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Table 2 Study characteristics, population, study design, intervention delivery, structure, type, and follow-up

From: Effectiveness of interventions for informal caregivers of people with end-stage chronic illness: a systematic review

Study (1st author, year, location)

Population

a. Condition(s); b. N(%); c. Age M ± SD; d. sex

Study design

Intervention delivery

a. Setting; b. Facilitator;

c. Format; d. Recipient

Intervention structure

a. Intervention duration; b. No. of sessions; c. Frequency; d. Length of session

Intervention type (targeting)

a. Type; b. Targeting

Intervention follow-up

Allen, 2008, [36] USA

Patient and family caregiver dyads (n = 31)

a. Advanced mixed chronic illness

Intervention group (IG)

b. n = 17 dyads (55%)

c. Cs: 57.8 ± 10.4; Pts: 75.4 ± 11.3 years

d. Female Cs: 15 (88%); female Pts: 12 (71%)

Control group (CG)

b. n = 14 dyads (45%)

c. Cs: 55.1 ± 15.2; Pts: 75.3 ± 10.5 years

d. Female Cs: 11 (79%); female Pts: 11 (79%)

2-arm parallel

group

(intervention/

control)

Randomised contact control group design

a. Home

b. Interventionists who received intensive training, observed by a licensed clinical psychologist

c. Face-to-face

d. Dyad: patient and caregiver (together)

a. Approximately 3 weeks

b. 3 sessions

c. Weekly (approx.)

d. Session 1 M = 82 min

Session 2 M = 66 min

Session 3 M = 70 min

a. Treatment components from life review and CBT

b. Caregiver stress; depression; psychological wellbeing

Post intervention (on study completion)

Aloweni, 2022,  [32] Singapore

Family caregivers (n = 44)

a. Advanced renal disease (CKD)

Intervention group (IG)

b. n = 16 (36%)

c. 44.1 ± 10.3 years

d. Female: 10 (63%)

Control group (CG)

b. n = 28 (64%)

c. 48.4 ± 15.2 years

d. Female: 21 (75%)

2-arm parallel

group

(intervention/

control) feasibility RCT

a. Hospital and home

b. A clinical psychologist trained in mindfulness

c. Face-to-face

d. Caregiver (family caregiver)

a. 4 days Mindfulness training (MT)

b. 4 sessions

c. Daily, with telephone contact every week for 4 weeks and monthly for 6 months to check on daily mindfulness practice

d. 1 h

a. Third-wave cognitive-behavioural therapy: Mindfulness Therapy

b. Caregiver stress; anxiety; HRQoL

4 weeks, 3 months, 6 months

Bakitas 2017, [38] USA

Patient and caregiver dyads

a. Advanced heart failure

Intervention group

b. n = 48 (100%)

c. 64.9 ± 9.3 years

d. Female, 39 (81.3%)

No control group (CG)

1 group feasibility study (of the ENABLE CHF-PC intervention trialled in Dionne-Odom, 2020, USA)

a. Home/telephone

b. Nurse-led/delivered—Five nurse coaches received 20 h of training including self-study of intervention protocols/ scripts and interactive role-play of 10 digitally recorded practice sessions. Nurse coaches were debriefed on their training sessions by the PI and Co-I who provided constructive feedback

c. Telephone; manualised intervention

d. Caregiver and patient

a. 24 weeks

b. 4 sessions for caregivers

c. Weekly; with monthly follow-up sessions; using ‘Charting Your Course’, educational guidebook

d. M = 46 min for weekly sessions

a. Structured, manualised; theory-based intervention

b. Caregiver burden, anxiety, depression, QoL

24 weeks

Carson, 2016, [29] USA

Family caregivers/Surrogate decision makers (n = 365)

a. Chronic critical illness

Intervention group (IG)

b. n = 184 (50%)

c. 51 ± NR years

d. Female, 128 (70%)

Control group (CG)

b. n = 181 (50%)

c. 51 ± NR years

d. Female: 131 (72%)

2-arm parallel

group

(intervention/

control) RCT

a. Hospital

b. A palliative care physician and nurse practitioner (could include social workers, chaplains, or other disciplines as needed) with training in study approach—protocol guided

c. Face-to-face

d. Families/main caregiver

a. 10 days

b. Minimum of 2 protocolised, interdisciplinary, informational support meetings/sessions

c. Sessions 1 and 2 separated by 10 days

d. NR

a. Information and support

b. Anxiety; depression; PTSD symptomology

3 months

Chan, 2016, [33] Hong Kong

Patient and family caregiver dyads (n = 29)

a. Advanced renal disease (CM)

