Balancing on life's ladder: A meta-ethnography of the existential experiences of siblings of children with complex care needs.

AIM: To synthesize and interpret existing qualitative research on the existential experiences of siblings of children with complex care needs. DESIGN: Noblit and Hare's interpretive meta-ethnography. METHODS: The study has been registered in the international prospective register for systematic reviews (PROSPERO). Noblit and Hare's 7-step procedure was followed and reciprocal translation was performed to analyse the data and develop a line of argument synthesis. DATA SOURCES: A comprehensive systematic literature search of five databases, along with extensive manual searches, was completed in November 2022. The final sample comprised 18 studies published between 2010 and 2022. RESULTS: A line of argument, expressed through an overarching metaphor, "balancing on life's ladder", illustrates the core findings of siblings' fluctuating experiences of existential well-being, and encapsulates four third-order themes: the emotional turmoil of siblings, interrupted family life, siblings strive to be themselves and siblings struggle to cope. CONCLUSION: Growing up with a sibling with complex care needs made children feel invisible, lonely and struggling to find the courage to cope. By adopting a lifeworld approach, nurses can become aware of healthy siblings' unmet needs. Future research is needed on how nurses can contribute to siblings' existential well-being, in primary - and secondary health care settings. IMPLICATIONS: The study provides insight into siblings' existential experiences and factors improving their well-being, enabling nurses to provide a more optimized lifeworld-led clinical practice. IMPACT: Healthcare, nursing education and practice should be informed by the knowledge of existential issues. Nurses are well-positioned to work alongside families to provide family-centered care. Our findings have implications for health policies tailored to the needs of children with chronically ill siblings. REPORTING METHOD: This review adheres to the Equator and improving reporting of meta-ethnography (eMERGe) guidelines. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution, because the data comprised previously published studies.

Dignity in end-of-life care at hospice: An Action Research Study.

BACKGROUND: Safeguarding the dignity of patients at the end of life is a key objective in palliative care practice in Denmark. The concept of dignity and how it influences a dying persons' quality of life is thus influential in end-of-life care at hospices. However, what is meant by dignity, how dignity is understood and practiced by healthcare professionals in Danish hospices, and whether this relates to the patients' understandings and needs concerning dignity remains unanswered. AIM: The aim of this study was to explore and improve dignity in care through an action research study with patients and hospice staff at two different hospices in Denmark. This was done by exploring how patients and healthcare professionals expressed their understandings and needs concerning dignity and involving participants in the research process with the goal of improving dignity in care. METHODS: An action research method with reflection-of-praxis and action-in-praxis was applied. It was combined with methods of semi-structured individual interviews with twelve patients, five staff and nine focus-group interviews with staff. RESULTS: Three themes emerged from the analysis of data. The themes were as follows: (1) being understood, (2) contributing and (3) holistic care. Deeper analysis indicated that staff understandings of dignity mostly focused on preserving patients' autonomy, whereas patients expressed needs for relational and spiritual aspects of dignity. Staff were mostly concerned about preserving patients' autonomy when providing dignity in care, however, through the action-in-praxis they increased their awareness on their own praxis and patients' needs and understanding concerning dignity. The theoretical model on dignity presented in the study also worked as a map to guide staffs' reflections on dignity in praxis and facilitated a broader focus on supporting and caring for patients' dignity in care. We believe this study has improved dignity in care at the two hospices involved in the study.

An EAPC white paper on multi-disciplinary education for spiritual care in palliative care.

BACKGROUND: The EAPC White Paper addresses the issue of spiritual care education for all palliative care professionals. It is to guide health care professionals involved in teaching or training of palliative care and spiritual care; stakeholders, leaders and decision makers responsible for training and education; as well as national and local curricula development groups. METHODS: Early in 2018, preliminary draft paper was written by members of the European Association for Palliative Care (EAPC) spiritual care reference group inviting comment on the four core elements of spiritual care education as outlined by Gamondi et al. (2013) in their paper on palliative care core competencies. The preliminary draft paper was circulated to experts from the EAPC spiritual care reference group for feedback. At the second stage feedback was incorporated into a second draft paper and experts and representatives of national palliative care organizations were invited to provide feedback and suggest revisions. The final version incorporated the subsequent criticism and as a result, the Gamondi framework was explored and critically revised leading to updated suggestions for spiritual care education in palliative care. RESULTS: The EAPC white paper points out the importance of spiritual care as an integral part of palliative care and suggests incorporating it accordingly into educational activities and training models in palliative care. The revised spiritual care education competencies for all palliative care providers are accompanied by the best practice models and research evidence, at the same time being sensitive towards different development stages of the palliative care services across the European region. CONCLUSIONS: Better education can help the healthcare practitioner to avoid being distracted by their own fears, prejudices, and restraints and attend to the patient and his/her family. This EAPC white paper encourages and facilitates high quality, multi-disciplinary, academically and financially accessible spiritual care education to all palliative care staff.

