Parents living with HIV in a high-income country: Do patients need specific support?

Daniel Gredig, Sibylle Nideröst, Martin Rickenbach, M. Battegay, E. Bernasconi, J. Böni, H. C. Bucher, Ph Bürgisser, A. Calmy, S. Cattacin, M. Cavassini, R. Dubs, M. Egger, L. Elzi, P. Erb, M. Fischer, M. Flepp, A. Fontana, P. Francioli, H. FurrerC. Fux, M. Gorgievski, H. Günthard, H. Hirsch, B. Hirschel, I. Hösli, Ch Kahlert, L. Kaiser, U. Karrer, C. Kind, Th Klimkait, B. Ledergerber, G. Martinetti, B. Martinez, N. Müller, D. Nadal, M. Opravil, F. Paccaud, G. Pantaleo, A. Rauch, S. Regenass, M. Rickenbach, C. Rudin, P. Schmid, D. Schultze, J. Schüpbach, R. Speck, P. Taffé, P. Tarr, A. Telenti, A. Trkola, P. Vernazza, R. Weber, S. Yerly, Gunvor Koitz, B. Mumelter, Bob Colebunders, Christiana Nöstlinger, Vernard Vandercam, Ulrike Sonnenberg-Schwan, F. D. Göbel, Nikos Dedes, Carlo Giaquinto, Gloriana Bartoli, Cateria Uberti-Foppa, Luis Caldeira, Victoria Gordillo, Ann Sofie Asander, Ed Wilkins, David Asoe

Research output: Contribution to journalArticle

1 Citation (Scopus)

Abstract

Questions under study: The number of HIV-infected persons with children and caregiving duties is likely to increase. From this statement, the present study was designed to establish how HIV-infected caregivers organise their parenting routines and to determine their support needs. A further aim was to ascertain caregivers' perception of conspicuous behaviours displayed by their children. Finally, it sought to determine the extent to which the caregivers' assessment of their parenting activity is influenced by the required support and their children's perceived conspicuous behaviours. Methods: The study design was observational and cross-sectional. Sampling was based on the 7 HIV Outpatient Clinics associated with the national population-based Swiss HIV Cohort Study. It focused on persons living with HIV who are responsible for raising children below the age of 18. A total of 520 caregivers were approached and 261 participated. An anonymous, standardised, self-administered questionnaire was used for data collection. The data were analysed using descriptive statistical procedures and backward elimination multiple regression analysis. Results: The 261 respondents cared for 406 children and adolescents under 18 years of age; the median age was 10 years. The caregivers' material resources were low. 70% had a net family income in a range below the median of Swiss net family income and 30% were dependent on welfare assistance. 73% were undergoing treatment with 86% reporting no physical impairments. The proportion of single caregivers was 34%. 92 % of the children were living with their HIV-infected caregivers. 80% of the children attended an institution such as a school or kindergarten during the day. 89% of the caregivers had access to social networks providing support. Nevertheless, caregivers required additional support in performing their parenting duties and indicated a need for assistance on the material level, in connection with legal problems and with participation in the labour market. 46% of the caregivers had observed one or more conspicuous behaviours displayed by their children, which indicates a challenging situation. However, most of these caregivers assessed their parenting activity very favourably. Backward elimination multiple regression analysis indicated that a smaller number of support needs, younger age of the eldest child and fewer physical impairments on the part of the caregiver enhance the caregivers' assessment of their parenting activity. Conclusion: Physicians should speak to caregivers living with HIV about their parenting responsibilities and provide the necessary scope for this subject in their consultation sessions. Physicians are in a position to draw their patients' attention to the services available to them.

Original languageEnglish
Pages (from-to)38-46
Number of pages9
JournalSwiss Medical Weekly
Volume138
Issue number3-4
Publication statusPublished - Jan 26 2008

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Caregivers
Parents
HIV
Parenting
Regression Analysis
Physicians
Ambulatory Care Facilities
Social Support
Cohort Studies
Referral and Consultation

Keywords

  • Caregivers
  • HIV/AIDS
  • Parenting
  • Parents
  • Support

ASJC Scopus subject areas

  • Medicine(all)

Cite this

Gredig, D., Nideröst, S., Rickenbach, M., Battegay, M., Bernasconi, E., Böni, J., ... Asoe, D. (2008). Parents living with HIV in a high-income country: Do patients need specific support? Swiss Medical Weekly, 138(3-4), 38-46.

