Glass children: The lived experiences of siblings of people with a disability or chronic illness

Journal article


Hanvey, I., Malovic, A. and Ntontis, E. 2022. Glass children: The lived experiences of siblings of people with a disability or chronic illness. Journal of Community & Applied Social Psychology. 32 (5), pp. 936-948. https://doi.org/10.1002/casp.2602
AuthorsHanvey, I., Malovic, A. and Ntontis, E.
Abstract

Siblings of disabled or chronically ill children are often hidden family members and their needs for support might not be met. Current research however is limited in its understanding of siblings' lived experiences. This study uses semi-structured interviews to explore the lived experiences of 16 individuals (referred to as siblings) who grew up with a disabled or chronically ill brother or sister. Participants reflected on their childhood and adolescent experiences as siblings, focusing on their social interactions and relationships, social support, and wellbeing. Using thematic analysis, we identified four distinct but theoretically related themes; participants experienced (a) feelings of invisibility during social interactions, (b) psychological difficulties due to the internalisation of family roles or life conditions, and (c) feelings of guilt and self-blame. Finally, (d) social support was central as siblings were sometimes unable to understand their own needs, and support from family and peer groups helped them have their negative experiences validated. Our findings suggest greater support for siblings is required with a focus on addressing negative feelings and the availability of social support from people with similar experiences.

KeywordsChronic illness; Lived experience; Disability; Siblings; Social supoort
Year2022
JournalJournal of Community & Applied Social Psychology
Journal citation32 (5), pp. 936-948
PublisherWiley
ISSN1052-9284
1099-1298
Digital Object Identifier (DOI)https://doi.org/10.1002/casp.2602
Official URLhttps://onlinelibrary.wiley.com/doi/full/10.1002/casp.2602
Publication dates
Online24 Jan 2022
Publication process dates
Accepted02 Jan 2022
Deposited17 Feb 2022
Publisher's version
License
Output statusPublished
Permalink -

https://repository.canterbury.ac.uk/item/906zw/glass-children-the-lived-experiences-of-siblings-of-people-with-a-disability-or-chronic-illness

  • 878
    total views
  • 258
    total downloads
  • 53
    views this month
  • 20
    downloads this month

