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.
BACKGROUND: Bereavement support is a key component of palliative care, with different types of support recommended according to need. Previous reviews have typically focused on specialised interventions and have not considered more generic forms of support, drawing on different research methodologies.
AIM: To review the quantitative and qualitative evidence on the effectiveness and impact of interventions and services providing support for adults bereaved through advanced illness.
DESIGN: A mixed-methods systematic review was conducted, with narrative synthesis of quantitative results and thematic synthesis of qualitative results. The review protocol is published in PROSPERO ( www.crd.york.ac.uk/prospero , CRD42016043530).
DATA SOURCES: The databases MEDLINE, Embase, PsycINFO, CINAHL and Social Policy and Practice were searched from 1990 to March 2019. Studies were included which reported evaluation results of bereavement interventions, following screening by two independent researchers. Study quality was assessed using GATE checklists.
RESULTS: A total of 31 studies were included, reporting on bereavement support groups, psychological and counselling interventions and a mix of other forms of support. Improvements in study outcomes were commonly reported, but the quality of the quantitative evidence was generally poor or mixed. Three main impacts were identified in the qualitative evidence, which also varied in quality: 'loss and grief resolution', 'sense of mastery and moving ahead' and 'social support'.
CONCLUSION: Conclusions on effectiveness are limited by small sample sizes and heterogeneity in study populations, models of care and outcomes. The qualitative evidence suggests several cross-cutting benefits and helps explain the impact mechanisms and contextual factors that are integral to the support.
AIM: To synthesise qualitative studies of patients' families' experiences and perceptions of end-of-life care in the intensive care unit when life-sustaining treatments are withdrawn.
DESIGN: Qualitative meta-synthesis
DATA SOURCES: Comprehensive search of 18 electronic databases for qualitative studies published between January 2005 - February 2019.
REVIEW METHOD: Meta-aggregation.
RESULTS: Thirteen studies met the inclusion criteria. A conceptual 'Model of Preparedness' was developed reflecting the elements of end-of-life care most valued by families: 'End-of-life communication'; 'Valued attributes of patient care'; 'Preparing the family'; 'Supporting the family' and; 'Bereavement care'.
CONCLUSION: A family-centred approach to end-of-life care that acknowledges the values and preferences of families in the intensive care unit is important. These families have unmet needs related to communication, support and bereavement care. Effective communication and support are central to preparedness and if these care components are in place, families can be better equipped to manage the death, their sadness, loss and grief. The findings suggest that health professionals may benefit from specialist end-of-life care education, to support families and guide the establishment of preparedness.
IMPACT: Understanding the role and characteristics of preparedness during end-of-life care will inform future practice in the intensive care unit and may improve family member satisfaction with care and recovery from loss. Nurses are optimally positioned to address the perceived shortfalls in end-of-life care. These findings have implications for health education, policies and standards for end-of-life care in the intensive care unit.
BACKGROUND: Cancer remains the leading cause of death by disease for children in the United States. It is imperative to optimize measures to support patients and families facing the end of a child's life. This study asked bereaved parents to reflect on their child's end-of-life care to identify which components of decision-making, supportive services, and communication were helpful, not helpful, or lacking.
METHODS: An anonymous survey about end-of-life experiences was sent to families of children treated at a single institution who died of a malignancy between 2010 and 2017.
RESULTS: Twenty-eight surveys were returned for a 30.8% response rate. Most of the bereaved parents (61%) reported a desire for shared decision-making; this was described by 52% of families at the end of their child's life. There was a statistically significant association between how well death went and whether the parental perception of actual decision-making aligned with desired decision-making (P = .002). Families did not utilize many of the supportive services that are available including psychology and psychiatry (only 22% used). Respondents felt that additional services would have been helpful.
CONCLUSIONS: Health care providers should strive to participate in decision-making models that align with the preferences of the patient and family and provide excellent communication. Additional resources to support families following the death of a child should be identified for families or developed and funded if a gap in available services is identified.
Background : Despite significant developments in palliative care in recent decades, we still find important differences in access to and delivery of care in rural Norway.
Objective : The aim of this study was to explore what healthcare professionals consider necessary to provide equality in care for palliative patients in rural areas.
Methods : A qualitative approach with focus group discussions and individual interviews with 52 health professionals was used, starting with 5 uniprofessional focus groups of general practitioners and nurses/cancer nurses, followed by 5 interprofessional groups and 6 individual interviews. Interview transcripts were analyzed thematically.
