Caregiver Burden of Autosomal Dominant Polycystic Kidney Disease: A Qualitative StudyPlain-Language Summary
Rationale & Objective: There is limited published research on how autosomal dominant polycystic kidney disease (ADPKD) impacts caregivers. This study explored how caregivers of individuals with ADPKD perceive the burdens placed on them by the disease. Study Design: Qualitative study consisti...
| Main Authors: | , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Elsevier
2023-02-01
|
| Series: | Kidney Medicine |
| Subjects: | |
| Online Access: | http://www.sciencedirect.com/science/article/pii/S2590059522002205 |
| _version_ | 1811167256347934720 |
|---|---|
| author | Dorothee Oberdhan Andrew C. Palsgrove Jason C. Cole Tess Harris |
| author_facet | Dorothee Oberdhan Andrew C. Palsgrove Jason C. Cole Tess Harris |
| author_sort | Dorothee Oberdhan |
| collection | DOAJ |
| description | Rationale & Objective: There is limited published research on how autosomal dominant polycystic kidney disease (ADPKD) impacts caregivers. This study explored how caregivers of individuals with ADPKD perceive the burdens placed on them by the disease. Study Design: Qualitative study consisting of focus groups and interviews. Discussions were conducted by trained interviewers using semi-structured interview guides. Setting & Participants: The research was conducted in 14 countries in North America, South America, Asia, Australia, and Europe. Eligible participants were greater than or equal to 18 years old and caring for a child or adult diagnosed with ADPKD. Analytical Approach: The concepts reported were coded using qualitative research software. Data saturation was reached when subsequent discussions introduced no new key concepts. Results: Focus groups and interviews were held with 139 participants (mean age, 44.9 years; 66.9% female), including 25 participants who had a diagnosis of ADPKD themselves. Caregivers reported significant impact on their emotional (74.1%) and social life (38.1%), lost work productivity (26.6%), and reduced sleep (25.2%). Caregivers also reported worry about their financial situation (23.7%). In general, similar frequencies of impact were reported among caregivers with ADPKD versus caregivers without ADPKD, with the exception of sleep (8.0% vs 28.9%, respectively), leisure activities (28.0% vs 40.4% respectively), and work/employment (12.0% vs 29.8%, respectively). Limitations: The study was observational and designed to elicit concepts, and only descriptive analyses were conducted. Conclusions: These findings highlight the unique burden on caregivers in ADPKD, which results in substantial emotional, social, and professional/financial impact. |
| first_indexed | 2024-04-10T16:07:22Z |
| format | Article |
| id | doaj.art-a7021933a80a454d8cdd11cb83033419 |
| institution | Directory Open Access Journal |
| issn | 2590-0595 |
| language | English |
| last_indexed | 2024-04-10T16:07:22Z |
| publishDate | 2023-02-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Kidney Medicine |
| spelling | doaj.art-a7021933a80a454d8cdd11cb830334192023-02-10T04:23:16ZengElsevierKidney Medicine2590-05952023-02-0152100587Caregiver Burden of Autosomal Dominant Polycystic Kidney Disease: A Qualitative StudyPlain-Language SummaryDorothee Oberdhan0Andrew C. Palsgrove1Jason C. Cole2Tess Harris3Otsuka Pharmaceutical Development & Commercialization, Inc, Rockville, Maryland; Address for Correspondence: Dorothee Oberdhan, Otsuka Pharmaceutical Development & Commercialization, Inc, 2440 Research Blvd, Rockville, MD 20850.Otsuka Pharmaceutical Development & Commercialization, Inc, Rockville, MarylandP3 Research Consulting, LLC, Torrance, CaliforniaPKD International, London, UK; PKD Charity, London, UKRationale & Objective: There is limited published research on how autosomal dominant polycystic kidney disease (ADPKD) impacts caregivers. This study explored how caregivers of individuals with ADPKD perceive the burdens placed on them by the disease. Study Design: Qualitative study consisting of focus groups and interviews. Discussions were conducted by trained interviewers using semi-structured interview guides. Setting & Participants: The research was conducted in 14 countries in North America, South America, Asia, Australia, and Europe. Eligible participants were greater than or equal to 18 years old and caring for a child or adult diagnosed with ADPKD. Analytical Approach: The concepts reported were coded using qualitative research software. Data saturation was reached when subsequent discussions introduced no new key concepts. Results: Focus groups and interviews were held with 139 participants (mean age, 44.9 years; 66.9% female), including 25 participants who had a diagnosis of ADPKD themselves. Caregivers reported significant impact on their emotional (74.1%) and social life (38.1%), lost work productivity (26.6%), and reduced sleep (25.2%). Caregivers also reported worry about their financial situation (23.7%). In general, similar frequencies of impact were reported among caregivers with ADPKD versus caregivers without ADPKD, with the exception of sleep (8.0% vs 28.9%, respectively), leisure activities (28.0% vs 40.4% respectively), and work/employment (12.0% vs 29.8%, respectively). Limitations: The study was observational and designed to elicit concepts, and only descriptive analyses were conducted. Conclusions: These findings highlight the unique burden on caregivers in ADPKD, which results in substantial emotional, social, and professional/financial impact.http://www.sciencedirect.com/science/article/pii/S2590059522002205Autosomal dominant polycystic kidney disease (ADPKD)burdencaregiverquality of life |
| spellingShingle | Dorothee Oberdhan Andrew C. Palsgrove Jason C. Cole Tess Harris Caregiver Burden of Autosomal Dominant Polycystic Kidney Disease: A Qualitative StudyPlain-Language Summary Kidney Medicine Autosomal dominant polycystic kidney disease (ADPKD) burden caregiver quality of life |
| title | Caregiver Burden of Autosomal Dominant Polycystic Kidney Disease: A Qualitative StudyPlain-Language Summary |
| title_full | Caregiver Burden of Autosomal Dominant Polycystic Kidney Disease: A Qualitative StudyPlain-Language Summary |
| title_fullStr | Caregiver Burden of Autosomal Dominant Polycystic Kidney Disease: A Qualitative StudyPlain-Language Summary |
| title_full_unstemmed | Caregiver Burden of Autosomal Dominant Polycystic Kidney Disease: A Qualitative StudyPlain-Language Summary |
| title_short | Caregiver Burden of Autosomal Dominant Polycystic Kidney Disease: A Qualitative StudyPlain-Language Summary |
| title_sort | caregiver burden of autosomal dominant polycystic kidney disease a qualitative studyplain language summary |
| topic | Autosomal dominant polycystic kidney disease (ADPKD) burden caregiver quality of life |
| url | http://www.sciencedirect.com/science/article/pii/S2590059522002205 |
| work_keys_str_mv | AT dorotheeoberdhan caregiverburdenofautosomaldominantpolycystickidneydiseaseaqualitativestudyplainlanguagesummary AT andrewcpalsgrove caregiverburdenofautosomaldominantpolycystickidneydiseaseaqualitativestudyplainlanguagesummary AT jasonccole caregiverburdenofautosomaldominantpolycystickidneydiseaseaqualitativestudyplainlanguagesummary AT tessharris caregiverburdenofautosomaldominantpolycystickidneydiseaseaqualitativestudyplainlanguagesummary |