Pub Date : 2024-06-01Epub Date: 2023-06-08DOI: 10.1177/17423953231181408
Wendy M Brunner, Kristin Pullyblank, Melissa B Scribani, Nicole Krupa, Lynae Wyckoff
Objectives: We intended to assess changes in pain-related outcomes among rural adults who completed 6-week self-management programs offered remotely during the COVID-19 pandemic.
Methods: We offered the Chronic Pain Self-Management Program and Chronic Disease Self-Management Program between May 2020 and December 2021. Delivery mode options included 2½-hour weekly videoconference, mailed toolkit plus 1-hour weekly conference call, and mailed toolkit alone. We conducted pre- and post-workshop surveys including questions on patient activation, self-efficacy, depression and pain disability. We used paired t-tests to compare pre-post differences in outcomes among participants completing 4 or more sessions.
Results: Among 218 adults reporting chronic pain, mean age was 57; 83.6% were female; and 49.5% participated via videoconference, 23.4% by phone and 27.1% via mailed toolkit alone. Completion rates were higher among phone (88.2%) versus videoconference (60.2%) workshop participants. Among completers, patient activation (mean change = 3.61, p = 0.01) and self-efficacy (mean change = 3.72, p < 0.0001) increased while depression scores (mean change = -1.03, p = 0.01), pain disability (mean change = -0.93, p = 0.003) and pain symptoms (mean change = -0.61, p = 0.001) decreased over the 6-week period.
Discussion: Self-management programs offered remotely during the pandemic were successful in improving patient activation, self-efficacy, depression, pain disability, and pain symptoms among rural adults experiencing chronic pain.
{"title":"Remote delivery of self-management education workshops for adults with chronic pain, 2020-2021.","authors":"Wendy M Brunner, Kristin Pullyblank, Melissa B Scribani, Nicole Krupa, Lynae Wyckoff","doi":"10.1177/17423953231181408","DOIUrl":"10.1177/17423953231181408","url":null,"abstract":"<p><strong>Objectives: </strong>We intended to assess changes in pain-related outcomes among rural adults who completed 6-week self-management programs offered remotely during the COVID-19 pandemic.</p><p><strong>Methods: </strong>We offered the Chronic Pain Self-Management Program and Chronic Disease Self-Management Program between May 2020 and December 2021. Delivery mode options included 2½-hour weekly videoconference, mailed toolkit plus 1-hour weekly conference call, and mailed toolkit alone. We conducted pre- and post-workshop surveys including questions on patient activation, self-efficacy, depression and pain disability. We used paired t-tests to compare pre-post differences in outcomes among participants completing 4 or more sessions.</p><p><strong>Results: </strong>Among 218 adults reporting chronic pain, mean age was 57; 83.6% were female; and 49.5% participated via videoconference, 23.4% by phone and 27.1% via mailed toolkit alone. Completion rates were higher among phone (88.2%) versus videoconference (60.2%) workshop participants. Among completers, patient activation (mean change = 3.61, <i>p</i> = 0.01) and self-efficacy (mean change = 3.72, <i>p</i> < 0.0001) increased while depression scores (mean change = -1.03, <i>p</i> = 0.01), pain disability (mean change = -0.93, <i>p</i> = 0.003) and pain symptoms (mean change = -0.61, <i>p</i> = 0.001) decreased over the 6-week period.</p><p><strong>Discussion: </strong>Self-management programs offered remotely during the pandemic were successful in improving patient activation, self-efficacy, depression, pain disability, and pain symptoms among rural adults experiencing chronic pain.</p>","PeriodicalId":48530,"journal":{"name":"Chronic Illness","volume":" ","pages":"360-368"},"PeriodicalIF":1.8,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9593121","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-01Epub Date: 2023-05-25DOI: 10.1177/17423953231178185
Gemma Hartley, Jack Purrington
Objectives: This service evaluation explored the experiences of families receiving care in a paediatric chronic fatigue service. The evaluation aimed to improve service provision across paediatric chronic fatigue services more widely.
