Figure 1
The SUSTAIN P3CEQ experience case study design: research questions, data and methods.
Table 1
Socio-demographic and health characteristics of the sample of service users (N = 228).
| N | M (SD) | n | % | |
|---|---|---|---|---|
| Socio-demographic characteristics | ||||
| Sex: female | 228 | 153 | 67.1 | |
| Age (in years): | 228 | |||
| – 65–74 years | 53 | 23.2 | ||
| – 75–84 years | 95 | 41.7 | ||
| – 85 years and older | 79 | 34.6 | ||
| – Unknown | 1 | 0.4 | ||
| Education (completed): | 228 | |||
| – No schooling/primary school | 107 | 46.9 | ||
| – Secondary school | 48 | 21.1 | ||
| – Advanced vocational training | 48 | 21.1 | ||
| – High professional/academic education | 22 | 9.6 | ||
| – Unknown | 3 | 1.3 | ||
| Living situation: | 228 | |||
| – Living at home, alone | 118 | 51.8 | ||
| – Living at home, with spouse/partner | 65 | 28.5 | ||
| – Living at home, with family member(s) | 20 | 8.8 | ||
| – Living at home, with paid carer | 2 | 0.9 | ||
| – Assessed living/sheltered home | 4 | 1.8 | ||
| – Nursing or residential home for older persons | 18 | 7.9 | ||
| – Unknown | 1 | 0.4 | ||
| Marital status: | 228 | |||
| – Married/cohabiting | 78 | 34.2 | ||
| – Divorced | 26 | 11.4 | ||
| – Widowed | 105 | 46.1 | ||
| – Single | 16 | 7.0 | ||
| – Unknown | 2 | 0.9 | ||
| Health related characteristics (self-reported)* | ||||
| Hearing problems: | 226 | 92 | 40.7 | |
| Visual problems: | 226 | 93 | 41.2 | |
| Cognitive impairments: | 225 | 26 | 11.6 | |
| Mental health problems: | 225 | 71 | 31.6 | |
| Number of chronic conditions**: | 228 | 5.23 (2.47) | ||
| – None | 3 | 1.3 | ||
| – One to three | 60 | 26.3 | ||
| – Four to six | 101 | 44.3 | ||
| – Seven or more | 64 | 28.1 | ||
| – Multi-morbid (2 or more chronic conditions***) | 217 | 95.2 | ||
[i] * The four categories of health characteristics were created from the list of eighteen individual health conditions collected with the demographic/health data sheet: hearing problems, visual problems, cognitive impairment (dementia including Alzheimers, loss of memory, traumatic brain injury, alone or in combination), and mental health problems (anxiety, panic disorders, depression, schizophrenia, alone or in combination).
** Variable based on a count of conditions indicated to be present.
*** Multi-morbidity is calculated here as having two or more of the following conditions: hearing problems, problems with vision, dementia including Alzheimers, loss of memory, traumatic brain injury, anxiety – panic disorders, depression, breathing problems (asthma, chronic bronchitis, lung emphysema, or chronic obstructive pulmonary disease), cancer, diabetes, dizziness with falling, heart failure, stroke-cerebral haemorrhage, prostate symptoms, urine incontinence, broken hip, other broken bones, osteoarthritis, loss of bone tissue – osteoporosis, persistent back pain.
Table 2
Country and P3CEQ administration characteristics.
| N | n | % | |
|---|---|---|---|
| Country | 228 | ||
| – Austria | 7 | 3.1 | |
| – Estonia | 52 | 22.8 | |
| – Germany | 61 | 26.8 | |
| – Netherlands | 13 | 5.7 | |
| – Norway | 40 | 17.5 | |
| – Spain (Catalonia) | 32 | 14.0 | |
| – United Kingdom | 23 | 10.1 | |
| P3CEQ administration characteristics | |||
| Mode of administering: | 228 | ||
| – Face to face | 217 | 95.2 | |
| – By telephone | 3 | 1.3 | |
| – By mail | 8 | 3.5 | |
| Place of administration | 228 | ||
| – At home (includes temporary nursing home) | 166 | 72.8 | |
| – At care provider premises | 62 | 27.2 | |
| In presence of a carer: | 228 | 39 | 17.1 |
| Service users with cognitive impairment: In presence of a carer | 26 | 11 | 42.3 |
| In combination with qualitative interview: | 228 | ||
| – No | 141 | 61.8 | |
| – Qualitative interview before P3CEQ | 33 | 14.5 | |
| – Qualitative interview after P3CEQ | 54 | 23.7 |
Table 3
Meanings attributed to P3CEQ items in open responses of service users who scored the corresponding item. Ordered from more to less frequent.
