Cited by 201Pediatric Pain Management TechniquesFamily Support in IllnessFamily and Disability Support Research

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Being a parent of the adolescent with complex chronic pain: An interpretative phenomenological analysis

Jordan, Abbie L., Eccleston, Christopher, Osborn, Mike·2007·European Journal of Pain

DOI 10.1016/j.ejpain.2005.12.012

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Abstract

BACKGROUND: Previous quantitative research has shown that parents of adolescents with chronic pain report elevated levels of emotional distress in addition to limitations in social and family functioning. AIM: This study aimed to further explore this parental impact by employing qualitative methodology to investigate parental experiences of caring for an adolescent with chronic pain. METHODS: A sample of 17 parents/carers of adolescents with chronic pain was selected from two UK tertiary clinic sites. Participants were 11 mothers, five fathers, and one grandmother (primary caregiver). Four focus groups with parents/carers were conducted to discuss the impact of caring for an adolescent with chronic pain on the parent/carer. Transcripts were analysed using interpretative phenomenological analysis (IPA). FINDINGS: Data analysis revealed two superordinate themes that captured the extensive, and largely negative, impact of being a parent of an adolescent with chronic pain. These themes were labelled 'struggle for control and coherence' and 'a very different life'. Both themes represent a fundamental parental struggle to adapt to a life very different than expected, a life fraught with uncertainty, fear, distress and loss. CONCLUSIONS: Parents who are unable to achieve the relief of their adolescent's chronic pain and suffering report significant personal distress that is exemplified by the repetitive search for legitimacy of their child's pain in 'diagnosis'. In the absence of diagnosis parents reported an unwelcome suspension in an unusual pattern of parenting, resembling the infant phase of parenting.

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Authors: Jordan, A. L., Eccleston, C., & Osborn, M.
Affiliations: Royal National Hospital for Rheumatic Diseases (GB)
Royal United Hospital (GB)
Corresponding author: Eccleston, Christopher
ORCID: Jordan, Abbie L.
Eccleston, Christopher
Venue: European Journal of Pain
Publisher: Wiley
Published: 2007-01
Volume: 11
Issue: 1
Pages: 49-49
ISSN: 1090-3801 (ISSN-L)
1532-2149
DOI: 10.1016/j.ejpain.2005.12.012
OpenAlex: W1985168505
Cited by: 201
References: 28
Citations by year: 2026: 6 · 2025: 7 · 2024: 10 · 2023: 10 · 2022: 8 · 2021: 17 · 2020: 10 · 2019: 18 · 2018: 14 · 2017: 9 · 2016: 11 · 2015: 8 · 2014: 8 · 2013: 12 · 2012: 10
FWCI: 5.57
Type: journal article
Language: en
Open access: closed
Licence: onlinelibrary.wiley.com/termsAndConditions#vor (vor, 1836 d)
Locations: European Journal of Pain (publishedVersion)
PubMed (publishedVersion)
Research Space (submittedVersion)
Topics: Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Pediatric Pain Management Techniques
Social Sciences › Psychology › Clinical Psychology › Family Support in Illness
Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
Keywords: parental experiences, parental emotional distress, family functioning, loss of control, uncertainty, caregiver burden
MeSH terms: Activities of Daily Living, Adolescent, Adult, Age Factors, Aged, Anxiety, Chronic Disease, Fear, Female, Humans, Male, Middle Aged, Models, Psychological, Intractable Pain, Parent-Child Relations, Quality of Life, Stress, Psychological, Caregivers, Early Diagnosis

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Being a parent of the adolescent with complex chronic pain: An interpretative phenomenological analysis

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