Le 14 février 2015, Christiane, la mère de Catherine Rombouts, décède en Belgique après avoir fait le choix de l'euthanasie. Atteinte d'une pathologie lourde, elle a décidé de sa mort. La photographe a suivi et accompagné sa mère jusqu'à la fin, réalisant des images de ses derniers instants. L'historienne Sophie Richelle documente le thème de l'euthanasie grâce à des témoignages et à des données chiffrées.
PURPOSE: Perinatal and neonatal palliative care guidelines recommend the provision of photographs and other mementos as an element of care for parents bereaved by neonatal loss. However, little is known about parents' perceptions of such bereavement interventions. This study explored the significance of memory-making for bereaved parents and the impact of memory-making on parents' experience of loss following neonatal loss.
DESIGN AND METHODS: We conducted semi-structured interviews with 18 bereaved parents. A grounded theory approach informed by Corbin and Strauss was used to underpin data sampling, data collection and data analysis. A constant comparative approach was used to engage in open, axial and selective coding to distil parents' stories into categories supporting a core concept.
RESULTS: "Creating evidence" emerged as a key theme in the grounded theory of memory-making in bereavement care for parents following neonatal loss. Creating evidence involved taking photographs, creating mementos, as well as involving friends and family during the baby's time in the Neonatal Unit.
CONCLUSIONS: Creating evidence affirmed the life of the baby and the role of the parents. Creating evidence was a significant element of memory-making that had a positive impact on parents' experience of bereavement.
PRACTICE IMPLICATIONS: Parents should be supported to create evidence of their baby's life, through taking photos, creating mementos, and involving others in their baby's care. Such interventions provide affirmation of the baby's life and of the individual's role as a parent.
Drawing upon transformative service research and social tourism literature, this paper explores the relationship between respite care and childhood illness. It focuses specifically upon the short break opportunities attached to respite care offered in children's hospices in the United Kingdom. Pathographies (illness narratives), shared by patients, siblings and family (n = 23), provide unique insights into ways in which each participate in respite care. Participation prompts inclusivity and normality. It offers a break from illness, and contributes to uplifting feelings of optimism, escapism and new beginnings. Conclusions drawn argue the need for healthcare policy to move beyond ‘Dying Well’ narratives into ones which celebrate ‘Living Well with Dying’. Tourism participation has much to offer such a progressive healthcare policy.
This qualitative study examined the influence of hospice photography on patients' end-of-life experiences, families' experiences with hospice and grief, and hospice social work practice. Hospice photography was defined in this study as photographs of hospice patients taken by social workers in the service of legacy construction. Six social workers were interviewed about the photographs they had previously taken of patients. The themes revealed were categorized as hospice photography's perceived and potential effects on patients, families, and practice and the role of smartphone technology. The data suggested that hospice photography may positively affect patients, families, and practice due to its reported ability to build and enhance rapport, facilitate therapeutic discussion, affirm patients' dignity, worth, and self-esteem, provide opportunities for bearing witness, and increase social workers' job satisfaction. Potential effects of the use of hospice photography in social work practice included the ability to tangibly contextualize the end-of-life experience; improve termination and closure; and provide comfort during the grieving process.
The Photographs of Meaning Program for pediatric palliative caregivers (POM-PPCG) is an innovative, meaning-based intervention utilizing photovoice and social media components. In 2017, 9 pediatric palliative caregivers participated in this intervention. During the social media portion of the POM-PPCG, participants were presented with weekly themes based on a meaning-making curriculum. In response, they took photographs, applied either audio or typed narratives, and shared them via social media. Ninety-five photographs with narratives were produced during the intervention. Through thematic qualitative analysis with consensual qualitative research components, 5 themes were identified: Love, Challenges, Loss, Coping, and The New Normal. This study adds to existing literature by shedding light on the experiences of caregivers of children with palliative care needs. Findings from this research contribute not only to the innovative use of qualitative methods but also to the clinical knowledge and practice regarding the pediatric palliative caregiver experience.
