50plushiv: Psychosocial aspects of growing older with HIV and AIDS in Germany. Quantitative primary data.
Clinical PsychologyAuthors(s) / Creator(s)
Drewes, JochenGusy, Burkhard
Abstract
The 50plushiv study is an explorative cross-sectional study on the living situation of older people with HIV and AIDS in Germany with (health) psychological and health science questions.
The study was realised as a standardised questionnaire survey with an online questionnaire and a paper-pencil questionnaire. The self-developed instrument used consists of established scales and indices as well as specially developed question (batteries). The instrument covers the following thematic areas:
– Information on the person and life situation
– Information on the HIV infection
– Coping with HIV infection
– HIV stigma and discrimination
– Life satisfaction and quality of life
– Concomitant diseases and other health parameters
– Sexuality
– Health behaviours
– Use of preventive services
– Social support and loneliness
– Aspects of medical care
– Hospitalisation and rehabilitation
– Support and support needs in everyday life
– Living in old age
– Worries
An ad hoc sample was realised with 907 HIV-positive participants who have reached the age of 50 and live in Germany.
Persistent Identifier
https://doi.org/10.5160/psychdata.dsjn14ps09Year of Publication
2022Funding
How to cite
Study Description
Research Questions/Hypotheses:
Research Design:
Fully standardised survey instrument (provides question formulation and answer options); single measurement
Measurement Instruments/Apparatus:
The 50plushiv study was an explorative study that was intended to enable a variety of health psychological, health scientific and psychosocial questions to be addressed. For this purpose, a comprehensive survey instrument consisting of individual items and questionnaires was created, which included ad hoc scales and items but also standardised scales and tests, the selection of which was made on the basis of a comprehensive literature research as well as expert interviews.
The questionnaire covered these topics:
- Personal information and life situation
- Information about the HIV infection
- Coping with HIV infection
- HIV stigma and discrimination
- Life satisfaction and quality of life
- Concomitant diseases and other health parameters
- Sexuality
- Health behaviours
- Use of preventive services
- Social support and loneliness
- Aspects of medical care
- Hospitalisation and rehabilitation
- Support and support needs in everyday life
- Living in old age
- Worries
In total, the questionnaire comprised about 210 items. Among them are the following established scales and indices:
Socio-economic status (Robert Koch Institute).
Health-related quality of life (SF-12)
Subjective health status (Self-rated health: 1 item as part of the SF-12)
Mental health (PHQ-4)
Life satisfaction
Internalised HIV stigma (Negative self-image subscale of the HIV Stigma Scale)
Adversarial Growth (self-shortened version of the Silver Lining Questionnaire)
Social support (modified version of the Oslo-3 Social Support Scale)
Feelings of loneliness (shortened version of the UCLA Loneliness Scale subscale)
Alcohol consumption (AUDIT-C)
Data Collection Method:
Survey in the absence of an investigator
- Postal survey
- Online survey
Population:
All persons with diagnosed HIV infection who have reached the age of 50 and live in Germany.
Survey Time Period:
2013-09-30 to 2014-03-02
Sample:
Convenience sample
Gender Distribution:
13 % female participants
87 % male participants
Age Distribution: 50-83 years
Spatial Coverage (Country/Region/City): Germany/-/-
Subject Recruitment:
Between October 2013 and January 2014, more than 3,000 questionnaires were sent to about 140 HIV specialist doctors, 50 HIV specialist outpatient clinics, about 100 regional AIDS support organisations and associations, 40 other counselling and self-help facilities and 12 care services and residential facilities for HIV-positive people, with the request to pass them on to clients who had reached the age of 50.
A total of 544 paper questionnaires were returned by the participants (response rate approx. 18 percent), of which 499 could be included in the evaluation sample.
In addition to this recruitment method, an online questionnaire was made available, which could be accessed and answered via a link on the project homepage at www.50plushiv.de. The link to the homepage was published in media reports. The link to the homepage was advertised in media reports, via social networks as well as via leaflets. A link to the online questionnaire was also provided on the paper questionnaire.
The online questionnaire was clicked on 1,102 times during the field period from 30 September 2013 to 2 March 2015. The questionnaire was started 665 times and 426 persons answered the questionnaire to the end. The average response time for the online questionnaire was 38 minutes. 408 data sets could be included in the analysis sample.
This resulted in an analysis sample with the total size of n=907, of which 55% completed the paper questionnaire and 45% completed the online questionnaire.
