Subjective burden in home care

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The subjective stress in home care is the stress perceived by the caregiving relatives due to the care situation. The subjective burden is one of the most important predictors of negative effects of the care situation, both for the caring relatives themselves and for those in need of care .

Caregiving relatives are all people who are not gainfully employed but who help a person with regular care needs for personal reasons. This means any kind of help and support, even if it is not care in the narrower sense. The caregiver does not have to be related to the person they are supporting. Help among friends, acquaintances or neighbors is also included.

theory

From a scientific perspective, the subjective load is a theoretical construct . The conceptual basis is the Lazarus stress model . The subjective assessment of the care situation as a stressor by the caring relatives is decisive in the creation and maintenance of the subjective burden.

According to Lazarus' stress model, a primary assessment of the stressful situation takes place, in which the individual importance of the specific stressor, in this case the home care situation, is assessed. In a secondary assessment, one's own abilities and resources that can be used to cope with the stressful situation are analyzed. Building on this, personal strategies for coping with the situation are applied, which, according to Carver, can be emotion- or problem-oriented or dysfunctional. Studies have shown that high subjective stress is often associated with a dysfunctional strategy; H. with activities that do not solve the problem, but actually make it worse (e.g. self-criticism or substance abuse).

What consequences the respective care situation ultimately leads to is determined by the balance between stress and vulnerabilities on the one hand and the resources of the caring relatives on the other. Home care can therefore be associated with both positive and negative experiences. Regardless of the subjective burden, caring relatives can also experience their work as enriching. This can e.g. B. the feeling of being needed or the knowledge that you have acquired new skills.

Trigger for subjective stress

If the home care situation is experienced negatively, a subjective burden arises. Home care is typically provided by untrained relatives for whom this role is a significant requirement. An intensive discussion and the adaptation of one's own life to the care situation is inevitable.

The subjective burden can be based on a variety of aspects of the care situation, e.g. B. inadequate recreational opportunities due to living together in a common household, challenging behavior on the part of the person in need of care, restriction of gainful employment or the limitation of social activities and contacts. Four aspects have consistently been found to be particularly stressful in various studies:

  • Care takes a lot of strength
  • Desire for relaxation
  • too little time for your own interests
  • Sadness about the fate of the well-groomed person

Importance of the subjective burden

The negative effects of home care are often not caused by the care situation itself, but to a large extent by the subjective stress on the caring relatives. This makes the subjective stress one of the most important outcome variables of the home care process. All forms of relatives' intervention should have a positive influence on this.

Influence on health

In their meta-analysis from 2003, Pinquart and Sörensen examined the health of caring relatives in comparison to non-caring relatives on the basis of numerous individual studies.

With regard to physical health, the caring relatives were shown to have a rather minor impairment. In terms of mental health, however, there was a clear difference: caregivers were significantly more likely to report symptoms of depression than non-carers. Unfortunately, this meta-analysis does not take into account the influence of subjective stress.

In a further extensive meta-analysis, Pinquart and Sörensen were able to show that the subjective stress is a weighty predictor for the health of the caring relatives.

Mortality risk

Studies found an increased mortality of caring partners (spouses). However, this effect was only seen in those partners who felt stressed by the care situation. It is not home care itself that poses a risk, but rather the subjective burden.

In principle, i.e. without taking into account the subjective burden, caregiving relatives even have a slightly lower risk of dying overall.

Care style

The way in which the person in need of care is dealt with can range from loving devotion to "abusive behavior", which can manifest itself in neglect or abuse. Verbal aggressiveness is probably the most common form. When caring for a person with dementia, there is a higher risk of abusive behavior, primarily due to abnormal behavior. Studies show that this negative form of care style occurs mainly in subjectively stressed relatives.

Termination of home care

The subjective stress is an important factor that influences the further course of the care and determines whether and when the transfer to the nursing home takes place (institutionalization). Especially in people with dementia, the likelihood of challenging behaviors, subjective stress and thus the frequency of moving home is increased. There are consistent research results in the care of dementia patients in particular: the higher the subjective burden on the caring relatives, the more likely it is that they will move to a home.

