Jointly managing arthritis: Information needs of children with juvenile idiopathic arthritis (JIA) and their parents

Jennifer N. Stinson; Brian M. Feldman; Ciaran M. Duffy; Adam M. Huber; Lori B. Tucker; Patrick J. McGrath; Shirley M.L. Tse; Ross Hetherington; Lynn R. Spiegel; Sarah Campillo; Susanne Benseler; Navreet Gill; Meghan E. White; Natalie Baker; Abi Vijenthira

doi:10.1177/1367493511430679

Jointly managing arthritis: Information needs of children with juvenile idiopathic arthritis (JIA) and their parents

Jennifer N. Stinson, Brian M. Feldman, Ciaran M. Duffy, Adam M. Huber, Lori B. Tucker, Patrick J. McGrath, Shirley M.L. Tse, Ross Hetherington, Lynn R. Spiegel, Sarah Campillo, Susanne Benseler, Navreet Gill, Meghan E. White, Natalie Baker, Abi Vijenthira

Research output: Contribution to journal › Review article › peer-review

24 Citations (Scopus)

Abstract

The objective of this article is to explore information needs of children with juvenile idiopathic arthritis (JIA) and their parents in order to develop a web-based psychoeducational program aimed at improving their quality of life. A qualitative study design was used. A purposive sample of children (n = 41; 8-11 years) with JIA and parents (n = 48) participated in parent-child interviews (n = 29), and four child-focus and four parent-focus group interviews. Transcribed data were organized into categories that reflected emerging themes. Findings uncovered three major themes: "living with JIA", "jointly managing JIA", and "need for a web-based program of JIA information and social Support". Subthemes for "Living with JIA" were as follows: "impact on participation", "worry and distress", and "receiving social support". Subthemes under "Jointly Managing JIA" included "obtaining JIA information", "communication and advocacy", and "strategies to manage JIA". Participants endorsed a web-based program as a way to access JIA information and social support. In order to jointly manage JIA, participants expressed the need for disease-specific information, management strategies, and social support and felt that the Internet was acceptable for delivering these disease-management strategies. Findings from this study will inform development and evaluation of an online program to help children and parents jointly manage JIA.

Original language	English
Pages (from-to)	124-140
Number of pages	17
Journal	Journal of Child Health Care
Volume	16
Issue number	2
DOIs	https://doi.org/10.1177/1367493511430679
Publication status	Published - Jun 2012
Externally published	Yes

Bibliographical note

Funding Information:
Funding for this study was provided by the Canadian Arthritis Network. Jennifer Stinson’s work was supported by Canadian Institute of Health Research Post-Doctoral Research Fellowship and Canadian Child Health Clinician Scientist Program Career Enhancement Award. Drs Feldman and McGrath hold Canada Research Chairs.

ASJC Scopus Subject Areas

Pediatrics, Perinatology, and Child Health
Pediatrics

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Stinson, J. N., Feldman, B. M., Duffy, C. M., Huber, A. M., Tucker, L. B., McGrath, P. J., Tse, S. M. L., Hetherington, R., Spiegel, L. R., Campillo, S., Benseler, S., Gill, N., White, M. E., Baker, N., & Vijenthira, A. (2012). Jointly managing arthritis: Information needs of children with juvenile idiopathic arthritis (JIA) and their parents. Journal of Child Health Care, 16(2), 124-140. https://doi.org/10.1177/1367493511430679

Stinson, JN, Feldman, BM, Duffy, CM, Huber, AM, Tucker, LB, McGrath, PJ, Tse, SML, Hetherington, R, Spiegel, LR, Campillo, S, Benseler, S, Gill, N, White, ME, Baker, N & Vijenthira, A 2012, 'Jointly managing arthritis: Information needs of children with juvenile idiopathic arthritis (JIA) and their parents', Journal of Child Health Care, vol. 16, no. 2, pp. 124-140. https://doi.org/10.1177/1367493511430679

