Purpose The purpose of this research was to explore women’s experiences after breast surgery with scar characteristics and symptoms, and its impact on their health-related quality of life (HRQOL). Material and methods A qualitative study using semi-structured face-to-face interviews was conducted among women following prophylactic, oncologic, or reconstructive breast surgery in the Netherlands. A directed content analysis was performed using guiding themes. Themes were “physical and sensory symptoms,” “impact of scar symptoms,” “personal factors,” “impact of scar interventions,” and “change over time.” Results The study population consisted of 26 women after breast surgery. Women experienced a wide range of symptoms like adherence, stiffness, pain, and uncomfortable sensations. Scar characteristics as visibility, location, texture, and size, influenced satisfaction with their appearance. The impact of scar symptoms is reflected in physical, social, emotional, and cognitive functioning, thereby affecting HRQOL. The experienced impact on HRQOL depended on several factors, like personal factors as the degree of acceptance and environmental factors like social support. Conclusion Women can experience a diversity of scar characteristics and symptoms, which play a central role in the perceived impact on HRQOL. Since scarring can have a considerable impact on HRQOL, scarring after prophylactic, oncologic and reconstructive breast surgery should be given more attention in clinical practice and research. Implications for Cancer Survivors Considering scarring as a common late effect after breast surgery and understanding the variety of experiences, which could impact HRQOL of women, can be beneficial in sufficient information provision, expectation management, and informed decision making.
Summary Background A venous leg ulcer (VLU) has a significant negative impact on quality of life. Prevention of a VLU is not yet imbedded in clinical practice because risk factors for developing a first VLU are not well known. Objectives To explore further the progression of chronic venous disease (CVD) into a first VLU from the patient's perspective. Methods A qualitative study using semistructured interviews was conducted among male and female patients with a VLU. Patients from primary and secondary care, under and over 50 years of age, and with first and recurrent VLUs were included. The interviews were transcribed and analysed using a narrative approach to a thematic analysis. Transcripts were organized in chronological order and an iterative process was used to code the transcripts. Results Four key themes and the connections made between them emerged from the 11 narratives on the progression of CVD towards a first VLU: ‘comorbidity’, ‘mobility’, ‘work and lifestyle’ and ‘acknowledgment of CVD’. Comorbidity was linked to reduced mobility and late acknowledgment of CVD. Comorbidity also affected work and lifestyle and vice versa. Work and lifestyle affected mobility and was linked to the acknowledgment of CVD. Conclusions A reduction in mobility as a result of comorbidity and work and lifestyle occurred before the VLU developed. Patients did not recognize symptoms of CVD and did not acknowledge the chronicity of CVD. Healthcare professionals should be aware of reductions in mobility and the knowledge deficit in patients with CVD. What's already known about this topic? Not all patients with chronic venous disease (CVD) develop a venous leg ulcer (VLU). A patient's quality of life decreases significantly when a VLU develops. Risk factors for the development of a first VLU in patients with CVD are not well known, unlike risk factors for other chronic wounds like diabetic foot ulcer and pressure ulcers. What does this study add? The patient's narrative towards the development of a first VLU, a series of events. Insight into the events (comorbidity, mobility, work and lifestyle) that patients themselves link to the development of a VLU. Insight into the patients’ acknowledgment of CVD in the progression of CVD towards a first VLU. What are the clinical implications of this work? More awareness is needed of CVD symptoms among patients and healthcare providers, as well as more awareness for prevention of a VLU in clinical practice. New insights (for further studies) are needed into the concept of mobility and the development of a VLU. Improved patient education and follow‐up are needed for patients with CVD. Linked Comment: Magin. Br J Dermatol 2020; 183:207–208.
Purpose Our aim was to develop consensus on the definition and operationalization of communicative participation (CP) in 2- to 8-year-old children with language disorders (LDs). A clear definition and operationalization can facilitate the discussion about children's communication problems in daily life between parents and professionals. Method In an online Delphi study, anonymized thoughts and opinions were collected on the definition and operationalization of CP in young children with LD. The 47 Delphi panel members were Dutch parents, young adults with LDs, teachers and assistants, speech-language pathologists, clinical linguists, and clinical researchers. Thematic content analysis was used to develop a concept definition and items operationalizing CP. The Delphi panel rated the suitability of concept definitions using a 7-point Likert scale. Concept definitions were revised with feedback from the Delphi panel until consensus was achieved. The Delphi panel rated items on how well they operationalize CP, using the same Likert scale. Results The majority (79%) of the Delphi panel indicated that the essence of CP was captured by the definition: “CP is understanding and being understood in a social context, by applying verbal and non-verbal communication skills.” In addition, 33 behavioral items were developed. Conclusion This study resulted in strong consensus on the definition of CP between Dutch parents and professionals. Items were developed that can inform speech-language pathologists on the type of questions to ask a child's parents or teacher when discussing CP. Further research is needed on how the items can best be used in clinical practice.
Large groups in society, in particular people with low literacy, lack the necessary proactivity and problem-solving skills to be self-reliant. One omnipresent problem area where these skills are relevant regards filling in forms and questionnaires. These problems could be potentially alleviated by taking advantage of the possibilities of information and communication technology (ICT), for example by offering alternatives to text, interactive self-explaining scales and easily accessible background information on the questionnaires' rationale. The goal of this paper was to present explorative design guidelines for developing interactive questionnaires for low-literate persons. The guidelines have been derived during a usercentered design process of the Dutch Talking Touch Screen Questionnaire (DTTSQ), an interactive health assessment questionnaire used in physical therapy. The DTTSQ was developed to support patients with low health literacy, meaning they have problems with seeking, understanding and using health information. A decent number of guidelines have been derived and presented according to an existing, comprehensive model. Also, lessons learned were derived from including low-literate persons in the usercentered design process. The guidelines should be made available to ICT developers and, when applied properly, will contribute to the advancement of (health) literacy and empower citizens to fully participate in society.
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