Top

Gepubliceerd in:

16-07-2021 | Original Paper

Resilience Factors in Paediatric Inflammatory Bowel Disease: Health Care Provider, Parent and Youth Perspectives

Auteurs: Sara Ahola Kohut, Paula Forgeron, Meghan McMurtry, Natalie Weiser, Armanda Iuliano, Jennifer Stinson

Gepubliceerd in: Journal of Child and Family Studies | Uitgave 9/2021

Abstract

Exploring factors related to resilience in youth with inflammatory bowel disease may elucidate modifiable risk factors and inform interventions. Yet, how resilience factors may impact positive adaptation for youth with inflammatory bowel disease is not clear. We conducted an exploratory qualitative study on specific factors that bolster resilience in youth with IBD from health care provider, parent and youth perspectives. Twelve multidisciplinary health care providers, 15 parents of youth with IBD, and 15 youth with IBD were interviewed about their perspectives on resilience in youth with IBD. Inductive content analysis was conducted on the transcripts using a stepwise process of open coding, category creation, and abstraction. Higher level categories were identified across the three participant groups: individual (acceptance of IBD, openness about living with IBD, upholding a sense of self, sense of control), familial (disease self-management), and environmental (relationship with the medical team and meaningful social support). This is the first study to highlight that these three participant groups identified specific characteristics that could be fostered in routine IBD care and targeted by interventions aimed at bolstering resilience in youth with IBD.

vorige artikel Parent and Primary Care Provider Priorities for Wellness in Early Childhood: A Discrete Choice Experiment

volgende artikel Parenting among Settled Migrants from Southern Africa: A Qualitative Evidence Synthesis

Alleen toegankelijk voor geautoriseerde gebruikers

Benchimol, E. I., Fortinsky, K. J., Gozdyra, P., Van den Heuvel, M., Van Limbergen, J., & Griffiths, A. M. (2011). Epidemiology of pediatric inflammatory bowel disease: A systematic review of international trends. Inflammatory Bowel Diseases, 17(1), 423–439. https://doi.org/10.1002/ibd.21349.CrossRefPubMed

Bray, J., Fernandes, A., Nguyen, G. C., Otley, A. R., Heatherington, J., Stretton, J., Bollegala, N., & Benchimol, E. I. (2016). The challenges of living with inflammatory bowel disease: Summary of a summit on patient and healthcare provider perspectives. Canadian Journal of Gastroenterology and Hepatology. https://doi.org/10.1155/2016/9430942.

Carter, B., Rouncefield-Swales, A., Bray, L., Blake, L., Allen, S., Probert, C., Crook, K., & Qualter, P. (2020). “I don’t like to make a big thing out of it”: A qualitative interview-based study exploring factors affecting whether young people tell or do not tell their friends about their IBD. International Journal of Chronic Diseases. https://doi.org/10.1155/2020/1059025.

Cousins, L. A., Cohen, L. L., & Venable, C. (2015). Risk and resilience in pediatric chronic pain: Exploring the protective role of optimism. Journal of Pediatric Psychology, 40(9), 934–942. https://doi.org/10.1093/jpepsy/jsu094.CrossRefPubMed

Cousins, L. A., Kalapurakkel, S., Cohen, L. L., & Simons, L. E. (2015). Topical review: Resilience resources and mechanisms in pediatric chronic pain. Journal of Pediatric Psychology, 40(9), 840–845. https://doi.org/10.1093/jpepsy/jsv037.CrossRefPubMedPubMedCentral

Easterlin, M. C., Berdahl, C. T., Rabizadeh, S., Spiegel, B., Agoratus, L., Hoover, C., & Dudovitz, R. (2020). Child and family perspectives on adjustment to and coping with pediatric inflammatory bowel disease. Journal of Pediatric Gastroenterology and Nutrition, 71(1), e16–e27. https://doi.org/10.1097/MPG.0000000000002693.CrossRefPubMed

Eddy, L., & Cruz, M. (2007). The relationship between fatigue and quality of life in children with chronic health problems: A systematic review. Journal for Specialists in Pediatric Nursing, 12(2), 105–114. https://doi.org/10.1111/j.1744-6155.2007.00099.x.CrossRefPubMed

