Technology is changing many aspects of our daily lives including how we share our experiences. While there have been many advances in technology to sustain life, it has also led to changes in how we die. This study utilized publicly available online narratives (vlog postings) written by individuals diagnosed with a terminal illness to explore themes on what dying individuals wished to say about their experiences (n = 39). While the content of the messages varied, universally all postings provided advice for living a good life. The implications of these narratives are still unknown. Questions remain about the role online peer support plays in the dying process and the extent to which sharing one’s digital story can affect others online. The act of being introspective at the end of life and the desire for social connection is similar to other forms of social work intervention such as dignity therapy suggesting an opportunity for further exploration. Additionally, these end-of-life narratives could also serve as a tool for educating future social work professionals about the experiences of those diagnosed with a terminal illness.
Information about traditional end-of-life care customs was gathered from Maori New Zealanders. How health and palliative care services helped or hindered families to use their customs within different health care settings was also examined. The use of the digital story-telling method to create personalised short videos is reported on in this paper. Kaupapa Maori Research and social constructivist methods were employed to conduct face-to-face interviews with 61 Maori families (including someone with a life limiting illness), plant medicine healers, spiritual practitioners and health and palliative care providers. Of these, sixteen family representatives participated in a digital story telling workshop. A Kaupapa Maori thematic analysis confirmed earlier findings that the digital storytelling method was a useful technique to record Maori traditional caregiving customs. Subject material aligned with four dominant themes; (1) ‘whanau manaaki’, where the mana (value, prestige, authority) of family was given visibility and was celebrated; (2) the ‘importance of wairuatanga’ provided insight into the place of Maori spirituality, (3) the ‘importance of rongoa rakau’ highlighted the role of traditional plant medicines; and (4) the ‘cultural support provided by health professionals’ reflected the care values health and palliative Q3 care professionals should ideally adopt.
Conceptualizations of luxury usually derive from individuals who are agentic and empowered. Building upon the consumer-centered experiential movement, this paper deviates from researching the typical, listening instead to consumer narratives associated with luxury in contexts where agency is transitioning. We revisit notions of sacred and profane within the liminal space of palliative and end-of-life care. Adopting purposeful sampling, and agency enhancing storytelling, pathographies in particular, consumption experiences are narrated by patients, families, and bereaved users (n = 140) of multiple hospices (n = 5) in the UK. Findings shift the evolving consumer centric conceptualization of luxury into conceptions of liminal space, place (hospices as cathedrals), and people (community). A psychosocial narrative emerges which conceptualizes experiences as lived, personalized, integrated, familiar, transformational, hedonic, eudaimonic, and (dis)connected. Our discussion extends notions of the sacred and profane into the mundane and illustrates the ways in which those navigating a liminal space encounter unexpected yet astonishing luxury experiences.
BACKGROUND: People living with life-threatening illness experience unmet existential needs despite the growing research and clinical field of palliative care. Narrative interventions show promise in managing these problems, but more knowledge is needed on the characteristics of narrative interventions and the feasibility of using personal narratives in a hospital.
AIM: To review the literature on personal narratives in hospital-based palliative care interventions and to strengthen palliative care practices.
DESIGN: We conducted a systematic integrative review with qualitative analysis and narrative synthesis in accordance with PRISMA where applicable (PROSPERO#:CRD42018089202).
DATA SOURCES: We conducted a systematic search in PubMed, Embase, Scopus, Cinahl, SocINDEX and PsychInfo for primary research articles published until June 2018. We assessed full-text articles against the eligibility criteria followed by a discussion of quality using the Critical Appraisal Skills Programme.
RESULTS: Of 480 articles, we found 24 eligible for this review: 8 qualitative, 14 quantitative and 2 mixed methods. The articles reported on dignity therapy, legacy building, outlook, short-term life review and life review. Data analysis resulted in five themes: core principles, theoretical framework, content of narrative, outcome and, finally, acceptability and feasibility.
CONCLUSION: Various types of systematic palliative care interventions use personal narratives. Common to these is a shared psychotherapeutic theoretical understanding and aim. Clinical application in a hospital setting is both feasible and acceptable but requires flexibility regarding the practices of the setting and the needs of the patient.
Despite advances in treatment options, many patients diagnosed with cancer ultimately face the premature ending of their life. Under these circumstances, patients are confronted with the challenge of re-articulating their personal experiences and identities in ways that accommodate a changed reality and help them create meaning at the end of life. Their storytelling constitutes a particular type of illness story, distinct from other related categories. For example, although restitution narratives are driven by recovery, end-of-life stories come forth in relation to unattainable health and the contemplation of death. Health-care professionals may support the storytelling process. Techniques include diary keeping, reading stories written by other patients, and the co-creation of stories between patients and spiritual guides. Beyond having a therapeutic function, these personal stories are valuable pedagogical materials that help health-care professionals understand the end-of-life experience and they create more efficient care for patients.