Methods: Children and young people aged 7-18 years (n = 25) and parents/carers (n = 25) completed a postal survey exploring experiences of a paediatric chronic fatigue service. Quantitative data were analysed descriptively, and qualitative data were analysed using thematic analysis.
Results: Most service usersand parents/carers (88%) agreed that the service met their needs, that they felt supported by staff, and most notably, a large portion (74%) reported the team increased their activity levels. A small number disagreed (7%) with statements relating to positive links with other services, ease of talking to staff and suitability of appointment type. The thematic analysis revealed three themes: help managing chronic fatigue syndrome, experience of professional support and accessibility of service. Families reported benefiting from increased understanding of chronic fatigue syndrome, learning new strategies, the team linking with schools, feeling validated and mental health support. Accessibility was a particular problem including the service location, setup of appointments and difficulty contacting the team.
Discussion: The evaluation presents recommendations for paediatric Chronic Fatigue services to improve service user experiences.
{"title":"Service users' and parents/carers' experiences of a paediatric chronic fatigue service: A service evaluation.","authors":"Gemma Hartley, Jack Purrington","doi":"10.1177/17423953231178185","DOIUrl":"10.1177/17423953231178185","url":null,"abstract":"<p><strong>Objectives: </strong>This service evaluation explored the experiences of families receiving care in a paediatric chronic fatigue service. The evaluation aimed to improve service provision across paediatric chronic fatigue services more widely.</p><p><strong>Methods: </strong>Children and young people aged 7-18 years (<i>n</i> = 25) and parents/carers (<i>n</i> = 25) completed a postal survey exploring experiences of a paediatric chronic fatigue service. Quantitative data were analysed descriptively, and qualitative data were analysed using thematic analysis.</p><p><strong>Results: </strong>Most service usersand parents/carers (88%) agreed that the service met their needs, that they felt supported by staff, and most notably, a large portion (74%) reported the team increased their activity levels. A small number disagreed (7%) with statements relating to positive links with other services, ease of talking to staff and suitability of appointment type. The thematic analysis revealed three themes: help managing chronic fatigue syndrome, experience of professional support and accessibility of service. Families reported benefiting from increased understanding of chronic fatigue syndrome, learning new strategies, the team linking with schools, feeling validated and mental health support. Accessibility was a particular problem including the service location, setup of appointments and difficulty contacting the team.</p><p><strong>Discussion: </strong>The evaluation presents recommendations for paediatric Chronic Fatigue services to improve service user experiences.</p>","PeriodicalId":48530,"journal":{"name":"Chronic Illness","volume":" ","pages":"320-334"},"PeriodicalIF":1.8,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9527220","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-01Epub Date: 2023-06-12DOI: 10.1177/17423953231181409
Giovana Ribeiro de Souza Favaretto, Regina Celia Bueno Machado, Mariana Ragassi Urbano, Júlia Dutra Balsanelli, Sarah Conchon Costa, Sandra Odebrecht Vargas Nunes
Objectives: To assess characteristics of hospitalized adolescents facing chronic diseases, correlating the perceptions of their illness, quality of life and the prevalence of risk behaviors, considering gender and the diseases' durations.
Methods: The sample consisted of 61 adolescents, aged between 10 and 19 years, with chronic diseases, hospitalized at the University Hospital of the State University of Londrina. They answered a questionnaire and the scales World Health Organization Quality of Life (WHOQOL-BREF) and Illness Perception Questionnaire (IPQ). They were divided in groups, according to the durations of the disease: group 1 (up to 4 years) and group 2 (5 years or more).
Results: Group 2 demonstrated higher leisure activity (p = 0.02) and more painful symptoms (p = 0.02). In WHOQOL-BREF, group 2 had a higher quality of life in the domain on environment (p = 0.02) and a higher total score (p = 0.04). Lower scores on the IPQ were associated with higher scores on the WHOQOL-BREF. Positive correlation was found between WHOQOL-BREF total score and years of disease, in which male presented higher scores.
Conclusions: These findings may alert to the need for more knowledge about the diseases and the importance of encouraging ways to improve quality of life and care to reduce risky behaviors.
