LASA side studies

Family caregiving to older adults (side study)

Self-perceived pressure from informal burden


Author: Anne Margriet Pot

Contact: Marjolein Broese van Groenou

Background
Caregiving demands may dominate at the expense of caregivers’ personal interests, such as the necessary time and space for other thoughts, activities and roles of the caregiver. To measure this unbalance, LASA includes the items of the Self-Perceived Pressure by Informal Care scale (SPPIC: Pot et al., 1995). Perceived pressure is seen as a cognitive mediating variable between the caregiving situation (stressor) and negative health consequences for the caregiver (effect) (Lazarus, 1991; Pot et al., 1997). Five of the nine items are derived from the questionnaire ‘care stress’ (Janssen & Woldringh, 1991), the others are specifically formulated for the construction of this scale. This scale has an advantage in comparison to other scales measuring ‘burden’ or ‘perceived stress’, because caregivers are not asked to relate their affective responses directly to the caregiving situation, which lead to confusion of the assumed stressor and its effect (see also George and Gwyther, 1986).

Where to find the measurement instruments in LASA
The SSPIC is used in the LASA-substudy ‘Family Caregiving to older adults’ (Broese van Groenou, Deeg & van der Horst, 2001). Partners and children of a selected sample of LASA-respondents were asked to indicate their caregiving activities to the older LASA-respondent. Those who indicated to provide at least some care (personal and/or domestic) to the spouse/parent, were asked to fill out the SPPIC. In 2002 a follow-up will be conducted among the partners and children.

LASA-Care Partners

LASA-Care Children

Wave

2001

2001

questionnaire

face-to-face

written questionnaire

N

25

142

Items

LASADCP87.SYS

LASADF2C.SAV

Scalescore

LASDCP287.SYS

EDIZ.SAV

Wording of the questions

ITEMS

LASADCP87.SYS

LASADF2C.SAV

1

I never feel free of responsibilities.
Ik voel me nooit vrij van verantwoordelijkheden.

DCPFREE

DFEDIZ01

2

Owing to the situation of my partner/father/mother I have too little time for myself.
Door de situatie van mijn partner/vader/moeder kom ik te weinig aan mijn eigen leven toe.

DCPOWN

DFEDIZ02

3

Combining the responsibility for my partner/father/mother and for my job and/or family is not easy.
Het combineren van de verantwoordelijkheid voor mijn partner/vader/moeder en de verantwoordelijkheid voor mijn werk en/of gezin valt niet mee.

DCPRESP

DFEDIZ03

4

The help which my partner/father/mother needs rests too much on my schoulders.
De hulp die mijn partner/vader/moederf nodig heeft, komt teveel op mijn schouders neer.

DCPLOAD

DFEDIZ04

5

Caused by my concerns for my partner/father/mother, others come short.
Door mijn betrokkenheid bij mijn partner/vader/moeder doe ik anderen tekort.

DCPSHCOM

DFEDIZ05

6

I must always be available for my partner/father/mother.
Ik moet altijd maar klaarstaan voor mijn partner/vader/moeder.

DCPREADY

DFEDIZ06

7

My independence is suffering.
Mijn zelfstandigheid komt in de knel.

DCPLINDP

DFEDIZ07

8

My involvement with my partner/father/mother means that I feel very tied
Door mijn betrokkenheid bij mijn partner/vader/moeder voel ik me erg gebonden.

DCPTIED

DFEDIZ08

9

The situation of my partner/father/mother constantly demands my attention.
De situatie van mijn partner/vader/moeder eist voortdurend mijn aandacht.

DCPATTEN

DFEDIZ09

10

Caused by my concerns for my partner/father/mother conflicts at home and/or at my work are created.
Door mijn betrokkenheid bij mijn partner/vader/moeder krijg ik conflicten thuis en/of op mijn werk.

DCPCONFL

DFEDIZ10

11

The situation of my partner/father/mother is a constant preoccupation.
De situatie van mijn partner/vader/moeder laat mij nooit los.