Elo, S., & Kyngäs, H. (2008). The qualitative content analysis process. Journal of Advanced Nursing, 62(1), 107–115. https://doi.org/10.1111/j.1365-2648.2007.04569.x.CrossRefPubMed

Esteve, R., & Ramírez-Maestre, C. (2013). Pain fear avoidance and pain acceptance: A cross-sectional study comparing their influence on adjustment to chronic pain across three samples of patients. Annals of Behavioral Medicine, 46(2), 169–180. https://doi.org/10.1007/s12160-013-9499-1.CrossRefPubMed

Ezri, J., Marques-Vidal, P., & Nydegger, A. (2012). Impact of disease and treatments on growth and puberty of pediatric patients with inflammatory bowel disease. Digestion, 85(4), 308–319. https://doi.org/10.1159/000336766.CrossRefPubMed

Fales, J. L., Essner, B. S., Harris, M. A., & Palermo, T. M. (2014). When helping hurts: Miscarried helping in families of youth with chronic pain. Journal of Pediatric Psychology, 39(4), 427–437. https://doi.org/10.1093/jpepsy/jsu003.CrossRefPubMedPubMedCentral

Fourie, S., Jackson, D., & Aveyard, H. (2018). Living with inflammatory bowel disease: A review of qualitative research studies. International Journal of Nursing Studies, 87, 149–156. https://doi.org/10.1016/j.ijnurstu.2018.07.017.CrossRefPubMed

Goodhand, J. R., Wahed, M., Mawdsley, J. E., Farmer, A. D., Aziz, Q., & Rampton, D. S. (2012). Mood disorders in inflammatory bowel disease: relation to diagnosis, disease activity, perceived stress, and other factors. Inflammatory Bowel Diseases, 18(12), 2301–2309. https://doi.org/10.1002/ibd.22916.CrossRefPubMed

Goodin, B. R., & Bulls, H. W. (2013). Optimism and the experience of pain: benefits of seeing the glass as half full. Current Pain And Headache Reports, 17(5), 329 https://doi.org/10.1007/s11916-013-0329-8.CrossRefPubMedPubMedCentral

Greenley, R. N., Hommel, K. A., Nebel, J., Raboin, T., Li, S.-H., Simpson, P., & Mackner, L. (2010). A meta-analytic review of the psychosocial adjustment of youth with inflammatory bowel disease. Journal of Pediatric Psychology, 35(8), 857–869. https://doi.org/10.1093/jpepsy/jsp120.CrossRefPubMedPubMedCentral

Hayes, S. C., & Wilson, K. G. (1994). Acceptance and commitment therapy: Altering the verbal support for experiential avoidance. The Behavior Analyst, 17(2), 289–303. https://doi.org/10.1007/BF03392677.CrossRefPubMedPubMedCentral

Hazlewood, G. S., Rezaie, A., Borman, M., Panaccione, R., Ghosh, S., Seow, C. H., Kuenzig, E., Tomlinson, G., Siegel, C. A., & Melmed, G. Y. (2015). Comparative effectiveness of immunosuppressants and biologics for inducing and maintaining remission in Crohn’s disease: A network meta-analysis. Gastroenterology, 148(2), 344–354. https://doi.org/10.1053/j.gastro.2014.10.011.CrossRefPubMed

Higginson, A., Forgeron, P., Harrison, D., Finley, G. A., & Dick, B. D. (2019). Moving on: Transition experiences of young adults with chronic pain. Canadian Journal of Pain, 3(1), 85–97. https://doi.org/10.1080/24740527.2019.1587707.CrossRef

Jedel, S., Hoffman, A., Merriman, P., Swanson, B., Voigt, R., Rajan, K., Shaikh, M., Li, H., & Keshavarzian, A. (2014). A randomized controlled trial of mindfulness-based stress reduction to prevent flare-up in patients with inactive ulcerative colitis. Digestion, 89(2), 142–155. https://doi.org/10.1159/000356316.CrossRefPubMed

Kalapurakkel, S., Carpino, E. A., Lebel, A., & Simons, L. E. (2015). “Pain can’t stop me”: Examining pain self-efficacy and acceptance as resilience processes among youth with chronic headache. Journal of Pediatric Psychology, 40(9), 926–933. https://doi.org/10.1093/jpepsy/jsu091.CrossRefPubMed