Results : We found local variations in organization, competence and access to palliative care, and challenging geographical conditions. It was essential to be proactive, flexible and willing to go the extra mile, but this may conceal the need for a stronger focus on competence and organization of palliative care. Access to written guidelines and practical tools was important, as was forming palliative teams for particular situations.
Conclusions : palliative care needs strengthening in rural areas, and increased competence for all healthcare professionals is vital to increase equality in care. Geographical conditions require locally adapted solutions. Access to guidelines and interprofessional collaboration are essential.
Implications for Practice : Rural palliative care needs in Norway are improving, as exemplified by at least 1 cancer nurse assigned to each local authority, and access to guidelines and palliative tools and interprofessional collaboration.
Purpose: Gliomas are primary brain tumors with a life-limiting course of disease, and the last weeks of life are often characterized by neurological deficits that affect communication and personality. End-of-life treatment in this patient group therefore requires specific approaches. To date, little data is available on patients’ and caregivers’ needs and experiences in the last phase of the disease.
Methods: In this observational study, relatives of patients treated at the University Hospital Zurich, Switzerland and deceased 2015–2017 due to glioma progression were contacted to complete a structured questionnaire assessing caregivers experience within the last weeks of the disease.
Results: The survey was sent to 120 relatives of deceased patients with a glioma (WHO grades II–IV) (median patient age: 62 years; 73.8% male). Forty-three questionnaires were returned (37.7%). Approximately half of the patients were taken care of at home in the last 4 weeks of the disease, mainly with the assistance of in-home nursing care, of which eventually 14 patients (63.6%) died at home. While caregivers reported high satisfaction with medical and nursing care, psychological support was rated average to poor on a 10-point scale. Free comment fields were used widely, revealing open questions and needs of the relatives.
Conclusions: This study illustrates the need for a more patient-centered end-of-life care including higher psychological support mechanisms, and a higher inclusion and consideration of relatives and caregivers into the care focus. Earlier discussion of end-of-life preferences could prevent hospitalizations in the last phase of life and could improve patients’ and caregivers’ quality of life.
Objective: This study aimed to clarify the experiences and hidden needs of older patients with advanced cancer, their families and their physicians in palliative chemotherapy decision-making.
Materials and Methods: We conducted in-depth qualitative individual interviews with content analysis. Patients who were diagnosed as having advanced cancer, were aged =70 years (n = 15, median [range] = 77 [70–82] years) and had volunteered to receive palliative chemotherapy within the past 6 months were enrolled. Their families and physicians were also interviewed.
Results: The following four themes were identified: (i) physician’s awareness of paternalism; (ii) readiness for communication of serious news; (iii) spiritual care need assessment and (iv) support as a team. The patients and families expected physicians to demonstrate paternalism in their decision-making because they were unconfident about their self-determination capability. Although the physicians were aware of this expectation, they encountered difficulties in recommending treatment and communicating with older patients. The patients had spiritual pain since the time of diagnosis. Psychological issues were rarely discussed during decision-making and treatment, triggering feelings of isolation in the patients and their families.
Conclusion: Older patients and their families expected a paternalistic approach by the physicians for palliative chemotherapy decision-making. The physicians found it difficult to offer treatment options because of older patient diversity and limitations in evidence-based strategies. Therefore multidisciplinary approaches and evidence-based decision support aids are warranted. Because older patients and their families often have unexpressed psychological burdens including unmet spiritual needs, medical professionals should provide psychological care from the time of diagnosis.
Background: despite being a terminal neurodegenerative disease, the role of palliative care is less recognised for motor neurone disease than for other life-limiting conditions. Understanding the experiences of, and need for, palliative care for patients and carers is key to configuring optimal policy and healthcare services.
Aim: To explore the experiences of, and need for, palliative care of people with motor neurone disease and their informal carers across the disease trajectory.
Design: A systematic review of qualitative research conducted using Thematic Synthesis – PROSPERO registration CRD42017075311.
Data Sources: four electronic databases were searched (MEDLINE, CINAHL, PsycINFO, Social Science Citation Index) using terms for motor neurone disease, amyotrophic lateral sclerosis, palliative care, and qualitative research, from inception to November 2018. Included papers were data extracted and assessed for quality.
Results: A total of 41 papers were included, representing the experiences of 358 people with motor neurone disease and 369 caregivers. Analytical themes were developed detailing patients’ and carers’ experiences of living with motor neurone disease and of palliative care through its trajectory including response to diagnosis, maintaining control, decision-making during deterioration, engaging with professionals, planning for end-of-life care, bereavement.
