| Literature DB >> 34946416 |
Elena Cejalvo1, Manuel Martí-Vilar1, César Merino-Soto2, Marivel Teresa Aguirre-Morales3.
Abstract
Taking care of a person with a physical disability can become a challenge for caregivers as they must combine the task of caring with their personal and daily needs. The aim of this study was to assess the impact that taking care of a person who needs support has on caregivers and to analyze certain characteristics they present, such as self-esteem and resilience. To that end, a bibliographic review was carried out from 1985, when the first article of taking care of a person who needs support was published, to 2020 (inclusive), in the databases of Web of Science (WoS), Scopus, Pubmed, Eric, Psycinfo, and Embase. The search yielded a total of (n = 37) articles subject to review, following the guidelines established in the PRISMA declaration. The results show that caregiving was highly overburdening and negatively affected the physical condition and the psychological and mental states of caregivers. In addition, certain psychological characteristics present in caregivers such as having high self-esteem and being resilient were found to act as protective factors against the caregiving burden.Entities:
Keywords: caregivers; physical disability; psychological characteristics; systematic review
Year: 2021 PMID: 34946416 PMCID: PMC8700856 DOI: 10.3390/healthcare9121690
Source DB: PubMed Journal: Healthcare (Basel) ISSN: 2227-9032
Figure 1Flowchart according to PRISMA.
Synthesis of results.
| Study Number | Country | Physical Disability | Type of Sample | Instruments | Type of Caregiver | Distribution by Sex | Age | Employment Status | Variables Present | Biases in | Other Important Considerations of | Limitations |
|---|---|---|---|---|---|---|---|---|---|---|---|---|
| 1. [ | USA | Physical disability | Adults | Nordic Musculoskeletal Questionnaire (α = 0.816) | Informal | Women (89.1%) | 30–89 | NR | Emotional stress | NR | Musculoskeletal discomfort (MSD) associated with care activities | Some influences on the physical difficulties experienced by caregivers may not have been addressed |
| 2. [ | USA | Physical disability | NR | BRFSS telephone survey (2009) | Informal | Women (27.2%) | 18–64/65 or over | Unemployed (24.8%) | Physical distress | NR | Older caregivers reported fair or poor self-rated health and more frequent physical distress | Lack of data on patients and amount of time spent on care |
| 3. [ | Japan | Type 1 myotonic dystrophy | Adults | SF-36 | Informal | Women | NR | NR | Anxiety | NR | Being female is associated with higher burden of care | NR |
| 4. [ | USA | All types of disabilities, including physical disability | NR | NR | Informal | NR | Middle age | Autonomous, farmers, or unskilled workers | Depression | NR | Social burden | Data may be biased |
| 5. [ | Spain | Parkinson’s disease | Adults | NR | Informal | NR | NR | NR | Good caregiver–patient relationship | NR | Caregiver quality influenced by the presence of depression in patients and symptomatology | Most interventions are aimed at the caregiver and the patient, it is difficult to separate the benefits |
| 6. [ | Saudi Arabia | Chronic diseases and/or disabilities (including physical) | Elderly | ZBI | Informal | Women (52.7%) | 18 or over | Unemployed (54.6%) | Moderate burden associated with care | NR | Musculoskeletal problems | The study was only carried out in Riyadh |
| 7. [ | USA | Juvenile idiopathic arthritis | Young people | Beck Depression Inventory (α = 0.83) | Informal | NR | NR | NR | Depression | NR | Family conflicts are related to mental, health, and quality of life deterioration of caregivers and children | There is a need to include measures that address parental strengths and more research on the relationship between family functioning and child well-being |
| 8. [ | Spain | Musculoskeletal diseases | Adults | The speech carried out by the discussion group was transcribed and analyzed | Informal | G1 men ( | 31–65 | NR | Social isolation | NR | Loss of purchasing power | Type of diseases not specified |
| 9. [ | Canada | Physical disability | Elderly | SF-36 | Informal | Most were women | Spouses (AA = 74.8), not relatives (AA = 62.7), sons, and daughters (AA = 49.7) | NR | Worse mental health status when patients had depression | NR | Female caregivers had worse physical function than male caregivers | Small sample size |
| 10. [ | USA | Traumatic spinal cord injury | All ages | Functional Independence Measure (FIM) (α = 0.94). | Informal | 20 men (15.6%) | AA = 40.8 | Unemployed | The greater the resilience, the less anxiety, health problems, and negative affect | NR | The resilient group had greater social support | Certain characteristics such as ethnicity or income of caregivers were not taken into account |
