Qualitative Health Research

doi: 10.1177/1049732318808699pmid: 30384824

Myrin Westesson, Linda; Wallengren, Catarina; Baghaei, Fariba; Sparud-Lundin, Carina

doi: 10.1177/1049732318789631pmid: 30066606

Hemophilia is a complex condition to manage, especially for parents to newly diagnosed children. This grounded theory study explores parents’ learning processes and illness management in daily life during the first year after the start of their child’s treatment. Using a longitudinal qualitative design, eight parents of four children were interviewed repeatedly during 12 to 14 months. The core category, reaching independence through forced learning, reflected the parents’ learning process and their experiences of the challenges during the first year after start of treatment. Incentives for learning were characterized by a longing to reach independence and regain control of one’s life situation. The emerging key incentive for learning was a desire to become independent of health care professionals. Early home treatment reduced the impact of the illness, and by supporting parents in different ways during the learning process, health care professionals can promote the parents’ trajectory toward independency.

Dean, Marleah; Rauscher, Emily A.

doi: 10.1177/1049732318788377pmid: 30051759

Little is known about how men and women who test positive for a BRCA gene mutation or have a strong family history of carrying a BRCA mutation manage disclosures about their BRCA-related cancer risks and family planning decision-making. By conducting interviews with 25 men and 20 women, this study investigated men’s and women’s approaches to disclosing their BRCA-related cancer risks and family planning decision-making. Guided by the Disclosure Decision-Making Model (DD-MM), this study demonstrates that men and women assess both information and the recipients of disclosures when making disclosure decisions. Theoretical implications for the DD-MM are discussed along with practical implications for hereditary cancer risk and family planning.

McHale, Ciaran; Hayward, Mark; Jones, Fergal W

doi: 10.1177/1049732318789897pmid: 30095031

Mindfulness-based group therapy shows promise as a treatment for distressing voice hearing. However, fostering engagement in groups can be challenging, and no theory of engagement in group therapy for distressing voices exists to guide practice or research. This study employed Grounded Theory Method to build a theory of engagement in mindfulness-based groups for distressing voices. Ten service-users and three therapists were interviewed about their experiences of such groups. The model that emerged involves a recursive process of investing in change and continually evaluating its usefulness and safety. Barriers to engagement were often overcome, but sometimes compromised perceived safety, leading to dropout. For others, group participation led to rewards, some of which were integrated beyond group termination. Group engagement can be encouraged by establishing universality around voice hearing early, reducing uncertainty, sharing difficulties with mindfulness practices, and mapping group progress to create a cohering sense of collaboration on therapy tasks.

Carrion, Melissa L.

doi: 10.1177/1049732318792505pmid: 30095032

Recent increases in childhood vaccine exemption rates are a source of concern within the public health community. Drawing from the health belief model and in-depth interviews with 50 mothers (n = 50) who refused one or more vaccine, the aim of this study was to identify the specific reasons and the broader decision context(s) that underscored participants’ vaccine refusal. Results indicate that the vast majority of participants supported vaccination until a particular cue motivated them to consider otherwise, and qualitative analysis identified three main categories into which these cues fell: perceived adverse reactions, endorsements from health care professionals, and perceived contradiction among expert-endorsed messages. These categories point to the central role of health communication in motivating vaccine refusal. Better understanding these cues can inform vaccine communication scholarship and practice, and also lend theoretical insight into the intertextual nature of controversial health messages and decisions.

Fournier, Tristan; Poulain, Jean-Pierre

doi: 10.1177/1049732318793417pmid: 30132729

In this article, we analyze qualitatively the understanding of and reactions to personalized nutrition (PN) among the French public. Focus groups were conducted to identify the opinions and discourses about two applications of knowledge from nutritional (epi)genomics: a biotechnology (nutrigenetic testing) and a public awareness campaign (the “first thousand days of life” initiative). Our objective was to understand to what extent PN could lead to changes in eating practices as well as in the representations of food–health relationships within France, a country characterized by a strong commitment to commensality and a certain “nutritional relativism.” Although discourses on nutritional genomics testify to a resistance to food medicalization, nutritional epigenomics appears as more performative because it introduces the question of transgenerational transmission, thus parental responsibility.

