"You can be cured, but cancer never leaves you behind": an interdisciplinary approach into the embodied cancer experiences among adult Colombian childhood/adolescent cancer survivors.

PURPOSE: Childhood or adolescent cancer survivors (CACS) are an understudied population in Colombia and, in general, in Central and South America. Worldwide, studies typically focus on high-income settings while approaching CACS' experiences from a biomedical or psychological perspective. However, both perspectives miss an important aspect of survivorship after childhood or adolescent cancer: the affected individual's subjective experiences of having a disabled body. This qualitative study aimed to explore the embodied experiences of Colombian adults who survived cancer during their childhood or adolescence to better understand how CACS relate to their altered body and world. METHODS: By integrating phenomenological insights and conducting comprehensive life-story interviews, we explored the various ways in which survivors' cancer experiences affect their bodily sense of self-from the acute phase of the disease until well into adulthood. A total of ten life-stories interviews and one focus group were carried out with seven CACS. All participants were survivors of a different type of childhood/adolescent cancer. The results were analyzed thematically, focusing on the embodied aspects of participants' experiences. RESULTS: We developed three main themes regarding the embodied cancer experience among participating CACS: Firstly, participants' body changes because of the cancer and its treatment, which makes them aware of their body. Secondly, they adapt to this experience in different bodily ways. Finally, they carry bodily traces of their cancer experience in the present as well as into the future. CONCLUSIONS: The CACS participating in this study report that their experience with cancer has been embodied throughout their lives, changing their sense of their body and how they relate to it, and leaving traces into the present and their imagined future.

In constant search of the good: a qualitative study into insiders' perspectives on living well with dementia.

Introduction: The new concept of 'living well with dementia' is currently gaining traction in practice, policy, and research. However, people with dementia and their carers' own understanding of this concept has not received much scholarly attention. This is because empirical studies into living well with dementia are predominantly quantitative; there are only a few qualitative studies on this topic. This study therefore sets out to investigate what living well means for 'insiders' in an everyday context. Methods: To explore insiders' own perspectives on living well with dementia, we conducted interviews and focus group discussions with 21 dementia stakeholders. The study included ten individuals with mild-to-moderate dementia living at home, five family carers who are or have been involved in the care for a person with dementia, and six health and social care professionals. Results: Living well with dementia, for our study participants, revolves around shaping their daily lives according to their values. In this sense, living well with dementia is no different than without. As it involves the values of the person with dementia and those of their social network, living well is both an individual and a collective concern. Having dementia undermines people with dementia's ability to substantiate their values, but it is still possible to live well. As they attempt to shape living well with dementia, respondents encounter tensions within the social network and within the person with dementia. To handle these tensions, they work for mutual attunement by using sensitivity and switching between leading and following in social interactions. Discussion: Living well with dementia in a daily context is a dynamic process in which people with dementia, family carers, and professionals constantly seek the good together. This insight contributes to a better understanding of stakeholders' ongoing, invisible efforts to mutually attune. It may also help bypass dichotomizing approaches to dementia. Finally, it opens up new venues for research into reciprocity in the care collective. The article closes with recommendations to improve dementia care and support in light of these findings.

Positive Health dialogue tool and value-based healthcare: a qualitative exploratory study during residents' outpatient consultations.

OBJECTIVE: To explore how residents experienced the application of the Positive Health dialogue tool (PH-tool) during outpatient consultations and its influence on the delivery of value-based healthcare (VBHC). DESIGN: Qualitative study using non-participant observations of outpatient consultations during which residents used the PH-tool, followed by longitudinal individual, semistructured interviews. To analyse the data from observations and interviews, observational form notes' summarisation and categorisation, and an iterative-inductive thematic approach was used. PARTICIPANTS: Eight residents-five from the ear, nose, and throat-department and three from the gastroenterology-hepatology-department-were selected through convenience sampling, accounting for 79 observations and 79 interviews. RESULTS: Residents had bivalent experiences with using the PH-tool. Residents discussed three main benefits: a gained insight into the individual patient's context and functioning, a changed dynamics in resident-patient communication, and an increased awareness regarding value in terms of patient-related outcomes and healthcare costs. Three barriers became apparent: doubts regarding the PH-tool's relevance and scope, boundaries of superspecialised medical professionals, and a lack of demarcation in clinical practice. CONCLUSION: The PH-tool use can be beneficial for residents during outpatient consultations with new patients and follow-up in cases of multidimensional problems, particularly in cases of chronic conditions and generalist care. In these situations, the tool yielded valuable patient information beyond physical health, helped foster patient engagement, and enabled tailoring the treatment plan to individual patients' needs. On the other hand, the PH-tool was not a good fit for simple problems, clearly demarcated help requests, periodic follow-up consultations, or verbose patients. In addition, it was not suitable for superspecialised care, because it yielded an abundance of general information. For particular patients and problems, using the PH-tool seems a promising strategy to increase VBHC delivery. Nevertheless, further research and detailing is needed to better align the PH-tool's broad intent and clinical practice.