| 11. [ | Sweden | Physical disability | Adults | Joint and semi-structured interviews with couples | Informal | NR | 60–83 | NR | Caregiving perceived as freedom generates a higher degree of satisfaction with care and with one’s own life | Losses | When caregiving is perceived as freedom, mutual help and formal support were positively valued | It was limited to couples with physical disabilities |
| 12. [ | Netherlands | Duchenne muscular dystrophy | Young people | Caregiver Stress Index (CSI) | Informal | NR | AA = 57 | NR | Reduced well-being due to lack of free time and continuous care | Losses | Parents who care for their children experience substantial burden, but they value care in a positive and rewarding way | Selection bias |
| 13. [ | Saudi Arabia | Physical disability | Adults | GHQ-28 | Formal | Most were women | AA = 33.46 ± 5.29 | Healthcare workers | Prevalence of somatic disorder 2%, anxiety disorder 3%, depression 1%, stress 8% | NR | Female caregivers had a higher prevalence of depression | Very small sample size |
| 14. [ | India | Physical disability | Elderly | ZBI | Informal | Women | AA = 45.4 ± 15.7 | Unemployed (12.1%) | The presence of disability in the person receiving care is related to a greater burden on the main caregiver | NR | People with physical disabilities and sensory problems generate a greater burden on caregivers | Small sample size |
| 15. [ | Switzerland | Spinal cord injury | Young people | ZBI-S | Informal | Women (72.9%) | AA = 50 | NR | Quality of intimate relationships reduces stress and burden | Insignificant | Caregivers who receive support from professionals have greater feelings of satisfaction with care | Small sample size |
| 16. | Spain | Multiple sclerosis | Adults | Kurtzke Expanded Disability Status Scale (EDSS) | Informal | NR | NR | NR | Emotional burden | NR | Influence on occupational status | NR |
| 17. | Israel | Physical disability | All ages | CES-D | Informal | Women | 45–64 | Most were employed | Caregivers of a child or spouse suffer greater burden and a higher level of depressive mood compared to those who care for their parents | NR | Caregivers who are in charge of a child or spouse perceive worse health than those who take care of their parents | Measures such as coping strategies were not studied |
| 18. | USA | Physical and mental disability | Elderly | Subjective perception of self-reported health (α = NR) | Informal | Women (65.4%) | AA = 53.12 | NR | High levels of tension and low levels of well-being | NR | Caregivers who provided long-term care showed greater conflict between family and work | The sample was collected in 1992, so the population and the characteristics of the caregivers have changed |
| 19. | USA | Functional diversity | Adults | ADLs | Informal | Women | 65 and over | NR | Wives reported lower care-related quality of life | NR | Older caregivers and those who perceived greater burden reported a reduction in certain tasks that they rated positively | Since it is a cross-sectional design, causal relationships cannot be detected |
| 20. | Malaysia | Physical disability | Young people | Caregiver Needs Screen (CNS) | Informal | NR | NR | NR | Caregivers whose children | NR | The younger the children, the more needs expressed by caregivers | Cultural factors may have affected responses |
| 21. [ | Turkey | Orthopedic disability | Adults | Spinal Cord Independence Measure III (SCIM III) (α = 0.93) | Informal | Women 114 (70.81%) | AA = 44.07 | Unemployed 114 (70.81%) | Caregivers with support networks had fewer depressive symptoms | NR | A hostile attitude or lack of warmth in the caregiver–patient interaction generated negatively charged family environments | Since it is a cross-sectional design, causal relationships cannot be detected |
| 22. [ | Australia | Physical disability | All ages | Short Form Health Survey (SF-36) | Informal | Women (85%) | 21–86 | NR | Self-reported mental and physical health below Australian population | NR | Men had better self-reported health than women | Certain factors were not taken into account, such as the length of time the caregiver provides care or the stage of the disease in which the cared for person is in |
| 23. [ | Norway | Severe physical disability | Adults | Subjective well-being (SWB) | Informal | NR | 20 and over | NR | High psychological distress | NR | Women are more likely to suffer from depressive symptoms. However, Norway is considered one of the most gender-equal countries in the world. | There is no information on the duration of the partners and whether the partner is the main caregiver |