Oster, Richard T.; Bruno, Grant; Mayan, Maria J.; Toth, Ellen L.; Bell, Rhonda C.; ,

doi: 10.1177/1049732318794205pmid: 30160198

We sought to understand the needs of involved Nehiyaw (Cree) fathers who supported their partners during pregnancy. We used qualitative description and a community-based participatory research approach. We carried out in-depth semi-structured interviews with six Nehiyaw fathers. Four also participated in photovoice and follow-up interviews. All data were content analyzed qualitatively. Fathers felt they had to support their partners and overcome challenges resulting from intergenerational colonial impacts (residential schools particularly) by reclaiming their roles and acknowledging the pregnancy as a positive change. Providing support was possible through their own strong support system stemming from family, faith, culture, and a stable upbringing with positive male role models and intact Nehiyaw kinships. Perinatal programming did little to include fathers. Attempts to improve perinatal care and outcomes should allow more inclusion of and support for Indigenous fathers through genuinely incorporating into care traditional culture and Elders, families, flexibility, cultural understanding, and reconciliation.

Sercu, Maria; Beyens, Ilse; Cosyns, Marc; Mertens, Fien; Deveugele, Myriam; Pype, Peter

doi: 10.1177/1049732318796477pmid: 30234423

Lynn conceptualized end-of-life (EoL) care for patients with advanced chronic-progressive illnesses as a combination of life-preserving/palliative care, the palliative aspect gradually becoming the main focus as death approaches. We checked this concept by exploring the advanced-terminal illness trajectories of 50 patients. Strategies heralding active therapy exhaustion were the catalyst for a participant’s awareness of terminality, but were not a decisive factor in the divergent EoL care pathways we detected. The terms life-preserving and palliative do not adequately capture EoL care pathways due to their conceptual ambiguity. Conversely, the concept of EoL care encompassing three palliative care modalities (life-prolonging palliative therapy, restorative palliative care, and symptom-oriented [only] palliative care), each harboring a different blend of life-preserving and symptom-comforting aspects, proved adequate. These modalities could run serially, oscillatorily, or parallelly, explaining the divergent EoL care pathways. We suggest an adjustment of the model of Lynn and reconsider the traditional palliative care concept.

van der Meide, Hanneke; Teunissen, Truus; Collard, Pascal; Visse, Merel; Visser, Leo H

doi: 10.1177/1049732318796831pmid: 30198419

For people living with multiple sclerosis (MS), one’s own body may no longer be taken for granted but may become instead an insistent presence. In this article, we describe how the body experience of people with MS can reflect an ongoing oscillation between four experiential dimensions: bodily uncertainty, having a precious body, being a different body, and the mindful body. People with MS can become engaged in a mode of permanent bodily alertness and may demonstrate adaptive responses to their ill body. In contrast to many studies on health and illness, our study shows that the presence of the body may not necessarily result in alienation or discomfort. By focusing the attention on the body, a sense of well-being can be cultivated and the negative effects of MS only temporarily dominate experience. Rather than aiming at bodily dis-appearance, health care professionals should therefore consider ways to support bodily eu-appearance.

Brown, Sarah; Lhussier, Monique; Dalkin, Sonia M.; Eaton, Simon

doi: 10.1177/1049732318768807pmid: 29676217

Care planning has been described as a “better conversation” that helps people with long-term conditions to be in control of planning their care. Each person with long-term conditions faces individual challenges and each health care setting is fundamentally different, so there is a need for empirical testing of the specific mechanisms through which care planning may lead to health improvements. A rapid realist review was conducted to unearth underpinning mechanisms leading to outcomes in particular contexts. These are expressed in the form of realist theories, which are developed and refined through the review process. Fifty-one full text studies were included in the review. Seven program theories were iteratively tested and refined. A detailed description of what care planning is and what it should look like in practice has been achieved in the form of realist theories.