Conclusion: The review identified a considerable literature exploring the care needs of people with motor neurone disease and their carers; however, descriptions of palliative care were associated with the last days of life. Across the disease trajectory, clear points were identified where palliative care input could enhance patient and carer experience of the disease, particularly at times of significant physical change.
BACKGROUND: A developing body of evidence has provided valuable insight into the experiences of caregivers of people with motor neuron disease; however, understandings of how best to support caregivers remain limited.
AIM: This study sought to understand concepts related to the motor neuron disease caregiver experience which could inform the development of supportive interventions.
DESIGN: A qualitative thematic analysis of a one-off semistructured interview with caregivers was undertaken.
SETTING/PARTICIPANTS: Caregivers of people with motor neuron disease were recruited from a progressive neurological diseases clinic in Melbourne, Australia.
RESULTS: 15 caregivers participated. Three key themes were identified: (1) The Thief: the experience of loss and grief across varied facets of life; (2) The Labyrinth: finding ways to address ever changing challenges as the disease progressed; (3) Defying fate: being resilient and hopeful as caregivers tried to make the most of the time remaining.
CONCLUSIONS: Caregivers are in need of more guidance and support to cope with experiences of loss and to adapt to changeable care giving duties associated with disease progression. Therapeutic interventions which target these experiences of loss and change are worth investigation.
TRIAL REGISTRATION NUMBER: ACTRN12615000120572, pre-results.
BACKGROUND: Despite recognition that palliative care is an essential component of any humanitarian response, serious illness-related suffering continues to be pervasive in these settings. There is very limited evidence about the need for palliative care and symptom relief to guide the implementation of programs to alleviate the burden of serious illness-related suffering in these settings. A basic package of essential medications and supplies can provide pain relief and palliative care; however, the practical availability of these items has not been assessed. This study aimed to describe the illness-related suffering and need for palliative care in Rohingya refugees and caregivers in Bangladesh.
METHODS AND FINDINGS: Between November 20 and 24, 2017, we conducted a cross-sectional study of individuals with serious health problems (n = 156, 53% male) and caregivers (n = 155, 69% female) living in Rohingya refugee camps in Bangladesh, using convenience sampling to recruit participants at the community level (i.e., going house to house to identify eligible individuals). The serious health problems, recent healthcare experiences, need for medications and medical supplies, and basic needs of participants were explored through interviews with trained Rohingya community members, using an interview guide that had been piloted with Rohingya individuals to ensure it reflected the specificities of their refugee experience and culture. The most common diagnoses were significant physical disabilities (n = 100, 64.1%), treatment-resistant tuberculosis (TB) (n = 32, 20.5%), cancer (n = 15, 9.6%), and HIV infection (n = 3, 1.9%). Many individuals with serious health problems were experiencing significant pain (62%, n = 96), and pain treatments were largely ineffective (70%, n = 58). The average age was 44.8 years (range 2-100 years) for those with serious health problems and 34.9 years (range 8-75 years) for caregivers. Caregivers reported providing an average of 13.8 hours of care per day. Sleep difficulties (87.1%, n = 108), lack of appetite (58.1%, n = 72), and lack of pleasure in life (53.2%, n = 66) were the most commonly reported problems related to the caregiving role. The main limitations of this study were the use of convenience sampling and closed-ended interview questioning.
CONCLUSIONS: In this study we found that many individuals with serious health problems experienced significant physical, emotional, and social suffering due to a lack of access to pain and symptom relief and other essential components of palliative care. Humanitarian responses should develop and incorporate palliative care and symptom relief strategies that address the needs of all people with serious illness-related suffering and their caregivers.
Background: All countries face growing demand for palliative care services. Projections of need are essential to plan care in an era of demographic change. We aim to estimate palliative care needs in Ireland from 2016 to 2046.
Methods: Static modelling of secondary data. First, we estimate the numbers of people in Ireland who will die from a disease associated with palliative care need. We combine government statistics on cause of death (2007-2015) and projected mortality (2016-2046). Second, we combine these statistics with survey data to estimate numbers of people aged 50+ living and dying with diseases associated with palliative care need. Third, we use these projections and survey data to estimate disability burden, pain prevalence and health care utilisation among people aged 50+ living and dying with serious medical illness.
