People with advanced dementia living in care homes can experience social death before their physical death. Social death occurs when a person is no longer recognised as being an active agent within their relationships. A shift is required in how we perceive people with advanced dementia so that the ways they continue to be active in their relationships are noticed. Paying attention to embodied and interembodied selfhood broadens the scope and opportunities for relationships with people with advanced dementia, acting as a counter to social death. This has the potential to improve the quality of care, including end of life care, of people with advanced dementia in care homes. This study examined the role of embodied and interembodied selfhood within care-giving/care-receiving relationships in a specialist dementia care home. Empirical findings and their implications for the development of relationship-centred care and the Senses Framework in care homes are discussed.
For patients at the end of life, the oncologist's care continues beyond the cessation of disease-directed therapy. When cure or even prolongation of life is no longer possible, oncologists have one last task remaining: to provide expert care to patients at the end of life and support for their families. Physical comfort, clear communication, emotional support, helping patients maintain a sense of purpose, clarifying wishes about attempts at resuscitation, working on legacies, addressing patient distress, and helping families as they struggle with their loss are all the work of a team of clinicians, led by the oncologist, who the patient and family continue to look to as their guide, even when no further antineoplastic therapies or immunotherapies can be offered. The team often includes the rest of the oncology team of clinicians, as well as social workers, chaplains, a palliative care clinician, and, when appropriate, a hospice team. Families with young children need specialized counseling and support. Ongoing losses (in identity or function or of roles in the family, community, or workplace) contribute to spiritual and existential distress. The palliative care and hospice teams can help with life reviews and reconnection with sources of spiritual support, including religious rituals, to help reaffirm identity and roles. The oncologist's final responsibility is ongoing communication with the survivors after the patient's death. Survivors appreciate ongoing communication, cards, and phone calls to answer any remaining questions and quell any lingering doubts. These communications also bring closure to the oncologist and oncology team, allowing them to reflect on and grieve their loss and to remember the work they did with the patient and his or her family.
OBJECTIVES: Family caregivers of hospice patients have multiple needs as they try to cope during a stressful time. Translatable interventions effective in improving caregiver outcomes are greatly needed. Our objective was to assess the impact of a problem-solving intervention (called Problem-Solving Intervention to Support Caregivers in End-of-Life Care Settings [PISCES]) to support hospice caregivers on caregiver quality of life and anxiety, and compare its effectiveness delivered face to face and via videoconferencing.
DESIGN: In this 4-year randomized clinical trial, caregivers were randomly assigned to a group receiving standard care with added "friendly calls" (attention control [AC] group), a group receiving standard care and PISCES delivered face to face (F2F), or a group receiving standard care and PISCES delivered via videoconferencing (VC).
SETTING: Home hospice.
PARTICIPANTS: A total of 514 caregivers participated (172 in AC, 171 in F2F, and 171 in VC). Caregivers were predominantly female (75%); mean age was 60.3 years.
INTERVENTION: PISCES includes a structured curriculum delivered in three sessions and motivates caregivers to adopt a positive attitude, define problems by obtaining facts, set goals, and generate and evaluate solutions.
MEASUREMENTS: Quality of life was measured by the Caregiver Quality of Life Index-Revised; anxiety was measured by the Generalized Anxiety Disorder 7-Item. Other measures included the Caregiver Reaction Assessment scale, demographic data, and an exit interview.
RESULTS: Compared with AC, caregivers in the F2F condition had postintervention reduced anxiety (-1.31 [95% confidence interval [CI] = -2.11 to .50]; p = .004) and improved social (.57 [95% CI = .19-.95]; p = .01), financial (.57 [95% CI = .21-.93]; p = .004), and physical quality of life (.53 [95% CI = .19-.87]; p = .01). There were no differences in caregivers in the VC condition compared with the AC condition.
CONCLUSION: The PISCES intervention improves caregiver outcomes and is effective when delivered in person. How to integrate technology to reduce the intervention delivery cost warrants further investigation.