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abstract = "The objective of this article is to explore information needs of children with juvenile idiopathic arthritis (JIA) and their parents in order to develop a web-based psychoeducational program aimed at improving their quality of life. A qualitative study design was used. A purposive sample of children (n = 41; 8-11 years) with JIA and parents (n = 48) participated in parent-child interviews (n = 29), and four child-focus and four parent-focus group interviews. Transcribed data were organized into categories that reflected emerging themes. Findings uncovered three major themes: {"}living with JIA{"}, {"}jointly managing JIA{"}, and {"}need for a web-based program of JIA information and social Support{"}. Subthemes for {"}Living with JIA{"} were as follows: {"}impact on participation{"}, {"}worry and distress{"}, and {"}receiving social support{"}. Subthemes under {"}Jointly Managing JIA{"} included {"}obtaining JIA information{"}, {"}communication and advocacy{"}, and {"}strategies to manage JIA{"}. Participants endorsed a web-based program as a way to access JIA information and social support. In order to jointly manage JIA, participants expressed the need for disease-specific information, management strategies, and social support and felt that the Internet was acceptable for delivering these disease-management strategies. Findings from this study will inform development and evaluation of an online program to help children and parents jointly manage JIA.",

author = "Stinson, {Jennifer N.} and Feldman, {Brian M.} and Duffy, {Ciaran M.} and Huber, {Adam M.} and Tucker, {Lori B.} and McGrath, {Patrick J.} and Tse, {Shirley M.L.} and Ross Hetherington and Spiegel, {Lynn R.} and Sarah Campillo and Susanne Benseler and Navreet Gill and White, {Meghan E.} and Natalie Baker and Abi Vijenthira",

note = "Funding Information: Funding for this study was provided by the Canadian Arthritis Network. Jennifer Stinson{\textquoteright}s work was supported by Canadian Institute of Health Research Post-Doctoral Research Fellowship and Canadian Child Health Clinician Scientist Program Career Enhancement Award. Drs Feldman and McGrath hold Canada Research Chairs.",

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AU - Stinson, Jennifer N.

AU - Feldman, Brian M.

AU - Duffy, Ciaran M.

AU - Huber, Adam M.

AU - Tucker, Lori B.

AU - McGrath, Patrick J.

AU - Tse, Shirley M.L.

AU - Hetherington, Ross

AU - Spiegel, Lynn R.

AU - Campillo, Sarah

AU - Benseler, Susanne

AU - Gill, Navreet

AU - White, Meghan E.

AU - Baker, Natalie

AU - Vijenthira, Abi

N1 - Funding Information: Funding for this study was provided by the Canadian Arthritis Network. Jennifer Stinson’s work was supported by Canadian Institute of Health Research Post-Doctoral Research Fellowship and Canadian Child Health Clinician Scientist Program Career Enhancement Award. Drs Feldman and McGrath hold Canada Research Chairs.

PY - 2012/6

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N2 - The objective of this article is to explore information needs of children with juvenile idiopathic arthritis (JIA) and their parents in order to develop a web-based psychoeducational program aimed at improving their quality of life. A qualitative study design was used. A purposive sample of children (n = 41; 8-11 years) with JIA and parents (n = 48) participated in parent-child interviews (n = 29), and four child-focus and four parent-focus group interviews. Transcribed data were organized into categories that reflected emerging themes. Findings uncovered three major themes: "living with JIA", "jointly managing JIA", and "need for a web-based program of JIA information and social Support". Subthemes for "Living with JIA" were as follows: "impact on participation", "worry and distress", and "receiving social support". Subthemes under "Jointly Managing JIA" included "obtaining JIA information", "communication and advocacy", and "strategies to manage JIA". Participants endorsed a web-based program as a way to access JIA information and social support. In order to jointly manage JIA, participants expressed the need for disease-specific information, management strategies, and social support and felt that the Internet was acceptable for delivering these disease-management strategies. Findings from this study will inform development and evaluation of an online program to help children and parents jointly manage JIA.

AB - The objective of this article is to explore information needs of children with juvenile idiopathic arthritis (JIA) and their parents in order to develop a web-based psychoeducational program aimed at improving their quality of life. A qualitative study design was used. A purposive sample of children (n = 41; 8-11 years) with JIA and parents (n = 48) participated in parent-child interviews (n = 29), and four child-focus and four parent-focus group interviews. Transcribed data were organized into categories that reflected emerging themes. Findings uncovered three major themes: "living with JIA", "jointly managing JIA", and "need for a web-based program of JIA information and social Support". Subthemes for "Living with JIA" were as follows: "impact on participation", "worry and distress", and "receiving social support". Subthemes under "Jointly Managing JIA" included "obtaining JIA information", "communication and advocacy", and "strategies to manage JIA". Participants endorsed a web-based program as a way to access JIA information and social support. In order to jointly manage JIA, participants expressed the need for disease-specific information, management strategies, and social support and felt that the Internet was acceptable for delivering these disease-management strategies. Findings from this study will inform development and evaluation of an online program to help children and parents jointly manage JIA.

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Jointly managing arthritis: Information needs of children with juvenile idiopathic arthritis (JIA) and their parents

Abstract

Bibliographical note

ASJC Scopus Subject Areas

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