{"title":"A descriptive analysis of hospitalized adolescents facing chronic illnesses with different durations of disease.","authors":"Giovana Ribeiro de Souza Favaretto, Regina Celia Bueno Machado, Mariana Ragassi Urbano, Júlia Dutra Balsanelli, Sarah Conchon Costa, Sandra Odebrecht Vargas Nunes","doi":"10.1177/17423953231181409","DOIUrl":"10.1177/17423953231181409","url":null,"abstract":"<p><strong>Objectives: </strong>To assess characteristics of hospitalized adolescents facing chronic diseases, correlating the perceptions of their illness, quality of life and the prevalence of risk behaviors, considering gender and the diseases' durations.</p><p><strong>Methods: </strong>The sample consisted of 61 adolescents, aged between 10 and 19 years, with chronic diseases, hospitalized at the University Hospital of the State University of Londrina. They answered a questionnaire and the scales World Health Organization Quality of Life (WHOQOL-BREF) and Illness Perception Questionnaire (IPQ). They were divided in groups, according to the durations of the disease: group 1 (up to 4 years) and group 2 (5 years or more).</p><p><strong>Results: </strong>Group 2 demonstrated higher leisure activity (<i>p</i> = 0.02) and more painful symptoms (<i>p</i> = 0.02). In WHOQOL-BREF, group 2 had a higher quality of life in the domain on environment (<i>p</i> = 0.02) and a higher total score (<i>p</i> = 0.04). Lower scores on the IPQ were associated with higher scores on the WHOQOL-BREF. Positive correlation was found between WHOQOL-BREF total score and years of disease, in which male presented higher scores.</p><p><strong>Conclusions: </strong>These findings may alert to the need for more knowledge about the diseases and the importance of encouraging ways to improve quality of life and care to reduce risky behaviors.</p>","PeriodicalId":48530,"journal":{"name":"Chronic Illness","volume":" ","pages":"369-379"},"PeriodicalIF":1.8,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9987196","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Objectives: The aim of the present study is to evaluate the impact of Covid-19 on utilization of chronic diseases services.
Methods: Interrupted time-series design was used to examine the utilization of chronic diseases services before and during the Covid-19 pandemic among hospitals in Iran. Chronic obstructive pulmonary disease (COPD), asthma, type 2 diabetes, heart failure, and chemotherapy were selected as a proxy to indicate the impact of Covid-19 on utilization of chronic diseases services. Data were collected in 24 sites from 12 months before the onset of Covid-19 (from March 2019 to February 2020) to 12 months during the Covid-19 pandemic (February 2020 to March 2021).
Results: A total of 7,039,378 services were provided, of which 51.92% were provided for women and 62.73% for >65 age group. A sudden decrease was observed in monthly utilization of services during the Covid-19 pandemic; ranging from 13.91 (95% CI = -21.73, 6.10, P = 0.001) for chemotherapy to 606.39 (95% CI = -1040.72, 172.06, P = 0.009) for heart failure services per 100 thousand population. A decrease was observed in COPD services; 15.28 services compared with the period before Covid-19. Subsequently, the monthly utilization trends of asthma, type 2 diabetes, and chemotherapy services increased significantly (P < 0.05).
Discussion: Although chronic diseases are a factor in more severe form of Covid-19, their failure to seek diagnostic, prevention and treatment services has somewhat complicated the issue.