| MOST FREQUENTMEANING/REACTION | OTHER FREQUENT MEANINGS/REACTIONS | OTHER MEANINGS/REACTIONS | |
|---|---|---|---|
| Q1. Discuss what’s important with care professionals | Recalling (lack of) conversation with specific professional(s) or at a specific time (e.g. first visit), and/or (lack of) solution | Recalling basic interactions with care professionals (e.g. receiving advice, information, medication checks, being told what to do) | Reporting delegation of discussions to family member/friends Qualifying professionals (e.g. being happy with care team, trust, lack of empathy) |
| Q2. Involved in decisions | Recalling (lack of) being involved in a decision with specific professional(s) or at a specific time (e.g. first visit), and/or (lack of) solution | Recalling basic interactions with care professionals (e.g. receiving explanations, being informed, complaints being listened to, following routines) | Reporting cognitive deterioration as a factor to be taken into account when seeking decisions |
| Q3. Considered ‘whole person’ | Recalling that care professionals(do/do not always or depending on the professional) treat them with e.g. caring attitude, compassion, respect, easy to understand language. | Referring to specific examples of how care professionals (did not) take whole situation into consideration (e.g. beyond clinical approach or criteria, beyond formal job duties) Recalling basic interactions (e.g. being asked ones opinion, receiving advice, being able to access electronic records) | |
| Q4. Repeating information | Recalling how care professionals are (not) aware of conditions and/or can (not) access information (e.g. in the computer, written documentation, when care professionals change). | Recalling details that are not directly relevant to the question. | |
| Q5. Care joined up in a way that works | Recalling how care professionals were (not) communicating, coordinating and aware of different parts of the care process | Qualifying professionals or professional care (e.g. well treated, useful, smooth) Referring to current health situation and (lack of) improved health outcomes | Referring to the existence of care plan that care professionals were following. Giving specific examples of how the coordinated care does (not) work for them (e.g. being visited at home, being visited by the same professional, long waiting lists, timetable of cleaners, coordination between primary and specialist professionals). |
| Q6. (Single) professional coordinating care | Confirming there is (not) a specific professional or professionals who coordinate care. (e.g the GP, the nurse, the GP and the nurse, one for social and one for health) | Identifying a family/friend as the person they were referring to as in charge of coordinating their care. | |
| Q7. Care planning (overall) | Describing the actions professionals and him/herself were applying as (not) part of a plan | Referring to medication plans or clinical records Referring to different needs that they consider (un)attended | |
| Q8. Support to self-manage | Explaining whether care provided meets their needs | Referring to specific examples when advice or instrumental aid to enhance self-management were (not) being provided Qualifying professionals or professional care (e.g. well treated, helped when needed) | |
| Q9. Information to self-manage | Recalling examples when (un)useful information for self-management was(not) received (e.g nutritional advice, medication adherence advice, overwhelming advice) | Refers to oneself or close persons as self-seeking information for self-management. Refers to receiving information in general. | |
| Q10. Confidence to self-manage | Refers to level of autonomy (physical, cognitive) as explaining level of confidence | Recalls examples of support (not) received and how that impacts level of confidence | |
| Q11a. Wants close ones involved | Identifies the person(s) to be involved. Identifies the person(s) to be involved, and specifies how or why | Explaining reasons for not wanting to involve others (e.g. self-capable, not wanting to be a burden, negative relation with family members) | |
| Q11b. Close ones involved as much as wanted | Identifies persons or occasions when care team has/hasn’t involved as much as wanted. | Identifies the person whohas/hasn’t been involved | Refers to basic relations between care professionals and close ones (e.g. calling them, having them accompany service users to health consultations) |
Table 8
Fixed effects of characteristics of service users and administration mode on P3CEQ scale or item scores; results of two-level mixed-effect linear regression model (N = 13 integrated care initiatives, N = 183–225 service users); separate analyses for each characteristic.
