Facilitators and barriers in using comics to support family caregivers of patients receiving palliative care at home: A qualitative study.

BACKGROUND: Family caregiving at home is highly important for people receiving palliative treatment, but also a complex experience, subject to implicit social expectations. This study empirically explored the claim that comics benefit palliative care practice, through evaluating a graphic novel's value as an aid in supportive conversations with family caregivers. AIM: To identify facilitators and barriers in using Naasten (Loved ones), a Dutch research-based graphic novel about family caregivers providing care at the end-of-life. DESIGN: Qualitative study, following thematic content analysis. PARTICIPANTS: Three focus groups with family caregiver consultants, palliative care volunteers, and healthcare professionals (total N = 23) who supported family caregivers; and individual telephone interviews with family caregivers to whom the book was presented (N = 4). RESULTS: Barriers and facilitators related to: (1) the family caregiver, (2) impact on the family caregiver, (3) impact on the conversation between the person who provides support and the family caregiver, (4) their relationship, and (5) the person who provides support. Naasten was reported as recognizable and supportive, and powerful in raising emotions, awareness and conversation. Barriers concerned the book's impact due to its style and guidance of a conversation, and doubts about its surplus-value. CONCLUSIONS: Emotionally impactful comics may support bereaved family caregivers, but should be introduced with care among current family caregivers, for example, ensuring a right fit, introduction, and follow-up-while taking into account a caregiver's individual situation, needs, abilities, and affinity with the medium. Comics are preferably used in educational settings, contributing to professional awareness and tailored support of family caregivers.

Feeling called to care: a qualitative interview study on normativity in family caregivers' experiences in Dutch home settings in a palliative care context.

BACKGROUND: Family caregivers, such as partners or other family members, are highly important to people who desire to stay at home in the last phase of their life-limiting disease. Despite the much-investigated challenges of family caregiving for a patient from one's direct social network, lots of caregivers persevere. To better understand why, we aimed to specify how normative elements - i.e. what is considered good or valuable - shape family caregivers' experiences in Dutch home settings. METHODS: From September 2017 to February 2019, a total of 15 family caregivers, 13 bereaved family caregivers, and 9 patients participated in one-time in-depth interviews. The data were qualitatively analyzed following a grounded theory approach. RESULTS: Central to this study is the persistent feeling of being called to care. By whom, why, and to what? Family caregivers feel called by the patient, professionals entering normal life, family and friends, or by oneself; because of normative elements of love, duty, or family dynamics; to be constantly available, attentive to the patient while ignoring their own needs, and assertive in managing the caring situation. The prospect of death within the palliative care context intensifies these mechanisms with a sense of urgency. CONCLUSIONS: Our analysis showed a difference between feeling called upon in the caring situation on the one hand, and how caregivers tend to respond to these calls on the other. Taking into account the inherent normative and complex nature of family caregiving, the pressing feeling of being called cannot - and perhaps should not - simply be resolved. Caring might be something families just find themselves in due to being related. Rather than in feeling called upon per se, the burden of care might lie in the seeming limitlessness to which people feel called, reinforced by (implicit) social expectations. Support, we argue, should enable caregivers to reflect on what norms and values guide their responses while acknowledging that caring, despite being burdensome, can be a highly important and rewarding part of the relationship between partners or family members.

Patient and Health Care Provider Experiences With a Recently Introduced Patient Portal in an Academic Hospital in the Netherlands: Mixed Methods Study.

BACKGROUND: In the Netherlands, the health care system and related information technology landscape are fragmented. Recently, hospitals have started to launch patient portals. It is not clear how these portals are used by patients and their health care providers (HCPs). OBJECTIVE: The objective of this study was to explore the adoption, use, usability, and usefulness of a recently introduced patient portal in an academic hospital to learn lessons for the implementation of patient portals in a fragmented health care system. METHODS: A mixed methods study design was used. In the quantitative study arm, characteristics of patients who used the portal were analyzed, in addition to the utilization of the different functionalities of the portal. In the qualitative study arms, think-aloud observations were made to explore usability. Focus group discussions were conducted among patients and HCPs of the dermatology and ophthalmology outpatient departments. Thematic content analysis of qualitative data was carried out and overarching themes were identified using a framework analysis. RESULTS: One year after the introduction of the portal, 24,514 patients, 13.49% of all patients who visited the hospital, had logged in to the portal. Adoption of the portal was associated with the age group 45 to 75 years, a higher socioeconomic status, and having at least one medical diagnosis. Overarching themes from the qualitative analyses were (1) usability and user-friendliness of the portal, (2) HCP-patient communication through the portal, (3) usefulness of the information that can be accessed through the portal, (4) integration of the portal in care and work processes, and (5) HCP and patient roles and relationships. CONCLUSIONS: One year after the introduction of the patient portal, patients and HCPs who used the portal recognized the potential of the portal to engage patients in their care processes, facilitate patient-HCP communication, and increase patient convenience. Uncertainties among patients and HCPs about how to use the messaging functionality and limited integration of the portal in care and work processes are likely to have limited portal use and usefulness.

Impact of moral case deliberation in healthcare settings: a literature review.

BACKGROUND: An important and supposedly impactful form of clinical ethics support is moral case deliberation (MCD). Empirical evidence, however, is limited with regard to its actual impact. With this literature review, we aim to investigate the empirical evidence of MCD, thereby a) informing the practice, and b) providing a focus for further research on and development of MCD in healthcare settings. METHODS: A systematic literature search was conducted in the electronic databases PubMed, CINAHL and Web of Science (June 2016). Both the data collection and the qualitative data analysis followed a stepwise approach, including continuous peer review and careful documentation of our decisions. The qualitative analysis was supported by ATLAS.ti. RESULTS: Based on a qualitative analysis of 25 empirical papers, we identified four clusters of themes: 1) facilitators and barriers in the preparation and context of MCD, i.e., a safe and open atmosphere created by a facilitator, a concrete case, commitment of participants, a focus on the moral dimension, and a supportive organization; 2) changes that are brought about on a personal and inter-professional level, with regard to professional's feelings of relief, relatedness and confidence; understanding of the perspectives of colleagues, one's own perspective and the moral issue at stake; and awareness of the moral dimension of one's work and awareness of the importance of reflection; 3) changes that are brought about in caring for patients and families; and 4) changes that are brought about on an organizational level. CONCLUSIONS: This review shows that MCD brings about changes in practice, mostly for the professional in inter-professional interactions. Most reported changes are considered positive, although challenges, frustrations and absence of change were also reported. Empirical evidence of a concrete impact on the quality of patient care is limited and is mostly based on self-reports. With patient-focused and methodologically sound qualitative research, the practice and the value of MCD in healthcare settings can be better understood, thus making a stronger case for this kind of ethics support.