{"title":"The effect of COVID-19 on utilization of chronic diseases services.","authors":"Ghobad Moradi, Bakhtiar Piroozi, Fariba Khayyati, Farhad Moradpour, Hossein Safari, Amjad Mohamadi Bolbanabad, Hamed Fattahi, Fatemeh Younesi, Ali Ebrazeh, Azad Shokri","doi":"10.1177/17423953231178168","DOIUrl":"10.1177/17423953231178168","url":null,"abstract":"<p><strong>Objectives: </strong>The aim of the present study is to evaluate the impact of Covid-19 on utilization of chronic diseases services.</p><p><strong>Methods: </strong>Interrupted time-series design was used to examine the utilization of chronic diseases services before and during the Covid-19 pandemic among hospitals in Iran. Chronic obstructive pulmonary disease (COPD), asthma, type 2 diabetes, heart failure, and chemotherapy were selected as a proxy to indicate the impact of Covid-19 on utilization of chronic diseases services. Data were collected in 24 sites from 12 months before the onset of Covid-19 (from March 2019 to February 2020) to 12 months during the Covid-19 pandemic (February 2020 to March 2021).</p><p><strong>Results: </strong>A total of 7,039,378 services were provided, of which 51.92% were provided for women and 62.73% for >65 age group. A sudden decrease was observed in monthly utilization of services during the Covid-19 pandemic; ranging from 13.91 (95% CI = -21.73, 6.10, <i>P</i> = 0.001) for chemotherapy to 606.39 (95% CI = -1040.72, 172.06, <i>P</i> = 0.009) for heart failure services per 100 thousand population. A decrease was observed in COPD services; 15.28 services compared with the period before Covid-19. Subsequently, the monthly utilization trends of asthma, type 2 diabetes, and chemotherapy services increased significantly (<i>P</i> < 0.05).</p><p><strong>Discussion: </strong>Although chronic diseases are a factor in more severe form of Covid-19, their failure to seek diagnostic, prevention and treatment services has somewhat complicated the issue.</p>","PeriodicalId":48530,"journal":{"name":"Chronic Illness","volume":" ","pages":"309-319"},"PeriodicalIF":1.8,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10372501/pdf/10.1177_17423953231178168.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10257818","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-01Epub Date: 2023-05-22DOI: 10.1177/17423953231174926
Ashley Smith, Lori J Lange
Objective: A consideration of chronic illness according to illness labels that are medically understood as opposed to being outside of medical understanding may reveal unique differences in how individuals understand their illness and how such lay understandings relate to health-related quality of life. Study aims are framed according to the commonsense model of self-regulation with a focus on characterizing illness representations according to chronic illness diagnosis type.
Methods: Individuals suffering from symptomatic chronic illnesses (n = 192) completed measures of illness representations, coping, and general health. Participants were categorized into one of two groups based on reported diagnosis/symptoms: (a) conventional diagnosis (CD) or (b) functional somatic syndrome (FSS).
Results: FSS participants reported lower illness coherence and greater illness identity than CD participants. Overall, illness coherence predicted negative coping which mediated the relationship between illness coherence and general health.
Conclusions: Minimal differences were found in illness representations across FSS and CD groups with distinctions found only for illness coherence and identity. Illness coherence stands out as particularly important for coping and health-related quality of life for individuals with ongoing symptoms. Healthcare professionals should work carefully with chronically ill populations to address potential impacts of illness coherence, especially among FSS patients.
{"title":"Do labels matter? Implications of ongoing symptomatic chronic illnesses labeled as conventional diagnoses vs. functional somatic syndromes.","authors":"Ashley Smith, Lori J Lange","doi":"10.1177/17423953231174926","DOIUrl":"10.1177/17423953231174926","url":null,"abstract":"<p><strong>Objective: </strong>A consideration of chronic illness according to illness labels that are medically understood as opposed to being outside of medical understanding may reveal unique differences in how individuals understand their illness and how such lay understandings relate to health-related quality of life. Study aims are framed according to the commonsense model of self-regulation with a focus on characterizing illness representations according to chronic illness diagnosis type.</p><p><strong>Methods: </strong>Individuals suffering from symptomatic chronic illnesses (<i>n</i> = 192) completed measures of illness representations, coping, and general health. Participants were categorized into one of two groups based on reported diagnosis/symptoms: (a) conventional diagnosis (CD) or (b) functional somatic syndrome (FSS).</p><p><strong>Results: </strong>FSS participants reported lower illness coherence and greater illness identity than CD participants. Overall, illness coherence predicted negative coping which mediated the relationship between illness coherence and general health.</p><p><strong>Conclusions: </strong>Minimal differences were found in illness representations across FSS and CD groups with distinctions found only for illness coherence and identity. Illness coherence stands out as particularly important for coping and health-related quality of life for individuals with ongoing symptoms. Healthcare professionals should work carefully with chronically ill populations to address potential impacts of illness coherence, especially among FSS patients.</p>","PeriodicalId":48530,"journal":{"name":"Chronic Illness","volume":" ","pages":"271-282"},"PeriodicalIF":1.8,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9507087","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-01Epub Date: 2023-06-07DOI: 10.1177/17423953231180453
Shanbao Zhang, Meng Ouyang, Lei Liu
Background: Hemodialysis patients are common to have renal anemia in the nephrology practice. For the renal anemia, the high-dose iron from the intravenous route is an important treatment option. We can understand the treatment effects and cardiovascular events of high-dose intravenous iron reviewing the randomized clinical trials.
