A qualitative content analysis of the experience of hypospadias care: The importance of owning your own narrative
ObjectivesThere is a lack of studies on men's individual experiences of living with hypospadias. We aimed to explore the personal experiences of having hypospadias in relation to healthcare and surgery.Subjects and methodsPurposive sampling was used to include men (aged 18 and over) with hyposp...
| Main Authors: | , , , , , , , |
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2023-02-01
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| Series: | Frontiers in Pediatrics |
| Subjects: | |
| Online Access: | https://www.frontiersin.org/articles/10.3389/fped.2023.1118586/full |
| _version_ | 1797903964934504448 |
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| author | Lottie Phillips Nicklas Dennermalm Lisa Örtqvist Lisa Örtqvist Hedvig Engberg Hedvig Engberg Gundela Holmdahl Gundela Holmdahl Magdalena Fossum Magdalena Fossum Anders Möller Agneta Nordenskjöld Agneta Nordenskjöld |
| author_facet | Lottie Phillips Nicklas Dennermalm Lisa Örtqvist Lisa Örtqvist Hedvig Engberg Hedvig Engberg Gundela Holmdahl Gundela Holmdahl Magdalena Fossum Magdalena Fossum Anders Möller Agneta Nordenskjöld Agneta Nordenskjöld |
| author_sort | Lottie Phillips |
| collection | DOAJ |
| description | ObjectivesThere is a lack of studies on men's individual experiences of living with hypospadias. We aimed to explore the personal experiences of having hypospadias in relation to healthcare and surgery.Subjects and methodsPurposive sampling was used to include men (aged 18 and over) with hypospadias representing different phenotypes (from distal to proximal) and ages in order to maximise the variation and richness of our data. Seventeen informants, aged 20–49, were included in the study. In-depth semi-structured interviews were conducted between 2019 and 2021. Inductive qualitative content analysis was used to analyse the data.ResultsWe identified three categories: (1) Having surgery, which comprised the decision to operate, the experience of having surgery, and the outcomes of surgery; (2) Going to the doctor, which focused on follow-up care, re-entering care in adolescence or adulthood, and the experience of healthcare interactions; (3) Being informed, both about hypospadias in general, as well as about your specific body and medical history. There was overall a large variation in experiences. The latent theme across the data was the importance of owning your own narrative.ConclusionThe experience of men with hypospadias in healthcare is complex and varied, highlighting the difficulty of fully standardised care. Based on our results, we suggest that follow-up should be offered in adolescence, and that ways of accessing care for late onset complications be made clear. We further suggest clearer consideration for the psychological and sexual aspects of hypospadias. Consent and integrity in all aspects and all ages of hypospadias care should be adapted to the maturity of the individual. Access to trustworthy information is key, both directly from educated healthcare staff and if possible, from websites or patient-led forums. Healthcare can play a key role in providing the growing individual with tools to understand and address concerns that may develop relating to their hypospadias through life, giving them ownership over their own narrative. |
| first_indexed | 2024-04-10T09:41:13Z |
| format | Article |
| id | doaj.art-bfe59f2c9a994cc5824ebc639eea57c0 |
| institution | Directory Open Access Journal |
| issn | 2296-2360 |
| language | English |
| last_indexed | 2024-04-10T09:41:13Z |
| publishDate | 2023-02-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Pediatrics |
| spelling | doaj.art-bfe59f2c9a994cc5824ebc639eea57c02023-02-17T09:06:10ZengFrontiers Media S.A.Frontiers in Pediatrics2296-23602023-02-011110.3389/fped.2023.11185861118586A qualitative content analysis of the experience of hypospadias care: The importance of owning your own narrativeLottie Phillips0Nicklas Dennermalm1Lisa Örtqvist2Lisa Örtqvist3Hedvig Engberg4Hedvig Engberg5Gundela Holmdahl6Gundela Holmdahl7Magdalena Fossum8Magdalena Fossum9Anders Möller10Agneta Nordenskjöld11Agneta Nordenskjöld12Department of Women’s and Children’s Health and Center of Molecular Medicine, Karolinska Institutet, Stockholm, SwedenDepartment of Social Work, Stockholm University, Stockholm, SwedenDepartment of Women’s and Children’s Health and Center of Molecular Medicine, Karolinska Institutet, Stockholm, SwedenDepartment of Paediatric Surgery, Astrid Lindgren Children's Hospital, Karolinska University Hospital, Stockholm, SwedenDepartment of Women’s and Children’s Health and Center of Molecular Medicine, Karolinska