Kalisch, R., Müller, M. B., & Tüscher, O. (2015). Advancing empirical resilience research: Authors’ Response. Behavioral and Brain Sciences, 38, e128 https://doi.org/10.1017/S0140525X15000023.CrossRef

Kaplan, G. G., & Ng, S. C. (2017). Understanding and preventing the global increase of inflammatory bowel disease. Gastroenterology, 152(2), 313–321. https://doi.org/10.1053/j.gastro.2016.10.020.CrossRefPubMed

Karadag, P., Morris, B., & Woolfall, K. (2020). The information and support needs of patients living with inflammatory bowel disease: A qualitative study. Chronic Illness. https://doi.org/10.1177/1742395320968617.CrossRefPubMed

Kluthe, C., Isaac, D. M., Hiller, K., Carroll, M., Wine, E., van Manen, M., & Huynh, H. Q. (2018). Qualitative analysis of pediatric patient and caregiver perspectives after recent diagnosis with inflammatory bowel disease. Journal of Pediatric Nursing, 38, 106–113. https://doi.org/10.1016/j.pedn.2017.11.011.CrossRefPubMed

Lawton, R., Rothbaum, R., LaRose-Wicks, M., & Washburn, J. (2014). P-129 IBD is permanent, influential, and curable? Perception of illness duration, control, treatment efficacy, and emotional response among youth with IBD. Inflammatory Bowel Diseases, 20, S80–S81. https://doi.org/10.1097/01.MIB.0000456886.12048.b2.CrossRef

Logan, D. E., Simons, L. E., & Carpino, E. A. (2012). Too sick for school? Parent influences on school functioning among children with chronic pain. Pain, 153(2), 437–443. https://doi.org/10.1016/j.pain.2011.11.004.CrossRefPubMed

Luo, D., Lin, Z., Shang, X.-C., & Li, S. (2019). “I can fight it!”: A qualitative study of resilience in people with inflammatory bowel disease. International Journal of Nursing Sciences, 6(2), 127–133. https://doi.org/10.1016/j.ijnss.2018.12.008.CrossRefPubMed

Mackner, L. M., & Crandall, W. V. (2013). Psychological aspects of IBD in children and adolescents. In P. Mamula, J. E. Markowitz, & R. N. Baldassano (Eds.), Pediatric Inflammatory Bowel Disease (pp. 483-490). Springer New York. https://doi.org/10.1007/978-1-4614-5061-0_44.

Maddux, M. H., Bass, J. A., Geraghty-Sirridge, C., Carpenter, E., & Christenson, K. (2013). Assessing psychosocial functioning among youth with newly diagnosed inflammatory bowel disease (IBD): An interdisciplinary clinic approach. Clinical Practice in Pediatric Psychology, 1(4), 333–343. https://doi.org/10.1037/cpp0000037.CrossRef

Malhi, G. S., Das, P., Bell, E., Mattingly, G., & Mannie, Z. (2019). Modelling resilience in adolescence and adversity: A novel framework to inform research and practice. Translational Psychiatry, 9(1), 1–16. https://doi.org/10.1038/s41398-019-0651-y.CrossRef

Malterud, K., Siersma, V. D., & Guassora, A. D. (2016). Sample size in qualitative interview studies: Guided by information power. Qualitative Health Research, 26(13), 1753–1760. https://doi.org/10.1177/1049732315617444.CrossRefPubMed

Nguyen, T., Henderson, D., Stewart, D., Hlyva, O., Punthakee, Z., & Gorter, J. (2016). You never transition alone! Exploring the experiences of youth with chronic health conditions, parents and healthcare providers on self‐management. Child: Care, Health and Development, 42(4), 464–472. https://doi.org/10.1111/cch.12334.CrossRef

Peeters, M. A., Hilberink, S. R., & van Staa, A. (2014). The road to independence: Lived experiences of youth with chronic conditions and their parents compared. Journal of Pediatric Rehabilitation Medicine, 7(1), 33–42. https://doi.org/10.3233/PRM-140272.CrossRefPubMed