Methods: We compared the high-dose and low-dose iron treatments to find if the high-dose intravenous iron can influence the hematological parameters more significantly than the low-dose iron. The cardiovascular events were also analyzed for the high-dose iron treatment. Six studies with a total of 2422 renal anemia patients under hemodialysis were enrolled. We focused the outcomes of hemoglobin, transferrin saturation percentage, ferritin, erythropoietin dose, and cardiovascular events.
Results: The high-dose intravenous iron might be associated with a greater number of ferritin, transferrin saturation percentage, and hemoglobin. In addition, the erythropoietin dose was less needed to maintain the ideal hemoglobin range in the high-dose intravenous iron group.
Conclusions: In current meta-analysis, the high-dose intravenous iron might show the superior effects on the ferritin, transferrin saturation percentage, and hemoglobin levels and needed dose of erythropoietin when compared to low-dose iron treatment.
{"title":"The treatment effects and cardiovascular events of high-dose intravenous iron for hemodialysis patients with renal anemia: A systematic review and meta-analysis.","authors":"Shanbao Zhang, Meng Ouyang, Lei Liu","doi":"10.1177/17423953231180453","DOIUrl":"10.1177/17423953231180453","url":null,"abstract":"<p><strong>Background: </strong>Hemodialysis patients are common to have renal anemia in the nephrology practice. For the renal anemia, the high-dose iron from the intravenous route is an important treatment option. We can understand the treatment effects and cardiovascular events of high-dose intravenous iron reviewing the randomized clinical trials.</p><p><strong>Methods: </strong>We compared the high-dose and low-dose iron treatments to find if the high-dose intravenous iron can influence the hematological parameters more significantly than the low-dose iron. The cardiovascular events were also analyzed for the high-dose iron treatment. Six studies with a total of 2422 renal anemia patients under hemodialysis were enrolled. We focused the outcomes of hemoglobin, transferrin saturation percentage, ferritin, erythropoietin dose, and cardiovascular events.</p><p><strong>Results: </strong>The high-dose intravenous iron might be associated with a greater number of ferritin, transferrin saturation percentage, and hemoglobin. In addition, the erythropoietin dose was less needed to maintain the ideal hemoglobin range in the high-dose intravenous iron group.</p><p><strong>Conclusions: </strong>In current meta-analysis, the high-dose intravenous iron might show the superior effects on the ferritin, transferrin saturation percentage, and hemoglobin levels and needed dose of erythropoietin when compared to low-dose iron treatment.</p>","PeriodicalId":48530,"journal":{"name":"Chronic Illness","volume":" ","pages":"221-232"},"PeriodicalIF":1.8,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9586268","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Background: Spirituality is a vast dimension influenced by cultural and personal differences. Little is known about the spirituality of patients suffering from a chronic disease in Italy from palliative care hospital settings.
Aim: To investigate patients' perspectives about their spirituality during their illness.
Method: The research question was: 'How does living with chronic disease inform/shape the spiritual dimension of patients?'. To address it, we conducted a qualitative interview study with thematic analysis.
Results: We enrolled 21 participants among patients suffering from rheumatic, haematologic, neurodegenerative and respiratory chronic diseases. Participants generally had great difficulty answering the questions researchers posed and often could not define 'spirituality'. We found different topics grouped under four main themes: definition of spirituality, internal dialogue, expression of spirituality in everyday life and take stock. Religion is not reported as an answer to spiritual suffering, even in a country that is felt religious-driven like Italy.