Results: In 2016, the number of people dying annually from a disease indicating palliative care need was estimated as 22,806, and the number of people not in the last year of life aged 50+ with a relevant diagnosis was estimated as 290,185. Equivalent estimates for 2046 are 40,355 and 548,105, increases of 84% and 89% respectively. These groups account disproportionately for disability burden, pain prevalence and health care use among older people, meaning that population health burdens and health care use will increase significantly in the next three decades. Conclusion: The global population is ageing, although significant differences in intensity of ageing can be seen between countries. Prevalence of palliative care need in Ireland will nearly double over 30 years, reflecting Ireland's relatively young population. People living with a serious disease outnumber those in the last year of life by approximately 12:1, necessitating implementation of integrated palliative care across the disease trajectory. Urgent steps on funding, workforce development and service provision are required to address these challenges.
Background: There is a lack of studies examining the prevalence and severity of psychosocial distress in parents caring for a child with life-limiting condition. More research is also needed to better understand the experience, support needs and quality-of-life of this population.
Aim: To describe the experience and support needs of caring for children with life-limiting conditions and examine the level of distress and quality-of-life experienced by parents.
Design: Cross-sectional, prospective, quantitative study guided by an advisory group. Participants completed a survey that included demographics and self-report outcome measures of unmet support needs, appraisal of caregiving, psychological distress and quality-of-life. Bivariate correlation analyses were performed to examine for associations between measures.
Setting/participants: Parents currently caring for one or more children (<=18 years) with a life-limiting condition and registered with a paediatric palliative care service (Australia).
Results: In total, 143 parents (88% female) completed the questionnaire (36% RR). Compared with population norms, participants reported low quality-of-life, high carer burden and high psychological distress. Almost half (47%) of the sample met the criteria for one or more diagnoses of clinically elevated stress, anxiety or depression. There were significant associations between the psychosocial outcome variables; carer strain and depression had the strongest correlations with quality-of-life (r = –.63, p < .001, for both). Participants also reported multiple unmet needs related to emotional and practical support.
Conclusions: This study contributes to the growing body of evidence on paediatric palliative care, specifically that parents caring for a child with a life-limiting condition report high levels of distress and burden, low quality-of-life and need more emotional and practical support targeted at their unmet needs. Paediatric palliative care services should routinely assess parent mental health and provide appropriate support.
BACKGROUND: In Canada, access to palliative care is a growing concern, particularly in rural communities. These communities have constrained health care services and accessing local palliative care can be challenging. The Site Suitability Model (SSM) was developed to identify rural "candidate" communities with need for palliative care services and existing health service capacity that could be enhanced to support a secondary palliative care hub. The purpose of this study was to test the feasibility of implementing the SSM in Ontario by generating a ranked summary of rural "candidate" communities as potential secondary palliative care hubs.
METHODS: Using Census data combined with community-level data, the SSM was applied to assess the suitability of 12 communities as rural secondary palliative care hubs. Scores from 0 to 1 were generated for four equally-weighted components: (1) population as the total population living within a 1-h drive of a candidate community; (2) isolation as travel time from that community to the nearest community with palliative care services; (3) vulnerability as community need based on a palliative care index score; and (4) community readiness as five dimensions of fit between a candidate community and a secondary palliative care hub. Component scores were summed for the SSM score and adjusted to range from 0 to 1.
RESULTS: Population scores for the 12 communities ranged widely (0.19-1.00), as did isolation scores (0.16-0.94). Vulnerability scores ranged more narrowly (0.27-0.35), while community readiness scores ranged from 0.4-1.0. These component scores revealed information about each community's particular strengths and weaknesses. Final SSM scores ranged from a low of 0.33 to a high of 0.76.
CONCLUSIONS: The SSM was readily implemented in Ontario. Final scores generated a ranked list based on the relative suitability of candidate communities to become secondary palliative care hubs. This list provides information for policy makers to make allocation decisions regarding rural palliative services. The calculation of each community's scores also generates information for local policy makers about how best to provide these services within their communities. The multi-factorial structure of the model enables decision makers to adapt the relative weights of its components.
BACKGROUND: Diagnosis of perinatal anomalies is a stressful experience that can negatively affect mothers, families, health-care systems, and societies. Perinatal palliative care (PPC) is a new development in maternity services which focuses on emotional, spiritual, social, and symptom management and provides care for women and families with fetal anomaly diagnosis. Therefore, this study aimed to develop a service package for women with fetal anomaly diagnosis in socio-cultural context of Iran.