The care of people with life-limiting illnesses is increasingly moving away from an acute setting into the community. Thus, the caregiver role is growing in significance and complexity. The importance of preparing and supporting family caregivers is well established; however, less is known about the impact of rurality on preparedness and how preparedness shapes the caregiving continuum including bereavement. The aim of this study, conducted in 2017, was to explore how bereaved rural family palliative carers described their preparedness for caregiving. Interpretative phenomenological analysis was employed following semi-structured interviews with four women and six men (N = 10, aged 55-87 years). Participants were recruited voluntarily through past engagement with a Regional Specialist Palliative Care Consultancy Service in Australia. The experiences of caregivers illustrated a lack of preparedness for the role and were characterised by four major themes: Into the unknown, Into the battle, Into the void and Into the good. The unknown was associated with a lack of knowledge and skills, fear, prognostic communication, exclusion, emotional distress and grief experience. Battles were experienced in a number of ways: intrapsychically (existing within the mind), through role conflict and identity; interpersonally with the patient, clinician and family; and systematically (against health, financial and legal systems). The void was felt during isolation in caregiving, in relinquishing the role, in bereavement and in feeling abandoned by service providers. Positive experiences, such as being valued, included and connected to supports, and the fostering of closer relationships and deeper meaning, occurred less frequently but temporarily buffered against negative aspects. Implications from this study for policy and practice centre on the frequent, purposeful and genuine engagement of caregivers. Services and clinicians are encouraged to enhance communication practices, promote meaningful inclusion, address access issues and enhance support at role relinquishment.
Education and recognition of death anxiety are important for respiratory therapists. A vital component of respiratory therapy is managing mechanical ventilation and dealing with death and dying. For most institutions, respiratory therapy is a vital component of the rapid response team, code team, and trauma team. Removal of mechanical ventilation is a duty primarily bestowed upon the respiratory therapist. Exposure to death, on a frequent basis, can take an emotional toll and lead to burnout, stress, and increased turnover. Managers and leaders in the hospital must make efforts to provide counseling and education to support respiratory therapists and their ongoing exposure to death and dying. This paper examines coping mechanisms for physicians and paramedics, resulting in tools that can be used to provide support to the respiratory therapist.
OBJECTIVE: The purpose of the current study was to use a mixed-methods approach to assess the perspective of cancer survivors on the bidirectional impact between cancer and their social contexts.
METHOD: A fixed concurrent triangulation mixed-methods survey design was used with open- and closed-ended questions that were predetermined and administered to participants. Quantitative items included demographic questions and the Life Impact Checklist. Qualitative questions were designed to explore the bidirectional impact between the patient and specific contexts including spirituality/faith, the spousal/partner relationship, and the family. A cross-sectional descriptive approach was used to evaluate the quantitative items and the constant comparative method guided the analysis of open-ended questions.Result Among 116 participants (mean age 58.4 years), the majority were female (66.7%) with breast cancer (27.9%). Nearly one-half the respondents endorsed a positive impact of cancer on their spirituality/faith, but qualitative results suggested less of a bidirectional impact. The importance of the spouse/partner during the cancer experience was emphasized, including the subthemes of instrumental and emotional support; however, there was often a negative impact of cancer on the spouse/partner relationship, including sexual functioning. Survivors indicated family members provided instrumental and emotional support, but not as regularly or directly as a spouse/partner.Significance of results Social contexts are important among cancer survivors, with many cancer survivors relying more on their spouse/partner than other family members for support. The cancer experience is stressful not only for survivors, but also for individuals in their social contexts and relationships.
Objectives: Physicians working with palliative patients have a substantial risk of emotional exhaustion because of their daily confrontation with suffering and death. Common concerns include alexithymia, high stress, low perceived social support and a greater burnout risk. This longitudinal study aimed to evaluate the effectiveness of Balint training in preventing the development of these symptoms in these medical professionals. Material and Methods: The design of the study was longitudinal. A group of 69 physicians working with palliative patients from 5 county hospitals in Romania (33 men, 36 women) participated in the study. Out of them, 31 joined and systematically attended a local Balint group whereas the others did not participate in such a group, either during the study or previously. They were given, both at the beginning (2015) and at the end of the study (2017), 4 psychometric instruments assessing alexithymia (Bagby’s Toronto Alexithymia Scale), perceived stress (Cohen and Williamson’s Perceived Stress Scale), social support (Duke-UNC Functional Social Support Questionnaire) and burnout (Maslach Burnout Inventory). A split-plot ANOVA analysis was used for evaluating the significance of Balint groups participation, with gender and age considered as auxiliary variables.