Export as

Related outputs

The dynamics of leadership and resistance in repressive regimes: The cases of the Czechoslovak Socialist Republic and Polish People’s Republic
Jurstakova, K., Ntontis, E. and Nigbur, D. The dynamics of leadership and resistance in repressive regimes: The cases of the Czechoslovak Socialist Republic and Polish People’s Republic. in: Bou Zeineddine, F. and Vollhardt, J.R. (ed.) The Psychology of Resistance in Violent and Repressive Contexts
A warrant for violence? An analysis of Donald Trump's speech before the US Capitol attack
Ntontis, E., Jurstakova, K., Neville, F., Haslam, S.A. and Reicher, S.D. 2023. A warrant for violence? An analysis of Donald Trump's speech before the US Capitol attack. British Journal of Social Psychology. 63 (1), pp. 3-19.
A warrant for violence? An analysis of Donald Trump's speech before the US Capitol attack
Ntontis, E., Jurstakova, K., Neville, F. and Reicher, S. 2023. A warrant for violence? An analysis of Donald Trump's speech before the US Capitol attack. British Journal of Social Psychology. https://doi.org/10.1111/bjso.12679
Impresarios of identity: How the leaders of Czechoslovakia's ‘Candlelight Demonstration’ enabled effective collective action in a context of repression
Jurstakova, K., Ntontis, E. and Reicher, S. 2023. Impresarios of identity: How the leaders of Czechoslovakia's ‘Candlelight Demonstration’ enabled effective collective action in a context of repression. British Journal of Social Psychology. 63 (1), pp. 153-169. https://doi.org/10.1111/bjso.12671
Examining the role of Donald Trump and his supporters in the 2021 assault on the U.S. Capitol: A dual-agency model of identity leadership and engaged followership
Haslam, S.A., Reicher, S.D., Selvanathan, H.P., Gaffney, A., Steffens, N.K., Packer, D., Van Bavel, J., Ntontis, E., Neville, F., Vestergren, S., Jurstakova, K. and Platow, M. 2022. Examining the role of Donald Trump and his supporters in the 2021 assault on the U.S. Capitol: A dual-agency model of identity leadership and engaged followership. The Leadership Quarterly. 34 (2). https://doi.org/10.1016/j.leaqua.2022.101622
Collective victimhood in populist media about Brexit: rage against the machine?
Nigbur, D., Williams, E., Layton, A., Tsirogianni, S., Ntontis, E., Hoerst, C., Jemwa, A. and Volkers Poile, I. 2022. Collective victimhood in populist media about Brexit: rage against the machine?
Tracking the nature and trajectory of social support in Facebook mutual aid groups during the COVID-19 pandemic.
Ntontis, Evangelos, Fernandes-Jesus, Maria, Mao, Guanlan, Dines, Tom, Kane, Jazmin, Karakaya, Joshua, Perach, Rotem, Cocking, Chris, McTague, Michael, Schwarz, Anna, Semlyen, Joanna and Drury, John 2022. Tracking the nature and trajectory of social support in Facebook mutual aid groups during the COVID-19 pandemic. International Journal of Disaster Risk Reduction : IJDRR. 76, p. 103043. https://doi.org/10.1016/j.ijdrr.2022.103043
Is it really "panic buying"? Public perceptions and experiences of extra buying at the onset of the COVID-19 pandemic.
Ntontis, E., Vestergren, S., Saavedra, Patricio, Neville, F., Jurstakova, K., Cocking, C., Lay, S., Drury, J., Stott, Clifford, Reicher, Stephen and Vignoles, Vivian L 2022. Is it really "panic buying"? Public perceptions and experiences of extra buying at the onset of the COVID-19 pandemic. PLoS ONE. 17 (2), p. e0264618. https://doi.org/10.1371/journal.pone.0264618
How participation in Covid‐19 mutual aid groups affects subjective well‐being and how political identity moderates these effects
Mao, G., Drury, J., Fernandes-Jesus, M. and Ntontis, E. 2021. How participation in Covid‐19 mutual aid groups affects subjective well‐being and how political identity moderates these effects. Analyses of Social Issues and Public Policy. https://doi.org/10.1111/asap.12275
What have we learned about COVID-19 volunteering in the UK? A rapid review of the literature.
Mao, Guanlan, Fernandes-Jesus, M., Ntontis, Evangelos and Drury, John 2021. What have we learned about COVID-19 volunteering in the UK? A rapid review of the literature. BMC Public Health. 21 (1), p. 1470. https://doi.org/10.1186/s12889-021-11390-8
Harnessing shared identities to mobilise resilient responses to the COVID-19 pandemic
Vignoles, V., Jaser, Z., Taylor, F. and Ntontis, E. 2020. Harnessing shared identities to mobilise resilient responses to the COVID-19 pandemic. Political Psychology. https://doi.org/10.1111/pops.12726
Collective resilience in the disaster recovery period: Emergent social identity and observed social support are associated with collective efficacy, wellbeing, and the provision of social support
Ntontis, E., Drury, J., Amlot, R., Rubin, J., Williams, R. and Saavedra, P. 2020. Collective resilience in the disaster recovery period: Emergent social identity and observed social support are associated with collective efficacy, wellbeing, and the provision of social support. British Journal of Social Psychology. 60 (3), pp. 1075-1095. https://doi.org/10.1111/bjso.12434