BACKGROUND: Enhancing quality of life takes precedence in the terminal stage of a disease, when a cure is considered impossible and all alternative methods to prevent disease progression have been exhausted. Life review, involving appreciating accomplishments and resolving conflicts, is widely considered to be an effective approach to bringing peace to terminal patients.
PURPOSE: This study was conducted to assess the effects of life review on quality of life in terminal patients.
METHODS: The Cochrane Library, PubMed, MEDLINE, CINAHL, CEPS, and ProQuest databases were searched for original studies published between 2007 and July 2018. Studies that used experimental designs to assess the effects of life review on quality of life in terminal patients, involved patients aged >18 years, and were published in English or Chinese were considered eligible for inclusion. Studies that measured quality of life in individuals other than patients as well as unpublished papers or data were excluded. The search terms used included "life review," "end of life," "terminal or terminally ill," "advanced cancer," "palliative," "hospice," and "quality of life." The quality of each included study was assessed using the Downs and Black checklist.
RESULTS: Six studies with 296 patients were included in the review. The participants in the included studies were from multiple countries. Life review was found to affect quality of life significantly (95% CI [0.147, 0.668], Z = 3.062, p < .05). The selected studies exhibited moderate heterogeneity (I = 42.407, p > .1).
CONCLUSIONS: Life review was found to affect quality of life significantly in the participants in the included studies. The feasibility and safety of applying life review interventions should be considered for terminal patients, and implementers of these interventions should be trained and qualified. Only a few studies in the literature have evaluated the effects of life review therapy in terminal patients. Further studies that use stricter selection criteria are necessary to evaluate the efficacy of the life review intervention before its adoption in clinical practice.
Research aims: This scoping review maps the existing literature on narrative interventions within a palliative care and end-of-life context.
Methods: A scoping review was performed to address the research question: What observational or randomized controlled trials have been performed to evaluate narrative interventions in the palliative care setting? A search across multiple electronic databases was performed. The search results were screened. Relevant articles were reviewed for the identification of common themes and challenges.
Results: After reviewing 495 citations from electronic searches, and 44 articles from author archives or from manual review of article reference lists, we identified 34 articles for inclusion. Narrative interventions have focused on reflection or communication, and have been studied among providers, students, patients, and caregivers. Only patient/caregiver studies utilized randomized controlled design. Most studies were small and at the level of evaluating feasibility. Challenges include a high degree of heterogeneity among interventions, as well as heterogeneity among parameters for evaluating those interventions.
Conclusion: Narrative interventions are actively being evaluated with the intention of improving communication and wellbeing among all parties within the palliative care and end-of-life experience. The field would benefit from selecting a subset of outcomes that are comparable across studies, and a common framework for describing narrative interventions. Scant literature exists regarding narrative interventions to assist providers in communication.
Informal family caregivers make a significant contribution to the U.S. health care system, and the need for caregivers will likely increase. Gaining deeper insights into the caregiver experience will provide essential knowledge needed to support the future caregiver workforce delivering care. Discourse analysis is a viable approach in analyzing textual caregiver data that focuses on the end-of-life caregiving experience. The purpose of this study was to conduct an in-depth discourse analytic examination of 13 hours of caregiver interview data, which reveal the multiplicity of shifting stances and perceptions of one caregiver in the midst of end-of-life care, specifically with regard to his perceptions of self (caregiver) and other (care recipient). By isolating a specific but limited set of reference terms used throughout the discourse, we gained systematic glimpses into the mind and perceptions of this single caregiver in relation to his role as caregiver for his terminally ill wife.
OBJECTIVE: To identify common themes and topics that patients nearing the end of life want to discuss when sharing their life stories.
METHODS: Twenty audio-recorded transcripts of open-ended interviews of patients cared for by a palliative care team when approaching the end of life were analyzed using a qualitative analysis.
RESULTS: Qualitative analysis revealed that the primary contextual factors that patients drew upon to generate his or her life story are life events (including upbringing, job, education, travel, trauma, hardships, special events, military history, and hobbies), family and support system, and values and beliefs. Participants used their current medical condition, which included mortality, morbidity, and prognosis, to frame their life story.
CONCLUSION: Patients facing serious illness incorporate four major themes when reflecting upon their lives to create their personal life story: life events, family and support system, values and beliefs, and current medical condition.
Background: Substituted judgment assumes adequate knowledge of patient’s mind-set. However, surrogates’ prediction of individual healthcare decisions is often inadequate and may be based on shared background rather than patient-specific knowledge. It is not known whether surrogate’s prediction of patient’s integrative life-story narrative is better.
