Preferences and needs of patients with a rheumatic disease regarding the structure and content of online self-management support

Ammerlaan, J.; Os‐Medendorp, Harmieke van; Nijhof, Nienke; Maat, Bertha; Scholtus, Lieske W.; Kruize, Aike A.; Bijlsma, J. W. J.; Geenen, Rinie

doi:10.1016/j.pec.2016.10.009

Cited by 13 publications

(15 citation statements)

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“…Since the seminal work of Bandura [ 11 ] on self-efficacy, it has been shown that self-efficacy helps in dealing with numerous adversities [ 8 , 12 , 29 ] and that self-efficacy is an important component of self-management in chronic diseases [ 30 ] including rheumatic diseases [ 31 ]. Our correlational observation does not allow causal interpretations.…”

Section: Discussionmentioning

confidence: 99%

The potential buffering role of self-efficacy and pain acceptance against invalidation in rheumatic diseases

et al. 2017

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A substantial amount of people with a rheumatic disease perceive invalidation consisting of lack of understanding and discounting (negative social responses). To get insight into the potential buffering role of self-efficacy and pain acceptance against invalidation, this cross-sectional study examined associations between these variables. Spanish speaking people (N = 1153, 91% female, mean age 45 ± 11 years) with one or multiple rheumatic diseases completed online the Illness Invalidation Inventory, the Chronic Pain Acceptance Questionnaire, and the Chronic Disease Self-Efficacy Scale. Higher self-efficacy (t = − 4.80, p = < 0.001) and pain acceptance (t = − 7.99, p = < 0.001) were additively associated with discounting. Higher self-efficacy (t = − 5.41, p = < 0.001) and pain acceptance (t = − 5.71, p = < 0.001) were also additively associated with lack of understanding. The combined occurrence of high self-efficacy and high acceptance was associated most clearly with lower lack of understanding (interaction: t = − 2.12, p = 0.034). The findings suggest the usefulness of examining whether interventions aimed at increasing self-efficacy and pain acceptance can help people with rheumatic diseases for whom invalidation is a considerable burden.

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Section: Discussionmentioning

confidence: 99%

The potential buffering role of self-efficacy and pain acceptance against invalidation in rheumatic diseases

et al. 2017

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“…Journal of School Nursing. (Van Bragt et al, 2015) -technologically recorded/conveyed (Cahill et al, 2016;Henry & Schor, 2015) • Progress monitoring (Krieger et al, 2009) -via follow-up phone calls (Shomaker & DeVeau-Rosen, 2016) -via "check-ins" on effectiveness of a written plan (Hommel et al, 2015;Van Bragt et al, 2015) -for warning signs of mental health crisis warranting help resources (Milton et al, 2017) • Coaching (Henry & Schor, 2015;van Hooft et al, 2017) -for behavior change (Morrison et al, 2014) -through problem solving and relaxation training (Marjolijn et al, 2016) -for self-management skills (Sattoe et al, 2015;Sinoo et al, 2018) -for coping strategies (Milton et al, 2017) -for self-efficacy (Ammerlaan et al, 2017) -through administering cognitive behavioral therapy (Hensel et al, 2016;Sharpe et al, 2017) -to shift from parent-management to self-management by child (Cahill et al, 2016) •…”

Section: Discussionmentioning

confidence: 99%

“…• Educating and assessing knowledge (Been-Dahmen et al, 2015;Henry & Schor, 2015;Hommel et al, 2015;Krieger et al, 2009;Marjolijn et al, 2016;Morrison et al, 2014;Sattoe et al, 2015;Sinoo et al, 2018) -informing of community resources (Krieger et al, 2009) -providing patient/family with written materials (Henry & Schor, 2015) -providing advice (Henry & Schor, 2015;Morrison et al, 2014) -offering psychoeducation (Sharpe et al, 2017) -promoting mental health awareness through age-appropriate booklets for all students in school (Sharpe et al, 2017) • Educating and assessing knowledge of student and parent -sharing information -providing tools -using written plan from provider to provide one-on-one education with student -educating teachers and school personnel about PNES Psychosocial • Training in emotion/identity management (Henry & Schor, 2015;Marjolijn et al, 2016;Sattoe et al, 2015) and cognitive restructuring (Marjolijn et al, 2016) • Exploring one's role in society with condition (Henry & Schor, 2015;Marjolijn et al, 2016;Sattoe et al, 2015) • Facilitating peer support, often in group setting (Henry & Schor, 2015;Hensel et al, 2016;Marjolijn et al, 2016) -involving peer community health workers or specialists (Ammerlaan et al, 2017;Ludman et al, 2016;Milton et al, 2017) or expert patients as trainers (Ammerlaan et al, 2017) • Involving parent (Cahill et al, 2016;Sattoe et al, 2015) -communicating via email (Henry & Schor, 2015) -creating plan with parent-involvement (Hommel et al, 2015) -info...…”