À quoi pensons-nous quand nos jours sont comptés ? Nos réactions sont-elles différentes selon que nous avons vingt, quarante ou quatre-vingts ans ? Que retenons-nous de la vie à l’approche de nos derniers instants ?
Les auteures ont rencontré des personnes de tous âges, mourantes ou atteintes d’une maladie potentiellement mortelle, pour les écouter, elles et leurs proches, parler de leur expérience et capter en photo une partie de leur essence. L’annonce du diagnostic, les peurs, la réaction des autres, la définition du bonheur : voilà ce dont ont parlé Alexis, 10 ans, qui veille sur sa maman malade ; Patrick, 38 ans, déchiré à l’idée de quitter sa famille ; André, 80 ans, qui a choisi de profiter de chaque instant qu’il lui reste ; et plusieurs autres. De cette démarche résulte un livre infiniment humain, une manifestation d’espoir où toutes les personnes impliquées, à travers une confession généreuse, laissent entrevoir leurs déceptions, mais aussi leurs joies.
AIMS AND OBJECTIVES: To explore palliative care nurses work experiences caring for patients at the end of life in private homes.
BACKGROUND: The home continues to be a desired place for care and dying, however professional competence is needed and specialist palliative care nurses play a crucial role, often highly valued by patients and their family members. The private home as a physical work environment for nurses is explored, with both positive and negative aspects being described. To ensure future high-quality end-of-life care, there is a need to describe how palliative care nurses work in private homes.
DESIGN: Interpretative descriptive.
METHODS: Participant generated photographs were used in conjunction with follow-up interviews with ten palliative home care nurses. Interpretive description was used for analysis. This study follows the COREQ checklist.
RESULTS: The analysis process resulted in four constructed themes, presented here as strategies used by palliative care nurses: Adjusting interactions and actions depending on the environment when entering each unique private home; Supporting patients and family members in finding a balance between self-care, independence and safe care; Guiding patients and family members towards and through environmental changes supporting end-of-life care at home; and Using transitions between homes to reflect, recuperate and prepare.
CONCLUSION: Working as a palliative care nurse in private homes clearly requires a variety of skills and competences, here operationalized in different strategies used to promote high quality care.
RELEVANCE TO CLINICAL PRACTICE: Palliative care nurses' considerations, insights and competence when performing end-of-life care in the diverse environments of private homes can contribute to the development of clinical practice. Knowledge about strategies can be used in nursing practice during everyday work, in nursing education and in the organisation of care, and can inform policy to ensure future high-quality palliative home care.
This study explored the bereavement experience of mothers after losing a child to cancer in Korea, using photovoice. The mothers took photos reflecting five subject areas they selected: (a) if I had one more day with my child, (b) memories with my child, (c) dreaming of my child’s healthy future, (d) what gave me strength, and (e) fulfilling my child’s wishes for the future. The findings show that mothers who lost a child to cancer need bereavement care to promote well-being. This study can help pediatric oncology providers develop bereavement interventions that address parental grief and improve quality of life.
Background: Research indicates that informal caregiving can have intense physical and mental impact on the individual. Relative to caregivers of adults, pediatric palliative caregivers appear less in literature despite experiencing greater mental, physical, financial, and social strain. There is limited research on the creation and evaluation of interventions specifically for this population despite clear need.
Objective:This study aims to evaluate the feasibility and engagement of the Photographs of Meaning Program, a modified meaning-making intervention for pediatric palliative caregivers.
Design:Participants completed a pre-post intervention meaning-in-life measure. Over a 9-week period, participants followed a meaning-making curriculum whereby they created and shared photo narratives via social media. As part of the intervention, a community photo exhibition was held featuring these photo narratives. Exit interviews were also conducted at study close.
Setting/Participants:Nine individuals providing informal care to children in a pediatric palliative care program participated in the intervention. All participants were female and are older than 18 years. Settings for research include participant homes and at The Center for Hospice and Palliative Care in Cheektowaga, New York.
Results: Participants posted 95 photographs and 96 narratives during the intervention, posting on average once each week. Statistical analysis within the small sample indicated an increased presence of meaning in the lives of participants (P = .022). Exit interviews conveyed satisfaction with the intervention.
