Background
Methods
Approach
Scoping
Eligibility
Searching
Screening
Data extraction and analysis
Results
Studies included
Study characteristics
PCC concepts
Study | Person-centred care domains (n,% of 21 studies) | Total domains (n) | |||||
---|---|---|---|---|---|---|---|
Foster the relationship | Exchange information | Address emotions | Manage uncertainty | Share decisions | Enable self-care | ||
Berglund 2019 [53] | + | + | + | + | + | + | 6 |
Hancox 2019 [32] | + | + | + | + | + | 5 | |
Ihara 2019 [33] | + | + | + | 3 | |||
Hung 2018 [34] | + | + | + | + | + | 5 | |
Hall 2018 [35] | + | + | + | + | + | 5 | |
Jennings 2018 [36] | + | + | + | + | 4 | ||
Chung 2017 [37] | + | + | + | + | + | 5 | |
Guan 2017 [38] | + | + | + | + | 4 | ||
Wang 2017 [39] | + | + | 2 | ||||
Johansson 2017 [40] | + | + | + | + | 4 | ||
Han 2016 [41] | + | + | + | + | 4 | ||
Gaugler 2015 [42] | + | + | + | + | + | 5 | |
Edwards 2015 [43] | + | + | + | 3 | |||
Smythe 2015 [44] | + | + | + | + | 4 | ||
Edwards 2014 [45] | + | + | + | + | 4 | ||
Lerner 2014 [46] | + | + | + | + | + | 5 | |
McClendon 2013 [47] | + | + | + | 3 | |||
Kirkley 2011 [48] | 0 | ||||||
Robinson 2010 [49] | + | + | + | + | + | 5 | |
Vernooji-Dassen 2010 [50] | + | + | + | + | 4 | ||
Zaleta 2010 [51] | + | + | + | 3 | |||
Ericson 2001 [52] | + | + | + | + | + | 5 | |
Total | 14 (66.7) | 19 (90.5) | 21 (100.0) | 7 (33.3) | 15 (71.4) | 9 (42.9) | median 4 range 4–6 |
Identification of person-centred care approaches
Evaluation of PCC experience
PCC enablers and barriers
Level | Enablers | Barriers |
---|---|---|
Patient or Carer | • Developing daily routine • Perceived or tangible benefits • Memory aids • Positive past experience | • Lack of practical or emotional support from their carer to routinize activity • Reluctance to be helped • Family conflict • Children geographically or socially distant from affected parent • Children feeling like unwanted intruder |
Healthcare worker | • Mutual support from colleague • Job satisfaction • Experiential learning • Awareness of family dynamic problems • Maintaining neutral disposition • Following family lead • Creating a safe environment in which to offer help | • Variable knowledge/understanding of PCC • Attitudes about dementia • Perceived lack of control/time • Perceived low status within organization |
Organization | • Leadership style that promotes PCCS • How managers support and value staff • Risk management • Opinion leaders who advocate and model PCCS • PCC integrated in policy documents | • Inadequate staffing • Resource constraints • Pressurized environment |
Strategies to implement PCC approaches
Study | Goal (Research Design) | Intervention Design | ||||
---|---|---|---|---|---|---|
Content | Format | Delivery | Timing | Personnel/Participants | ||
Berglund 2019 [53] | Evaluate an educational program aimed at healthcare workers on how to provide person-centred home care (Qualitative – focus groups with 42 healthcare workers) | Session 1 - Dementia disease, associated disabilities, how to deal with problematic situations when delivering home care Session 2 - Psychiatric nursing, building a relationship, using conversation, adding emotions Session 3 - Models of care to support self-identity Session 4 - PCC: how to tailor and provide individualized care | Didactic and interactive with presentations, case studies and group discussions | In-person | Delivered over 4 to 6 months 4 sessions ranging from 30 min to 4 h | 2 nurse experts in dementia care Care assistants, home care officers, registered nurses, physiotherapists, occupational therapists, and care managers |
Ihara 2019 [33] | Evaluate the impact of a person-centred day care music listening intervention on mood, agitation, and social engagement for persons with dementia (Before-after cohort study of 31 persons compared with control group of 20 persons) | Personalized music playlist was developed by asking caregivers about the person’s favorite music or by playing different songs to gauge person’s reaction. Persons could listen to the same songs repeatedly or choose to listen to a variety of songs. Researchers shuffled the order of songs in each session | Person given headphones and iPod to listen to the personalized music playlist in a room with 7–10 others and closed door to minimize distractions | In-person | Single 1-h session: 20 min observation, 20 min music, 20 min post-observation | 3 researchers, 5 graduate and undergraduate students |
Hung 2019 [34] | Evaluate an educational program aimed at healthcare workers on how to provide person-centred outpatient dementia care (Multiple methods – survey, focus groups with 310 interdisciplinary healthcare workers) | Module 1 – PCC principles Module 2 - Common brain changes Module 3 – Communication and interpersonal strategies Module 4 – Self-protective skills and techniques | Didactic, small group learning exercises, story sharing, video vignettes, group reflections, and role-play | In-person | Single 1-day workshop, 12 people per workshop | Educators (number and characteristics not reported) |
Wang 2017 [39] | Evaluate the impact of a train-the-trainer education a program for primary care professionals on dementia knowledge and attitudes, and person-centred outpatient care delivery (randomized controlled trial of 170 physicians and nurses + focus groups with 30 non-specified healthcare workers) | Enhancing early diagnosis of and responding to dementia in primary care, translating knowledge into practice | Modules included pre-reading, short lecture and interactive case study discussion; learning resources included a workbook and 4 DVD’s. Project team (lead nurse + 9 physicians and nurses) provided ongoing support for trainers through email, telephone and site visits | In-person | Trainer sessions: 3-day workshop of 20 h total comprised of 10 modules Delivery to peers: Weekly in-service education (number of weeks, hours not specified). Learners also completed self-study of required readings. | Trainers were 1 nurse and 1 physician from each intervention site |
