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1.
J Speech Lang Hear Res ; 67(5): 1385-1399, 2024 May 07.
Article in English | MEDLINE | ID: mdl-38625147

ABSTRACT

PURPOSE: Stuttering is a speech condition that can have a major impact on a person's quality of life. This descriptive study aimed to identify subgroups of people who stutter (PWS) based on stuttering burden and to investigate differences between these subgroups on psychosocial aspects of life. METHOD: The study included 618 adult participants who stutter. They completed a detailed survey examining stuttering symptomatology, impact of stuttering on anxiety, education and employment, experience of stuttering, and levels of depression, anxiety, and stress. A two-step cluster analytic procedure was performed to identify subgroups of PWS, based on self-report of stuttering frequency, severity, affect, and anxiety, four measures that together inform about stuttering burden. RESULTS: We identified a high- (n = 230) and a low-burden subgroup (n = 372). The high-burden subgroup reported a significantly higher impact of stuttering on education and employment, and higher levels of general depression, anxiety, stress, and overall impact of stuttering. These participants also reported that they trialed more different stuttering therapies than those with lower burden. CONCLUSIONS: Our results emphasize the need to be attentive to the diverse experiences and needs of PWS, rather than treating them as a homogeneous group. Our findings also stress the importance of personalized therapeutic strategies for individuals with stuttering, considering all aspects that could influence their stuttering burden. People with high-burden stuttering might, for example, have a higher need for psychological therapy to reduce stuttering-related anxiety. People with less emotional reactions but severe speech distortions may also have a moderate to high burden, but they may have a higher need for speech techniques to communicate with more ease. Future research should give more insights into the therapeutic needs of people highly burdened by their stuttering. SUPPLEMENTAL MATERIAL: https://doi.org/10.23641/asha.25582980.


Subject(s)
Anxiety , Cost of Illness , Depression , Quality of Life , Stuttering , Humans , Stuttering/psychology , Female , Male , Adult , Quality of Life/psychology , Middle Aged , Anxiety/psychology , Depression/psychology , Depression/etiology , Young Adult , Stress, Psychological/psychology , Adolescent , Aged , Employment/psychology , Surveys and Questionnaires , Self Report
2.
J Tissue Viability ; 31(4): 794-799, 2022 Nov.
Article in English | MEDLINE | ID: mdl-35868969

ABSTRACT

OBJECTIVES: To explore how individuals with spinal cord injury self-manage the prevention and treatment of pressure ulcers and to provide insight into experiences with self-management support. DESIGN: Qualitative study using semi-structured interview and a deductive thematic analysis. SETTING: Community. PARTICIPANTS: Twelve of the 14 participating adults with a spinal cord injury had experience with pressure ulcers, and eight of these had a current pressure ulcer. RESULTS: Respondents suggested to tailor treatment of pressure ulcers to patients' individual wishes and capabilities of patients. Patients and caregivers need to be aware of the importance of determining the cause of pressure ulcers to prevent deterioration. Patients often depend on informal caregivers for follow-up and prevention, and healthcare professionals in non-SCI specialties often lack the knowledge needed to manage pressure ulcers in this specific patient group. Tailored education and peer support are important for patients to set boundaries, be assertive, and cultivate a positive attitude when dealing with pressure ulcers. It is difficult to combine treatment of severe pressure ulcers and preventive measures with work roles. Managing the social impact of pressure ulcers requires more coordination with caregivers. CONCLUSIONS: To support self-management of pressure ulcers in patients with a spinal cord injury, they must find out which preventive measures and treatments suit them best. Healthcare professionals play an important role in the self-management of pressure ulcers and can help patients deal with the emotional and social impact of pressure ulcers. To know patient's needs and tailor their education, healthcare professionals of non SCI organizations need to have knowledge of pressure ulcers management of this specific patient group.