Discussion: Patients are generally not cognizant of this dimension even living with a chronic disease; consequently, they cannot express spiritual needs because they can't recognise them. Health professionals should identify this dimension and its characteristics to recognise potential spiritual suffering.
{"title":"A qualitative study with Italian patients exploring the spiritual dimension during a chronic disease.","authors":"Silvia Tanzi, Giovanna Artioli, Ludovica De Panfilis, Luca Ghirotto, Elisa Rabitti, Simona Sacchi","doi":"10.1177/17423953231178236","DOIUrl":"10.1177/17423953231178236","url":null,"abstract":"<p><strong>Background: </strong>Spirituality is a vast dimension influenced by cultural and personal differences. Little is known about the spirituality of patients suffering from a chronic disease in Italy from palliative care hospital settings.</p><p><strong>Aim: </strong>To investigate patients' perspectives about their spirituality during their illness.</p><p><strong>Method: </strong>The research question was: 'How does living with chronic disease inform/shape the spiritual dimension of patients?'. To address it, we conducted a qualitative interview study with thematic analysis.</p><p><strong>Results: </strong>We enrolled 21 participants among patients suffering from rheumatic, haematologic, neurodegenerative and respiratory chronic diseases. Participants generally had great difficulty answering the questions researchers posed and often could not define 'spirituality'. We found different topics grouped under four main themes: definition of spirituality, internal dialogue, expression of spirituality in everyday life and take stock. Religion is not reported as an answer to spiritual suffering, even in a country that is felt religious-driven like Italy.</p><p><strong>Discussion: </strong>Patients are generally not cognizant of this dimension even living with a chronic disease; consequently, they cannot express spiritual needs because they can't recognise them. Health professionals should identify this dimension and its characteristics to recognise potential spiritual suffering.</p>","PeriodicalId":48530,"journal":{"name":"Chronic Illness","volume":" ","pages":"335-348"},"PeriodicalIF":1.8,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9593810","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-01Epub Date: 2023-05-07DOI: 10.1177/17423953231172797
Andrews Adjei Druye, Katherine Nelson, Brian Robinson
Objective: This study aimed to explore self-management practices among patients and parents of children with sickle cell disease (SCD).
Methods: The qualitative descriptive design was employed. The study involved 19 participants comprising adult SCD patients ≥16 years, and nine parents of SCD children ≤ 15 years. Purposive sampling was conducted to select participants from a teaching hospital and SCD association. Data was collected using one-on-one interviews, transcribed verbatim, and analysed using qualitative content analysis.
Results: Self-management was reported through four categories including preventive health, self-monitoring, self-diagnosis, and self-treatment. Hydration, nutrition, activity limitation, avoidance of cold temperatures, and supportive medications were the most common preventive health actions. Regarding self-monitoring and self-diagnosis, the parents emphasized objective indicators such as changes in urine and eye colour compared to the adults who utilize subjective indicators such as feeling unwell and easy fatigue. Pharmacological and non-pharmacological measures were reported by both groups for treating painful episodes, fever, leg ulcers, priapism, and unspecified symptoms.
Discussion: The participants in this study practice several self-management actions with some differences in application between adults and children. Tailored self-management services may be helpful for adults and children when developing services for SCD patients.
