Parental coping with uncertainties along the severe combined immunodeficiency journey
Abstract Background Severe combined immunodeficiency (SCID) is a group of rare genetic disorders that cause disruption in immune system functioning. Parents of children with SCID experience many uncertainties related to their child’s diagnosis, treatment, recovery, and quality of life. To fully unde...
| Main Authors: | , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
BMC
2022-10-01
|
| Series: | Orphanet Journal of Rare Diseases |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s13023-022-02554-9 |
| _version_ | 1811335356975415296 |
|---|---|
| author | Oksana Kutsa Sara M. Andrews Erin Mallonee Angela Gwaltney Alissa Creamer Paul K. J. Han Melissa Raspa Barbara B. Biesecker |
| author_facet | Oksana Kutsa Sara M. Andrews Erin Mallonee Angela Gwaltney Alissa Creamer Paul K. J. Han Melissa Raspa Barbara B. Biesecker |
| author_sort | Oksana Kutsa |
| collection | DOAJ |
| description | Abstract Background Severe combined immunodeficiency (SCID) is a group of rare genetic disorders that cause disruption in immune system functioning. Parents of children with SCID experience many uncertainties related to their child’s diagnosis, treatment, recovery, and quality of life. To fully understand parents’ experiences throughout their SCID journey, it is important to explore the stressors generated by such uncertainties and how parents cope with these stressors. Methods We conducted 26 in-depth interviews with parents whose child was diagnosed with SCID or a SCID-like condition through newborn screening. The interviews explored uncertainties related to their child’s diagnosis and how parents coped with these uncertainties. Transcripts were generated from the interviews and analyzed using an inductive content analysis approach which included data immersion, generation and assignment of codes, and interpretation. Results Parents used a variety of behavioral, cognitive, and affective coping strategies which evolved throughout their SCID journeys. Some parents reported coping by playing an active role in their child’s treatment, which included reaching out to other SCID parents or seeking second medical opinions. Other types of coping included establishing house hygiene rules, thinking positively about the child’s treatment progress, and relying on family members for help. These coping strategies were both deliberate and intuitive. Participants also described their struggles in coping with stressors related to their child’s health and survival. They reported difficulty in processing their emotions and experiencing denial and guilt related to their child’s diagnosis. Some parents adapted to ongoing uncertainties through such strategies as positive thinking, self-reflection, and relying on family and community. With successful adaptation, parents emphasized that they continue to use these strategies today. Conclusion Our assessment revealed that parents of children diagnosed with SCID use a variety of behavioral, cognitive, and affective approaches to cope with SCID uncertainties. Although parents reported challenges in coping with SCID uncertainties, they also reported finding ways to overcome these stressors and establish patterns of effective coping. Findings from our study can serve as a guide for parents whose child was newly diagnosed with SCID and for providers such as social workers, genetic counselors, and psychologists. |
| first_indexed | 2024-04-13T17:23:58Z |
| format | Article |
| id | doaj.art-2cd48ce294244d43ac7dbdd46c39caea |
| institution | Directory Open Access Journal |
| issn | 1750-1172 |
| language | English |
| last_indexed | 2024-04-13T17:23:58Z |
| publishDate | 2022-10-01 |
| publisher | BMC |
| record_format | Article |
| series | Orphanet Journal of Rare Diseases |
| spelling | doaj.art-2cd48ce294244d43ac7dbdd46c39caea2022-12-22T02:37:53ZengBMCOrphanet Journal of Rare Diseases1750-11722022-10-0117111310.1186/s13023-022-02554-9Parental coping with uncertainties along the severe combined immunodeficiency journeyOksana Kutsa0Sara M. Andrews1Erin Mallonee2Angela Gwaltney3Alissa Creamer4Paul K. J. Han5Melissa Raspa6Barbara B. Biesecker7GenOmics, Bioinformatics, and Translational Research Center, RTI InternationalGenOmics, Bioinformatics, and Translational Research Center, RTI InternationalGenOmics, Bioinformatics, and Translational Research Center, RTI InternationalGenOmics, Bioinformatics, and Translational Research Center, RTI InternationalImmune Deficiency FoundationBehavioral Research Program, National Cancer InstituteGenOmics, Bioinformatics, and