Current measures of distress may not account for what's most important in existential care interventions: Results of the outlook trial.

OBJECTIVE: Compare the efficacy of two interventions addressing emotional and existential well-being in early life-limiting illness. METHOD: Primary trial analysis (n = 135) included patients with advanced cancer, congestive heart failure, or end-stage renal disease; Arm 1 received the Outlook intervention, addressing issues of life completion and preparation, and Arm 2 received relaxation meditation (RM). Primary outcomes at five weeks (primary endpoint) and seven weeks (secondary): completion and preparation (QUAL-E); secondary outcomes: anxiety (POMS) quality of life (FACT-G) and spiritual well-being (FACIT-Sp) subscales of faith, meaning, and peace. RESULTS: Average age was 62; 56% were post-high school-educated, 54% were married, 52% white, 44% female, and 70% had a cancer diagnosis. At baseline, participants demonstrated low levels of anxiety (<5 on POMS subscale) and depression (<10 on CESD) relative to population norms. Results of the primary analysis revealed no significant differences in mean Preparation by treatment arm at five weeks (14.4 Outlook vs. 14.8 RM; between-group difference -0.4 [95% CI, -1.6, 0.8], p = 0.49) or seven weeks (15.2 vs.15.4; between-group difference -0.2 [95% CI, -1.5, 1.0], p = 0.73). There were also no significant differences in mean Life Completion by treatment arm between five weeks (26.6 Outlook vs. 26.3 RM; between-group difference 0.2 [95% CI, -1.2, 1.7], p = 0.76) or seven weeks (26.5 vs. 27.5; between-group difference -1.0 [95% CI, -2.7, 0.7], p = 0.23). Compared to RM, Outlook participants did not have significant differences over time in the secondary outcomes of overall quality of life, anxiety, depression, FACT-G subscales, and FACIT-Sp subscales. DISCUSSION: In early-stage life-limiting illness, Outlook did not demonstrate a significant difference in primary or secondary outcomes relative to RM. Results underscore the importance of pre-screening for distress. Qualitatively, Outlook participants were able to express suppressed emotions, place illness context, reflect on adaptations, and strengthen identity. Screening for distress and identifying specified measures of distress, beyond anxiety and depression, is essential in our ability to adequately assess the multi-dimensional mechanisms that decrease existential suffering.

[Spiritual needs of patients in an emergency room]. / Spirituelle Bedürfnisse von Patienten eines Notfallzentrums.

BACKGROUND: Spiritual needs (spN) are important for human beings-independently of religious affiliation. They can be a resource for coping with stressful situations, e.g., those triggered by the acute onset of a disease. Emergency rooms are hospital departments with high medical performance which may cause a particular insecurity among emergency patients. The present study is the first to examine spiritual needs in a sample of patients in the emergency room. METHODS: A total of 383 out of 479 patients were approached and asked to complete the German version of the Spiritual Needs Questionnaire (SpNQ-20). All consented to the collection of demographics and clinical data. The analysis encompassed descriptive statistics, correlations analysis, univariate and multiple variance analysis. RESULTS: The needs for inner peace and generative needs (to pass something on to others, to do something for others) were more important than religious (rN) and existential (eN) needs. We did not find a correlation between spN on the one hand and the reason for consultation, the severity, and the number of comorbidities on the other hand. Age did not play a decisive role, rather, patients' needs, especially rN, were significantly more important among women than among men. CONCLUSION: Even in an emergency situation, people are ready to express their spN. Early assessment of these needs exposes important nonmedical aspects of the sick person and helps to consider the assessed needs. Further studies will show whether this has an impact on the further course of treatment and the well-being of the patients.

'Maybe we are losing sight of the human dimension' - physicians' approaches to existential, spiritual, and religious needs among patients with chronic pain or multiple sclerosis. A qualitative interview-study.