Methods: Respondents in 90 family pairs (30 husband-wife, 30 parent-child, 30 sibling-sibling) rank-ordered 47 end-of-life statements as life-story narrative measure (Q-sort) and completed instruments on decision-control preference and healthcare-outcomes acceptability as control measures, from respondent’s view (respondent-personal) and predicted pair’s view (respondent-surrogate). They also scored their confidence in surrogate’s decision-making (0 to 4 = maximum) and familiarity with pair’s healthcare-preferences (1 to 4 = maximum). Life-story narratives’ prediction was examined by calculating correlation of statements’ ranking scores between respondent-personal and respondent-surrogate Q-sorts (projection) and between respondent-surrogate and pair-personal Q-sorts before (simulation) and after controlling for correlation with respondent-personal scores (adjusted-simulation), and by comparing percentages of respondent-surrogate Q-sorts co-loading with pair-personal vs. respondent-personal Q-sorts. Accuracy in predicting decision-control preference and healthcare-outcomes acceptability was determined by percent concordance. Results were compared among subgroups defined by intra-pair relationship, surrogate’s decision-making confidence, and healthcare-preferences familiarity.
Results: Mean (SD) age was 35.4 (10.3) years, 69% were females, and 73 and 80% reported = very good health and life-quality, respectively. Mean surrogate’s decision-making confidence score was 3.35 (0.58) and 75% were = familiar with pair’s healthcare-preferences. Mean (95% confidence interval) projection, simulation, and adjusted-simulation correlations were 0.68 (0.67–0.69), 0.42 (0.40–0.44), and 0.26 (0.24–0.28), respectively. Out of 180 respondent-surrogate Q-sorts, 24, 9, and 32% co-loaded with respondent-personal, pair-personal, or both Q-sorts, respectively. Accuracy in predicting decision-control preference and healthcare-outcomes acceptability was 47 and 52%, respectively. Surrogate’s decision-making confidence score correlated with adjusted-simulation’s correlation score (rho = 0.18, p = 0.01). There were significant differences among the husband-wife, parent-child, and sibling-sibling subgroups in percentage of respondent-surrogate Q-sorts co-loading with pair-personal Q-sorts (38, 32, 55%, respectively, p = 0.03) and percent agreement on healthcare-outcomes acceptability (55, 35, and 67%, respectively, p = 0.002).
Conclusions: Despite high self-reported surrogate’s decision-making confidence and healthcare-preferences familiarity, family surrogates are variably inadequate in simulating life-story narratives. Simulation accuracy may not follow the next-of-kin concept and is 38% based on shared background.
Background: Cannabis is increasingly used by persons at end of life to ameliorate symptoms such as pain, spasticity, anorexia, or anxiety. Cannabis hyperemesis is a distressing adverse effect of chronic use and may cause significant morbidity. Unfortunately, the clinical presentation of this syndrome may be subtle in a person with complex medical issues or disability. Providers must remain vigilant for possible variations in presentation in these populations.
Aim: To assess literature on cannabis hyperemesis and present unique considerations for clinical assessment and treatment for patients at end of life.
Design: Initial literature scoping yielded limited evidence on the subject in the setting of chronic disease and disability. A case of cannabis hyperemesis in a person with advanced amyotrophic lateral sclerosis is presented to illustrate challenges in diagnosis and management in this setting. A narrative synthesis of current literature on assessment and management and special considerations for evaluation and treatment for patients under palliative care was performed.
Results: Several unique considerations for the diagnosis and management of cannabis hyperemesis in palliative care patients are highlighted in the case presented, including: (1) Symptoms may possibly be abolished through decrease rather than complete abstinence from cannabis, (2) Frequent hot baths may not be present in patients with physical impairments in activities of daily living, and (3) Management of primary symptoms (pain, spasticity, nausea, and anxiety) in the end-of-life care patient must be considered to maximize comfort.
Conclusion: The presentation of cannabis hyperemesis may be atypical in palliative care patients due to disability. More work is needed to improve risk stratification for patients using cannabis for palliative care.
PURPOSE OF REVIEW: People with cancer commonly experience persistent pain and psychological distress. Interventions are needed which address the multifactorial nature of pain and depression, yet few studies have examined the impact of mindfulness-based interventions (MBIs) for cancer-related pain and depression.
RECENT FINDINGS: MBIs for cancer-related pain and depression can be effectively delivered across a range of modalities and show promise for alleviating mood and some physical health symptoms, although not always pain. There is some evidence for the cost-effectiveness of MBIs.
SUMMARY: The field of MBIs would benefit from greater methodological rigour and investigation into a broader range of cancer populations to increase the knowledge base and in turn the evidence base on which interventions can be developed to the benefit to patients with cancer-related pain and depression.