Han 2016 [41] | Explore how a social visit program offers person-centred support to persons with dementia and carers (qualitative – interviews with 5 carers) | Medical students were exposed to lectures on dementia fundamentals and communication skills for interacting with aging and cognitively impaired adults. They also took part in lunch meetings to share experiences with each other and program staff Students engaged persons with dementia (and sometimes carers) in social or cultural activity such as dinner or visiting a museum | Students received didactic (3-h lecture, monthly lunch-time speaker series), interactive (discussion with peers and program staff) and experiential training (reflection on learning) Students were paired with individuals based on shared interests and geographic proximity | In-person | Monthly meeting for minimum of four hours | First-year medical students received training in interaction with persons with dementia; persons with dementia were involved in social activity by medical students |
Gaugler 2015 [42] | Evaluate the impact of an online educational program on carer knowledge of person-centred approaches to use in the home (Before-after cohort – survey of 41 carers) | 3 modules: 1/ understanding memory loss Defines cognitive decline and explores impact on performance of activities of daily living 2/ living with dementia Strategies to help individuals with dementia function independently and safely and identifies tools for family caregiver stress management 3/approaches to manage behavioural problems | Videos offer vignettes and interviews with persons with dementia, family carers, professionals and national experts | Online | Three 1-h modules: 1/ 7 screens, 17 videos 2/ 18 screens, 4 videos 3/ 11 screens, 18 videos | Modules put together by a 14-person national expert panel comprising clinical and scientific experts in family caregiving |
Edwards 2015 [43] | Evaluate the impact of an educational intervention to promote person-centred outpatient primary care for persons with cognitive decline (Before-after cohort – survey of 94 physicians, nurses and clerical staff) | Factual information and extracts from interviews with patients and carers to depict person-centred approaches to dementia and case examples; Introduction to dementia and the subtypes plus a case for early diagnosis; introduction to the concept of person-centred approaches to dementia based on extracts from interviews with people with dementia and their caregivers which cover: living with dementia; stigma and attitudes; early diagnosis; and seeking a diagnosis, along with seven case examples of people with cognitive decline presenting for consultation in primary care; the final section summarized the earlier sections and also included information on making referrals to memory services | Didactic and interactive; package included PowerPoint presentation, handbook of slides, 4 case examples for group discussion, training manual with detailed guidelines for delivery | In-person | Single 1-h session over a lunch time meeting | Developed by a service user, carer, researcher, consultant psychiatrist, academic GP and a consultant clinical psychologist, all with experience and interest in dementia. Delivered by one of the researchers |
Robinson 2010 [49] | Evaluate the impact of an educational intervention to promote person-centred outpatient care by old age psychiatrists (Survey of 40 psychiatrists) | Theoretical aspects of person-centered care, facilitators and barriers, communication skills and approaches, all aimed to develop a therapeutic alliance, facilitated shared responsibility, promote patient autonomy, exploring patient experience and promoting quality of life | Didactic presentation, full group discussion, small group role-playing and self-reflection; 24 video clips showing demonstrating skills and approaches, and how to structure consultations | In-person | Single session of half day in length | 2 or 3 of the study authors facilitated each workshop |
Person-centred care for women affected by dementia
Framework of person-centred care and support for dementia
Domain | Elements | From this study |
---|---|---|
Foster a healing relationship | • Discuss roles and responsibilities • Communicate with honesty and openness • Foster trust in healthcare worker competence • Express caring and empathy • Build rapport | • Emphasize partnership • Ensure dignity and respect |
Exchange information | • Explore needs and preferences • All parties share information • Provide/refer to additional information • Assess and facilitate understanding | • Recognize the person’s life and current abilities through discussion, and verbal and behavioural cues • Allow time for questions |
Address emotions | • Explore and identify emotions • Assess anxiety or depression • Validate emotions • Express empathy or reassurance • Provide help to deal with emotions | • Reframe dementia as cognitive decline upon initial diagnosis to lessen impact • Address psychosocial issues in addition to biomedical |
Manage uncertainty | • Raise and discuss uncertainties in prognosis, management or outcomes • Explore and assess other uncertainties • Use problem-focused (behavioural) management strategies • Use emotion-focused (affective) management strategies | • Create stability through routines and continuity |
Share decisions | • Raise and discuss care or support options • Discuss decision process, and needs/support • Prepare persons/carers for deliberation and decisions • Jointly make and implement decisions and action plan • Assess decision quality and choices | • Tailor care and support to individual needs and preferences • Address or mitigate family conflict |
Enable self-management | • Describe the follow-up process • Provide information and training on self-care and self-monitoring • Share guidance on how to prioritize and plan self-care • Offer practical advice and support to implement self-care • Assess skills, self-care and progress | • Optimize independence • Engage persons in meaningful activity • Support carers • Provide information about available home or community support/services |