DCPLETGO

DFEDIZ11

12

Generally speaking I feel very pressured by the situation of my partner/father/mother.
Ik voel mij over het geheel genomen erg onder druk staan door de situatie van mijn partner/vader/moeder.

DCPPRESS

DFEDIZ12

The EDIZ-items 2, 5, 8 and 11 were derived from the Experienced Burden Scale (Hommel & Koedoot, 1990). This 28-item scale was used in the LASA-side study ‘Informal Caregiving at the end of life’ in a written questionnaire completed by 56 informal caregivers of deceased LASA-respondents (Visser et al. 2001). In the end-of-life substudy the formulation of the questions was retrospectively.

Response Categories for all questions
No! [Nee!]
No [Nee]
More-or-less [Min of meer]
Yes [Ja]
Yes! [Ja!]

The response categories ‘more-or-less’ ‘yes’ and ‘yes!’ must be recoded into ‘1’, indicating that pressure was received. The response categories ‘no!’ and ‘no’ must be recoded into ‘0’.
For constructing a 9-item scale, item 2, 5 and 8 must be dropped. For the 9-item scale reliability and construct validity were good (Rho=.79: Pot et al., 1995) . For further scale development, all 12 items may be used.
Reliability of the 12-item scale is 0.82 for the partner (N=17) and 0.93 for the children (N=142; Cronbach’s alpha). Reliability of the 9-item scale is 0.70 for the partner (N=17) and 0.90 for the children (N=143).

How to use the variables
There are two options (see above):
1. The total score for 9 dichotomized items.
The total score for 12 dichotomized items for further scale development.
Longitudinal analyses will focus on changes in perceived pressure by informal care among the spouses and children in relation to changes in caregiving of these subjects and the care needs of the LASA-respondent.

Previous use in LASA
The 12-item score was used in a study on the determinants of experienced burden among informal caregivers (spouses and children) of chronically ill older adults (LASA side-study on Family Caregiving). The results are published in Knipscheer & Broese van Groenou (2004).

References

  1. Broese van Groenou MI, Deeg DJH, Van der Horst MHL (2001). Sourcebook of the LASA-substudy ‘Family Caregiving to Older Adults’. Questionnnaires and Data Documentation of the data collected among older adults, their partners and their children, 2000-2001. Amsterdam, LASA, Vrije Universiteit.
  2. George LK, Gwyther LP. Caregiver well-being: a multidimensional examination of family caregivers of demented adults. The Gerontologist 26; 1986: 253-259.
  3. Hommel, AC, Koedoot CG, Knipscheer CPM (1990). De centrale verzorg(st)ers van de ouderen in het project Individuele zorgsubsidie Rotterdam, deel 1. Amsterdam: Vrije Universiteit.
  4. Janssen T, Woldringh C. De centrale verzorg(st)ers van ouderen. [The primary caregivers of elderly people.] Nijmegen: Toegepaste Sociale Wetenschappen, 1991.
  5. Knipscheer, CPM., Broese van Groenou, MI (2004). Determinanten van zorgbelasting bij partners en kinderen van hulpbehoevende ouderen met fysieke gezondheidsproblemen. [Determinants of heavy burden among informal caregivers.] Tijdschrift voor Gerontologie en Geriatrie, 35, 96-106.
  6. Lazarus RS. Emotion and adaptation. New York: Oxford University Press, 1991.
  7. Pot AM, Dyck R van, Deeg DJH. Ervaren druk door informele zorg: constructie van een schaal. Tijdschrift voor Gerontologie en Geriatrie 26; 1995: 214-219.
  8. Pot AM, Deeg DJH, Dyck R van, Jonker C. Psychological distress of caregivers: the mediator effect of caregiving appraisal. Patient Education and Counse­ling 34; 1998: 43-51.
  9. Visser G, Klinkenberg M, van Sluijs M, Westendorp M, Broese van Groenou MI (2001). Informal care at the end of life. Data documentation for the self-administered written questionnaire for the primary caregivers of older adults at the end of life and for the qualitative study of the process and meaning of caregiving to dying relatives. Amsterdam, LASA, Vrije Universiteit.