Section: Educationalmentioning

confidence: 99%

“…• Ability to recognize a health concern that would benefit from SMS (Ludman et al, 2016;McCusker et al, 2017) • Understanding child's dependency on parents and the developmental stage of the child (Ludman et al, 2016;McCusker et al, 2017) • Competence and confidence in ability to provide SMS based on patients' content and structure preferences (Ammerlaan et al, 2017;McCusker et al, 2017) School Nurse:…”

Section: Definition-informing Sourcementioning

confidence: 99%

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Hybrid Concept Analysis of Self-Management Support: School Nurses Supporting Students with Psychogenic Nonepileptic Seizures

Tanner

Gaudecker²,

Buelow³

et al. 2021

The Journal of School Nursing

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Self-management support has been identified as an effective nursing intervention for improving outcomes for people with chronic conditions, yet this concept lacks a clear definition. Furthermore, the concept has not been used in school nursing literature despite the clear connection between school nursing practice and tenets of self-management support. Additionally, the concept has not been explored in the context of difficult-to-manage mental health concerns, such as psychogenic nonepileptic seizures. A conversion disorder in which seizure events in the absence of abnormal brainwave activity result from stress, psychogenic nonepileptic seizures affect the quality of life and school experience for students experiencing them and could be addressed through self-management support. This hybrid concept analysis included a review of extant literature and semi-structured interviews with school nurses to ascertain a definition of self-management support in the context of school nursing using care of students with psychogenic nonepileptic seizures as an exemplar.

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“…Second, an open subscription network is a key approach for assisting chronic patients. This service publicizes transparent and open relationships of patients' preferences to enhance patients' self-management support [44]. This information then inspires online patients to follow and subscribe to other patients' profiles with similar experiences and share private health-care data in a developed social network.…”

Section: Discussionmentioning

confidence: 99%

Enhancing Online Patient Support through Health-Care Knowledge in Online Health Communities: A Descriptive Study

et al. 2018

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Online health communities (OHCs) should utilize health-care knowledge for enhancing online patient support. To examine the use of existing OHCs to identify the challenges and strategies of enhancing online patients’ decision-making support, we conducted a descriptive study to evaluate the information availability, user availability and knowledge usability in 100 carefully-selected health-related websites. On the basis of criteria for effective OHCs, we used three evaluation instruments for health-care professionals to review and score the websites. Questionnaire results were examined from the perspective of information, user and knowledge support. Results corroborate that over 80% of the websites facilitate effective social functions, whereas only 33% provide health-care decision-making services to online patients. Approximately 46% of them satisfy four or five effective OHCs’ criteria. Three of them only offer the functions of patients’ charts and journals to support health data management. Although the existing OHCs are facilitated with good social interaction and support, only a few can assist patients in making effective health-care decisions, not to mention properly using health-care knowledge support.

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Preferences and needs of patients with a rheumatic disease regarding the structure and content of online self-management support

Cited by 13 publications

References 30 publications

The potential buffering role of self-efficacy and pain acceptance against invalidation in rheumatic diseases

The potential buffering role of self-efficacy and pain acceptance against invalidation in rheumatic diseases

Hybrid Concept Analysis of Self-Management Support: School Nurses Supporting Students with Psychogenic Nonepileptic Seizures

Enhancing Online Patient Support through Health-Care Knowledge in Online Health Communities: A Descriptive Study

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