{"title":"Self-management for sickle cell disease among patients and parents: A qualitative study.","authors":"Andrews Adjei Druye, Katherine Nelson, Brian Robinson","doi":"10.1177/17423953231172797","DOIUrl":"10.1177/17423953231172797","url":null,"abstract":"<p><strong>Objective: </strong>This study aimed to explore self-management practices among patients and parents of children with sickle cell disease (SCD).</p><p><strong>Methods: </strong>The qualitative descriptive design was employed. The study involved 19 participants comprising adult SCD patients ≥16 years, and nine parents of SCD children ≤ 15 years. Purposive sampling was conducted to select participants from a teaching hospital and SCD association. Data was collected using one-on-one interviews, transcribed verbatim, and analysed using qualitative content analysis.</p><p><strong>Results: </strong>Self-management was reported through four categories including preventive health, self-monitoring, self-diagnosis, and self-treatment. Hydration, nutrition, activity limitation, avoidance of cold temperatures, and supportive medications were the most common preventive health actions. Regarding self-monitoring and self-diagnosis, the parents emphasized objective indicators such as changes in urine and eye colour compared to the adults who utilize subjective indicators such as feeling unwell and easy fatigue. Pharmacological and non-pharmacological measures were reported by both groups for treating painful episodes, fever, leg ulcers, priapism, and unspecified symptoms.</p><p><strong>Discussion: </strong>The participants in this study practice several self-management actions with some differences in application between adults and children. Tailored self-management services may be helpful for adults and children when developing services for SCD patients.</p>","PeriodicalId":48530,"journal":{"name":"Chronic Illness","volume":" ","pages":"233-245"},"PeriodicalIF":1.8,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9418174","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Objectives: To synthesize interventions designed to enhance resilience in family caregivers (FCs).
Methods: Electronic databases including PubMed, CINAHL, PsycINFO, and Scopus, were searched using index and keyword methods for articles published before January 2020. The review process followed the PRISMA review guidelines. Study quality was assessed using the Mixed Methods Appraisal Tool (MMAT).
Results: Six studies (seven articles) were included in this review. Quantitative evidence supports the benefits of psychoeducation, mindfulness-based intervention, and cognitive behavioral therapy (CBT)-based intervention but not expressive writing in improving in FCs' resilience. Four of the six included studies were randomized controlled trials. All included studies only met 40% to 60% of the MMAT criteria, indicating low to moderate levels of study quality.
Conclusion: This review showed emerging evidence that psychoeducation, mindfulness-based intervention, and CBT-based intervention may improve caregiver resilience. However, it remains unclear which intervention and what dosage is the most effective in promoting FCs' resilience. Due to the small number of relevant studies and a low-to-moderate level of overall study quality, more rigorous clinical trials are needed to strengthen the current limited evidence base for FC resilience interventions.
{"title":"Resilience-enhancing interventions for family caregivers: A systematic review.","authors":"Nai-Ching Chi, Soojeong Han, Shih-Yin Lin, Ying-Kai Fu, Zilin Zhu, Lynn Nakad, George Demiris","doi":"10.1177/17423953231174928","DOIUrl":"10.1177/17423953231174928","url":null,"abstract":"<p><strong>Objectives: </strong>To synthesize interventions designed to enhance resilience in family caregivers (FCs).</p><p><strong>Methods: </strong>Electronic databases including PubMed, CINAHL, PsycINFO, and Scopus, were searched using index and keyword methods for articles published before January 2020. The review process followed the PRISMA review guidelines. Study quality was assessed using the Mixed Methods Appraisal Tool (MMAT).</p><p><strong>Results: </strong>Six studies (seven articles) were included in this review. Quantitative evidence supports the benefits of psychoeducation, mindfulness-based intervention, and cognitive behavioral therapy (CBT)-based intervention but not expressive writing in improving in FCs' resilience. Four of the six included studies were randomized controlled trials. All included studies only met 40% to 60% of the MMAT criteria, indicating low to moderate levels of study quality.</p><p><strong>Conclusion: </strong>This review showed emerging evidence that psychoeducation, mindfulness-based intervention, and CBT-based intervention may improve caregiver resilience. However, it remains unclear which intervention and what dosage is the most effective in promoting FCs' resilience. Due to the small number of relevant studies and a low-to-moderate level of overall study quality, more rigorous clinical trials are needed to strengthen the current limited evidence base for FC resilience interventions.</p>","PeriodicalId":48530,"journal":{"name":"Chronic Illness","volume":" ","pages":"199-220"},"PeriodicalIF":1.8,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9545745","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-01Epub Date: 2023-10-30DOI: 10.1177/17423953231175690
Sarah J Javier, Rashmi Risbud, Fernanda S Rossi, Cindie Slightam, James Aikens, Tim Guetterman, John D Piette, Ranak Trivedi
Objectives: With support from others, individuals with depression can build skills and implement lifestyle changes that help them manage their illness. The objective of the current study was to understand how the CarePartners for Depression Program, a randomized clinical trial aimed at enhancing the role of caregivers in the management of depression, improved communication and shared understandings of depression among individuals with depression and their close others.