Positive Health and the happy professional: a qualitative case study.

BACKGROUND: Primary care professionals (PCPs) face mounting pressures associated with their work, which has resulted in high burn-out numbers. Increasing PCPs' job satisfaction is proposed as a solution in this regard. Positive Health (PH) is an upcoming, comprehensive health concept. Among others, this concept promises to promote PCPs' job satisfaction. However, there is limited research into PH's effects on this topic. This study, therefore, aims to provide insight into how adopting PH in a general practice affects PCPs' job satisfaction. METHODS: An ethnographic case study was conducted in a Dutch general practice that is currently implementing PH. Data collected included 11 semi-structured interviews and archival sources. All data were analyzed thematically. RESULTS: Thematic analysis identified three themes regarding PCPs' adoption of PH and job satisfaction, namely [1] adopting and adapting Positive Health, [2] giving substance to Positive Health in practice, and [3] changing financial and organizational structures. Firstly, the adoption of PH was the result of a match between the practice and the malleable and multi-interpretable concept. Secondly, PH supported PCPs to express, legitimize, and promote their distinctive approach to care work and its value. This strengthened them to further their holistic approach to health and stimulate autonomy in practice, with respect to both patients and professionals. Thirdly, the concept enabled PCPs to change their financial and organizational structures, notably freeing time to spend on patients and on their own well-being. This allowed them to enact their values. The changes made by the practice increased the job satisfaction of the PCPs. CONCLUSIONS: PH contributed to the job satisfaction of the PCPs of the general practice by functioning as an adaptable frame for change. This frame helped them to legitimize and give substance to their vision, thereby increasing job satisfaction. PH's malleability allows for the frame's customization and the creation of the match. Simultaneously, malleability introduces ambiguity on what the concept entails. In that regard, PH is not a readily implementable intervention. We recommend that other organizations seeking to adopt PH consider whether they are willing and able to make the match and explore how PH can help substantiate their vision.

Women's perspective on life after total laryngectomy: a qualitative study.

BACKGROUND: Physical and psychosocial challenges are common after total laryngectomy. The surgery leads to lifelong changes in communication, airway, swallowing and appearance. As we move towards health models driven by patient-centred care, understanding the differential impacts of surgical procedures on subgroups of patients can help improve our care models, patient education and support systems. This paper discusses the experiences of women following total laryngectomy. AIMS: To gain an insight into the impact of total laryngectomy on women's daily life while identifying their specific rehabilitation needs. METHODS & PROCEDURES: This paper is based on in-depth, semi-structured interviews with eight women who had undergone total laryngectomy. These interviews were conducted with women at least 1 year after they had undergone total laryngectomy, and the participants did not have recurrent disease. Using an interview guide, participants were encouraged to discuss their everyday experiences, while also focusing on issues typical to women. The transcribed interview data were analysed by thematic analysis, taking interpretative phenomenological analysis as a lead. OUTCOMES & RESULTS: The interviews revealed three main themes: disease and treatment as a turning point, re-establishing meaningful everyday activities, and persistent vulnerability. Participants reported experiencing challenges in their rehabilitation process due to physical disabilities, dependency on others and experienced stigma. Women-specific challenges arose in dealing with the altered appearance and voice, performing care activities, and the spousal relationship (including intimacy). CONCLUSIONS & IMPLICATIONS: Women who undergo total laryngectomy are likely to experience issues in returning to work, the performance of informal care-work, the spousal relationship, intimacy and social interaction due to stigmatization. Medical pretreatment counselling and multidisciplinary rehabilitation programmes should help patients form realistic expectations and prepare them for the changes they will face. A gender- and age-matched laryngectomized patient visitor can contribute to this process. Rehabilitation programmes should incorporate the partner and offer psychosocial support for women following total laryngectomy to return to their former roles in family life, social life and work-related activities.