METHODS: This research is an exploratory mixed methods study with the qualitative-quantitative sequencing design that consists of four sequential phases. In the first phase, following a qualitative approach, the researcher will explore the needs and experiences of women with fetal anomaly diagnosis, their families, health care providers and policy-makers. At the second phase, based on the review of the literature, Program, guideline, service package and protocol for care of women and their families after perinatal anomaly diagnosis will be identified in other countries. In the third phase, recommendations from qualitative phase and literature review will be combined, the initial protocol of the palliative care service package for perinatal anomaly diagnosis will be identified and prioritized. In the fourth phase, the opinion of experts about this service package will be collected by using RAND/UCLA Appropriateness Method technique and the applicability of the service package's recommendations in clinical settings will be determined.
DISCUSSION: The results of this Mixed Methods study are expected response the needs and experiences of the women with perinatal anomaly diagnosis being met in the socio-cultural context of Iran and a service package for palliative care of these women developed.
INTRODUCTION: With an increase in the population living with terminal illness, many patients are accessing EDs during the last days of their life. Yet EDs are often not well prepared to provide end-of-life (EOL) care. The aim of this review was to identify and synthesise studies that describe the views and experiences of emergency nurses in providing EOL care so as to understand the barriers and challenges that they face while caring for these patients and to identify factors that can support appropriate care delivery.
METHOD: A qualitative meta-synthesis was undertaken using a thematic approach. Study quality was assessed using the Joanna Briggs Institute Qualitative Assessment and Review Instrument tool. Five databases were searched in June 2016.
RESULTS: Eleven qualitative studies met the inclusion criteria and were assessed as having high quality. Sixty-nine findings were identified, combined into 11 descriptive themes and then synthesised into 3 analytical themes: (1) Incongruent ED environment and EOL care. (2) Lack of resources, systems and capacity. (3) EOL care as a rewarding act or an emotional burden.
CONCLUSION: The review identified a need for: (1) Additional training for nurses. (2) The development of clear guidelines in the form of pathways and protocols. (3) Having a separate space for the dying. (4) Providing a supportive environment for staff dealing with high emotional burden and challenging workloads. In order to improve EOL care, organisations must work on the barriers that hinder care provision.
Background: For most people, the last 12 months of life are spent living in the community, with the support of family and friends for a number of caregiving functions. Previous research has found that managing medicines is challenging for caregivers. Currently there is little information describing which caregivers may struggle with tasks associated with managing a loved one's medicines.
Aim: The aim of this study was to identify factors that flag caregivers who are likely to experience problems when managing someone else's medications.
Setting/Participants: The annual South Australian Health Omnibus Survey provides a face-to-face, cross-sectional, whole-of-population view of health care. Structured interviews, including questions covering palliative care and end-of-life care, were conducted with 14,625 residents in their own homes.
Results: Of the 1068 respondents who had provided care for someone who died of a terminal illness in the last five years, 7.4% identified that additional support with medicine management would have been beneficial. In addition, three factors were predictive of the need for additional support in managing medicines: aged <65 years; lower household income; and living in a metropolitan region.
Conclusion: The findings of this study provide insights to inform the development of palliative care service models to support informal caregivers in the management of medications for people with a life-limiting illness.
PURPOSE: This study aimed to evaluate what types and forms of support nursing staff need in providing palliative care for persons with dementia. Another aim was to compare the needs of nursing staff with different educational levels and working in home care or in nursing homes.
DESIGN: A cross-sectional, descriptive survey design was used.
METHODS: A questionnaire was administered to a convenience sample of Dutch nursing staff working in the home care or nursing home setting. Data were collected from July through October 2018. Quantitative survey data were analyzed using descriptive statistics. Data from two open-ended survey questions were investigated using content analysis.
FINDINGS: The sample comprised 416 respondents. Nursing staff with different educational levels and working in different settings indicated largely similar needs. The highest-ranking needs for support were in dealing with family disagreement in end-of-life decision making (58%), dealing with challenging behaviors (41%), and recognizing and managing pain (38%). The highest-ranking form of support was peer-to-peer learning (51%). If respondents would have more time to do their work, devoting personal attention would be a priority.
CONCLUSIONS: Nursing staff with different educational levels and working in home care or in nursing homes endorsed similar needs in providing palliative care for persons with dementia and their loved ones.