Methods: We conducted in-depth, semi-structured interviews with individuals with depression and their caregivers who participated in the CarePartners program. Interviews were qualitatively coded using a thematic analytic framework.
Results: We conducted individual interviews with 39 participants in the CarePartners program, including 18 individuals with depression, 14 out-of-home care partners, and 7 informal caregivers. Three central themes were derived from analyses: (a) The quality of interpersonal relationships influenced the management of depression; (2) having clearly defined roles for CarePartners improved communication between CarePartners and individuals with depression; and (3) shared understanding of depression improved management of depression.
Discussion: Our findings established the conditions under which the management of depression was influenced in a dyadic intervention. Dyadic interventions may make it easier for individuals to support patients with depression by fostering communication and collaboration.
目标:在他人的支持下,抑郁症患者可以培养技能,改变生活方式,帮助他们控制疾病。本研究的目的是了解抑郁症护理伙伴计划(CarePartners for Depression Program)是一项旨在加强护理人员在抑郁症管理中的作用的随机临床试验,它如何改善抑郁症患者及其亲密他人之间的沟通和对抑郁症的共同理解。方法:我们对参与CarePartners计划的抑郁症患者及其护理人员进行了深入的半结构化访谈。访谈采用专题分析框架进行定性编码。结果:我们对CarePartners项目的39名参与者进行了个人访谈,其中包括18名抑郁症患者、14名家庭外护理伙伴和7名非正式护理人员。分析得出三个中心主题:(a)人际关系的质量影响抑郁症的管理;(2) 为CarePartners明确定义角色,改善了CarePartners与抑郁症患者之间的沟通;以及(3)对抑郁症的共同理解改善了抑郁症的管理。讨论:我们的研究结果确定了在二元干预中影响抑郁症管理的条件。Dyadic干预措施可以通过促进沟通和协作,使个人更容易支持抑郁症患者。
{"title":"Improving depression management with support from close others: A thematic analysis of individuals with depression and their partners in care.","authors":"Sarah J Javier, Rashmi Risbud, Fernanda S Rossi, Cindie Slightam, James Aikens, Tim Guetterman, John D Piette, Ranak Trivedi","doi":"10.1177/17423953231175690","DOIUrl":"10.1177/17423953231175690","url":null,"abstract":"<p><strong>Objectives: </strong>With support from others, individuals with depression can build skills and implement lifestyle changes that help them manage their illness. The objective of the current study was to understand how the CarePartners for Depression Program, a randomized clinical trial aimed at enhancing the role of caregivers in the management of depression, improved communication and shared understandings of depression among individuals with depression and their close others.</p><p><strong>Methods: </strong>We conducted in-depth, semi-structured interviews with individuals with depression and their caregivers who participated in the CarePartners program. Interviews were qualitatively coded using a thematic analytic framework.</p><p><strong>Results: </strong>We conducted individual interviews with 39 participants in the CarePartners program, including 18 individuals with depression, 14 out-of-home care partners, and 7 informal caregivers. Three central themes were derived from analyses: (a) The quality of interpersonal relationships influenced the management of depression; (2) having clearly defined roles for CarePartners improved communication between CarePartners and individuals with depression; and (3) shared understanding of depression improved management of depression.</p><p><strong>Discussion: </strong>Our findings established the conditions under which the management of depression was influenced in a dyadic intervention. Dyadic interventions may make it easier for individuals to support patients with depression by fostering communication and collaboration.</p>","PeriodicalId":48530,"journal":{"name":"Chronic Illness","volume":" ","pages":"283-295"},"PeriodicalIF":1.8,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12120974/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"71414841","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}