Translational Research Center, RTI InternationalGenOmics, Bioinformatics, and Translational Research Center, RTI InternationalAbstract Background Severe combined immunodeficiency (SCID) is a group of rare genetic disorders that cause disruption in immune system functioning. Parents of children with SCID experience many uncertainties related to their child’s diagnosis, treatment, recovery, and quality of life. To fully understand parents’ experiences throughout their SCID journey, it is important to explore the stressors generated by such uncertainties and how parents cope with these stressors. Methods We conducted 26 in-depth interviews with parents whose child was diagnosed with SCID or a SCID-like condition through newborn screening. The interviews explored uncertainties related to their child’s diagnosis and how parents coped with these uncertainties. Transcripts were generated from the interviews and analyzed using an inductive content analysis approach which included data immersion, generation and assignment of codes, and interpretation. Results Parents used a variety of behavioral, cognitive, and affective coping strategies which evolved throughout their SCID journeys. Some parents reported coping by playing an active role in their child’s treatment, which included reaching out to other SCID parents or seeking second medical opinions. Other types of coping included establishing house hygiene rules, thinking positively about the child’s treatment progress, and relying on family members for help. These coping strategies were both deliberate and intuitive. Participants also described their struggles in coping with stressors related to their child’s health and survival. They reported difficulty in processing their emotions and experiencing denial and guilt related to their child’s diagnosis. Some parents adapted to ongoing uncertainties through such strategies as positive thinking, self-reflection, and relying on family and community. With successful adaptation, parents emphasized that they continue to use these strategies today. Conclusion Our assessment revealed that parents of children diagnosed with SCID use a variety of behavioral, cognitive, and affective approaches to cope with SCID uncertainties. Although parents reported challenges in coping with SCID uncertainties, they also reported finding ways to overcome these stressors and establish patterns of effective coping. Findings from our study can serve as a guide for parents whose child was newly diagnosed with SCID and for providers such as social workers, genetic counselors, and psychologists.https://doi.org/10.1186/s13023-022-02554-9Severe combined immunodeficiencyCoping with uncertaintiesAdaptationRare genetic diseases |
| spellingShingle | Oksana Kutsa Sara M. Andrews Erin Mallonee Angela Gwaltney Alissa Creamer Paul K. J. Han Melissa Raspa Barbara B. Biesecker Parental coping with uncertainties along the severe combined immunodeficiency journey Orphanet Journal of Rare Diseases Severe combined immunodeficiency Coping with uncertainties Adaptation Rare genetic diseases |
| title | Parental coping with uncertainties along the severe combined immunodeficiency journey |
| title_full | Parental coping with uncertainties along the severe combined immunodeficiency journey |
| title_fullStr | Parental coping with uncertainties along the severe combined immunodeficiency journey |
| title_full_unstemmed | Parental coping with uncertainties along the severe combined immunodeficiency journey |
| title_short | Parental coping with uncertainties along the severe combined immunodeficiency journey |
| title_sort | parental coping with uncertainties along the severe combined immunodeficiency journey |
| topic | Severe combined immunodeficiency Coping with uncertainties Adaptation Rare genetic diseases |
| url | https://doi.org/10.1186/s13023-022-02554-9 |
| work_keys_str_mv | AT oksanakutsa parentalcopingwithuncertaintiesalongtheseverecombinedimmunodeficiencyjourney AT saramandrews parentalcopingwithuncertaintiesalongtheseverecombinedimmunodeficiencyjourney AT erinmallonee parentalcopingwithuncertaintiesalongtheseverecombinedimmunodeficiencyjourney AT angelagwaltney parentalcopingwithuncertaintiesalongtheseverecombinedimmunodeficiencyjourney AT alissacreamer parentalcopingwithuncertaintiesalongtheseverecombinedimmunodeficiencyjourney AT paulkjhan parentalcopingwithuncertaintiesalongtheseverecombinedimmunodeficiencyjourney AT melissaraspa parentalcopingwithuncertaintiesalongtheseverecombinedimmunodeficiencyjourney AT barbarabbiesecker parentalcopingwithuncertaintiesalongtheseverecombinedimmunodeficiencyjourney |