Intervention group (IG)

b. n = 14 dyads (48%)

c. NR

d. Female Cs: 11 (79%); female Pts, 6 (43%)

Control group (CG)

b. n = 15 dyads (52%)

c. NR

d. Female Cs: 11 (73%); female Pts: 8 (53%)

2-arm parallel

group

(intervention/

control) pilot RCT

a. In clinic; home and telephone at follow-up

b. Nurse, social worker, physician(renal)

c. Face-to-face, with home visits and telephone at follow-up

d. Caregiver and patient

a. 24 weeks

b. 6–12 sessions

c. 1–2 per month

d. 30 min

a. Enhanced psychosocial support programme

b. Caregiver burden, anxiety, depression

1,3,6 months

Dionne-Odom, 2020, [43] USA

Caregivers (n = 158)

a. Advanced heart failure

Intervention group (IG)

b. n = 82 (52%);

c. 59.2 ± 12.4 years

d. Female: 73 (89%)

Control group (CG)

b. n = 76 (48%)

c. 56.7 ± 10.8 years

d. Female: 62 (82%)

2-arm parallel

group

(intervention/

control) RCT

a. Home

b. Nurse-led/delivered — Four registered nurse coaches underwent 28 h of structured orientation and training overseen by the principal investigator, caregiving expert co-investigator, and study staff,

c. Telephone; manualised intervention

d. Caregivers

a. 48 weeks

b. 4 sessions; monthly follow-up up to 48 weeks

c. Weekly; monthly follow-up up to 48 months

d. 20–60 min per session (M = 44.1 min)

a. Manualised psychosocial and problem-solving support; theory-based (chronic care model) intervention

b. Caregiver burden, anxiety, depression, QoL

8, 16 weeks

Douglas, 2005, [34] USA

Family caregivers (n = 290)

a. Chronic critical illness

Intervention group (IG)

b. n = 211 (73%)

c. 53.1 ± 14.5 years

d. Female, 156 (74%)

Control group (CG)

b. n = 79 (27%)

c. 52.6 ± 17.7 years

d. Female: 54 (68%)

2-arm parallel

group

(intervention/

control) RCT

a. Hospital or telephone if living > 30 miles from hospital site

b. Advanced nurse practitioner led

c. Face-to-face or by telephone depending on locations

d. Patients and caregivers

a. 8 weeks

b. Minimum of 8 APN-initiated contacts that constituted the intervention. Additional contacts were initiated by the patient, caregiver, health-care professional, or APN

c. The median number of contacts during the 8 week study period was 30 for those in the experimental group

d. NR

a. Structured intervention: coping/instrumental/emotional/social support

b. Caregiver burden, depression, HRQoL

2 months

Gary, 2020, [35] USA

Family caregivers (n = 127)

a. Advanced heart failure

IG1: Psycho education (PE)

b. n = 44 (35%)

c. 55 ± 11 years

d. Female: 41 (93%)

IG2: Psychoeducation + exercise (PE + E)

b. n = 48 (38%)

c. 54 ± 10 years

d. Female, 42 (88%)

Control group (CG)

b. n = 35 (28%)

c. 57 ± 14 years

d. Female: 34 (97%)

3-arm parallel

group

(2 interventions/

1 control) RCT

a. PE: Unclear; PE + E: exercise (E) aspect of intervention is home based

b. NR

c. PE: Educational group sessions

PE + E: PE and an individualised exercise programme

d. Caregivers

a. 24 weeks

b. PE: 4 sessions; with follow-up phone calls weekly for first 12 weeks and then 2/month for the (next) 12-week maintenance period

PE + E: 4 PE sessions; E: Approx. 36 sessions over first 12 weeks; NR 12-week maintenance period

c. PE: Weekly

PE + E: E Aerobic:3 times/week

E Resistance: 2–3 times/week

d. PE: NR

PE + E: E: Aerobic: 30 min; resistance: 1–1.5 h

a. Psychoeducation involving active learning, group exercises and discussion, and coaching

b. Caregiver strain

6 months

Hener, 1996, [37] Israel

Patient and spouse caregiver dyads (n = 60)

a. Advanced renal disease (ESRD)

IG1: Supportive (S)

b. n = 18 (30%)

c. Cs: 50.8 ± 12.8 years

d. Female Cs: 12 (67%); female Pts: 6 (33%)

IG2: Cognitive-behavioural therapy (CBT)

b. n = 18 (30%)

c. Cs, 53.1 ± 10.7 years

d. Female Cs, 12 (67%); female Pts, 6 (33%)