OBJECTIVE: Research suggests that existential, spiritual, and religious issues are important for patient's psychological adjustment when living with chronic pain and multiple sclerosis. However, there is a paucity of studies investigating how physicians experience and approach these patients' needs. DESIGN: Physicians' experiences with and approaches to existential, spiritual, and religious needs when treating chronic pain or multiple sclerosis were studied in eight semi-structured interviews and analysed using interpretative phenomenological analysis (IPA). RESULTS: Physicians found that only few patients had spiritual and religious needs; however, they experienced that every patient were struggling with existential challenges related to the illness and rooted in a changed identity and approaching death. How the physicians approached these needs appeared to be influenced by six conditions: Their medical culture, training, role, experiences of time pressure, their personal interests, and interpersonal approach. CONCLUSION: Physicians' training seems better suited to meet biomedical objectives and their patients' concrete needs than patients' wish for a relational meeting focused on their subjective lifeworld. This challenge is discussed in relation to modern patient-centeredness, doctor-patient relationship, culturally constructed experiences of privacy, and future clinical practice and research needs.

Coping with transitions in life: a four-year longitudinal narrative study of single younger people with dementia.

Background: People with younger onset dementia (YOD <65 years) experience a great transformation of existential life. Living alone, they lack the support of a partner, and have a higher risk of moving into a residential care facility. Aim: To explore how people living alone with YOD experience and cope with transitions during the progression of dementia. Method: A longitudinal qualitative approach was used. From 2014 to 2018, we interviewed 10 persons with YOD every 6 months for up to four years. Findings: Two significant main transitions and themes were registered under the perspective; experiencing and coping with (1) receiving the diagnosis of dementia and (2) moving to a residential care facility, which covers two subthemes: moving to a supported living accommodation and moving to a nursing home. To get the diagnosis was initially experienced as a dramatic disaster, while moving to residential care were mainly experienced as positive. With efficient cognitive and emotion-focused coping strategies, the participants adapted and experienced a mostly good life for a long time. Conclusion: People with dementia can describe their lived experiences for a long time after receiving the diagnosis. They adapt and preserve a feeling of a rather good life by the efficient use of various coping strategies. High-quality public support is of significant importance to assist them in sustaining quality of life and vitality.

"To be, or not to be": experiencing deterioration among people with young-onset dementia living alone.

Having dementia before the age of 65 (YOD) represents a radical break from an age-normative and expected life course. The disease afflicts the person's identity, threatens the self-image and self-confidence, and erodes the person's plans. The aim of the study was toexamine how people living alone with YOD perceive the course of dementia, their needs, and coping strategies, with a focus on narrating everyday life experiences. A longitudinal study using a qualitative approach was used. Five interviews, each with 10 informants, took place every 6 months from 2014 to 2017. The main theme is the person's experiences of changes of identity over time. The most significant aspects of their experiences of the dementia affecting them and their reactions are these: the initial signs, coping efforts, concealing the diagnosis, social retraction, existential anxiety, revival of the self, worse and worse, and health personnel as background. The study concluded thatpeople with dementia are able to describe their experiences and needs for a long time during the progression of dementia. Their voices should be listened to for planning of services. Personalized care should be used to support them in order to preserve their identity in a normalized everyday life as far as possible.

Existential challenges in young people living with a cancer diagnosis.

PURPOSE: In Sweden, approximately 500 people between the ages of 15 and 39 are diagnosed with cancer each year. When someone is diagnosed with a life-threatening disease, existential issues are easily triggered. Young adults are in a developmental phase of life and are exposed to an extra amount of pressure. The Internet and social media are a daily part of the life of young adults and the use of blogs is common. The aim of this study was to elucidate the theoretical framework of Yalom and his four 'givens' expressed in blogs written by young adults living with various cancer diagnoses in Sweden. METHOD: This study used a qualitative method in which written stories from six public blogs were analysed using qualitative content analysis. RESULTS: The findings offer valuable in-depth knowledge about the existential issues in this population. The results can be described as a journey with several existential challenges and with death as an impending threat. The bloggers' awareness of their mortality was described as creating a sense of loss and existential loneliness. CONCLUSIONS: This study shows that young adults are empowered by the writing of blogs and that blogs can play an important part in increasing wellbeing and a sense of coherence within this population.