Phipps, S., Long, A. M., & Ogden, J. (2007). Benefit finding scale for children: Preliminary findings from a childhood cancer population. Journal of Pediatric Psychology, 32(10), 1264–1271. https://doi.org/10.1093/jpepsy/jsl052.CrossRefPubMed

Reigada, L. C., Hoogendoorn, C. J., Walsh, L. C., Lai, J., Szigethy, E., Cohen, B. H., Bao, R., Isola, K., & Benkov, K. J. (2015). Anxiety symptoms and disease severity in children and adolescents with crohn disease. Journal of Pediatric Gastroenterology and Nutrition, 60(1), 30–35. https://doi.org/10.1097/mpg.0000000000000552.CrossRefPubMed

Reiss, J. G., Gibson, R. W., & Walker, L. R. (2005). Health care transition: Youth, family, and provider perspectives. Pediatrics, 115(1), 112–120. https://doi.org/10.1542/peds.2004-1321.CrossRefPubMed

Reiss, M., & Sandborn, W. J. (2015). The role of psychosocial care in adapting to health care reform. Clinical Gastroenterology and Hepatology, 13(13), 2219–2224. https://doi.org/10.1016/j.cgh.2015.09.010.CrossRefPubMed

Rocchi, A., Benchimol, E. I., Bernstein, C. N., Bitton, A., Feagan, B., Panaccione, R., Glasgow, K. W., Fernandes, A., & Ghosh, S. (2012). Inflammatory bowel disease: a Canadian burden of illness review. Canadian Journal of Gastroenterology, 26(11), 811–817. https://doi.org/10.1155/2012/984575.CrossRefPubMedPubMedCentral

Rouncefield-Swales, A., Carter, B., Bray, L., Blake, L., Allen, S., Probert, C., Crook, K., & Qualter, P. (2020). Sustaining, forming, and letting go of friendships for young people with inflammatory bowel disease (IBD): A qualitative interview-based study. International Journal of Chronic Diseases. https://doi.org/10.1155/2020/7254972.

Rowan, C. R., Wynne, B., McHugh, L., Keegan, D., Byrne, K., Hartery, K., Dooley, B., & Mulcahy, H. E. (2017). A randomised controlled trial of acceptance and commitment therapy (ACT) for the treatment of stress in inflammatory bowel disease. Gastroenterology, 152(5), S138 https://doi.org/10.1016/S0016-5085(17)30793-X.CrossRef

Segal, Z. V., Williams, J. M. G., & Teasdale, J. D. (2002). Mindfulness-based cognitive therapy for depression: A new approach to preventing relapse. Psychotherapy Research, 13(1), 123–125. https://doi.org/10.1080/713869628.CrossRef

Singh, H., Nugent, Z., Brownell, M., Targownik, L. E., Roos, L. L., & Bernstein, C. N. (2015). Academic performance among children with inflammatory bowel disease: A population-based study. The Journal of Pediatrics, 166(5), 1128–1133. https://doi.org/10.1016/j.jpeds.2014.12.010.CrossRefPubMed

Sirois, F. M., & Hirsch, J. K. (2017). A longitudinal study of the profiles of psychological thriving, resilience, and loss in people with inflammatory bowel disease. British Journal of Health Psychology, 22(4), 920–939. https://doi.org/10.1111/bjhp.12262.CrossRefPubMed

Skrautvol, K., & Nåden, D. (2017). Tolerance limits, self-understanding, and stress resilience in integrative recovery of inflammatory bowel disease. Holistic Nursing Practice, 31(1), 30 https://doi.org/10.1097/HNP.0000000000000189.CrossRefPubMed

Stidham, R., Lee, T., Higgins, P., Deshpande, A., Sussman, D., Singal, A., Elmunzer, B., Saini, S., Vijan, S., & Waljee, A. (2014). Systematic review with network meta‐analysis: The efficacy of anti‐tumour necrosis factor‐alpha agents for the treatment of ulcerative colitis. Alimentary Pharmacology & Therapeutics, 39(7), 660–671. https://doi.org/10.1111/apt.12644.CrossRef

