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Measuring the impact of informal elderly caregiving: a systematic review of tools
Authors:
Mosquera, I., Vergara, I., Larranaga, I., Machon, M., del Rio, M., and Calderon, C.
Abstract:
PURPOSE: To classify and identify the main characteristics of the tools used in practice to assess the impact of elderly caregiving on the informal carers' life. METHODS: A systematic review of literature was performed searching in Embase, MEDLINE, PsycINFO, CINAHL, IBECS, LILACS, SiiS, SSCI and Cochrane Library from 2009 to 2013 in English, Spanish, Portuguese and French, and in reference lists of included papers. RESULTS: The review included 79 studies, among them several in languages other than English. Their inclusion increased the variety of identified tools to measure this impact (n = 93) and allowed a wider analysis of their geographical use. While confirming their overlapping nature, instruments were classified according to the degree of integration of dimensions they evaluated and their specificity to the caregiving process: caregiver burden (n = 20), quality of life and well-being (n = 11), management and coping (n = 21), emotional and mental health (n = 29), psychosocial impact (n = 10), physical health and healthy habits (n = 2), and other measures. A high use in practice of tools not validated yet and not caregiver-specific was identified. CONCLUSIONS: The great variety and characteristics of instruments identified in this review confirm the complexity and multidimensionality of the effects of elderly caregiving on the informal carer's life and explain the difficulties to assess these effects in practice. According to the classification provided, caregiver burden and emotional and mental health are the most evaluated dimensions. However, further work is required to develop integrated and caregiving focused procedures that can appraise this complexity across different countries and cultures.
DOI:
10.1007/s11136-015-1159-4
URL:
http://download.springer.com/static/pdf/924/art%253A10.1007%252Fs11136-015-1159-4.pdf?originUrl=http%3A%2F%2Flink.springer.com%2Farticle%2F10.1007%2Fs11136-015-1159-4&token2=exp=1479239545~acl=%2Fstatic%2Fpdf%2F924%2Fart%25253A10.1007%25252Fs11136-015-1159-4.pdf%3ForiginUrl%3Dhttp%253A%252F%252Flink.springer.com%252Farticle%252F10.1007%252Fs11136-015-1159-4*~hmac=22e11768d94ed6650e77e4dd341ee219fe5a3391e3ba96513c7e2587f2e015e3
Journal:
Qual Life Res
issn:
1573-2649 (Electronic); 0962-9343 (Linking)
Publication year:
2016
pages:
1059-92
Symptom status:
Cognitive/mental state
Functional status:
Cognitive/mental functioning
General health perceptions / HRQoL:
Health-related quality of life
Overall quality of life:
Overall quality of life
Age:
Adults (18-65)
Disease:
Codes for special purposes
PRO / non-PRO:
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
Instrument:
Abbreviated Assessment of the Caregiver's Coping Antonovsky's Sense of Coherence BACS - Beliefs about Caregiving Scale BAI - Beck Anxiety Inventory (versions: BAI-Youth) BDI - Beck Depression Inventory (versions: mBDI; BDI-Y; BDI-SF) BRAS - Bradburn Revised Affect Scale BSI - Brief Symptom Inventory (versions: BSI-6; BSI-18; BSI-53) CADI - Carer's Assessment of Difficulties Index Camberwell Family Interview Schedule CAMI - Caregivers' Assessment Management Index Caregiver Activity Survey Caregiver Multidomain Self-efficacy Caregiving Family Profile Questionnaire CASI - Caregiver Assessment Satisfaction Index CBI - Caregiver Burden Inventory CBQ - Caregiver Burden Questionnaire CBS - Caregiver Burden Scale (also: Caregiving Burden Scale) (versions: CBS-M; CBS-E) CES-D - Centre for Epidemiologic Studies-Depression Scale (versions: CES-D-R; CES-D-8; CES-D 9; CES-D-10; CES-D-11; CES-D-13; CES-D-15; CES-D-20; CES-D-Children; CES-D-SF; CES-D m) COPE - Carers of older people in Europe index CQOL - Quality of Life in Alzheimer's Disease, caregiver version CRA - Caregiver Reaction Assessment CRI - Coping Responses Inventory CSI - Caregiver Strain Index (versions: MCSI-1;MCSI-2; CSI expanded ) CVLT - California Verbal Learning Test (versions: CVLT-C; CVLT-II edition; CVLT-I - Intrusions) DAS - Dyadic Adjustment Scale (versions: RDAS - Revised DAS) DCNA - Dementia Care Needs Assessment Deciding on Preferences Duke-UNC Functional Social Support Questionnaire Dysfunctional Attitude Scale Dysfunctional Thoughts About Caregiving Questionnaire ECR - Elderly Caregiver Family Relationship ENES - Eysenk Neuroticism & Extroversion Scale EQ-5D - EuroQoL-5 Dimensions (versions: EQ5D-VAS; Patient-Reported Health Score; EQ-5D-Pso - EQ-5D-Psoriasis) FACES II - Family Adaptability and Cohesion Evaluation Scales II (versions: FACES III; FACES IV) Family Caregiver Conflict scale Family Caregiver Self-Efficacy Questionnaire Family Conflict Scale GAIN - Gain in Alzheimer's Care Instrument GDS - Geriatric Depression Scale (versions: GDS-SF; GDS-5; GDS-15; GDS-30; GDS-12 R - GDS-12 Recidential) GHQ - General Health Questionnaire (versions: original = GHQ-60; GHQ-7; GHQ-12; GHQ-20; GHQ-28; GHQW-30; GHQ-36) Goldberg's anxiety and depression scales HADS - Hospital Anxiety and Depression Scale HDLF - Health and Daily Living Form HDRS - Hamilton Depression Rating Scale [ZIE: HAM-D] Ilfeld-PSI - Ilfeld Psychiatric Symptom Inventory ISSB - Inventory of Socially Supportive Behaviors Knowledge of Services Scale Lawton Subjective Burden Instrument LSI - Life Satisfaction Index LSNS - Lubben Social Network Scale (versions: LSNS-10; Abbreviated-LSNS; LSNS-R) Marital Needs Satisfaction Scale MBPC - Memory and Behavior Problems Checklist (versions: RMBPC; MBPC-1990R) MIPS - Millon Index of Personality Styles NEO-PI - NEO-Personality Inventory (versions; NEO-PI-R) NHP - Nottingham Health Profile NPI - Neuropsychiatric inventory (versions: NPI-Anxiety; NPIa - NPI-apathy; NPIa-Q - NPIa brief version; NPI-C - NPI-Clinician; NPI-Q - NPI-brief version; NPI-NH - NPI-Nursing Homes; NPI-CDS - NPI-Caregiver Distress Scale) PAC - Positive Aspects of Caregiving Pearlin's Overload Scale Pearlin's Role Captivity Scale Perceived Change Index PHQ - Patient Health Questionnaire (versions: PHQ-2; PHQ-4; PHQ-8; PHQ-9; PHQ-9 short; aPHQ-9; PHQ-A; PHQ-22; PHQ-8; PHQ-15) POMS - Profile of Mood States (versions: POMS-11; POMS-14; POMS-37; POMS-65; Brief POMS; POMS-Adolescent; POMS-sf; revised POMS; POMS-F - POMS-fatigue; POMS-Bi - POMS-Bipolar) Preparedness for Caregiving PSI-II - Personal Style Inventory II PSQI - Pittsburgh Sleep Quality Index PSS - Perceived Stress Scale (versions: PSS-4; PSS-10; PSS-14; PSS Among People Livng with HIV or AIDS) QLI - Quality of Life Index [alias: Ferrans and Powers Quality of Life Index] (versions: QLI-III; QLI-D - QLI-Dialysis; QLI-CV - QLI-Cancer Version; QLI-Cardiac Version; QLI-WV - QLI Wound version) Relative's Stress Scale Revised Scale for Caregiving Self-Efficacy Role-Based Performance Scale Role Overload Scale Ruiz & Baca's Questionnaire Scale of Well-being SCB - Screen for Caregiver Burden (versions: SCB-SF) SCQ - Sense of Competence Questionnaire (versions: Short Form) SDI - Sleep Disorders Inventory SDS - Zung Self-rating Depression Scale (also: ZSDS ; versions: mZSDS) SES - Self-efficacy Scale (versions: CSES - Child SES) SF-36 - 36-item Short Form Health Survey [alias: RAND-36][alias: MOS SF-36]] (versions: VSF-36 LoA - Visual Version of the SF-36 Limitations of Physical Activities domain; VR-36 - Veterans SF-36) database.cosmin.nl SOC-3-UTHS - University of Tokyo Health Sociology version of Sense of Coherence Scale SQ - Symptom Questionnaire SRQ - Self-Report Questionnaire STAI - State-Trait Anxiety Inventory (versions: STAI-X - STAI Form X; STAI-Y - STAI Form Y; STAI sf; STAI-4; STAI-6) SWBS - JAREL Spiritual Well-Being Scale Task Management Strategy Index WCQ - Ways of Coping Questionnaire (versions: WCQ-M) WHOQOL-BREF - World Health Organization Quality of Life questionnaire–Abbreviated Questionnaire (versions: WHOQOL-HIV-BREF; WHOQOL-BREF dialysis) ZBI - Zarit Burden Inventory/interview (also Zarit Caregiver Burden Inventory) (versions: ZBI-4; ZBI-12; ZBI-22; ZBI-SF)