Subject(s)
Pressure Ulcer , Spinal Cord Injuries , Adult , Humans , Pressure Ulcer/etiology , Pressure Ulcer/prevention & control , Spinal Cord Injuries/psychology , Qualitative Research , Skin Care , Caregivers
3.
J Med Internet Res ; 22(7): e17422, 2020 07 24.
Article in English | MEDLINE | ID: mdl-32706708

ABSTRACT

BACKGROUND: Web-based self-management programs have the potential to support patients with cardiovascular disease (CVD) in their self-management (eg, by focusing on behavior change and improving physical activity). The intervention mapping framework was used to develop a web-based program called Vascular View. The Vascular View program contained 6 modules (coping with CVD, setting boundaries, lifestyle, healthy nutrition, being physically active, interaction with health professionals) aiming to increase self-management behavior by tailoring to the perceived problems and (support) needs of patients after CVD. OBJECTIVE: The aim was to test the effectiveness of Vascular View before embarking on a full-scale randomized clinical trial (RCT) by evaluating the potential effectiveness and effect sizes of the Vascular View program and identifying outcome measures most likely to capture the potential benefits. METHODS: An explorative RCT was performed. Both control and intervention groups received care as usual and, in addition, the intervention group received 12 months of access to a web-based self-management program. Assessment occurred at baseline, 6 months, and 12 months. Outcome measures included general patient-reported outcome measurements: Illness Perception Questionnaire (IPQ), Rand-36, Patient Activation Measure, and patient self-efficacy. Module-specific patient-reported outcome measurements were Beliefs about Medicines Questionnaire, International Physical Activity Questionnaire, Dutch Healthy Diet Index, Fagerström Test for Nicotine Dependence (FTND), Alcohol Use Disorders Identification Test, and Perceived Efficacy in Patient-Physician Interaction. Linear mixed models for repeated measures using intention-to-treat and per-protocol analysis were applied to study differences between the patients in the intervention and control groups. Floor and ceiling effects were explored to give insight into the outcome measures most likely to capture the potential benefits. RESULTS: A total of 105 patients in the control group and 103 patients in the intervention group participated in the study. A positive direction of change between baseline and 12 months was shown for most outcome measurements in favor of the intervention group, of which 2 out of 10 outcomes showed a significant effect: attribution of cause of the disease to risk factors and immunity factors (IPQ) and dependency of nicotine (FTND). Floor and ceiling effects were seen in the IPQ, Rand-36, and the self-efficacy questionnaire. CONCLUSIONS: No conclusion for the efficacy of the Vascular View program or selection of outcome measurements can be taken yet. A process evaluation will be conducted to gain thorough insight into the working elements of the program, patient needs in eHealth, and the use of the program by patients. This can determine for whom web-based self-management programs will work and help to adapt the program. TRIAL REGISTRATION: Dutch Trial Register NTR5412; https://www.trialregister.nl/trial/5303. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/resprot.6352.


Subject(s)
Cardiovascular Diseases/therapy , Internet/standards , Self-Management/methods , Female , Humans , Male , Middle Aged , Surveys and Questionnaires , Telemedicine
4.
Patient Educ Couns ; 103(1): 159-164, 2020 01.
Article in English | MEDLINE | ID: mdl-31362901

ABSTRACT

OBJECTIVE: This observational study explores advanced practice nurses' (APN) performance in secondary prevention and self-management support in patients with cardiovascular disease. METHODS: Real-life consultations in three outpatient clinics were recorded on audio and analysed. First, discussed (sub)categories were determined using five categories of self-management: symptom management, treatment, biomedical cardiovascular risk factors, psychosocial consequences, and lifestyle changes. Second, the extent in which motivational interviewing aspects were applied was determined using the Behaviour Change Counselling Index (BECCI). RESULTS: In total, 49 consultations performed by five female APNs were analysed. Physical topics were discussed in 98% and psychological subthemes in 41% of the consultations. Although not all components of motivational interviewing were applied, talking about current behaviour and behaviours that should change were discussed, and information was provided. Especially setting targets and exchanging ideas on how to reach behavioural goals were applied to a small extent. CONCLUSION: Well-trained APNs in the current study do not carry out motivational interviewing in a structural and complete manner according to BECCI and do not discuss all self-management categories. PRACTICE IMPLICATIONS: Psychological topics should be more integrated in providing self-management support by APNs and the application of motivational interviewing should be enhanced by regularly and repeated training.


Subject(s)
Motivational Interviewing , Self-Management , Clinical Competence , Counseling , Female , Humans , Referral and Consultation
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