Parents living with HIV in a high-income country : Do patients need specific support? / Gredig, Daniel; Nideröst, Sibylle; Rickenbach, Martin; Battegay, M.; Bernasconi, E.; Böni, J.; Bucher, H. C.; Bürgisser, Ph; Calmy, A.; Cattacin, S.; Cavassini, M.; Dubs, R.; Egger, M.; Elzi, L.; Erb, P.; Fischer, M.; Flepp, M.; Fontana, A.; Francioli, P.; Furrer, H.; Fux, C.; Gorgievski, M.; Günthard, H.; Hirsch, H.; Hirschel, B.; Hösli, I.; Kahlert, Ch; Kaiser, L.; Karrer, U.; Kind, C.; Klimkait, Th; Ledergerber, B.; Martinetti, G.; Martinez, B.; Müller, N.; Nadal, D.; Opravil, M.; Paccaud, F.; Pantaleo, G.; Rauch, A.; Regenass, S.; Rickenbach, M.; Rudin, C.; Schmid, P.; Schultze, D.; Schüpbach, J.; Speck, R.; Taffé, P.; Tarr, P.; Telenti, A.; Trkola, A.; Vernazza, P.; Weber, R.; Yerly, S.; Koitz, Gunvor; Mumelter, B.; Colebunders, Bob; Nöstlinger, Christiana; Vandercam, Vernard; Sonnenberg-Schwan, Ulrike; Göbel, F. D.; Dedes, Nikos; Giaquinto, Carlo; Bartoli, Gloriana; Uberti-Foppa, Cateria; Caldeira, Luis; Gordillo, Victoria; Asander, Ann Sofie; Wilkins, Ed; Asoe, David.

In: Swiss Medical Weekly, Vol. 138, No. 3-4, 26.01.2008, p. 38-46.

Research output: Contribution to journalArticle

Gredig, D, Nideröst, S, Rickenbach, M, Battegay, M, Bernasconi, E, Böni, J, Bucher, HC, Bürgisser, P, Calmy, A, Cattacin, S, Cavassini, M, Dubs, R, Egger, M, Elzi, L, Erb, P, Fischer, M, Flepp, M, Fontana, A, Francioli, P, Furrer, H, Fux, C, Gorgievski, M, Günthard, H, Hirsch, H, Hirschel, B, Hösli, I, Kahlert, C, Kaiser, L, Karrer, U, Kind, C, Klimkait, T, Ledergerber, B, Martinetti, G, Martinez, B, Müller, N, Nadal, D, Opravil, M, Paccaud, F, Pantaleo, G, Rauch, A, Regenass, S, Rickenbach, M, Rudin, C, Schmid, P, Schultze, D, Schüpbach, J, Speck, R, Taffé, P, Tarr, P, Telenti, A, Trkola, A, Vernazza, P, Weber, R, Yerly, S, Koitz, G, Mumelter, B, Colebunders, B, Nöstlinger, C, Vandercam, V, Sonnenberg-Schwan, U, Göbel, FD, Dedes, N, Giaquinto, C, Bartoli, G, Uberti-Foppa, C, Caldeira, L, Gordillo, V, Asander, AS, Wilkins, E & Asoe, D 2008, 'Parents living with HIV in a high-income country: Do patients need specific support?', Swiss Medical Weekly, vol. 138, no. 3-4, pp. 38-46.
Gredig D, Nideröst S, Rickenbach M, Battegay M, Bernasconi E, Böni J et al. Parents living with HIV in a high-income country: Do patients need specific support? Swiss Medical Weekly. 2008 Jan 26;138(3-4):38-46.
Gredig, Daniel ; Nideröst, Sibylle ; Rickenbach, Martin ; Battegay, M. ; Bernasconi, E. ; Böni, J. ; Bucher, H. C. ; Bürgisser, Ph ; Calmy, A. ; Cattacin, S. ; Cavassini, M. ; Dubs, R. ; Egger, M. ; Elzi, L. ; Erb, P. ; Fischer, M. ; Flepp, M. ; Fontana, A. ; Francioli, P. ; Furrer, H. ; Fux, C. ; Gorgievski, M. ; Günthard, H. ; Hirsch, H. ; Hirschel, B. ; Hösli, I. ; Kahlert, Ch ; Kaiser, L. ; Karrer, U. ; Kind, C. ; Klimkait, Th ; Ledergerber, B. ; Martinetti, G. ; Martinez, B. ; Müller, N. ; Nadal, D. ; Opravil, M. ; Paccaud, F. ; Pantaleo, G. ; Rauch, A. ; Regenass, S. ; Rickenbach, M. ; Rudin, C. ; Schmid, P. ; Schultze, D. ; Schüpbach, J. ; Speck, R. ; Taffé, P. ; Tarr, P. ; Telenti, A. ; Trkola, A. ; Vernazza, P. ; Weber, R. ; Yerly, S. ; Koitz, Gunvor ; Mumelter, B. ; Colebunders, Bob ; Nöstlinger, Christiana ; Vandercam, Vernard ; Sonnenberg-Schwan, Ulrike ; Göbel, F. D. ; Dedes, Nikos ; Giaquinto, Carlo ; Bartoli, Gloriana ; Uberti-Foppa, Cateria ; Caldeira, Luis ; Gordillo, Victoria ; Asander, Ann Sofie ; Wilkins, Ed ; Asoe, David. / Parents living with HIV in a high-income country : Do patients need specific support?. In: Swiss Medical Weekly. 2008 ; Vol. 138, No. 3-4. pp. 38-46.
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abstract = "Questions under study: The number of HIV-infected persons with children and caregiving duties is likely to increase. From this statement, the present study was designed to establish how HIV-infected caregivers organise their parenting routines and to determine their support needs. A further aim was to ascertain caregivers' perception of conspicuous behaviours displayed by their children. Finally, it sought to determine the extent to which the caregivers' assessment of their parenting activity is influenced by the required support and their children's perceived conspicuous behaviours. Methods: The study design was observational and cross-sectional. Sampling was based on the 7 HIV Outpatient Clinics associated with the national population-based Swiss HIV Cohort Study. It focused on persons living with HIV who are responsible for raising children below the age of 18. A total of 520 caregivers were approached and 261 participated. An anonymous, standardised, self-administered questionnaire was used for data collection. The data were analysed using descriptive statistical procedures and backward elimination multiple regression analysis. Results: The 261 respondents cared for 406 children and adolescents under 18 years of age; the median age was 10 years. The caregivers' material resources were low. 70{\%} had a net family income in a range below the median of Swiss net family income and 30{\%} were dependent on welfare assistance. 73{\%} were undergoing treatment with 86{\%} reporting no physical impairments. The proportion of single caregivers was 34{\%}. 92 {\%} of the children were living with their HIV-infected caregivers. 80{\%} of the children attended an institution such as a school or kindergarten during the day. 89{\%} of the caregivers had access to social networks providing support. Nevertheless, caregivers required additional support in performing their parenting duties and indicated a need for assistance on the material level, in connection with legal problems and with participation in the labour market. 46{\%} of the caregivers had observed one or more conspicuous behaviours displayed by their children, which indicates a challenging situation. However, most of these caregivers assessed their parenting activity very favourably. Backward elimination multiple regression analysis indicated that a smaller number of support needs, younger age of the eldest child and fewer physical impairments on the part of the caregiver enhance the caregivers' assessment of their parenting activity. Conclusion: Physicians should speak to caregivers living with HIV about their parenting responsibilities and provide the necessary scope for this subject in their consultation sessions. Physicians are in a position to draw their patients' attention to the services available to them.",
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T1 - Parents living with HIV in a high-income country