Results: In the study group, Balint training significantly improved the scores of global burnout (F(1, 64) = 25.104, p < 0.0001), 2 of its components (emotional exhaustion (F(1, 64) = 18.390, p < 0.0001) and depersonalization (F(1, 64) = 10.957, p < 0.002), alexithymia (F(1, 64) = 3.461, p < 0.0001) and perceived social support (F(1, 64) = 57.883, p < 0.0001), but not the scores of perceived stress and low personal accomplishment. Gender had an additional contribution in decreasing alexithymia (F(1, 64) = 7.436, p < 0.009) and increasing perceived social support (F(1, 64) = 15.426, p < 0.0001), with higher effects in men. Conclusions: This study points to the potential usefulness of Balint training in addressing alexithymia and burnout, and in improving perceived social support among physicians working with palliative patients. As the Balint method is easily understood and does not require special investments, it could represent a cost-effective instrument of addressing job-related psychological risks.
Advancing technology in reproductive medicine has led to more frequent perinatal diagnoses of fatal or life-limiting anomaly. For those parents who choose to continue pregnancies while facing such a diagnosis, compassionate and communal perinatal palliative care provides beneficial physical and psycho-socio-emotional support for these families, so that they may preserve and acknowledge the relationship with their child, no matter how brief his/her life.
Since the early 1990s, long-term care policies have undergone significant transformations across OECD countries. In some countries, these changes have responded to the introduction of major policy reforms while in others, significant transformations have come about through the accumulation of incremental policy changes. This book brings together evidence from over 12 years of care reforms to examine changes in long-term care systems occurring in OECD countries. It discusses and compares key changes in national policies and examines the main successes and failures of recent reforms. Finally, it suggests possible policy strategies for the future in the sector.
Origine : BDSP. Notice produite par IRDES qR0xBJl8. Diffusion soumise à autorisation
This book examines the complex operations of the long-term care facility and offers critical skills to current and future long-term care administrators for delivering quality, cost-effective services. Comprehensive, yet concise, the Third Edition explores the necessary skills and tools for creating a person-centered environment. Topics covered include : how to adapt an existing nursing facility, the growing culture change movement, and the laws, regulations, and financing of the long-term care industry, as well as its organization and delivery. Finally, this book offers extensive coverage of the essential skills necessary to manage it all.
Origine : BDSP. Notice produite par IRDES R0x8nEsH. Diffusion soumise à autorisation
Caring for someone with dementia is one of the most challenging caring roles; however, the demands of the role towards the end of life often mean carers are unable to maintain face-to-face support. The aim of this study was to: (a) Explore the experiences of older (over 65 years) family carers of people with dementia of support towards the end of life; (b) Explore with family carers the role of the internet as a support for them at the end of life. Semi-structured interviews were conducted, with purposive sampling from general practice and research networks to recruit 20 current and former family carers aged 65 and over in England (2016-2017). Interviews were audio-recorded, transcribed, and analysed using thematic analysis. An overarching theme of the "separation of worlds" (the internal caring world and the outside world of society) was identified, with four sub themes: (a) the support role of relationships and social networks; (b) loss as a consequence of caring; (c) reconstruction of life as a carer; and finally; (d) life within and beyond the computer screen. This study demonstrates the complexity of social support at the end of life for family carers depicted in a model of two worlds. The internet can be seen as a viable approach to help carers maintain existing networks, reconstruct networks they have lost or developing new networks to meet their new needs and circumstances as a carer. Future support interventions should focus on a mixed model of technology and human interaction.
In June 2016, Bill C-14 or Medical Assistance in Dying legislation became law in Canada. With this law came changes to nursesâ€™ (ie, nurse practitioner, registered nurse, registered practical nurse) scopes of practice, roles, and responsibilities. While federal law, regulatory, and organizational policies are developed to inform nurses about the practice of medical assistance in dying, there is little evidence examining how nursesâ€™ roles and responsibilities are enacted in practice. Therefore, a scoping review was conducted to synthesize the evidence on nursesâ€™ roles and responsibilities in relation to medical assistance in dying and to identify gaps in the literature. A secondary aim was to identify organizational supports for nurses to effectively and ethically engage in medical assistance in dying. Using a recognized and rigorous scoping review methodology, the findings from 24 research studies were synthesized in this article. The analysis highlights the importance of effective health care professional engagement with the individual in the decision-making process and of the need to educate, support, and include nurses in providing medical assistance in dying. Overall, the current research on medical assistance in dying is limited in Canada, and more attention is needed on the role of the nurse.