CLINICAL RELEVANCE: It is critical to understand the specific needs of nursing staff in order to develop tailored strategies. Interventions aimed at increasing the competence of nursing staff in providing palliative care for persons with dementia may target similar areas to support a heterogeneous group of nurses and nurse assistants, working in home care or in a nursing home.
Background: While the populations of children who can benefit from paediatric palliative care (PPC) have been broadly defined, identifying individual patients to receive PPC has been problematic in practice. The Paediatric Palliative Screening scale (PaPaS) is a multi-dimensional tool that assesses palliative care needs in children and families to facilitate timely referrals. This study evaluates its use to manage new referrals and ongoing review of patients receiving home-based PPC in Singapore.
Methods: Using a retrospective cohort study design, 199 patients admitted to receive PPC via clinician screening were scored using PaPaS. Eighty-four patients in two groups were scored again at one of two following milestones: one-year service continuation mark or point of discharge before a year. Accuracy measures were compared against clinical assessment.
Results: 96.98% of patients scored 15 and above on admission (indicating need for PPC). Patients assessed at following milestones were effectively stratified; those who continued to receive service after 1 year scored significantly higher (M = 19.23) compared to those who were discharged within a year (M = 7.86). Sensitivity and specificity for PaPaS were calculated at 82.54 and 100% respectively. Overall congruence with clinician-based decisions supports the utility of PaPaS as a screening tool in PPC. Recommendations to improve the scale further are proposed.
Conclusion: The PaPaS is a practical screening tool that signposts PPC needs within the clinical setting. This facilitates early referrals to PPC, without having to specify individual prognoses that are often uncertain. Other benefits include optimised continuity of care and implications for resource allocation.
Objectives: This study examines different combinations of informal and formal care use of older adults and investigates whether these combinations differ in terms of need for care (physical and psychological frailty) and enabling factors for informal and formal care use (social and environmental frailty).
Methods: Using cross-sectional data from the Belgian Ageing Studies (survey, N = 38,066 community-dwelling older adults), Latent Class Analysis (LCA) is used to identify combinations of informal and formal care use. Bivariate analyses are used to explore the relationship between the different combinations of care use and frailty.
Results: Latent Class Analysis (LCA) identified 8 different types of care use, which vary in combinations of informal and formal caregivers. Older adults who are more likely to combine care from family and care from all types of formal caregivers are more physically, psychologically and environmentally frail than expected. Older adults who are more likely to receive care only from nuclear family, or only from formal caregivers are more socially frail than expected.
Conclusions: Older adults with a higher need for care are more likely to receive care from different types of informal and formal caregivers. High environmental frailty and low social frailty are related with the use of care from different types of informal and formal caregivers. This study confirms that informal care can act as substitute for formal care. However, this substitute relationship becomes a complementary relationship in frail older adults. Policymakers should take into account that frailty in older adults affects the use of informal and formal care.
Introduction : Soixante pour cent des personnes atteintes de la maladie d’Alzheimer vivent à domicile. Le maintien à domicile a un impact positif sur l’évolution des troubles du malade. L’aidant naturel en est un acteur indispensable, mais le retentissement sur sa santé est majeur. Le médecin généraliste a un rôle d’évaluation et d’anticipation sur le risque d’épuisement de l’aidant, défini par les pouvoirs publics. Un des outils proposés par la Haute autorité de santé (HAS) est la consultation dédiée au cours du suivi des aidants. L’objectif de l’étude était d’évaluer la place de cette consultation dédiée et son contenu en médecine générale.
Matériel et méthodes : Il s’agissait d’une étude épidémiologique descriptive auprès d’aidants de patients atteints de la maladie d’Alzheimer suivis par des médecins généralistes de la Somme, de mai à juillet 2018.
Résultats : 19 médecins généralistes ont participé, ce qui a permis d’interroger 49 aidants. 6,1 % des aidants naturels ont bénéficié d’une consultation dédiée. La mise en place des aides professionnelles est souvent réalisée. L’évaluation du fardeau de l’aidant et l’orientation de celui-ci vers les structures dédiées sont rarement réalisées.
Discussion : L’exploration des besoins et des difficultés en médecine générale dans l’anticipation du risque d’épuisement de l’aidant est nécessaire. Elle permettrait d’apporter des outils adaptés et d’améliorer la prévention du risque d’épuisement de l’aidant, qui met en péril le maintien à domicile du patient.
Conclusion : Le développement d’une approche préventive des aidants et de l’utilisation des aides dédiées à ceux-ci est primordial pour améliorer la qualité de vie du patient et de son entourage.