Table 3.
Caring and psychological health
| Authors | No. of carers | Population involved in the study | Carer definition | Demographic details (1) mean age (years) (2) female (%) (3) spouses (%) (4) in employment (%) (5) mean patient dialysis duration (years) (6) mean length of caring (years) | Country of origin | Study design | Outcome (carer) (a) psychological morbidity (b) psychological (others) (c) ‘carer burden’ (d) quality of life (e) social support (f) patient outcomes (g) miscellaneous | Main findings |
|---|---|---|---|---|---|---|---|---|
| Alvarez-Ude et al. [46] | 221 | HD and PD carers and patients | Family member identified as mainly responsible for looking after the patient and most closely involved in their care | (1) 57 (2) 77 (4) 34 (6) 5 (3), (5) not reported | Spain | Cross-sectional, quantitative | (c) ZBI (d) SF-36 (e) DFSS (f) BI (functioning) (a), (b), (g) N/A | Carers’ mental health was worse in those with lower social support, higher subjective ‘burden’ of work on those caring for patients with poor mental health. |
| Asti et al. [49] | 65 | CAPD carers and patients | Not defined | (1) 44 (2) 82 (3), (4), (5), (6) not reported | Turkey | Cross-sectional, quantitative | (a) revised UCLALS, BDI (e) PSSFFS (b), (c), (d), (f), (g) N/A | Most carers were not depressed and had high levels of perceived social support. Depression was inversely associated with the level of perceived family social support. |
| Belasco et al. [57] | 201 | In-centre HD and home PD carers | Person mainly responsible for both looking after patient during course of disease and caring for them | (1) 42—58 (2) 80 (4) 32 (5) 1.8–3.8 (6) 1.5–3.9 (3) not reported | Brazil | Cross-sectional | (a) CBS (d) SF-36 (e) CID (f) KPS (b), (c), (g) N/A | PD carers had worse mental health than HD carers. Carers of younger patients had potentially poorer access to transport and health services. Burden for PD carers associated with their mental composite scores (SF-36), whereas burden for HD carers associated with vitality, pain and social aspect. |
| Belasco and Sesso [50] | 100 | HD carers and patients | Person responsible for looking after the patient during the course of the disease and most closely involved in caring for the patient for a period of >3 months | (1) 47 (2) 84 (3) 49 (4) 34 (5) 2.8 (6) 2.5 (median) | Brazil | Cross-sectional, quantitative | (c) CBS (d) SF-36 (a), (b), (e), (f), (g) N/A | ‘Carer burden’ correlated with the number of patient comorbidities and the length of time spent as carers. Perceived ‘carer burden’ was explained by carers’ mental health, patient vitality, relationship type and carer pain. |
| Binik et al. [56] | 89 | Pre-dialysis, HD and post-transplant spouses | Not defined | (3) 100 (1), (2), (4), (5), (6) not reported | Canada | Cross-sectional, quantitative | (a) GSI, ABS, SEI (b) MRQ, KDS-15 (marital role strain), L-WMAT (marital adjustment) (c) self-construct (objective and perceived intrusiveness) (d), (e), (f), (g) N/A | Perceived intrusiveness of ESKD significantly associated with greater ‘marital role’ strain, poorer marital adjustment and decreased individual well-being of both the spouse and the patient. Increased symptoms of psychopathology significantly associated with perceived intrusiveness into marital and non-marital aspects of life and increased marital strain. |
| Blogg et al. [53] | 61 | Home HD carers | Person who cares for a patient at home | (1) 45–49 (2) 69 (3) 93 (5) 3.5 (4), (6) not reported | Australia | Cross-sectional, quantitative | (a) GHQ-28 (c) RSS (b, (d), (e), (f), (g) N/A | Main variables associated with carer distress were younger age (<45 years) and having a low involvement in the dialysis procedure Other associated variables include no prior experience of the dialysis process and high involvement levels in a rural setting. |
| Courts [47] | 14 | HD partners and patients | Not defined | (1) 47 (median) (2) 93 (3) 71 (4), (5), (6) not reported | USA | Cross-sectional, quantitative and qualitative | (a) CAS, STAI, GCS (b) PAIS-SR (psycho-social adjustment), HSS (HD stressor) (c) CBS (d) SF-36 (g) description of HD experience (interview) (e), (f) N/A | Most home dialysis partners had little psychological distress. However, partners perceived home HD to be stressful but preferred HD at home. |
