Communication about euthanasia in Dutch nursing homes.

In this research, we explore how competent nursing home residents in the Netherlands experience communication about euthanasia. Interviews were conducted with 15 nursing home residents. Three themes were found during data analysis: 1) The possibility to discuss euthanasia; 2) Interaction and 3) Anticipating the future. Whether or not euthanasia was discussed was influenced by the openness of the resident and the accessibility and openness of their medical practitioner. Important factors mentioned by respondents regarding interaction were the level of connectedness with others, the feeling of being understood and one's own firmness in holding on to the option of euthanasia in the future. Regarding anticipating the future, respondents felt reassured in having an advance directive. They expressed a lack of certainty whether the medical practitioner would be willing to eventually perform euthanasia. As a practical implication, ACP may provide a pathway for improvement of communication about euthanasia with competent residents.

"I Should've Been Able to Decide for Myself, but I Didn't Want to Be Left Alone." A Qualitative Interview Study of Clients' Ethical Challenges and Norms Regarding Decision-Making in Gender-Affirming Medical Care.

This qualitative study aimed to map and provide insight into the ethical challenges and norms of adult transgender and gender diverse (TGD) clients in gender-affirming medical care (GAMC). By doing so, we seek to make an empirical and constructive contribution to the dialogue on and moral inquiry into what good decision-making in GAMC should entail. We conducted 10 semi-structured interviews with adult Dutch TGD people who received GAMC. In our thematic analysis, we (1) included both ethical challenges and norms, (2) differentiated between explicit and implicit ethical challenges and norms, and (3) ascertained the specific context in which the latter emerged. We identified the following themes: (1) clients should be in the lead, (2) harm should be prevented, and (3) the decision-making process should be attuned to the individual client. These themes arose in the context of (1) a precarious client-clinician relationship and (2) distinct characteristics of GAMC. Our findings highlight divergent and dynamic decisional challenges and normative views-both within individual clients and among them. We conclude that there is no single ideal model of good decision-making in GAMC and argue that elucidating and jointly deliberating on decisional norms and challenges should be an inherent part of co-constructing good decision-making.

Sharing decisions amid uncertainties: a qualitative interview study of healthcare professionals' ethical challenges and norms regarding decision-making in gender-affirming medical care.

BACKGROUND: In gender-affirming medical care (GAMC), ethical challenges in decision-making are ubiquitous. These challenges are becoming more pressing due to exponentially increasing referrals, politico-legal contestation, and divergent normative views regarding decisional roles and models. Little is known, however, about what ethical challenges related to decision-making healthcare professionals (HCPs) themselves face in their daily work in GAMC and how these relate to, for example, the subjective nature of Gender Incongruence (GI), the multidisciplinary character of GAMC and the role HCPs play in assessing GI and eligibility for interventions. Given the relevance and urgency of these questions, we conducted a qualitative study among HCPs providing GAMC to transgender adults in the Netherlands. METHODS: In this qualitative research, we conducted 11 semi-structured interviews between May 2020 and February 2021 with HCPs (six mental health professionals, two HCPs in endocrinology, two in plastic surgery, and one in nursing) working in two distinct GAMC settings. We purposively sampled for professional background and years of experience in GAMC. We analyzed our interview data using thematic analysis. As some respondents were more inclined to speak about what should or ought to be done to arrive at good or right decision-making, we identified both ethical challenges and norms. Furthermore, in our analysis, we differentiated between respondents' explicit and implicit ethical challenges and norms and ascertained the specific context in which these challenges emerged. RESULTS: Respondents' ethical challenges and norms centered on (1) dividing and defining decisional roles and bounds, (2) negotiating decision-making in a (multidisciplinary) team, and (3) navigating various decision-making temporalities. These themes arose in the context of uncertainties regarding (1) GAMC's guidelines, evidence, and outcomes, as well as (2) the boundaries and assessment of GI. CONCLUSIONS: This interview study provides detailed empirical insight into both the explicit and implicit ethical challenges that HCPs experience and their ethical norms regarding decision-making. It also describes how uncertainties and (implicit) normativities concerning GAMC and GI pre-structure the moral environment in which these challenges and norms manifest. We provide normative reflections and recommendations on handling these ethical challenges in a way that is sensitive to the context in which they arise.

Moral values of Dutch physicians in relation to requests for euthanasia: a qualitative study.