Recruitment was supported by reports in various media aimed at the gay and HIV community. Thus, articles about the study appeared on queer.de, aidshilfe.de and 2mecs, in Siegessäule, Projekt Information, HIV&more, Dhiva and other media.
Sample Size:
907 participants
Return/Drop Out:
| Position | Name | Label | Valid Values | Missing Values |
|---|---|---|---|---|
|
1
|
TN
|
Teilnehmernummer
|
1-907 "fortlaufende Teilnehmernummern"
|
9999 "fehlender Wert: nicht spezifiziert"
|
|
2
|
QUELLE
|
Papier- oder Online-Fragebogen
|
1 "Online"
2 "Papier"
|
9 "fehlender Wert: nicht spezifiziert"
|
|
3
|
V0
|
Informed Consent
|
1 "Indikatorwert für das Vorliegen einer Einwilligung in die Studienteilnahme"
|
9 "fehlender Wert: nicht spezifiziert"
|
|
4
|
V2
|
Jahr der HIV-Diagnose
|
1 "vor 1984"
2 "1984"
3 "1985"
4 "1986"
5 "1987"
6 "1988"
7 "1989"
8 "1990"
9 "1991"
10 "1992"
11 "1993"
12 "1994"
13 "1995"
14 "1996"
15 "1997"
16 "1998"
17 "1999"
18 "2000"
19 "2001"
20 "2002"
21 "2003"
22 "2004"
23 "2005"
24 "2006"
25 "2007"
26 "2008"
27 "2009"
28 "2010"
29 "2011"
30 "2012"
31 "2013"
|
0 "fehlender Wert: keine Auswahl erfolgt"
9999 "fehlender Wert: nicht spezifiziert"
|
|
5
|
V3
|
Jahr der HIV-Infektion
|
1 "vor 1984"
2 "1984"
3 "1985"
4 "1986"
5 "1987"
6 "1988"
7 "1989"
8 "1990"
9 "1991"
10 "1992"
11 "1993"
12 "1994"
13 "1995"
14 "1996"
15 "1997"
16 "1998"
17 "1999"
18 "2000"
19 "2001"
20 "2002"
21 "2003"
22 "2004"
23 "2005"
24 "2006"
25 "2007"
26 "2008"
27 "2009"
28 "2010"
29 "2011"
30 "2012"
31 "2013"
|
0 "fehlender Wert: keine Auswahl erfolgt"
9998 "fehlender Wert: weiß ich nicht"
9999 "fehlender Wert: nicht spezifiziert"
|
|
6
|
V4
|
Anzahl CD4-Zellen bei Diagnose
|
1 "über 200/µl"
2 "unter 200/µl"
3 "weiß ich nicht"
|
0 "fehlender Wert: nicht spezifiziert"
9 "fehlender Wert: nicht spezifiziert"
|
|
7
|
V5
|
Vorliegen von Erkrankungen bei Diagnose
|
1 "nein"
2 "ja, diese waren weniger schwerwiegend"
3 "ja, diese waren sehr schwerwiegend"
|
0 "fehlender Wert: nicht spezifiziert"
9 "fehlender Wert: nicht spezifiziert"
|
|
8
|
V6
|
vermutlicher Transmissionsweg
|
1 "homosexueller Sex"
2 "heterosexueller Sex"
3 "Austausch von Spritzbesteck beim Drogenkonsum"
4 "über eine Bluttransfusion/Operation"
5 "über andere Blutprodukte"
6 "Sonstiges"
7 "berufliche Exposition"
8 "weiß nicht"
|
9 "fehlender Wert: nicht spezifiziert"
|
|
9
|
V7
|
antiretrovirale Behandlung
|
1 "nein, habe ich noch nie"
2 "nein, derzeit nicht, ich habe aber in der Vergangenheit antiretrovirale Medikamente eingenommen"
3 "ja, ich habe mit der Therapie (erstmals) begonnen im Jahr"
|
0 "fehlender Wert: nicht spezifiziert"
9 "fehlender Wert: nicht spezifiziert"
|
|
10
|
V7_JAHR
|
Beginn der antiretroviralen Behandlung
|
1983-2013 "Beginn der antiretroviralen Behandlung"
|
-77 "fehlender Wert: nicht spezifiziert"
9999 "fehlender Wert: nicht spezifiziert"
|
| Utilized Test Methods |
|---|
|
Lampert, T., Kroll, L., Müters, S., & Stolzenberg, H. (2013). Messung des sozioökonomischen Status in der Studie zur Gesundheit Erwachsener in Deutschland (DEGS1). Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz, 56(5/6), 631–636. |
|
SF-12: Morfeld, M., Kirchberger, I, & Bullinger, M. (2011). SF-36. Fragebogen zum Gesundheitszustand (2., ergänzte und überarbeitete Auflage). Göttingen: Hogrefe. |
|
PHQ-4: Kroenke, K., Spitzer, R. L., Williams, J. B., & Löwe, B. (2009). An ultra-brief screening scale for anxiety and depression: the PHQ–4. Psychosomatics, 50(6), 613–621. |
|