Recording of subjective stress

The assessment of the subjective burden enables an adequate assessment of the relative's situation. The correct recording of the subjective stress is necessary in order to be able to make statements about the effectiveness of interventions by relatives.

The care situation is a very significant, highly specific stressor for the relatives that must be treated with equally specific interventions. A measurement with general stress scales is therefore not useful, because the stress in all areas of life is recorded in an undifferentiated manner. Valid, economical and internationally standardized measuring instruments for the special stressful situation of caring relatives are therefore essential.

In the Anglo-American area a number of stress scales have been developed; z. B. the Burden Interview, the Caregiver Strain Index and the Cost of Care Index. The Burden Scale for Family Caregivers, developed in Germany, is now available in 20 languages.

Burden Scale for Family Caregivers (BSFC)

The BFSC (German: Häusliche Pflege-Skala HPS) exists in a detailed original version with 28 items and in a short version (BFSC-s) as an efficient recording method with ten items.

The BSFC has two advantages over other stress scales. They are available in a long and a short version, each of which has been validated in separate studies. In addition, both versions are freely accessible in 20 languages ​​- including evaluation and interpretation instructions.

development

A first, reliable and valid version of the German version was published in 1993. In 2001, the validity of a large sample for dementia as well as other causes of the need for care was re-examined and confirmed. In 2003 the English version was validated. In 2014 the validation study for the short version was published and an extended validation of the original version was published.

scale

The BSFC consists of 28 items in the detailed version and ten items in the short version, which are to be assessed by the caring relatives on a four-point scale from “exactly correct” to “incorrectly”.

An evaluation is possible on the item level as well as on the sum level. With the evaluation at item level, it is possible to differentiate which aspects of home care are perceived as a burden. With the evaluation at the sum level, the subjective overall exposure can be measured, which in turn is used within research as an important characteristic of the care situation.

Interventions

Due to the high importance of the subjective burden of caregiving relatives with regard to the care process, it is necessary to develop measures to reduce this burden and to examine their effectiveness. Successful measures should be implemented across the board in order to be available for as many caring relatives as possible. "The utility of a measure is made up of the effectiveness multiplied by the use." Accordingly, it is necessary both to develop and improve interventions for relatives and to find ways to increase awareness and use of these interventions.

Requirements for support offers

Support offers for family carers should consider 4 central points:

  1. Information and training
  2. Professional support
  3. Effective communication
  4. Government and financial support

There are various offers of help, from counseling to relatives and self-help groups for emotional stabilization through to instrumental support (e.g. day care). Aid offers also include technical aids such as intelligent light to maintain the autonomy of those in need of care.

Another important relief is the support from family members, friends and acquaintances, who provide emotional and instrumental support and provide access to other offers of help.

Implications for strengthening and further developing family care

  1. Offers of support should be better known.
  2. The regional availability of the offers should be improved.
  3. Case management offers should be expanded in order to increase the effectiveness of relief concepts.
  4. Financing options for using the relief offers should be improved.
  5. The framework for home care should be further developed so that care and employment are compatible.
  6. Working conditions should be further developed in such a way that there are no disadvantages if family carers temporarily limit the scope of their employment or have to give them up completely at times.
  7. Language barriers should be reduced. Low-threshold, culture-specific offers can be upgraded with interculturally trained staff.
  8. Internet-based support offers should be expanded.
  9. There is a shortage of high-quality studies on the effects of relief offers. Evidence-based health services research should focus here.