T2 - Do patients need specific support?

AU - Gredig, Daniel

AU - Nideröst, Sibylle

AU - Rickenbach, Martin

AU - Battegay, M.

AU - Bernasconi, E.

AU - Böni, J.

AU - Bucher, H. C.

AU - Bürgisser, Ph

AU - Calmy, A.

AU - Cattacin, S.

AU - Cavassini, M.

AU - Dubs, R.

AU - Egger, M.

AU - Elzi, L.

AU - Erb, P.

AU - Fischer, M.

AU - Flepp, M.

AU - Fontana, A.

AU - Francioli, P.

AU - Furrer, H.

AU - Fux, C.

AU - Gorgievski, M.

AU - Günthard, H.

AU - Hirsch, H.

AU - Hirschel, B.

AU - Hösli, I.

AU - Kahlert, Ch

AU - Kaiser, L.

AU - Karrer, U.

AU - Kind, C.

AU - Klimkait, Th

AU - Ledergerber, B.

AU - Martinetti, G.

AU - Martinez, B.

AU - Müller, N.

AU - Nadal, D.

AU - Opravil, M.

AU - Paccaud, F.

AU - Pantaleo, G.

AU - Rauch, A.

AU - Regenass, S.

AU - Rickenbach, M.

AU - Rudin, C.

AU - Schmid, P.

AU - Schultze, D.

AU - Schüpbach, J.

AU - Speck, R.

AU - Taffé, P.

AU - Tarr, P.

AU - Telenti, A.

AU - Trkola, A.

AU - Vernazza, P.

AU - Weber, R.

AU - Yerly, S.

AU - Koitz, Gunvor

AU - Mumelter, B.

AU - Colebunders, Bob

AU - Nöstlinger, Christiana

AU - Vandercam, Vernard

AU - Sonnenberg-Schwan, Ulrike

AU - Göbel, F. D.

