Table 2 General characteristics of included studies (n = 29)
Author | Country | Type of intervention | Effects/Results |
|---|---|---|---|
Agar et al. (2017) [31] | Australia | Facilitated family case conferencing | No significant group effect for family members’ satisfaction with care during the last 90 days of residents’ life. |
Ampe et al. (2017) [32] | Belgium | ‘We DECide’ – Disussing End-of-Life Choices | Advance care planning policy was significantly more compliant with ‘best practice’ after the intervention, while policy in the control group was not. Advance care planning discussions did not take place more often, nor were residents and family more involved in the discussions. |
Arcand et al. (2009) [33] | Canada | Pilot educational program for nursing staff and physicians on comfort care and advanced dementia; booklet | No significant effects of the intervention were found, although the post-intervention group expressed greater satisfaction in the area of communication with the healthcare team (8.0 vs. 6.6) and greater satisfaction with end-of-life care (8.3 vs. 7.3). |
Beer et al. (2011) [34] | Australia | Educational intervention for GPs and care staff | Nearly two third of general practitioners reported that the participants’ learning needs were met ‘entirely’. 95% of the staff members reported that the session met participants’ learning needs. In addition, qualitative feedback was very positive. |
Bramble et al. (2011) [35] | Australia | Family involvement in care (FIC) intervention | Participation in FIC led to an improvement of caregiver knowledge. Knowledge about dementia increased significantly. Family satisfaction was negatively related to staff consideration of relatives and management effectiveness. Staff well-being and job satisfaction were negatively related to their perceived inappropriate behavior of residents. |
Brazil et al. (2018) [36] | UK | Family focused advance care planning (ACP) intervention | Reduction in total Decisional Conflict Scale score in the intervention group compared with the usual care group. |
Chisholm et al. (2018) [37] | US | Goals of Care video decision aid for families of residents with advanced dementia | Staff perceived the intervention as positive and it was perceived as ‘more compatible with current practices’ by male staff, nurses, more experienced staff. |
Dassa (2018) [38] | Israel | Individualized database using personal music and photos that present life episodes | All three participants encountered difficulties when visiting the nursing home, mostly related to communication barriers. All three reported that using the individualized database led, for example, to better communication with their residents and less feelings of disconnection. |
Davis et al. (2011) [39] | US | Family Intervention: Telephone Tracking-Nursing Home (FITT-NH) for improving dementia caregivers’ adjustment following nursing home placement | Caregivers receiving FITT-NH showed a greater reduction in feelings of guilt related to placement compared to standard care. And also reported fewer problems and concerns with nursing home care (hassles) compared to standard care. FITT-NH caregivers also showed a trend toward a resumption of pre-caregiver activities (% of previous activities) compared to standard care. |
Ducharme et al. (2005) [40] | Canada | ‘Taking Care of Myself’, psychoeducational group program for daughters | Daughters’ competence in dealing with staff and their perceived challenge of the caregiver role increased. |
Jablonski et al. (2005) [41] | US | Family involvement in care (FIC) intervention | The experimental group showed less global deterioration during the study. Increased family involvement showed less global deterioration in residents. |
Kellett et al. (2010) [42] | Australia | Family Biography Workshop (FBW) | Participating family members were enabled to ‘stand outside’ and see the residents as a whole person. For staff, it was helpful to see the resident in a ‘family context’. Residents benefited, as staff’s know how on engaging with them increased. |
Kuhn & Forrest. (2012) [43] | US | Pilot palliative care education, training, consultations, and administrative coaching | Limited improvements for residents, staff and family members were demonstrated at the first nursing home (site 1), and significant improvements at the other nursing home (site 2). |
Maas et al. (2004) [44] | US | Family Involvement in Care (FIC) partnership intervention | An intervention effect was found for family disregard with staff, and the effect varied by generation. For conflicts with staff, no significant effect was found. An intervention effect was found for families’ perceptions of physical care and activities: evaluation of physical care significantly increased for the intervention group and the intervention effect for activities was conditioned by interaction with generation (again, the trend for the older comparison group was significantly negative. No intervention effect on families’ perception of management effectiveness was found. |
Mariani et al. (2018) [45] | Italy Netherlands | Staff training program on the use of shared-decision making (SDM) with residents and family caregivers in the care planning process | Many care plans developed during the intervention showed a high level of agreement with the care planning recommendations. In Italian and Dutch problem statements, the problem statements became clearer. In Italy, documentation of objectives and residents’ and families’ involvement increased, too. |
McNiel & Westphal (2018) [46] | US | Namaste Care program | Results suggest that Namaste Care™ may be useful for residents who can no longer participate in ‘regular’ nursing home activities. |
Moore et al. (2017) [47] | UK | ‘Compassion Intervention’ to enhance end-of-life care in advanced dementia | Due to the recruitment of only four family members, the researchers were unable to assess the effects on family members. |