Conclusions: Findings suggest that the Photographs of Meaning Program is a practical intervention with life-enhancing potential for pediatric palliative. Future research should aim to collect additional evidence of the intervention's effectiveness.
Perinatal loss, including fetal and infant death, is a devastating experience for parents, resulting in long-term adverse physical and psychosocial outcomes. However, little is known about what services might best support grieving parents. We aimed to understand the role of professional bereavement photography in assisting the grieving process of parents who have lost a fetus or infant, by examining the perspectives of bereaved parents, professional photographers, and health care professionals. Twenty semistructured interviews were conducted, and interview transcripts were analyzed using modified grounded theory. Twenty-three individuals participated, including 6 bereaved parents, 8 photographers, and 9 health care professionals. Analyses generated 5 major themes describing ways in which the photographs were valuable to parents: validation of the experience, permission to share, creation of a permanent and tangible legacy, creation of positive memories, and moving forward after the loss. Hospitals should consider incorporation of professional bereavement photography services into palliative care and bereavement programs.
Although male suicide has received research attention, the gendered experiences of men bereaved by male suicide are poorly understood. Addressing this knowledge gap, we share findings drawn from a photovoice study of Canadian-based men who had lost a male friend, partner, or family member to suicide. Two categories depicting the men's overall account of the suicide were inductively derived: (a) unforeseen suicide and (b) rationalized suicide. The "unforeseen suicides" referred to deaths that occurred without warning wherein participants spoke to tensions between having no idea that the deceased was at risk while reflecting on what they might have done to prevent the suicide. In contrast, "rationalized suicides" detailed an array of preexisting risk factors including mental illness and/or substance overuse to discuss cause-effect scenarios. Commonalities in unforeseen and rationalized suicides are discussed in the overarching theme, "managing emotions" whereby participants distanced themselves, but also drew meaning from the suicide.
Objective : To summarize and synthesize extant literature on memory making in bereavement care for parents who experience the death of a newborn and to identify opportunities for future research.
Data Sources : We conducted a systematic search of four health-related databases (MEDLINE Complete, CINAHL Complete, Embase, and PsychINFO) for original research in January 2019. We then conducted a manual search of the reference lists of all included articles and a citation search via Scopus.
Study Selection : Selection criteria initially included all original research articles available in English that related to parents’ perceptions of perinatal or neonatal palliative care or bereavement care for parents after the death of a newborn. These criteria were refined as we developed familiarity with the available literature. Our initial screening of article titles and abstracts yielded 287 articles for full-text review. After full-text analysis, we included all 25 qualitative or mixed method research articles that met selection criteria.
Data Extraction : We used a spreadsheet modeled on the Joanna Briggs Institute Review Guidelines (2015) for data extraction.
Data Synthesis : Available research was focused primarily on parents’ perceptions of care during and after the death of their newborns. Memory making interventions emerged as significant elements of the experiences of bereaved parent. Several researchers examined parents’ perceptions of specific memory making interventions, such as bereavement photography. Contact with the newborn, opportunities for caregiving, bereavement photography, and the collection or creation of mementos emerged as important elements of memory making. Parents also identified a need for guidance about each of these key strategies for memory making.
Conclusion : We identified few studies focused entirely on memory making as an intervention in the context of bereavement care for parents. However, memory making emerged as a recurring theme throughout qualitative and mixed method studies on parents’ perceptions of perinatal or neonatal end-of-life care. Further research is required to provide evidence to guide memory making interventions for bereaved parents who experience the death of a newborn.
OBJECTIVE: The objective of this review is to describe the practice of memory making as part of end-of-life care within an adult intensive care setting and determine reported outcomes.
METHODS: A scoping review of the literature was performed. Data were collected from sources such as ProQuest, CINAHL, Medline, Embase, PsycINFO, and PubMed using combinations of the keywords: including adult, critical care, intensive care, ICU, death, dying, grief, bereavement, end?of?life, memento*, memor*, keepsak*, and transitional object. Peer-reviewed studies reporting on the use of memory making within an adult intensive care setting and its outcomes for family members were included.