| 24. [ | Italy | Multiple sclerosis | Adults | CMDI | Informal | NR | NR | Full-time (47%) | Low mental health | NR | People with this disease have worse mental health scores and depressive symptoms | The survey was carried out by mail, the response rate of the control groups was very low |
| 25. [ | USA | Multiple sclerosis | Adults | Short Form Health Survey (SF-8) | Informal | Men (100%) | AA = 60.7 | NR | Caregiver burden related to the number of hours of care | NR | Caregiving has a great impact on the performance of certain tasks of daily life | Self-selection bias |
| 26. [ | UK | Multiple sclerosis | Adults | NR | Informal | NR | NR | NR | Low quality of life associated with factors such as duration and frequency of care | NR | Deficits in the physical health of caregivers | Small sample size |
| 27. [ | USA | Physical disability | Young people | NR | Informal | Most were women | NR | Unemployed ( | Elderly caregivers are very likely to suffer from stress and symptoms of depression | NR | In this study, a white matter pathology was observed as a result of the stress associated with care | Difficulty in generalizing results to younger caregivers |
| 28. [ | UK | Spinal cord injury | Adults | Inventory to Diagnose Depression (IDD) | Informal | Women | Women AA = 41.8 | Unemployed | An impulsive problem-solving tendency negatively affects the family nucleus and acceptance of the disease | NR | Caregivers’ personal and leisure time is sacrificed due to caring | Small sample size |
| 29. [ | Spain | Multiple sclerosis | All ages | Short Form Health Survey (SF-36) | Informal | Women | AA = 50.1 +/− 12.6 | Employee 144 (51.8%) | The main predictors of caregiver burden were emotional factors and the person’s degree of disability | NR | Most of the caregivers were women due to cultural characteristics | The data were collected at a particular point in time, so it is not known whether the factors that explain the variance would be maintained over time |
| 30. [ | Australia | Rett syndrome | Young people | SF-12 (physical dimension α = 0.63 and mental dimension α = 0.72) | Informal | Women 100% | 21–60 | Full-time 63 (47.4%) | Perceived social support mediated the relationship between children’s functional status and depressive symptoms | NR | Mothers taking care of a child with a disability show more adverse physical and mental health outcomes | Mothers’ mental and physical health was unknown prior to the birth of their child |
| 31. [ | USA | Chronic physical illnesses | Adults | Caregiver Quality of Life Index (α = NR) | Informal | NR | 21 and over | NR | Women more likely to be depressed | NR | Primary stressors: the deterioration of the patient, the dependence that the patient required in the activities of daily living, the recurrence of the disease, or the problematic behaviors that the caregiver might present. These factors were related to a reduction in the caregiver’s quality of life. | NR |
| 32. [ | Asia | Physical and mental disability | Elderly | In-depth interviews | Formal and informal | Women 59 | 20–72 | NR | Failure to ask others for help affected health and well-being | NR | The main support of the caregivers was the family members themselves | NR |
| 33. [ | USA | Chronic diseases, including physical disability | Adults | NR | Informal | NR | NR | NR | Physical and psychological health consequences for caregivers | NR | High objective burden associated with care | NR |
| 34. [ | Netherlands | Rheumatic diseases | NR | Zarit Caregiver Burden Interview (α = 0.88) | Informal | Women | AA = 52 | NR | Severe burden related to the care of people suffering from rheumatic diseases | NR | Social support as a protective factor against the disease and the work carried out by caregivers | NR |
| 35. [ | USA | Multiple sclerosis | Adults | Mobility subscale (α = NR) | Informal | Women | AA = 51.6 | NR | Depressive symptoms in minor caregivers when they perceived social support | NR | The greater the severity of the disease, the worse the well-being of caregivers | The type and quality of perceived social support were not objectively assessed |
| 36. [ | USA | Spinal cord injury | All ages | Social Problem-Solving Inventory-Revised (SPSI-R) | Informal | Women | AA = 46 | NR | The more severe the injury, the greater the emotional distress | NR | Poor problem-solving skills, predictors of poorer psychological adjustment of caregivers | Since it is a cross-sectional design, causal relationships cannot be detected |
| 37. [ | Switzerland | Spinal cord injury | Adults | Job Content Questionnaire (JCQ) | Informal | Most were women | NR | Employee | High care control related to improved caregiver well-being and reduced negative affectivity | NR | Caregivers showed greater positive affect when they observed that people with the injury had good work control | Small sample size |
NR = not reported. AA = average age.