Paun et al. (2015) [48] | US | Chronic Grief Management Intervention (CGMI) | Overall, no significant effects. At baseline, family members in the intervention group scored higher and therefore differed significantly from the control group with regard to loss of relationship with their family member placed in long-term care and heartfelt sadness and longing). Family members in the intervention group were highly satisfied with the program. |
Reinhardt et al. (2014) [49] | US | Discussing and providing information about end-of-life care options with family members and psychosocial support for family members | No significant effects for depressive symptoms or life satisfaction of family members. |
Robison et al. (2007) [50] | US | Partners in Caregiving in the Special Care Unit Environment (PIC-SCU) | In the intervention group, staff behavior (providing news, encouragement or suggestion to family) increased over 6 months, but did not change significantly for the control group. In the intervention group, families’ ease of talking to staff increased and remained elevated at 6 months, whereas scores for the control group were static. When examining intergenerational differences between spouses and other some generation family members and children or younger generation family members, same-generation family members in the intervention group increases their involvement in the short term, whereas control family involvement declined (no significant differences for younger generation family members). All other outcomes were not statistically significant. |
Rosemond et al. (2017) [51] | US | Goals of Care intervention: video decision-aid about goals of care viewed by family members of residents with dementia, followed by their participation in a care plan discussion with staff | Deciding on goals of care in the presence of trust vs absence of trust: (When decision makers expressed trust in the NH, positive relationships with staff were evident): 1. End-of-life experience was positive vs negative 2. Goals of care discussions were dynamic vs perceived to be ignored 3. Formal goals of care discussions were not always necessary vs created confusion. |
Rosen et al. (2003) [52] | US | Web-based educational program (prototype) | Comparing answers before and after the program, family members gained knowledge about dementia. Most respondents indicated that the program was ‘very much’ providing information he/she needed, 2 indicated that ‘somewhat’. All indicated that the program would be ‘very much’ helpful to family members who recently placed a loved one in a nursing home. |
Saini et al. (2016) [53] | UK | ‘Compassion Intervention’ to enhance end-of-life care in advanced dementia | Four major themes described strategies for improving practice: family and staff education about dementia progression and end–of-life care; appreciating in-depth end-of-life discussions compared with simple documentation of care preferences; provision of time and space for sensitive discussions; and having an independent healthcare professional or team for the end-of-life discussions. |
Snyder et al. (2013) [54] | US | Decision aid to improve decision making about feeding options in dementia care | Comparing answers before and after exposure to the decision aid, family members had/were after exposure: more correct answers to knowledge items on tube feeding, decreased expectations of benefits from tube feeding, decreased levels of overall decisional conflict, unchanged treatment preferences (nearly all chose assistance with oral feeding over tube feeding and preferences did not change, more certain about their choice of oral feeding. |
Stacpoole et al. (2017) [55] | UK | Namaste Care program | Reaching out to each other: 1. Families re-connected with their relatives 2. Families recognized the compassion of care staff and appreciated the difficulties of caring for people with advanced dementia; Enhanced well-being: 1. For one wife, the guilt she felt for placing her husband in the care home and leaving him each day after visiting was lifted 2. A daughter summarized that Namaste made visits easier, helped her re-connect with her mother and recover a meaningful role in her mother’s life |
Stirling et al. (2014) [56] | Australia | Tool to aid talking about dementia and dying | The tool facilitated a more open dialogue between the palliation resource nurses (a role specifically developed) and family members. These nurses as well as family members gained confidence in discussing the death of their relative with dementia. In some cases, specific decisions around future care were discussed. Family members and nurses were satisfied with these discussions. |
Van der Steen et al. (2012) [57] | Canada Netherlands Italy | Family booklet on comfort care in dementia | The booklet was found highly acceptable and useful by Canadian and Dutch families, but less so by Italian families. |
Van der Steen et al. (2011) [58] | Netherlands | Family booklet on comfort care in dementia | There was a great need for written explanation about palliative care in dementia. The booklet is seen as suitable and useful. All respondents saw a role for caregivers in giving out the booklet. Half of the respondents felt that the booklet should also be available without having contact with caregivers; sometimes even before admission. An adapted version might support caregivers and family in practice. |
Verreault et al. (2018) [59] | Canada | Multicomponent intervention to improve quality of care and quality of dying in advanced dementia | In the intervention group, compared to usual care: more families received an information booklet; more families had contact with the physician in last month of life; more families had face-to-face contact with the physician in last month of life; no difference in number of families that had a discussion of advanced directives in last month of life; more frequent use of volunteers to give family a respite. |