AU - Dedes, Nikos

AU - Giaquinto, Carlo

AU - Bartoli, Gloriana

AU - Uberti-Foppa, Cateria

AU - Caldeira, Luis

AU - Gordillo, Victoria

AU - Asander, Ann Sofie

AU - Wilkins, Ed

AU - Asoe, David

PY - 2008/1/26

Y1 - 2008/1/26

N2 - Questions under study: The number of HIV-infected persons with children and caregiving duties is likely to increase. From this statement, the present study was designed to establish how HIV-infected caregivers organise their parenting routines and to determine their support needs. A further aim was to ascertain caregivers' perception of conspicuous behaviours displayed by their children. Finally, it sought to determine the extent to which the caregivers' assessment of their parenting activity is influenced by the required support and their children's perceived conspicuous behaviours. Methods: The study design was observational and cross-sectional. Sampling was based on the 7 HIV Outpatient Clinics associated with the national population-based Swiss HIV Cohort Study. It focused on persons living with HIV who are responsible for raising children below the age of 18. A total of 520 caregivers were approached and 261 participated. An anonymous, standardised, self-administered questionnaire was used for data collection. The data were analysed using descriptive statistical procedures and backward elimination multiple regression analysis. Results: The 261 respondents cared for 406 children and adolescents under 18 years of age; the median age was 10 years. The caregivers' material resources were low. 70% had a net family income in a range below the median of Swiss net family income and 30% were dependent on welfare assistance. 73% were undergoing treatment with 86% reporting no physical impairments. The proportion of single caregivers was 34%. 92 % of the children were living with their HIV-infected caregivers. 80% of the children attended an institution such as a school or kindergarten during the day. 89% of the caregivers had access to social networks providing support. Nevertheless, caregivers required additional support in performing their parenting duties and indicated a need for assistance on the material level, in connection with legal problems and with participation in the labour market. 46% of the caregivers had observed one or more conspicuous behaviours displayed by their children, which indicates a challenging situation. However, most of these caregivers assessed their parenting activity very favourably. Backward elimination multiple regression analysis indicated that a smaller number of support needs, younger age of the eldest child and fewer physical impairments on the part of the caregiver enhance the caregivers' assessment of their parenting activity. Conclusion: Physicians should speak to caregivers living with HIV about their parenting responsibilities and provide the necessary scope for this subject in their consultation sessions. Physicians are in a position to draw their patients' attention to the services available to them.

AB - Questions under study: The number of HIV-infected persons with children and caregiving duties is likely to increase. From this statement, the present study was designed to establish how HIV-infected caregivers organise their parenting routines and to determine their support needs. A further aim was to ascertain caregivers' perception of conspicuous behaviours displayed by their children. Finally, it sought to determine the extent to which the caregivers' assessment of their parenting activity is influenced by the required support and their children's perceived conspicuous behaviours. Methods: The study design was observational and cross-sectional. Sampling was based on the 7 HIV Outpatient Clinics associated with the national population-based Swiss HIV Cohort Study. It focused on persons living with HIV who are responsible for raising children below the age of 18. A total of 520 caregivers were approached and 261 participated. An anonymous, standardised, self-administered questionnaire was used for data collection. The data were analysed using descriptive statistical procedures and backward elimination multiple regression analysis. Results: The 261 respondents cared for 406 children and adolescents under 18 years of age; the median age was 10 years. The caregivers' material resources were low. 70% had a net family income in a range below the median of Swiss net family income and 30% were dependent on welfare assistance. 73% were undergoing treatment with 86% reporting no physical impairments. The proportion of single caregivers was 34%. 92 % of the children were living with their HIV-infected caregivers. 80% of the children attended an institution such as a school or kindergarten during the day. 89% of the caregivers had access to social networks providing support. Nevertheless, caregivers required additional support in performing their parenting duties and indicated a need for assistance on the material level, in connection with legal problems and with participation in the labour market. 46% of the caregivers had observed one or more conspicuous behaviours displayed by their children, which indicates a challenging situation. However, most of these caregivers assessed their parenting activity very favourably. Backward elimination multiple regression analysis indicated that a smaller number of support needs, younger age of the eldest child and fewer physical impairments on the part of the caregiver enhance the caregivers' assessment of their parenting activity. Conclusion: Physicians should speak to caregivers living with HIV about their parenting responsibilities and provide the necessary scope for this subject in their consultation sessions. Physicians are in a position to draw their patients' attention to the services available to them.

KW - Caregivers

KW - HIV/AIDS

KW - Parenting

KW - Parents

KW - Support

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