BACKGROUND: In the Netherlands, patients have the legal right to make a request for euthanasia to their physician. However, it is not clear what it means in a moral sense for a physician to receive a request for euthanasia. The aim of this study is to explore the moral values of physicians regarding requests for euthanasia. METHODS: Semi-structured interviews were conducted with nine primary healthcare physicians involved in decision-making about euthanasia. The data were inductively analyzed which lead to the emergence of themes, one of which was about values regarding end-of-life decisions. RESULTS: Four clusters of values related to euthanasia requests are described: values related to 1) the patient; 2) the family; 3) the physician; and 4) life and death. The data show that the participants value patient autonomy as a necessary but not sufficient condition for meeting a euthanasia request. A good relationship with the patient and the family are important. For the physician, the values physician autonomy, responsibility, understanding the patient and relief of suffering play a role. Life as an intrinsic good and a peaceful death are also important values. CONCLUSION: This study shows that next to patient autonomy and the relationship with the patient and the family, it is important for the participants to act in accordance with their professional values and to do justice to values related to life and death. The awareness of going against the intrinsic value of life is crucial, even if performing euthanasia may result in a feeling of relief or gratitude afterwards.

Exploring a self-help coping intervention for pregnant women with a miscarriage history.

Pregnant women with a history of miscarriages experience symptoms of anxiety and depression in a subsequent pregnancy and are in need of support in the period after miscarriage, when trying to get pregnant again and during the first phase of pregnancy. The aim of this study was to investigate whether a Positive Reappraisal Coping Intervention (PRCI) and Daily Record Keeping (DRK) chart, developed for use in assisted conception treatment, are also appropriate for use in pregnant women with a history of miscarriage(s). In this convergent parallel mixed method study, thirteen women visiting an Early Pregnancy Unit and/or Recurrent Miscarriage Clinic in a university medical center in the Netherlands were selected on the basis of the number of miscarriages and age. Exclusion criteria were not speaking the Dutch language, pregnancy after fertility treatment and having a medical cause identified for the miscarriages. Women used the PRCI and DRK for 3 weeks in a subsequent pregnancy. Quantitative data were obtained from the DRK and were analyzed by reporting frequencies and means for each case. Qualitative data were collected by semi-structured interviews and were analyzed by using thematic analysis. The majority of the women were able to use the PRCI and DRK for 3weeks. Women adapted the way in which they used the PRCI and DRK based on their judgment about the effect, the intensity of the emotions they experienced, or whether they felt the effort to use these instruments to be worthwhile or not.

"A Somali girl is Muslim and does not have premarital sex. Is vaccination really necessary?" A qualitative study into the perceptions of Somali women in the Netherlands about the prevention of cervical cancer.

INTRODUCTION: Participation in Human Papillomavirus (HPV) vaccination and Papanicolaou Screening (Pap smears) is low among ethnic minorities in the Netherlands and hardly any information is available about the cervical cancer prevention methods of Somali women living in the diaspora. This qualitative study, based on the Health Belief Model (HBM) and an intersectionality-based framework, explores the perceptions of Somali women living in the Netherlands regarding measures to prevent cervical cancer. METHODS: Semi-structured interviews have been conducted with young Somali women aged 17-21 years (n = 14) and Somali mothers aged 30-46 years (n = 6). Two natural group discussions have been conducted with 12 and 14 Somali mothers aged 23-66 years. The collected data has been analyzed thematically for content. RESULTS: In this study, we have identified perceived barriers to the use of preventive measures across three major themes: (1) Somali women and preventive healthcare; (2) Language, knowledge, and negotiating decisions; and (3) Sexual standards, culture, and religion. Many issues have been identified across these themes, e.g., distrust of the Dutch health care system or being embarrassed to get Pap smears due to Female Genital Mutilation (FGM) and having a Dutch, male practitioner; or a perceived low susceptibility to HPV and cancer because of the religious norms that prohibit sex before marriage. CONCLUSIONS: Current measures in the Netherlands to prevent women from developing cervical cancer hardly reach Somali women because these women perceive these kinds of preventative measures as not personally relevant. Dutch education strategies about cervical cancer deviate from ways of exchanging information within the Somali community. Teachers can provide culturally sensitive information to young Somali women in schools. For Somali mothers, oral education (e.g., poetry or theater) about the Dutch health care system and men's roles in HPV transmission may be useful. An intersectional approach, grounded in the HBM, is recommended to promote equal access to preventive health care for Somali women.

Pregnancy after miscarriage: balancing between loss of control and searching for control.

Pregnant women who have had miscarriages face challenges in responding to the loss of the previous pregnancy and the uncertainties of the early pregnancy that follows. The research question in this qualitative study was: How do women experience miscarriage, conception, and the early pregnancy waiting period, and what types of coping strategies do they use during these periods? Twenty-four women were interviewed in a subsequent pregnancy after having a miscarriage. Data analyses resulted in an overarching theme described as "balancing between loss of control and searching for control." Although women realized there was little they could do to influence the outcome, they searched for strategies to increase the feeling of control in each period of waiting. The results of this study may contribute to interventions to support women during miscarriage and subsequent conception and pregnancy.

Patient reported barriers and facilitators to using a self-management booklet for hip and knee osteoarthritis in primary care: results of a qualitative interview study.

