What Cluster Headache Patients Would Like Their Relatives to Know: Results from a Qualitative Study
Many patients with cluster headaches report that their relatives do not understand what they are going through. This qualitative study aimed to collect patients’ recommendations and wishes on how others should respond to those suffering from cluster headaches. We recruited 22 patients with episodic...
| Main Authors: | , , |
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| Format: | Article |
| Language: | English |
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MDPI AG
2024-03-01
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| Series: | Clinical and Translational Neuroscience |
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| Online Access: | https://www.mdpi.com/2514-183X/8/1/15 |
| _version_ | 1797241528237686784 |
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| author | Papitha Saravanamuthu Susanne Wegener Heiko Pohl |
| author_facet | Papitha Saravanamuthu Susanne Wegener Heiko Pohl |
| author_sort | Papitha Saravanamuthu |
| collection | DOAJ |
| description | Many patients with cluster headaches report that their relatives do not understand what they are going through. This qualitative study aimed to collect patients’ recommendations and wishes on how others should respond to those suffering from cluster headaches. We recruited 22 patients with episodic or chronic cluster headaches for this cross-sectional study. They responded to seven questions that assessed the disease’s impact on their relationships with relatives and their wishes for others’ behaviour towards them. Seven recommendations for relatives emerged: (i) withdraw during attacks, (ii) respect post-ictal exhaustion, (iii) do not insist on discussing the disorder, (iv) help the patient to lead a “normal” life, (v) support preserving social contacts, (vi) show being aware of the disease severity, and (vii) expect the disease to take up space in patients’ lives and minds. Two recommendations for the interictal period indicate avoidance, which is considered a negative coping strategy. Conversely, the suggestion to support preserving social contacts might mean confronting the disease, which is likely associated with more favourable outcomes. Still, adhering to all patients’ requests might increase suffering instead of reducing it. Thus, further research is needed to develop strategies suited to improve well-being. |
| first_indexed | 2024-04-24T18:24:45Z |
| format | Article |
| id | doaj.art-96f26522431a490aa1be26211f64c0c1 |
| institution | Directory Open Access Journal |
| issn | 2514-183X |
| language | English |
| last_indexed | 2024-04-24T18:24:45Z |
| publishDate | 2024-03-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Clinical and Translational Neuroscience |
| spelling | doaj.art-96f26522431a490aa1be26211f64c0c12024-03-27T13:32:39ZengMDPI AGClinical and Translational Neuroscience2514-183X2024-03-01811510.3390/ctn8010015What Cluster Headache Patients Would Like Their Relatives to Know: Results from a Qualitative StudyPapitha Saravanamuthu0Susanne Wegener1Heiko Pohl2Department of Neurology, University Hospital Zurich, Clinical Neuroscience Centre, 8091 Zurich, SwitzerlandDepartment of Neurology, University Hospital Zurich, Clinical Neuroscience Centre, 8091 Zurich, SwitzerlandDepartment of Neurology, University Hospital Zurich, Clinical Neuroscience Centre, 8091 Zurich, SwitzerlandMany patients with cluster headaches report that their relatives do not understand what they are going through. This qualitative study aimed to collect patients’ recommendations and wishes on how others should respond to those suffering from cluster headaches. We recruited 22 patients with episodic or chronic cluster headaches for this cross-sectional study. They responded to seven questions that assessed the disease’s impact on their relationships with relatives and their wishes for others’ behaviour towards them. Seven recommendations for relatives emerged: (i) withdraw during attacks, (ii) respect post-ictal exhaustion, (iii) do not insist on discussing the disorder, (iv) help the patient to lead a “normal” life, (v) support preserving social contacts, (vi) show being aware of the disease severity, and (vii) expect the disease to take up space in patients’ lives and minds. Two recommendations for the interictal period indicate avoidance, which is considered a negative coping strategy. Conversely, the suggestion to support preserving social contacts might mean confronting the disease, which is likely associated with more favourable outcomes. Still, adhering to all patients’ requests might increase suffering instead of reducing it. Thus, further research is needed to develop strategies suited to improve well-being.https://www.mdpi.com/2514-183X/8/1/15burden of diseasepaincopingpartner communicationavoidanceemotion regulation |
| spellingShingle | Papitha Saravanamuthu Susanne Wegener Heiko Pohl What Cluster Headache Patients Would Like Their Relatives to Know: Results from a Qualitative Study Clinical and Translational Neuroscience burden of disease pain coping partner communication avoidance emotion regulation |
| title | What Cluster Headache Patients Would Like Their Relatives to Know: Results from a Qualitative Study |
| title_full | What Cluster Headache Patients Would Like Their Relatives to Know: Results from a Qualitative Study |
| title_fullStr | What Cluster Headache Patients Would Like Their Relatives to Know: Results from a Qualitative Study |
| title_full_unstemmed | What Cluster Headache Patients Would Like Their Relatives to Know: Results from a Qualitative Study |
| title_short | What Cluster Headache Patients Would Like Their Relatives to Know: Results from a Qualitative Study |
| title_sort | what cluster headache patients would like their relatives to know results from a qualitative study |
| topic | burden of disease pain coping partner communication avoidance emotion regulation |
| url | https://www.mdpi.com/2514-183X/8/1/15 |
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