BACKGROUND: Public health approaches to palliative care prioritise community-focused initiatives to support people with palliative care needs and their families. The nature and extent of these initiatives have not previously been reported.
AIM: To identify community-led and/or focused initiatives that have been developed to support family carers of people with palliative care needs and for which evaluation information is reported in the empirical literature.
DESIGN:: An integrative study design was undertaken using systematic methods.
DATA SOURCES: CINAHL, Medline, PsycINFO, Embase, Cochrane, Sociological Abstracts, Proquest Social Science Database, and grey literature were searched using standardised search terms.
CONCLUSIONS: This integrative review identified only six community-focused and evaluated initiatives supporting family carers in the international palliative care research literature. Further evaluation is needed. However, appropriate evaluation methods and reporting require further discussion and debate between all stakeholders. Service users and communities themselves must be central to this process.
BACKGROUND: An understanding of how to implement person-centred interventions in palliative and end of life care is lacking, particularly for supporting family carers. To address this gap, we investigated components related to successful implementation of the Carer Support Needs Assessment Tool (CSNAT) intervention, a person-centred process of carer assessment and support, using Promoting Action on Research Implementation in Health Services (PARIHS) as a theoretical framework. This study identifies how the PARIHS component of 'facilitation' and its interplay with the components of 'context' and 'evidence' affect implementation success.
METHODS: MRC Framework Phase IV study to evaluate implementation of the CSNAT intervention at scale, over six months, in 36 UK palliative care services. 38 practitioners acting as internal facilitators in 35/36 services were interviewed. Field notes were collected during teleconference support sessions between the external and internal facilitators.
RESULTS: Successful implementation was associated with internal facilitators' 'leverage' including their positioning within services, authority to change practice, and having a team of supportive co-facilitators. Effective facilitation processes included a collaborative approach, ongoing communication, and proactive problem solving to address implementation barriers. Facilitators needed to communicate the evidence and provide legitimacy for changing practice. Contextual constraints on facilitation included having to adjust recording systems to support implementation, organisational changes, a patient-focused culture and lack of managerial support.
CONCLUSIONS: The CSNAT intervention requires attention to both facilitation processes and conducive organisational structures for successful implementation. These findings are likely to be applicable to any person-centred process of assessment and support within palliative care.
PURPOSE OF REVIEW: A holistic palliative approach for heart failure care emphasizes supporting nonprofessional informal caregivers. Informal caregivers play a vital role caring for heart failure patients. However, caregiving negatively affects informal caregivers' well being, and in turn heart failure patients' health outcomes. This opinion article proposes that complex adaptive systems (CAS) theory applied to heart failure models of care can support the resiliency of the heart failure patient - informal caregiver dyad.
RECENT FINDINGS: Heart failure care is enacted within a complex system composed of patients, their informal caregivers and a variety of health professionals. In a national study, we employed a CAS perspective to explore how all parts of the heart failure team function interdependently in emergent and adaptive ways. Salient in our data were the severe vulnerability of elderly heart failure patients and their long-term partners who suffered from a chronic illness. Novel approaches are needed that can quickly adapt and reorganize care when unpredictable disturbances occur in the couples' functional capacity.
SUMMARY: The linear protocol-driven care models that shape heart failure guidelines, training and care delivery initiatives do not adequately capture heart failure patients' social environment. CAS is a powerful theoretical tool that can render visible the most vulnerable members of the heart failure team, and incite robust specialized holistic palliative heart failure care models.
Purpose: Challenges experienced by staff in the Oncology Services Group at Queensland Children's Hospital led to issues with staff retention, well-being, and stress on team culture. Therefore, a customized program was developed through a needs analysis to improve the well-being and resilience of oncology staff, enabling them to cope with stressors and critical incidents inherent in their everyday work and to flourish. The program included education, on-site counselors, mindfulness sessions, debriefing, well-being resources, and improved engagement, support, and communication.
Methods: Evaluation of the program in the first year examined program participation, staff feedback following education workshops and mindfulness sessions, staff retention rates, and the results of an annual organizational staff survey and a program outcome survey.