Control group (CG)

b. n = 24 (40%)

c. Cs: 55.7 ± 10.0 years

d. Female Cs: 16 (67%); female Pts: 8 (33%)

3-arm parallel

group

(2 interventions/

1 control) quasi-experimental study

a. Home

b. 2 clinical psychologists and 1 clinical social worker. Each therapist had 9–15 years’ experience in the specific treatment approach and both theoretical and clinical experience in family and short-term therapy

c. Face-to-face

d. Patient and caregiver (spouse)

a. 8 weeks

b. 8 sessions

c. 8 sessions in 8 weeks — possibly weekly, but unclear

d. Approx. 80 min

a. Psychosocial and problem-solving support; theory-based (chronic care model) intervention

b. Anxiety; depression; self-efficacy; distress

Post intervention (end of programme)

Law, 2021, [39] Hong Kong

Patients (n = 74) and caregivers (n = 36)

a. End-stage, non-malignant, chronic diseases, including:

Respiratory (55.4%)

Renal failure (13.5%)

b. n = 36 (100%)

c. Cs: 58.5 ± 16.1 years

d. Female Cs: 31 (86%);

female Pts: 25 (34%)

Single-group pre-post comparison study

a. Community

b. 2 social workers (case managers), 1 nurse, 1 programme assistant, 3 professional volunteers (retired nurses), and 43 trained community volunteers. Community volunteers had ≥ 20 h training before engaging in the programme

c. Face-to-face, supplemented with phone calls

d. Patients and caregivers

a. 3–4 months (active)

b. 6–8 sessions

c. Unclear

d. Unclear

a. Education with psychosocial–spiritual support including stress management and creative therapeutic techniques

b. Caregiver strain, psychological wellbeing

Post active intervention (3 months)

Liljeroos, 2015, [31] Sweden

Patient and partner caregiver dyads (n = 155)

a. Advanced heart failure

Intervention group (IG)

b. n = 71 (46%);

c. Cs: 67.1 ± 12.1; Pts: 69.4 ± 13.6

d. Female Cs: 49 (69%); female Pts: 22 (31%)

Control group (CG)

b. n = 84 (54%)

c. Cs: 69.5 ± 10.5; Pts: 72.9 ± 10.1

d. Female Cs: 68 (81%); female Pts: 16 (19%)

2-arm parallel

group

(intervention/

control) RCT

a. Home/heart failure clinic

b. Nurse-led; with computer-based programme and written materials. Nurses were experienced HF nurses who received three days of theoretical training followed by individual and practical training on how to perform the intervention

c. Face-to-face

d. Patient and caregiver (spouse)

a. 12 weeks

b. 3 sessions

c. At 2, 6, and 12 weeks after hospital discharge

d. 60 min

a. Educational and psychosocial

b. Depression, HRQoL

24 months

Liljeroos, 2017, [41] Sweden

The same group as Liljeroos, 2014, focus on carer outcomes only (n = 155 dyads)

Partner caregiver

a. Advanced heart failure

Intervention Group (IG)

b. n = 71 (46%)

c. Cs: 67.1 ± 12.1

d. Female 49 (69%)

Control group (CG)

b. n = 84 (54%)

c. Cs: 69.5 ± 10.5

d. Female 68 (81%)

2-arm parallel

group

(intervention/

control) RCT

a. Heart failure clinic

b. Nurse-led; with computer-based programme and written materials. Nurses were experienced HF nurses who received 3 days of theoretical training followed by individual and practical training on how to perform the intervention

c. Face-to-face

d. Patient and caregiver (spouse)

a. 12 weeks

b. 3 sessions

c. At 2, 6, and 12 weeks after hospital discharge

d. 60 min

a. Educational and psychosocial

b. Caregiver strain

24 months

Sebern, 2012, [40] USA

Patient and family caregiver dyads (n = 9)

a. Advanced heart failure

Intervention group (IG)

b. n = 9 dyads (19 participants) (100%)

c. Cs: 61 ± 19; Pts: 80 ± 9.5

d. Female Cs: 10 (100%); female Pts: 5 (56%)

No control froup

1 group quasi-experimental design

a. Home

b. PhD and master’s-prepared nurses with clinical background in the management of HF

c. Face-to-face — one-on-one and dyadic intervention for care partners managing HF. Care partners were also given copies of all worksheets and educational

materials used with the SCDI

d. Patient and caregiver

a. 12 weeks

b. 7 sessions

c. Weekly

d. 60–120 min

a. Structured intervention

b. Anxiety, depression, HRQoL

Post intervention