Institutet, Stockholm, SwedenDepartment of Gynecology and Reproductive Medicine, Karolinska University Hospital, Stockholm, SwedenDepartment of Women’s and Children’s Health and Center of Molecular Medicine, Karolinska Institutet, Stockholm, SwedenDepartment of Paediatric Surgery, Astrid Lindgren Children's Hospital, Karolinska University Hospital, Stockholm, SwedenDepartment of Women’s and Children’s Health and Center of Molecular Medicine, Karolinska Institutet, Stockholm, SwedenDepartment of Paediatric Surgery and Faculty of Health and Medical Sciences, Rigshospitalet, University Hospital of Copenhagen, Copenhagen, DenmarkSchool of Public Health and Community Medicine, Institute of Medicine, University of Gothenburg, Gothenburg, SwedenDepartment of Women’s and Children’s Health and Center of Molecular Medicine, Karolinska Institutet, Stockholm, SwedenDepartment of Paediatric Surgery, Astrid Lindgren Children's Hospital, Karolinska University Hospital, Stockholm, SwedenObjectivesThere is a lack of studies on men's individual experiences of living with hypospadias. We aimed to explore the personal experiences of having hypospadias in relation to healthcare and surgery.Subjects and methodsPurposive sampling was used to include men (aged 18 and over) with hypospadias representing different phenotypes (from distal to proximal) and ages in order to maximise the variation and richness of our data. Seventeen informants, aged 20–49, were included in the study. In-depth semi-structured interviews were conducted between 2019 and 2021. Inductive qualitative content analysis was used to analyse the data.ResultsWe identified three categories: (1) Having surgery, which comprised the decision to operate, the experience of having surgery, and the outcomes of surgery; (2) Going to the doctor, which focused on follow-up care, re-entering care in adolescence or adulthood, and the experience of healthcare interactions; (3) Being informed, both about hypospadias in general, as well as about your specific body and medical history. There was overall a large variation in experiences. The latent theme across the data was the importance of owning your own narrative.ConclusionThe experience of men with hypospadias in healthcare is complex and varied, highlighting the difficulty of fully standardised care. Based on our results, we suggest that follow-up should be offered in adolescence, and that ways of accessing care for late onset complications be made clear. We further suggest clearer consideration for the psychological and sexual aspects of hypospadias. Consent and integrity in all aspects and all ages of hypospadias care should be adapted to the maturity of the individual. Access to trustworthy information is key, both directly from educated healthcare staff and if possible, from websites or patient-led forums. Healthcare can play a key role in providing the growing individual with tools to understand and address concerns that may develop relating to their hypospadias through life, giving them ownership over their own narrative.https://www.frontiersin.org/articles/10.3389/fped.2023.1118586/fullhypospadiaspatient perspectivedisorders of sexual development (DSD)in-depth interviewqualitative content analysis |
| spellingShingle | Lottie Phillips Nicklas Dennermalm Lisa Örtqvist Lisa Örtqvist Hedvig Engberg Hedvig Engberg Gundela Holmdahl Gundela Holmdahl Magdalena Fossum Magdalena Fossum Anders Möller Agneta Nordenskjöld Agneta Nordenskjöld A qualitative content analysis of the experience of hypospadias care: The importance of owning your own narrative Frontiers in Pediatrics hypospadias patient perspective disorders of sexual development (DSD) in-depth interview qualitative content analysis |
| title | A qualitative content analysis of the experience of hypospadias care: The importance of owning your own narrative |
| title_full | A qualitative content analysis of the experience of hypospadias care: The importance of owning your own narrative |
| title_fullStr | A qualitative content analysis of the experience of hypospadias care: The importance of owning your own narrative |
| title_full_unstemmed | A qualitative content analysis of the experience of hypospadias care: The importance of owning your own narrative |
| title_short | A qualitative content analysis of the experience of hypospadias care: The importance of owning your own narrative |
| title_sort | qualitative content analysis of the experience of hypospadias care the importance of owning your own narrative |
| topic | hypospadias patient perspective disorders of sexual development (DSD) in-depth interview qualitative content analysis |
| url | https://www.frontiersin.org/articles/10.3389/fped.2023.1118586/full |
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