with advanced dementia & families | Enabling factors: Decision aids reduced decisional conflict for families and increased knowledge of treatment options. Family members were more likely to discuss treatments with a healthcare provider, indicating that the decision aid supported rather than replaced clinical communication. The intervention residents were provided with dysphagia diets and experienced less weight loss. |
Helgesen et al. (2015) “Relatives’ participation in everyday care in special care units for persons with dementia” [26] | Norway | Nursing Home- Special Care Unit (SCU) | Quantitative study Study-specific questionnaire (derived from 2 previous studies by same researcher) | 23 Nursing Home SCU’s 233 Relatives | Enabling factors: Frequent visits by family members are valuable for quality of care, as there is a mutual sharing of information between families and staff and this increases residents’ possibility of participating in SDM. Environmental issues: Families felt decisions about everyday care could be left with staff whom they trusted. |
Mann et al. (2013) “Do-not-hospitalize orders for individuals with advanced dementia: Healthcare proxies’ perspectives” [39] | USA | Nursing Home | Qualitative study Semi-structured interviews | 2 Nursing Homes 16 Family members (Health Care Proxies/HCPs) | Enabling factors: Families who have had a personal experience in healthcare, an understanding of the prognosis of advanced dementia, and a desire to limit resident distress. Inhibiting factors: Families who perceive a lack of physician involvement in decision-making and have a limited understanding of ‘Do-not-hospitalise’ orders and the resident’s prognosis. |
Mariani et al. (2017) “Shared decision-making in dementia care planning: barriers and facilitators in two European countries” (An Italian and a Dutch LTC setting) [43] | Italy & The Netherlands | Nursing Home | Qualitative study Focus group interviews with HCPs | 2 Nursing Homes: 11 HCPs (Italy) 9 HCPs (Netherlands) | Enabling factors: Following communication skills training for staff, and specific education sessions for family caregivers, SDM conversations took place between a triad composed of the resident, the family member and a care home professional as the facilitator. Staff scheduled moments during the day to offer residents, together with their family caregivers, an opportunity to express their views and preferences. This approach prompted staff & family to consistently acknowledge the resident’s autonomy and personhood. Inhibiting factors: Financial aspects/regulations were key inhibitors. |
Monson et al. (2021) “What are the shared decision-making experiences of adult children in regard to their parent/s’ health care in residential aged care facilities?” [25] | Australia | Residential Aged Care Facility (RACF) | Scoping literature review Mixed methods appraisal tool (version 2011) | 597 articles screened from four databases published in English, during period 1985–2019 | Inhibiting factors: Limited staffing levels & inadequate skill sets of staff inhibit families’ participation in SDM and affect the communication of important information about the resident’s health care. A need for higher educated staff/RNs in RCAF’s in order to promote and engage in SDM with residents and families. Enabling factors: In practice, formal SDM and having an equal say are not common. |
Norheim et al. (2012) “Factors that influence patient involvement in nursing homes: staff experiences” [35] | Norway | Nursing Home | Qualitative study Focus group interviews | 1 Nursing Home/different wards 16 Multidisciplinary team members | Enabling factors: Competence-building programme raised consciousness among staff & changed staff attitudes about person-centred care (PCC) for resident involvement in SDM. Inhibiting factors: Time pressure limited PCC and SDM. Environmental issues: Lack of sufficient time was considered a key factor that risked generating low-quality care. |
Sarabia-Cobo (2016) “Decisions at the end of life made by relatives of institutionalized patients with dementia” [31] | Spain | Long-Term Care Home (LTCH) | Qualitative study based on naturalistic principles Focus groups Reflective notes by researchers | 5 LTC Nursing Homes 84 Family members of residents with dementia | Inhibiting factors: Family members’ engagement with decision-making is influenced by their perceptions & feelings about an overwhelming emotional burden & guilt when making decisions on the resident’s behalf; life for the person with dementia is drastically altered by the disease; torn between the two faces of death - the tragedy versus the blessing; reduced quality of life for their loved one; and lack of a specific/key professional to help them understand the processes of the disease. |
Sims-Gould et al., (2014) “Autonomy, Choice, Patient-Centered Care, and Hip Protectors: The Experience of Residents and Staff in Long-Term Care” [36] | Canada | Long-Term Care (LTC) | Qualitative study Focus groups (Part of a larger mixed methods study) | 2 LTC facilities 27 Residents 39 Staff | Inhibiting factors: Evidence based research and the use of hip protectors as a tool for injury prevention took precedence over resident choice. Enabling factors: Training required on safeguarding individual choice and autonomy as well as injury prevention and best practices. Environmental issues: Policies are needed to support staff in respecting individual choice even when residents make a choice contrary to what best practice policies might suggest. |