Summary of selected articles.
| Main Characteristics |
| % | Studies |
|---|---|---|---|
| Type of caregivers | |||
| Formal caregivers | 2 | 5.40% | 13, 32. |
| Informal caregivers | 35 | 94.60% | 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 14, 15, 16, 17, 18, 19, 20, 21, 22, 23, 24, 25, 26, 27, 28, 29, 30, 31, 33, 34, 35, 36, 37. |
| Sample type (people receiving care) | |||
| Young people | 6 | 16.22% | 7, 12, 15, 20, 27, 30. |
| Adults | 18 | 48.65% | 1, 3, 5, 8, 11, 13, 16, 19, 21, 23, 24, 25, 26, 28, 31, 33, 35, 37. |
| Elderly | 5 | 13.51% | 6, 9, 14, 18, 32. |
| All ages | 5 | 13.51% | 10, 17, 22, 29, 36. |
| NR | 3 | 8.11% | 2, 4, 34. |
| Distribution by sex (caregivers) | |||
| Men | 1 | 2.70% | 25 |
| Women | 5 | 13.51% | 9, 17, 27, 30, 37. |
| Both | 19 | 51.35% | 1, 2, 3, 6, 8, 10, 13, 14, 15, 18, 19, 21, 22, 28, 29, 32, 34, 35, 36. |
| NR | 12 | 32.43% | 4, 5, 7, 11, 12, 16, 20, 23, 24, 26, 31, 33. |
| Type of design | |||
| Cross-sectional | 21 | 56.76% | 5, 6, 11, 12, 13, 14, 15, 17, 18, 19, 20, 21, 22, 23, 25, 27, 29, 34, 35, 36. |
| Longitudinal | 8 | 21.62% | 3, 9, 10, 16, 24, 28, 30, 17. |
| NR | 8 | 21.62% | 1, 2, 4, 7, 26, 31, 32, 33 |
| Sampling strategies | |||
| Probabilistic | 6 | 16.21% | 6 (SS), 9 (SRS), 24 (SRS), 19 (SS), 20 (SS), 22 (SS) |
| Non-probabilistic | 9 | 24.32% | 1 (CS), 2 (QS), 3 (QS), 8 (QS), 11 (SBS), 12 (SBS), 13 (CS), 15 (QS), 16 (QS) |
| NR | 22 | 59.46% | 4, 5, 7, 10, 14, 17, 18, 21, 23, 25, 26, 27, 28, 29, 30, 31, 32, 33, 34, 35, 36, 37 |
| Type of approach | |||
| Quantitative | 5 | 13.51% | 3, 6, 21, 27, 29 |
| Qualitative | 4 | 10.81% | 8, 11, 32, 35 |
| Mixed | 4 | 10.81% | 1, 7, 16, 37 |
| NR | 24 | 64.86% | 2, 4, 5, 9, 10, 12, 13, 14, 15, 17, 18, 19, 20, 22, 23, 24, 25, 26, 28, 30.31, 33, 34, 36 |
SS (stratified sampling); SRS (simple random sampling); CS (convenience sampling); QS (quota sampling); SBS (snowball sampling); NR (not reported).