Table 2

Inductively-identified themes additional to Santana model with corresponding codes(see online supplemental table 2 for full table of studies’ findings deductively mapped onto Santana model and inductively mapped onto additional themes)

Inductively-identified themes additional to Santana modelNumber of supporting studiesExamples of corresponding codes from supporting studies
 Family and friend involvement and support
  •  Involving family/friends in information-sharing and decision-making

    •  Respecting the opinions and worries of friends/family

    •  Providing family/friends with opportunities to ask questions

  •  Addressing the needs of family/friends

36–40 42 44 46 47 49 51
“Involving the family is a massive part of person-centred care, as their family know everything about them; they just know them inside out…” (Registered nurse 4). (Ross et al, 2015, p1228; Quality score 0.8)47

Welcoming family was described as developing and maintaining trust in that the staff would actively communicate changes and significant events to the family; so that they did not have to constantly seek out information by making phone calls or asking the staff when they visited. Welcoming family was also described by staff as creating opportunities for beneficial teamwork, so that the family’s unique knowledge about the person with dementia could be incorporated into care plans.44 (Edvardsson et al, 2010, p2614; Quality score 0.8)44
Respondents in both views state that it is important to attend to the preferences of patients first, and to those of the family thereafter…‘Of course there are some meetings involving the whole family, but ultimately, it is the patient who decides and not the family’ (respondent 13).40 (Galekop et al, 2019, p4; Quality score 0.95 (qualitative), 0.85 (quantitative))40
The involvement and respect to the opinions and worries of friends and family was considered very important for the majority of patients.36 (Bisschop et al, 2017, p2250; Quality score 0.85)36

(Suggested patient-centred cancer care indicators): Family and friends had opportunities to ask the specialists questions; Family and friends had opportunities to ask the nurses questions.38 (Ouwens et al, 2010, p126; Quality score 0.65 (qualitative), 0.78 (quantitative))38
C2. The care provider should gather information on the psychosocial and emotional health status of family and friends of the patient and adequately refer to specialists, depending on the diagnosed problems. (One of final set of approved quality indicators),39 (Uphoff et al, 2011, p35; Quality score 0.8 (qualitative), 0.88 (quantitative))39

It was noted that carers undergo sustained periods of dealing with multiple stressors, combined with a lack of attention to their needs and their welfare and little-to-no follow-up, and that this contributed to a sense of being disregarded once the person being cared for had passed away or had reached a less acute stage. “…the carer is the one that carries the load. You know they’re the ones that are looking after the sick person as well as trying to manage family.” (103 Both).49 (Green et al, 2018, p8; Quality score 0.85)49
 Promoting continuation of normality and self-identity
  •  Support for participating in regular personal life activities

  •  Providing meaningful activities for inpatients

37 38 44–46 49 51 52
Themes and goals centred on understanding “disease as a path/journey”; to “live as a human being” by participating in life despite the disease; to regain activity, control and hope.51 (Kienle et al, 2016, p483, Quality score 0.9)51

The overarching themes of doctors were to help patients live with the disease and find their own way through it; to encourage them to participate in life and regain autonomy and a sense of control and self-efficacy.52 (Kienle et al, 2018, p128; Quality score 0.9)52

For instance, some patients were not afraid of death but rather of losing certain sensibilities or fine cognitive functions: “For instance a patient with advanced oesophagus carcinoma wished to write several publications; he had a spiritual orientation and rejected chemotherapy because he feared cognitive impairments and emotional constraints; with regular intralesional mistletoe extract injections the oesophageal stenosis reopened, the patient could eat and kept well for a substantial time with a good quality of life and pursued his writing and publishing activities.”(Gastroenterologist),51 (Kienle et al, 2016, p482, Quality score 0.9)51

Individually targeted activities were described not only as providing a meaningful content to the day, but also as a means in reaffirming the residents as individual persons who were able to do the things they enjoyed. Family and staff further described that such activities preferably were adapted to the individual person’s ability so that their self-esteem could be boosted by the successful completion of activities, rather than feeling defeated and demoralised by being expected to undertake something that was beyond their capability.44 (Edvardsson et al, 2010, p2615; Quality score 0.8)44

Two of the participants suggested that in their client-centeredness they ‘manipulated’the situation to enable choices, but ones that further occupationally engaged their clients. One participant expressed that the development of the emotional climate or helping people at the end of life engage in full expression of themselves was client-centred and family-centred.46 Pizzi, 2015, p446; Quality score 0.65)46
 Structuring service organisation to enable continuity of care and patient navigation
  •  Simplification of care pathways to ease patient navigation

  •  Appointment system structured to allow patients to see same professionals over time

  •  Structures enabling flexibility in service delivery and care practice.

  •  Establishing cooperation pathways across specialisms and institutions

36–38 41 43 44 46 47 49 51
Using multidisciplinary clinics to decrease wait times and patient anxiety between specialist referrals; Having nursing staff provide additional teaching following the physician visit. (Physician identified patient- and family-centred strategy pertaining to streamlining care delivery.)43 (Nguyen et al, 2017 (online supplemental table 2); Quality score 0.65)43

The complex organisation of services could also affect the experience of care. Another family member summarised this: “The system(the oncology clinic) is so complicated that it’s like swimming in molasses. (Family member 3)41 (Bilodeau et al, 2015, p109; Quality score 0.7)41

The most prominent negative experiences noted were due to seeing different doctors at subsequent appointments: “We had an appointment with our doctor, but then we received a message that a new doctor was scheduled to help us that day. We really did not like that, especially because he had to tell us new test results and the prognosis. There was no explanation; they only told us our regular doctor was absent.” (Respondent 12)36 Bisschop et al, 2017, p2250; Quality score 0.85)36

Mostly in data from staff and family, it emanated that to be person-centred, aged care facilities need to have flflexible routines adapted to the person with dementia’s needs rather than the needs of staff, especially in relation to staffing, care tasks and activities.44 (Edvardsson et al, 2010, p2616; Quality score 0.8)44

Some doctors worked in a cancer centre…the others cooperated with oncologists, surgeons, radiotherapists, and other relevant specialists, often referring patients to each other. This cooperation was usually described as positive: “These centres know me all for long… they know that I know exactly what they do… it functions well” (Paediatrician).51 (Kienle et al, 2016, p488, Quality score 0.9)51