Self-care in Adults With a Retro-auricular Left Ventricular Assist Device: An Interpretive Description

Having a retro-auricular left ventricular assist device (LVAD) requires patients to learn specific self-care behaviors, with a considerable burden; the present study aimed at exploring and describing the experience of self-care in this population. An Interpretive Description was conducted, informing the analysis with the Middle-Range Theory of Self-care of Chronic Illness. A purposeful sample of ten people with a retro-auricular LVAD participated in in-depth, semi-structured interviews. Four themes were identified: Innovations and Limitations in Daily Life, Problems Detection, Response to Problems, and Learning Process. All of these were deeply influenced by a cross-cutting theme: Support System. People with a retro-auricular LVAD have self-care needs different from those of people with heart failure or with the abdominal version of the device, and there is a great need for targeted intervention that could be developed in consideration of our findings.

Reproduction and Genetic Responsibility: An Interpretive Description of Reproductive Decision-Making for Young People With Li-Fraumeni Syndrome

The reproductive decision-making of young people (aged 15–39 years) with Li-Fraumeni syndrome (LFS), an early onset inherited cancer syndrome, has not been studied in depth. Using interpretive description methodology, we conducted semi-structured interviews with 30 young Australians (mean age 25.5 years) diagnosed with LFS or at 50% genetic risk. With reflexive thematic analysis, we show how young people’s reproductive decision-making and ideals for family formation were shaped by a sense of genetic responsibility to ensure the health of future biological kin. Reproductive technology provided choices for family formation in the context of LFS and also complicated reproductive decisions, as these choices were difficult to understand, make, or carry out. We uphold that reproductive decision-making when living with LFS is a profoundly moral practice that may pose significant challenges for young people navigating their formative years. We offer genetic counseling practice recommendations to support individuals with LFS when making reproductive decisions.

Circumventing tobacco control and safety policies to promote waterpipe use in smoking venues: the perspective of staff in waterpipe smoking venues

ObjectiveTo understand Hong Kong waterpipe smoking (WPS) sales and promotion, including strategies to avoid policy enforcement, from the perspective of WPS venue staff.MethodsQualitative interviews and observations were guided by interpretive description. 20 WPS venue staff who were responsible for preparing and serving waterpipes to patrons and had worked at the bar for at least 3 months were recruited. In-depth semistructured interviews with WPS venue staff were conducted, in addition to covert and participant observations in 10 WPS venues in Hong Kong. Interpretive description involving constant comparative analysis of qualitative data was adopted to facilitate an inductive analytic approach to generate findings.ResultsTwo primary themes emerged from analyses of interview and observation data: strategies to avoid law enforcement, and perceived health and safety concerns linked to working and smoking in waterpipe venues. The findings suggest that many Hong Kong venues may be failing to comply with tobacco control policies and developing strategies to circumvent law enforcement. Moreover, waterpipe preparation, allowance of WPS and burning of charcoal in indoor areas were perceived as negatively affecting the health and safety of staff and customers.ConclusionsThe study provides preliminary evidence indicating the ineffectiveness of current tobacco control policy on WPS. Due to its risks to health and safety, and the need to sustain tobacco control efforts for their intended purpose, waterpipe-specific regulations and stricter surveillance on waterpipe sales and promotion are urgently required.

At the Heart of It All: Emotions of Consequence for the Conceptualization of Caregiver-Reported Outcomes in the Context of Colorectal Cancer

Colorectal cancer (CRC) can be demanding for primary caregivers; yet, there is insufficient evidence describing the caregiver-reported outcomes (CROs) that matter most to caregivers. CROs refer to caregivers’ assessments of their own health status as a result of supporting a patient. The study purpose was to describe the emotions that were most impactful to caregivers of patients with CRC, and how the importance caregivers attribute to these emotions changed from diagnosis throughout treatment. Guided by qualitative Interpretive Description, we analyzed 25 caregiver and 37 CRC patient interviews, either as individuals or as caregiver-patient dyads (six interviews), using inductive coding and constant comparative techniques. We found that the emotional aspect of caring for a patient with CRC was at the heart of caregiving. Caregiver experiences that engendered emotions of consequence included: (1) facing the patient’s life-changing diagnosis and an uncertain future, (2) needing to be with the patient throughout the never-ending nightmare of treatment, (3) bearing witness to patient suffering, (4) being worn down by unrelenting caregiver responsibilities, (5) navigating their relationship, and (6) enduring unwanted change. The broad range of emotions important to caregivers contributes to comprehensive foundational evidence for future conceptualization and the use of CROs.

Health Literacy and Behaviour among Pregnant Women with Obesity: A Qualitative Interpretive Description Study

Background: Obesity in pregnant women is increasing worldwide, affecting the health of both mother and baby. Obesity may be associated with inadequate health literacy, a central competence when navigating antenatal health information and services. This study explores women’s health literacy experiences among a sample of pregnant women with a prepregnant body mass index (BMI) >25 kg/m2.Methods: An inductive, qualitative study using an interpretive description methodology. Data was collected through ten semi-structured interviews with pregnant women with a prepregnancy BMI >25 kg/m2 attending antenatal care at the midwifery clinic at Aarhus University Hospital in the Central Denmark Region.Results: Pregnant women with obesity understand general health information provided by health professionals, but translating this knowledge into specific healthy behaviours presents a challenge. Although difficulties navigating booking systems and available digital services contribute to this problem, apps can help facilitate navigation. However, successful navigation may depend on adequate e-health literacy. Conflicting information from health professionals, social media and families also present a challenge for pregnant women, requiring a broad skillset for critical evaluation and resolution.Conclusions: Adequate health literacy is necessary for pregnant women receiving antenatal care to (i) translate general health information into personalised healthy behaviour, (ii) access and navigate complex and digitalised systems, and (iii) critically evaluate conflicting information. Person-centred differentiation in the organisation of antenatal care may benefit vulnerable pregnant women with inadequate health literacy.Trial registration: The study was registered cf. General Data Protection Regulation, Aarhus University Journal number 2016-051-000001, serial number 1934.

Parental Attitudinal and Behavioral Change Associated With Prevention-Focused Parenting Education: An Interpretive Description

Prevention-focused parenting education programs (P-FPEPs) provide knowledge and support to parents to strengthen parent–child relationships, enhance parental and family well-being, and promote healthy child development. The positive impact of such programs on child health and development is well documented. Yet, how P-FPEPs influence parents remains unclear. The objective of this study was to explore parental perceptions of changes associated with participation in a P-FPEP. We analyzed data using interpretive description with qualitative responses from 459 parents who participated in nine different P-FPEPs in a large Canadian city. Participation in a P-FPEP changed parents’ relationships with themselves, their children, their partners, and their community. Participants’ relationship with themselves as parents changed as they recognized the value of self-care without guilt, gained knowledge of typical child development, and developed greater confidence in their parenting. Positive changes in participants’ relationships with their children were facilitated by better understanding the perspective of the child, improving communication, feeling more connected to their child, and changing parenting behavior. For many participants, the relationship with their partner improved when they learned about different parenting styles and began communicating more openly. Participants’ relationships with the larger community were strengthened as they experienced a sense of normalization of their parenting experiences, developed connections with other parents, and learned about community resources. Independent of any specific program curriculum or structure, change associated with P-FPEPs focused on how a shift in understanding and attitudes changed relationships and consequently changed parenting behavior.