RESULTS: Four activities facilitating memory making as part of end-of-life care for adults are reported in the literature, all in the intensive care setting. Use of a computer-generated word cloud image received by families in the intensive care was reported as a meaningful keepsake and sometimes displayed in places such as the patient's funeral memorial. Offering a printed copy of the patient's electrocardiogram as a memento was considered by some to be extremely or very helpful during their bereavement experience and was reported by nursing staff to be well received by family members. The use of patient diaries during bereavement has been reported with the potential to promote better understanding of the events leading to the death, and photography was also included in some patient diaries as a visual memento.
CONCLUSION: Although limited evidence is available concerning memory making in the adult intensive care environment, from studies to date, surviving family members of deceased patients in the intensive care unit mostly report valuing memory-making opportunities when offered. However, further research is required to evaluate both healthcare staff's competence and confidence in offering memory making and determine if such offerings promote the family's adjustment to the loss of their loved one after a death in the intensive care area.
With death and dying in intensive care units, there should be bereavement support for families. We propose placing an illustration of a candle on the door of an unresponsive dying patient, with additional illustrations of votive candles at the nurses' station opposite to the door as a neutral way of identifying these rooms with patients who transitioned to comfort care or who have died. The candle illustrations encourage staff members to modify their words, silence themselves, and reflect. After a 1-year tryout in the neurointensive care unit with a strong positive experience for staff and families, it can be perceived as a symbol of tranquility.
PURPOSE: This article explores experiences of the acute-care environment as a setting for end-of-life (EoL) care from the perspective of family members of a dying person.
METHOD: We used participant-produced photographs in conjunction with follow-up interviews with nine family members to persons at the EoL, cared for in two acute-care settings.
RESULTS: The interpretive description analysis process resulted in three constructed themes-Aesthetic and un-aesthetic impressions, Space for privacy and social relationships, and Need for guidance in crucial times. Aspects of importance in the physical setting related to aesthetics, particularly in regard to sensory experience, and to a need for enough privacy to facilitate the maintenance of social relationships. Interactions between the world of family members and that of professionals were described as intrinsically related to guidance about both the material and immaterial environment at crucial times.
CONCLUSION: The care environment, already recognized to have an impact in relation to patients, is concluded to also affect the participating family members in this study in a variety of ways.
INTRODUCTION: Cancer and other life-limiting non-communicable diseases are on the increase in Africa affecting younger populations frequently diagnosed at an advanced stage of disease. The United Nations Sustainable Development Goal 3 aims for 'healthy life and wellbeing for all at all ages', though there is a limited understanding of wellbeing particularly from patients' and families' perspectives in these populations. Palliative care is an approach which aims to improve the quality of life for patients and families affected by life-limiting disease, though access to palliative care has been described as an issue which is 'largely ignored' on the global health agenda. The aim of this Photovoice study was to explore patient and family perspectives of wellbeing and the contribution of palliative care following a diagnosis of advanced cancer in Blantyre, Malawi.
METHODS: Between November 2016 and February 2017, 13 co-researchers (6 patients receiving palliative care for advanced cancer and 7 un-paid family caregivers) gathered photographs to depict aspects of their daily lives. Participatory analysis was conducted and an advocacy event (including photographic exhibits) held.
RESULTS: Wellbeing was described as seeing improvements in the patients' function facilitating inclusion in activities of daily living (including income generation) that had not previously been possible due to their illness. Family caregivers, neighbours and community members play a key role as 'courage givers' supported by health workers and religious groups, though discrimination in the form of social exclusion was also reported to be significant with patients expressing that they may be considered 'prematurely dead' in their community. Palliative care improves wellbeing by providing pain and symptom management enabling patients and / or family caregivers to return to household and income generating tasks. Through close interaction with households and ongoing counselling palliative care services assist to reduce fear and discrimination.
CONCLUSIONS: To achieve Sustainable Development Goal 3 for patients and families affected by life limiting illnesses in low resource settings, further understanding of the frequency and impact of discrimination is required as well as improved access to palliative care.