Self-abbreviated version of the Satisfaction with Life Scale: Diener, E., Emmons, R. A., Larsen, R. J., & Griffin, S. (1985). The satisfaction with life scale. Journal of Personality Assessment, 49, 71–75. https://doi.org/10.1207/s15327752jpa4901_13 The three items with the highest factor loadings according to Diener et al. (1985) were selected. |
|
Negative self-image subscale of the HIV Stigma Scale: Berger, B. E., Ferrans, C. E., & Lashley, F. R. (2001). Measuring stigma in people with HIV: Psychometric assessment of the HIV stigma scale. Research in Nursing & Health, 24(6), 518–529. https://doi.org/10.1002/nur.10011 |
|
German Version: Dinkel, A., Nather, C., Jaeger, H., Jaegel-Guedes, E., Lahmann, C., Steinke, C., ... & Ronel, J. (2014). Stigmatisierungserleben bei HIV/AIDS: erste deutsche Adaptation der HIV-Stigma Skala (HSS-D). PPmP-Psychotherapie· Psychosomatik· Medizinische Psychologie, 64(01), 20–27. https://doi.org/10.1055/s-0033-1341449
Changes to the original scale cf. Drewes, J., Langer, P. C., Ebert, J., Kleiber, D., & Gusy, B. (2021). Associations between experienced and internalized HIV stigma, adversarial growth, and health outcomes in a nationwide sample of people aging with HIV in Germany. AIDS and Behavior, 25(4), 1037–1046. https://doi.org/10.1007/s10461-020-03061-3
Self-constructed index: cf. Drewes, J., Langer, P. C., Ebert, J., Kleiber, D., & Gusy, B. (2021). Associations between experienced and internalized HIV stigma, adversarial growth, and health outcomes in a nationwide sample of people aging with HIV in Germany. AIDS and Behavior, 25(4), 1037–1046. https://doi.org/10.1007/s10461-020-03061-3 |
|
Self-abbreviated version of the Silver Lining Questionnaire: Sodergren, S. C., Hyland, M. E., Singh, S. J., & Sewell, L. (2002). The effect of rehabilitation on positive interpretations of illness. Psychology and Health, 17(6), 753–760. https://doi.org/10.1080/0887044021000009674
For the shortening process cf. Drewes, J., Langer, P. C., Ebert, J., Kleiber, D., & Gusy, B. (2021). Associations between experienced and internalized HIV stigma, adversarial growth, and health outcomes in a nationwide sample of people aging with HIV in Germany. AIDS and Behavior, 25(4), 1037–1046. https://doi.org/10.1007/s10461-020-03061-3 |
|
Changed version of the Oslo-3 Social Support Scale; Meltzer H. Development of a common instrument for mental health. In: Nosikov A, Gudex C, editors. EUROHIS: developing common instruments for health surveys. Amsterdam: IOS Press; 2003. p. 35–60.
The wording of one item was changed, cf. Drewes, J., Ebert, J., Langer, P. C., Kleiber, D., & Gusy, B. (2021). Comorbidities and psychosocial factors as correlates of self-reported falls in a nationwide sample of community-dwelling people aging with HIV in Germany. BMC public health, 21, 1–9. https://doi.org/10.1186/s12889-021-11582-2 |
|
Self-abbreviated version of the Loneliness feelings subscale of the UCLA Loneliness Scale: Döring, N., & Bortz, J. (1993). Psychometrische Einsamkeitsforschung: Deutsche Neukonstruktion der UCLA Loneliness Scale [Psychometric research on loneliness: A new German version of the University of California at Los Angeles (UCLA) Loneliness Scale]. Diagnostica, 39(3), 224–239.
For the shortening process cf. Drewes, J., Ebert, J., Langer, P. C., Kleiber, D., & Gusy, B. (2021). Comorbidities and psychosocial factors as correlates of self-reported falls in a nationwide sample of community-dwelling people aging with HIV in Germany. BMC Public Health, 21, 1–9. https://doi.org/10.1186/s12889-021-11582-2 |