Individual evidence

  1. ↑ RS Lazarus, S. Folkman: Stress, appraisal, and coping . Springer, New York 1984.
  2. ↑ CS Carver: You want to measure coping but your protocol's too long: Consider the brief COPE. In: International Journal of Behavioral Medicine. 1997, 4 (1), pp. 92-100.
  3. ↑ C. Cooper, C. Katona, M. Orrell, G. Livingston: Coping strategies, anxiety and depression in caregivers of people with alzheimer's disease. In: International Journal of Geriatric Psychiatry. 2008, 23 (9), pp. 929-936. doi: 10.1002 / gps.2007
  4. ^ VE Di Mattei, A. Prunas, L. Novella, A. Marcone, SF Cappa, L. Sarno: The burden of distress in caregivers of elderly demented patients and its relationship with coping strategies. In: Neurological Sciences. 2008, 29 (6), pp. 383-389. doi: 10.1007 / s10072-008-1047-6
  5. ^ A b c d E. Gräßel, R. Adabbo: Perceived burden of informal caregivers of a chronically ill older family member: Burden in the context of the transactional stress model of Lazarus and Folkman. In: Journal of Gerontopsychology and Geriatric Psychiatry. 2011, 24 (3), pp. 143-154.
  6. ↑ TM Liew, N. Luo, WY Ng, HL Chionh, J. Goh: Predicting gains in dementia caregiving. In: Dementia and Geriatric Cognitive Disorders , 29 (2), 2010, pp. 115-122, PMID 20150732 , doi: 10.1159 / 000275569
  7. ↑ AM Baronet: The impact of family relations on caregivers' positive and negative appraisal of their caregiving activities. In: Family Relations , 52 (2), 2003, pp. 137-142, doi: 10.1111 / j.1741-3729.2003.00137.x
  8. ^ E. Gräßel: Stress and health situation of the nursing staff. Cross-sectional study of home care in the case of chronic need for assistance or care in old age. Hänsel-Hohenhausen, Egelsbach / Frankfurt am Main / Washington 1997.
  9. ↑ E. Gräßel: Subjective stress and its effects on caring relatives of a dementia patient - need for relief. In: G. Stoppe, G. Stiens (Ed.): Low-threshold care for people with dementia. Basics and teaching materials. 2009, pp. 42-47.
  10. ↑ M. Grossfeld-Schmitz, C. Donath, R. Holle, J. Lauterberg, S. Ruckdaeschel, H. Mehlig, P. Marx, S. Wunder, E. Gräßel: Counselors contact dementia caregivers - predictors of utilization in a longitudinal study. In: BMC Geriatrics. 2010, 10, p. 24.
  11. ↑ S. Sorensen, M. Pinquart, P. Duberstein: How effective are interventions with caregivers? An updated meta-analysis. In: The Gerontologist. 2002, 43 (3), pp. 356-372.
  12. ↑ M. Pinquart, S. Sorensen: Differences between caregivers and noncaregivers in psychological health and physical health: A meta-analysis. In: Psychology and Aging. 2003, 18 (2), pp. 250-267.
  13. ↑ M. Pinquart, S. Sorensen: Correlates of physical health of informal caregivers: A meta-analysis. In: Journal of Gerontology: Psychological Sciences. 2007, 62B (2), pp. 126-137.
  14. ^ R. Schulz, SR Beach: Caregiving as a risk factor for mortality: The caregiver health effects study. In: The Journal of the American Medical Association. 1999, 282 (23), pp. 2215-2219.
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  20. ↑ a b M. R. Hansberry, E. Chen, MJ Gorbien: Dementia and elder abuse. In: Clinics in Geriatric Medicine. 2005, 21 (2), pp. 315-332.
  21. ^ M. Grafström, A. Nordberg, B. Winblad: Abuse is in the eye of the beholder. Report by family members about abuse of demented persons in home care. A total population-based study. In: Scandinavian Journal of Social Medicine. 1993, 21 (4), pp. 247-255.
  22. ↑ R.-M. Karrasch, M. Reichert: Subjective assessments and perceptions of carers and those being cared for in partner care. In: Journal of Gerontopsychology and Psychiatry. 2008, 21 (4), pp. 259-265.
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  24. ↑ K. Eska, E. Gräßel, C. Donath, L. Schwarzkopf, J. Lauterberg, R. Holle: Predictors of institutionalization of dementia patients in mild and moderate stages: A 4-year prospective analysis. In: Dementia and Geriatric Cognitive Disorders Extra. 2013, 3 (1), pp. 426–445, PMC 3843910 (free full text).
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  29. ^ BC Robinson: Validation of a caregiver strain index. In: Journal of Gerontology. 1983, 38 (3), pp. 344-348.
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  31. ↑ caregiver-burden.eu
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  33. ↑ E. Gräßel: Home care scale HPS for recording the burden of caregivers. 2nd, revised edition. Vless, Ebersberg 2001.
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