Sweeney, L., Moss-Morris, R., Czuber-Dochan, W., Belotti, L., Kabeli, Z., & Norton, C. (2019). ‘It’s about willpower in the end. You’ve got to keep going’: A qualitative study exploring the experience of pain in inflammatory bowel disease. British Journal of Pain, 13(4), 201–213. https://doi.org/10.1177/2049463719844539.CrossRefPubMedPubMedCentral

Wood, A. M., & Tarrier, N. (2010). Positive clinical psychology: A new vision and strategy for integrated research and practice. Clinical Psychology Review, 30(7), 819–829. https://doi.org/10.1016/j.cpr.2010.06.003.CrossRefPubMed

Wright, M. A., Wren, A. A., Somers, T. J., Goetz, M. C., Fras, A. M., Huh, B. K., Rogers, L. L., & Keefe, F. J. (2011). Pain acceptance, hope, and optimism: Relationships to pain and adjustment in patients with chronic musculoskeletal pain. The Journal of Pain, 12(11), 1155–1162. https://doi.org/10.1016/j.jpain.2011.06.002.CrossRefPubMed

Zautra, A. J., Johnson, L. M., & Davis, M. C. (2005). Positive affect as a source of resilience for women in chronic pain. Journal of Consulting and Clinical Psychology, 73(2), 212–220. https://doi.org/10.1037/0022-006x.73.2.212.CrossRefPubMedPubMedCentral

Titel: Resilience Factors in Paediatric Inflammatory Bowel Disease: Health Care Provider, Parent and Youth Perspectives
Auteurs: Sara Ahola Kohut
Paula Forgeron
Meghan McMurtry
Natalie Weiser
Armanda Iuliano
Jennifer Stinson
Publicatiedatum: 16-07-2021
Uitgeverij: Springer US
Gepubliceerd in: Journal of Child and Family Studies / Uitgave 9/2021
Print ISSN: 1062-1024
Elektronisch ISSN: 1573-2843
DOI: https://doi.org/10.1007/s10826-021-02040-z

Andere artikelen Uitgave 9/2021

A Systematic Review of Sleep Associations in Parents and Children

Review

Interactive Effects of Parental Separation and Socioeconomic Status on Child Sleep Quality and Child Development

Original Paper

Parent and Child Factors Associated with Household versus Community Adversity among Black and Hispanic Children

Open Access
Original Paper

National Norms and Correlates of the PHQ-8 and GAD-7 in Parents of School-age Children

Original Paper

The Self-efficacy for Parenting Adolescents Scale: Development and Initial Validation

Original Paper

Predicting Quality of Life in Caregivers of Children with Cancer Within One Year Post-Diagnosis

Original Paper

Bohn Stafleu van Loghum

Welkom bij THIM Hogeschool voor Fysiotherapie & Bohn Stafleu van Loghum

Registreer

Login

Resilience Factors in Paediatric Inflammatory Bowel Disease: Health Care Provider, Parent and Youth Perspectives

Abstract

Andere artikelen Uitgave 9/2021

A Systematic Review of Sleep Associations in Parents and Children

Interactive Effects of Parental Separation and Socioeconomic Status on Child Sleep Quality and Child Development

Parent and Child Factors Associated with Household versus Community Adversity among Black and Hispanic Children

National Norms and Correlates of the PHQ-8 and GAD-7 in Parents of School-age Children

The Self-efficacy for Parenting Adolescents Scale: Development and Initial Validation

Predicting Quality of Life in Caregivers of Children with Cancer Within One Year Post-Diagnosis

Bohn Stafleu van Loghum

Welkom bij THIM Hogeschool voor Fysiotherapie & Bohn Stafleu van Loghum

Registreer

Login

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Log in om toegang te krijgen

A Systematic Review of Sleep Associations in Parents and Children

Interactive Effects of Parental Separation and Socioeconomic Status on Child Sleep Quality and Child Development

Parent and Child Factors Associated with Household versus Community Adversity among Black and Hispanic Children

National Norms and Correlates of the PHQ-8 and GAD-7 in Parents of School-age Children

The Self-efficacy for Parenting Adolescents Scale: Development and Initial Validation

Predicting Quality of Life in Caregivers of Children with Cancer Within One Year Post-Diagnosis