Results: Approximately 76% of staff attended the Introduction to Well-being workshop, and 98% of responses to survey questions were positive. Staff also provided positive feedback on the other well-being workshops and sessions embedded within existing education programs. Employee Assistance Program counseling sessions had an 81% uptake, with a wide variety of presenting issues, 62% related to work. All participants in mindfulness sessions agreed that it was a valuable tool to improve clinical practice, 94% said it had an immediate positive impact on their well-being, and 70% agreed that they were applying mindfulness principles outside the sessions. Staff retention and turnover improved. Staff reported a positive effect on awareness of self-care, addressing risks to resilience, seeking support from trusted colleagues, coping with critical incidents, and the ability to interact positively with patients and families.
Conclusion: The evaluation showed a positive impact on staff well-being. Although there was a wide variety of successful interventions reported in the literature, sustainability needs to be considered. Feedback on this program found that staff appreciated being listened to, valued, and supported through the strategies, and the ongoing program will continue to monitor staff needs and be responsive in building their resilience and well-being.
Etre aidant, c'est parfois bien difficile.
Dans un premier temps le reportage explique simplement ce terme d'aidant. Même si 64% des aidants expriment comme il est "positif" d'aider un proche, il faut continuer à vivre et ne pas craquer.
Il est important de trouver un équilibre entre amour et respect afin de s'adapter au malade pour l'accompagner parfois pendant plusieurs années.
Cependant, le travail de chaque minute n'autorise pas facilement à exprimer comme cela peut être difficile d'être aidant.
Demander à être aidé n'est pas aisé, car l'aidant n'est pas "malade" donc, il ne doit ni se plaindre, ni s'exprimer et continuer d'être " un bon petit soldat".
Dans un second temps différents exemples de "soutien" aux aidants sont décrits.
L'association France Alzheimer a construit une formation destinée aux aidants, elle permet de travailler sur les limites mais aussi sur comment supporter la vie aux cotés d'une personne qui se transforme et que l'on perd.
Le Café des aidants, crée par l'Association des Aidants est un lieu de parole où chacun y trouve un espace de partage. Il permet un moment d'ouverture pour les aidants, un réel espace de pause.
Les deux parents d'un jeune homme polyhandicapé expliquent qu'ils ont obtenu tous les deux le titre d’assistant de vie, auprès de la MDPH, ce qui leur permet de partager leur présence auprès de leur fils.
Une association de Créteil les a beaucoup aidé à apprendre la patience et l'indulgence dans cet accompagnement de leur fils totalement dépendant.
A la maison d'Aloïs dans le Nord, c'est une "maîtresse de maison" qui accueille les aidants, elle n'est ni professionnelle médicale ni sociale, c'est juste la dame qui gère cette maison.
Enfin l'association A3 de Marseille propose des activités anti-stress pour les aidants comme du Tai Chi.
Une belle expérience de 4 jours de répit est racontée grâce aux images joyeuses d'une grande tablée autour de fruits de mer et d'une chaleureuse soirée dansante. Ce séjour à l’île de Ré est offert à des aidants grâce à la mobilisation d'une caisse de retraite.
Pour conclure ce documentaire, la description de couples unis jusqu'au bout est montrée comme un bel exemple. Quand la parole n'est plus là, la tendresse et la complicité peuvent exister encore.
OBJECTIVE: The aim of this study was to enhance understanding about homecare workers providing care to people with dementia at end of life by exploring homecare workers' perceptions of challenges and the support they needed and sometimes received.
METHODS: Qualitative semi-structured interviews were conducted with 29 homecare workers and 13 homecare managers in England. Framework analysis was used to analyse the data.
FINDINGS: Four overarching challenges were identified: working with clients with dementia, including clients' sometimes unpredictable responses, communication difficulties, and mood changes; caring for the dying; conflict with family members; and working alone, which often left homecare workers at risk of exhaustion, fatigue, and a sense of isolation. When their work entailed high levels of emotion, such as a client's death or getting embroiled in a client's family conflict, they felt emotionally drained, under-prepared and overwhelmed. Supportive elements include receiving encouragement and learning from experienced peers and their feelings being acknowledged by managers at their employing homecare agency. Some workers were offered time off or encouraged to attend the client's funeral as a means of supporting the process of bereavement.
CONCLUSIONS: Peer and manager support are essential and effective in coping with work pressures. There is a need to develop models of effective support to alleviate staff's practical, emotional and interpersonal pressures. However, due to the isolating nature of homecare work, managers may not recognise early signs of their staff finding stress unmanageable and miss the opportunity to mitigate these negative effects.