| PERSON-CENTREDNESS (SCALE) | CARE PLANNING OVERALL (AVERAGE Q7a–d) | FAMILY/FRIENDS INVOLVED IN DECISION-MAKING AS MUCH AS WANTED (Q11b) | ||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|
| N | ESTIMATE | SE | P | N | ESTIMATE | SE | P | N | ESTIMATE | SE | P | |
| Fixed effect of service user characteristics | ||||||||||||
| Gender: female (ref. male) | 225 | –0.20 | 0.60 | .74 | 223 | –0.08 | 0.15 | .57 | 185 | –0.15 | 0.15 | .32 |
| Age (ref. 65 to 74 years) | 224 | 222 | 184 | |||||||||
| – 75 to 84 years | –0.17 | 0.74 | .82 | 0.34 | 0.18 | .06 | 0.29 | 0.19 | .12 | |||
| – 85 years or older | 0.71 | 0.74 | .33 | –0.11 | 0.18 | .54 | 0.25 | 0.19 | .19 | |||
| Education (ref. no schooling or primary school) | 222 | 220 | 183 | |||||||||
| – secondary school | –0.81 | 0.79 | .30 | –0.21 | 0.18 | .26 | –0.33 | 0.19 | .08 | |||
| – advanced vocational training | –1.19 | 0.81 | .14 | –0.22 | 0.19 | .25 | –0.46 | 0.22 | .04 | |||
| – high professional/academic education | –2.62 | 1.06 | .01 | –0.25 | 0.25 | .31 | –0.79 | 0.25 | .002 | |||
| Hearing problems (ref. no) | 223 | –0.01 | 0.57 | .99 | 221 | –0.04 | 0.14 | .79 | 184 | 0.13 | 0.14 | .35 |
| Visual problems (ref. no) | 223 | 0.83 | 0.59 | .16 | 221 | –0.08 | 0.14 | .56 | 184 | –0.09 | 0.15 | .54 |
| Cognitive problems (ref. no) | 222 | –2.43 | 0.86 | .005 | 220 | –0.18 | 0.22 | .40 | 183 | –0.21 | 0.22 | .35 |
| Mental health problems (ref. no) | 222 | 0.32 | 0.60 | .60 | 220 | 0.09 | 0.15 | .54 | 183 | 0.12 | 0.16 | .45 |
| Fixed effect of administration characteristics | ||||||||||||
| Mode of administering: other (ref. face-to-face) | 225 | 2.82 | 1.61 | .08 | 223 | –0.29 | 0.37 | .43 | 185 | –0.26 | 0.40 | .51 |
| Carer: present (ref. not present) | 225 | –1.45 | 0.78 | .07 | 223 | –0.07 | 0.19 | .73 | 185 | 0.17 | 0.20 | .39 |
| In combination with qualitative interview (ref. no) | 225 | 223 | 185 | |||||||||
| – interview before P3CEQ | –1.53 | 1.13 | .17 | –0.13 | 0.23 | .57 | 0.25 | 0.28 | .37 | |||
| – interview after P3CEQ | –1.33 | 0.73 | .07 | –0.00 | 0.17 | .98 | –0.02 | 0.18 | .90 | |||
Table 9
Fixed effects of characteristics of service users and administration mode on P3CEQ dichotomous item scores; results of two-level mixed-effect logistic regression model (N = 13 integrated care initiatives, N = 214–223 service users); separate analyses for each characteristic.
| (SINGLE) PROFESSIONAL COORDINATING CARE(Q6) | WANT FRIENDS/FAMILY INVOLVED IN DECISION-MAKING: YES (VS NO/DON’T KNOW) (Q11a) | |||||||
|---|---|---|---|---|---|---|---|---|
| N | ESTIMATE | SE | P | N | ESTIMATE | SE | P | |
| Fixed effect of service user characteristics | ||||||||
| Gender: female (ref. male) | 223 | 0.02 | 0.35 | .96 | 217 | –0.19 | 0.35 | .58 |
| Age (ref. 65 to 74 years) | 222 | 216 | ||||||
| – 75 to 84 years | –0.48 | 0.45 | .28 | 0.46 | 0.42 | .28 | ||
| – 85 years or older | –0.14 | 0.45 | .75 | 0.81 | 0.42 | .06 | ||
| Education (ref. no schooling or primary school) | 220 | 215 | ||||||
| – secondary school | 0.26 | 0.49 | .59 | 0.66 | 0.47 | .16 | ||
| – advanced vocational training | 0.42 | 0.49 | .39 | 0.32 | 0.46 | .49 | ||
| – high professional/academic education | 0.91 | 0.65 | .16 | –0.32 | 0.58 | .58 | ||
| Hearing problems (ref. no) | 221 | –0.40 | 0.33 | .23 | 215 | 0.67 | 0.34 | .05 |
| Visual problems (ref. no) | 221 | 0.04 | 0.34 | .91 | 215 | –0.31 | 0.34 | .37 |
| Cognitive problems (ref. no) | 220 | –0.51 | 0.51 | .32 | 214 | 0.76 | 0.61 | .21 |
| Mental health problems (ref. no) | 220 | 0.13 | 0.35 | .71 | 214 | –0.37 | 0.34 | .28 |
| Fixed effect of administration characteristics | ||||||||
| Mode of administering: other (ref. face-to-face) | 223 | 0.06 | 0.97 | .95 | 217 | –1.01 | 0.96 | .29 |
| Carer: present (ref. not present) | 223 | –0.03 | 0.45 | .95 | 217 | 2.12 | 0.66 | .001 |
| In combination with qualitative interview (ref. no) | 223 | 217 | ||||||
| – interview before P3CEQ | 0.35 | 0.63 | .58 | 1.02 | 0.66 | .12 | ||
| – interview after P3CEQ | –0.51 | 0.44 | .24 | –0.10 | 0.41 | .82 | ||