| Daneker et al. [55] | 55 | HD carers and patients | Not defined | (1) 52 (2) 76 (4) 34 (5) 2.9 (3), (6) not reported | USA | Cross-sectional, quantitative | (a) BDI, CBI (b) JCS (coping); DAS, DAS-S (marital adjustment) (d) QoLI (e) MSPSS (f) KPS (functioning), ESRDSC (comorbidity) (c), (g) N/A | Spousal depression inversely correlated with their marital dissatisfaction but correlated with patient depression. Spouses’ perceived social support inversely related to both spousal depression and spousal marital dissatisfaction. Spouses’ psychosocial variables not correlated with patients’ disease severity. |
| Dunn et al. [54] | 38 | CAPD spouses | Not defined | (1) 58 (2) 58 (3) 100 (5) 2.6 (4), (6) not reported | USA | Cross-sectional, quantitative | (b) JCS (coping); DAS (marital adjustment) (d) QoLI (f) ESRDSI (disease severity) (a), (c), (e), (g) N/A | QoL influenced by marital adjustment and income. Emotional coping was negatively correlated with marital adjustment but positively correlated with years on dialysis. |
| Ferrario et al. [51] | 50 | Carers and patients | The main person responsible for patient care outside the hospital | (1) 54 (2) 80 (3) 70 (4) 26 (5) 4.7 (6) not reported | Italy | Cross-sectional, quantitative | (a) STAI; DQ (b) EPQ (personality) (c) FSQ (f) SWLS (life satisfaction) (d), (e), (g) N/A | Carers’ sense of burden and satisfaction correlated with their neuroticism, anxiety and depression. |
| Harris et al. [48] | 78 | Transplant family members | Person identified as providing assistance to patient who is unable to self-care | (1) 21–88 (2) 76 (3) 53 (4) 70 (5) 2.3 (6) not reported | USA | Cross-sectional, quantitative | (c) ZBI (a), (b), (d), (e), (f), (g) N/A | Most carers reported little ‘burden’. Both personal strain and role strain were lowest in carers with patients who were independent in ADL. |
| Piira et al. [52] | 38 | HD and PD carers and patients | Person who plays a significant role in the dialysis process and in caring for the patient | (1) 54 (2) 56 (3) 68 (5) 2 (4), (6) not reported | Australia | Cross-sectional, quantitative | (a) DASS (b) JCS (coping); LCB (f) ESRDSI (comorbidity), SIP (functioning) (c), (d), (e), (g) N/A | Carers’ psychological morbidity was positively associated with the use of external locus of control and emotion-focused coping strategies. |
| Rideout et al. [40] | 40 | CAPD spouses and patients | Not defined | (1) 51 (2) 65 (3) 100 (5) 0.2 (4), (6) not reported | Canada | Cross-sectional, quantitative | (a) CES-D (b) IFS (family impact); DAS, DAS-S (marital adjustment) (e) PSS (f) SIP (functioning) (c), (d), (g) N/A | Whilst most spouses were not depressed, the lack of perceived social support from their ill partner and social/financial changes were major significant predictors of spouse depression. |
ABS = Affect Balance Scale; BDI = Beck Depression Inventory; BI = Barthel Index; CAPD = Continuous Ambulatory Peritoneal Dialysis; CAS = Clinical Anxiety Scale; CBI = Caregivers Burden Interview; CBS = Caregiver Burden Scale; CES-D = Center for Epidemiologic Studies Depression Scale; CID = Cognitive Index of Depression; DAS = Dyadic Adjustment Scale; DAS-S = Dyadic Satisfaction Sub-scale; DASS = Depression, Anxiety and Stressor Scale; DFSS = Duke-UNC Functional Social Support Questionnaire; DQ = Depression Questionnaire; EPQ = Eysenck Personality Questionnaire; ESRDSI = End-Stage Renal Disease Severity Index; ESRDSC = End-Stage Renal Disease Severity Coefficient; FSQ = Family Strain Questionnaire; GCS = Generalized Contentment Scale; GHQ-28 = General Health Questionnaire 28; GSI = Global Symptom Index; HD = haemodialysis; HSS = Haemodialysis Stressor Scale; IFS = Impact on Family Scale; JCS = Jalowiec Coping Scale; KPS = Karnofsky Performance Status Scale; LCB = locus of control of behaviour; L-WMAT = Locke–Wallace Marital Adjustment Test; MRQ = Marital Role Questionnaire; MSPSS = Multidimensional Scale of Perceived Social Support; PAIS-SR = Psychosocial Adjustment to Illness Scale—Self Report; PD = peritoneal dialysis; PSS = Perceived Social Support Scale; PSSFFS = Perceived Social Support for Friends and Family Scale; QoLI = Quality of Life Index; RSS = Relatives’ Stress Scale; SEI = Self Esteem Inventory; SF-36 = Short-Form 36; SIP = Sickness Inventory Profile; STAI = State Trait Anxiety Inventory; SWLS = Satisfaction with Life Scale; UCLALS = UCLA Loneliness; ZBI = Zarit Burden Interview.