PURPOSE: Siblings of children and young people diagnosed with cancer are commonly reluctant to talk about their experiences due to the circumstances of the illness situation. This article aims to bring voice to experience and inform practice by investigating what and how three young sisters narrate about their illness experiences in personal blogs on the Internet.
METHODS: A narrative methodology for the analysis of life storytelling was applied primarily to investigate the sister's coping strategies and support needs.
RESULTS: The results show how the sisters constructed their own space for narration, with the main aims of expressing their feelings about the illness and seeking social support. The telling of their experiences along with encouraging comments from a supportive audience enabled a change in position from feeling neglected and silenced to being a recognized agent and caring sister. In addition, through their narrative coping the sisters went from powerless to powerful in their position in relation to cancer.
CONCLUSION: The results highlight the need for siblings to be able to narrate experience in a supportive context, where the processing of their relationship with the ill sister/brother should be understood as an important element of their coping with cancer and death.
Advanced care planning (ACP) and end-of-life discussions are especially difficult among persons living with human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome (AIDS) as a result of patients' lack of trust in family and providers, HIV-related stigma, misunderstood spirituality concerns, social isolation, and other factors. Previous research has demonstrated that relatively few persons living with HIV/AIDS engage in ACP, yet developing culturally sensitive methods of ACP is imperative. One such method is digital storytelling, a video narrative that can be used to share ideas or aspects of a life story.
The aim of this study was to examine perspectives from providers and persons living with HIV/AIDS about the acceptability, benefits, and technological challenges of and barriers to using digital storytelling for ACP. A qualitative descriptive design was employed using focus groups of 21 participants in South Central Appalachia. Transcribed data were analyzed using qualitative content analysis. Findings revealed patient and provider ideas about ACP, factors related to digital story acceptability, stigma against persons living with HIV/AIDS, and concern for the legality of ACPs expressed in digital story format. Future research should focus on the process of creating digital stories as an intervention to improve ACP in this unique aggregate.
"Qu'est-ce que tu vas faire après moi ?" est le témoignage d'un homme habité par cette question que sa compagne lui pose juste avant de mourir. Le désarroi est si violent que l'urgence pour lui est de partir, mais ne pas disparaître, au contraire. Il prend la route pendant plus d'un an à bord d'un van, à la rencontre de tous leurs amis aux quatre coins de l'hexagone et à l'étranger, jusqu'en Colombie où ils se sont connus. Il écrit sur un cahier le récit du deuil qu'il est en train de vivre au jour le jour, en direct avec ses émotions et l'impressionnante alchimie qui s'opère autour de l'absence.
Coping affects somatic and psychological outcomes. This article explores narratives in a book, Kamikaze Diaries: Reflections of Japanese Student Soldiers, which report on the ways of coping used by each kamikaze participant before and during military service. The purpose of this study is to observe the possibility of a trend in coping strategies and consider how these trends inform us about other populations facing imminent death. This study analyzed data and extracted meaning from the narratives in the book (thematic content analysis). Within the thematic content analysis, the Ways of Coping scale was used, which describes the coping strategies people use when facing problems. The most frequently used coping strategies before they entered the military were "Accept Responsibility," "Endurance/Obedience/Effort," and "Self-Control," while once in the military, they were "Accept Responsibility" and "Endurance/Obedience/Effort." All the coping strategies used by kamikaze pilots appeared to focus on the passive self, which may be the type of coping in other populations facing death.
The aim of this study was to gain an understanding of the experiences of extended longevity as perceived by centenarians. Centenarians (people over 100 years of age) are the fastest growing group of the ageing population in developed countries. Ten centenarians aged between 100 and 106 years, living in the Lower North Island of New Zealand, participated in the study. The biographical narrative interpretive method of inquiry guided data collection through face-to-face interviews, and thematic analysis was subsequently undertaken. Four themes were identified: (a) ‘becoming a centenarian: ‘Just another day’; (b) ‘growing up in a privileged environment’ that revealed four sub-themes: ‘having freedom and choice’, ‘being loved and nurtured’, ‘living healthy lifestyles’ and having ‘good education prospects’; (c) ‘unique opportunities in adult life’; and (d) ‘positive ageing and celebration of longevity’. The centenarians spoke nonchalantly about their experience of turning 100 and positive personalities were prominent features of the participants, who all expressed a sense of acceptance and satisfaction with life and contentment with living in the present, a feature throughout their lives that was ongoing and at an intergenerational level. This study has provided further insights into the existing literature on longevity and through the narratives of the centenarians has demonstrated the value of Erikson's psycho-social stages of development and Tornstam's theory of gerotranscendence when considering positive ageing.