BACKGROUND: To enhance guideline-based non-surgical management of hip or knee osteoarthritis (OA), a multidisciplinary, stepped-care strategy has been implemented in primary care in a region of the Netherlands. To facilitate this implementation, the self-management booklet "Care for Osteoarthritis" was developed and introduced. The aim of the booklet was to educate patients about OA, to enhance the patient's active role in the treatment course, and to improve the communication with health care providers. To successfully introduce the booklet on a large scale we assessed barriers and facilitators for patients to using this booklet. METHODS: Seventeen primary care patients with hip or knee OA who received the self-management booklet participated in this qualitative study using semi-structured interviews. Purposive sampling was used to ensure diversity of the patients' view about the booklet. The interviews were transcribed verbatim and analysed using a thematic analysis approach. RESULTS: Three core themes with patient perceived barriers and facilitators to use the booklet emerged from the interviews: 1) the role of health care providers, 2) the patient's perceptions about OA and its manageability, and 3) the patient's perceptions about the usefulness of the booklet and patient's information needs. Regarding the first theme, a barrier was the lack of encouragement from health care providers to use the booklet in the treatment course of OA. Moreover, patients had doubts concerning the health care providers' endorsement of non-surgical treatment for OA. Barriers from the second theme were: thinking that OA is not treatable or that being pro-active during the treatment course is not important. In contrast, being convinced about the importance of an active participation in the treatment course was a facilitator. Third, patients' perceptions about the usefulness of the booklet and patients' information needs were both identified as barriers as well as facilitators for booklet use. CONCLUSIONS: This study contributes to the understanding of patient perceived barriers and facilitators to use a self-management booklet in the treatment course of OA. The results offer practical starting points to tailor the implementation activities of the booklet nationwide and to introduce comparable educational tools in OA primary care or in other chronic diseases.

Strategies used by respiratory nurses to stimulate self-management in patients with COPD.

AIMS AND OBJECTIVES: To gain an insight into strategies, adopted by Dutch respiratory nurses during clinic sessions, to improve self-management of patients with chronic obstructive pulmonary disease. BACKGROUND: Chronic obstructive pulmonary disease is highly prevalent and a significant cause of morbidity and mortality, impacting on quality of life and healthcare expenditure. Health promotion is therefore an important consideration. By applying specific strategies, respiratory nurses can play a major role in the promotion of self-management. Research has shown that respiratory nurses, who run clinics, have insufficient knowledge of evidence-based strategies that can be adopted to promote self-management among chronic obstructive pulmonary disease patients. It appears that respiratory nurses adopt their own strategies during clinic sessions. DESIGN: A qualitative research study was carried out using Grounded Theory method. METHODS: Data were collected during open interviews conducted by an external researcher with a nursing background. The interviews were analysed through coding after which categories were developed. RESULTS: Fourteen respiratory nurses were interviewed. The results show that respiratory nurses emphasise quitting smoking during the consult. Attention is also paid to inhalation medication and techniques. Other self-management strategies that respiratory nurses use are: application of specific interviewing techniques, referring to other healthcare professionals and providing tools for coping with the illness in everyday life. CONCLUSION AND RELEVANCE TO CLINICAL PRACTICE: The main emphasis during the clinic session is directed at quitting smoking. Other self-management strategies such as providing information regarding nutrition and exercise, instilling confidence and becoming an equal discussion partner, gain less attention. During the clinic session, respiratory nurses should also focus on these self-management strategies in addition to quitting smoking. Further research should be directed at self-management strategies used by respiratory nurses in relation to different characteristics of patients. In this way, a more patient-oriented form of consultation could be developed for chronic obstructive pulmonary disease patients.

Desisting and persisting gender dysphoria after childhood: a qualitative follow-up study.

The aim of this qualitative study was to obtain a better understanding of the developmental trajectories of persistence and desistence of childhood gender dysphoria and the psychosexual outcome of gender dysphoric children. Twenty five adolescents (M age 15.88, range 14-18), diagnosed with a Gender Identity Disorder (DSM-IV or DSM-IV-TR) in childhood, participated in this study. Data were collected by means of biographical interviews. Adolescents with persisting gender dysphoria (persisters) and those in whom the gender dysphoria remitted (desisters) indicated that they considered the period between 10 and 13 years of age to be crucial. They reported that in this period they became increasingly aware of the persistence or desistence of their childhood gender dysphoria. Both persisters and desisters stated that the changes in their social environment, the anticipated and actual feminization or masculinization of their bodies, and the first experiences of falling in love and sexual attraction had influenced their gender related interests and behaviour, feelings of gender discomfort and gender identification. Although, both persisters and desisters reported a desire to be the other gender during childhood years, the underlying motives of their desire seemed to be different.