Public behaviour in response to the Covid-19 pandemic: Understanding the role of group processes
Drury, J., Carter, H., Ntontis, E. and Tekin-Guven, S. 2020. Public behaviour in response to the Covid-19 pandemic: Understanding the role of group processes. BJPsych OPEN. https://doi.org/10.1192/bjo.2020.139
Solidarity
Ntontis, E. and Rocha, C. 2020. Solidarity. in: Jetten, J., Reicher, S.D., Haslam, S.A. and Cruwys, T. (ed.) Together apart: The psychology of COVID-19 SAGE. pp. 102-106
“An important part of who I am”: The predictors of dietary adherence among weight-loss, vegetarian, vegan, paleo, and gluten-free dietary groups
Cruwys, T., Norwood, R., Chachay, V.S., Ntontis, E. and Sheffield, J. 2020. “An important part of who I am”: The predictors of dietary adherence among weight-loss, vegetarian, vegan, paleo, and gluten-free dietary groups. Nutrients. 12 (4), p. 970. https://doi.org/10.3390/nu12040970
Endurance or decline of emergent groups following a flood disaster: implications for community resilience
Ntontis, E., Drury, J., Amlot, R., Rubin, G. J. and Williams, R. 2020. Endurance or decline of emergent groups following a flood disaster: implications for community resilience. International Journal of Disaster Risk Reduction . https://doi.org/10.1016/j.ijdrr.2020.101493
Anti-abortion rhetoric and the undermining of choice: Women’s agency as causing “psychological trauma” following the termination of a pregnancy
Ntontis, E. 2019. Anti-abortion rhetoric and the undermining of choice: Women’s agency as causing “psychological trauma” following the termination of a pregnancy. Political Psychology. 41 (3), pp. 517-532. https://doi.org/10.1111/pops.12634
What lies beyond social capital? the role of social psychology in building community resilience to climate change
Ntontis, E., Drury, J., Amlôt, E., Rubin, G. and Williams, R. 2019. What lies beyond social capital? the role of social psychology in building community resilience to climate change. Traumatology. https://doi.org/10.1037/trm0000221
Facilitating collective psychosocial resilience in the public in emergencies: twelve recommendations based on the social identity approach
Drury, J., Carter, H., Cocking, C., Ntontis, E., Tekin Guven, S. and Amlôt, R. 2019. Facilitating collective psychosocial resilience in the public in emergencies: twelve recommendations based on the social identity approach. Frontiers in Public Health. 7. https://doi.org/10.3389/fpubh.2019.00141
A glossary for research on human crowd dynamics
Adrian, J., Bode, N., Amos, M., Baratchi, M., Beermann, M., Boltes, M., Corbetta, A., Dezecache, G., Drury, J., Fu, Z., Geraerts, R., Gwynne, S., Hofinger, G., Hunt, A., Kanters, T., Kneidl, A., Konya, K., Köster, G., Küpper, M., Michalareas, G., Neville, F., Ntontis, E., Reicher, S., Ronchi, E., Schadschneider, A., Seyfried, A., Shipman, A., Sieben, A., Spearpoint, M., Sullivan, G., Templeton, A., Toschi, F., Yücel, Z., Zanlungo, F., Zuriguel, I., Van der Wal, N., van Schadewijk, F., von Krüchten, C. and Wijermans, N. 2019. A glossary for research on human crowd dynamics. Collective Dynamics. 4, pp. 1-13. https://doi.org/10.17815/CD.2019.19
Community resilience and flooding in UK guidance: a critical review of concepts, definitions, and their implications
Ntontis, E., Drury, J., Amlôt, R., Rubin, G. and Williams, R. 2018. Community resilience and flooding in UK guidance: a critical review of concepts, definitions, and their implications. Journal of Contingencies and Crisis Management. https://doi.org/10.1111/1468-5973.12223
Keep safe: the development of a manualised group CBT intervention for adolescents with ID who display harmful sexual behaviours.
Malovic, A., Rossiter, R. and Murphy, G. 2018. Keep safe: the development of a manualised group CBT intervention for adolescents with ID who display harmful sexual behaviours. Journal of Intellectual Disabilities and Offending Behaviour. 9 (1), pp. 49-58. https://doi.org/10.1108/JIDOB-10-2017-0023
PhD supervisors and faculty members might help to avoid burnout as well as enhance engagement and organisational citizenship behaviour (OCB) among PhD students.
Saavedra, P., Ntontis, E. and Kyprianides, A. 2018. PhD supervisors and faculty members might help to avoid burnout as well as enhance engagement and organisational citizenship behaviour (OCB) among PhD students. University of Sussex. https://doi.org/10.20919/Psych(2019).001
Framing a ‘social problem': emotion in anti-abortion activists' depiction of the abortion debate
Ntontis, E. and Hopkins, N. 2018. Framing a ‘social problem': emotion in anti-abortion activists' depiction of the abortion debate. British Journal of Social Psychology. 57 (3), pp. 666-683. https://doi.org/10.1111/bjso.12249
Emergent social identities in a flood: implications for community psychosocial resilience
Ntontis, E., Drury, J., Amlôt, R., Rubin, G. and Williams, R. 2017. Emergent social identities in a flood: implications for community psychosocial resilience. Journal of Community & Applied Social Psychology. 28 (1), pp. 3-14. https://doi.org/10.1002/casp.2329