Place of Death for Adults Receiving Specialist Palliative Care in Their Last 3 Months of Life: Factors Associated With Preferred Place, Actual Place, and Place of Death Congruence.

Objectives: Congruence between the preferred and actual place of death is recognised as an important quality indicator in end-of-life care. However, there may be complexities about preferences that are ignored in summary congruence measures. This article examined factors associated with preferred place of death, actual place of death, and congruence for a sample of patients who had received specialist palliative care in the last three months of life in Ireland. Methods: This article analysed merged data from two previously published mortality follow-back surveys: Economic Evaluation of Palliative Care in Ireland (EEPCI); Irish component of International Access, Rights and Empowerment (IARE I). Logistic regression models examined factors associated with (a) preferences for home death versus institutional setting, (b) home death versus hospital death, and (c) congruent versus non-congruent death. Setting: Four regions with differing levels of specialist palliative care development in Ireland. Participants: Mean age 77, 50% female/male, 19% living alone, 64% main diagnosis cancer. Data collected 2011-2015, regression model sample sizes: n = 342-351. Results: Congruence between preferred and actual place of death in the raw merged dataset was 51%. Patients living alone were significantly less likely to prefer home versus institution death (OR 0.389, 95%CI 0.157-0.961), less likely to die at home (OR 0.383, 95%CI 0.274-0.536), but had no significant association with congruence. Conclusions: The findings highlight the value in examining place of death preferences as well as congruence, because preferences may be influenced by what is feasible rather than what patients would like. The analyses also underline the importance of well-resourced community-based supports, including homecare, facilitating hospital discharge, and management of complex (eg, non-cancer) conditions, to facilitate patients to die in their preferred place.

Matters of care and the good death - rhetoric or reality?

PURPOSE OF REVIEW: The notion of a 'good death' is central to hospice and palliative care philosophy. This review interrogates social imaginaries of the 'good death' in the context of current global, health and sociopolitical challenges. RECENT FINDINGS: Research literature and policy documents across fields continue to place emphasis on the 'good death'. As part of the equity turn in palliative care, there is a growing body of work highlighting the diverse perspectives of people whose voices were heretofore not understood. Inequities are evident not only in terms of who has access to a 'good death' but also related to the effects of the dominant 'good death' script itself. SUMMARY: There is increasing evidence that pursuit of the 'good death' narrative may be counter to supporting people as they are living and dying. The authors instead argue for a research, policy and practice shift to 'matters of care'.

Assessment of the Competence of Nurses in Taking Care of a Dying Patient in Poland.

During nursing education, few practical hours are devoted to comprehensively preparing students to care for a dying patient. Contact with a dying patient is a key element of the job of every working nurse in the profession. Therefore, it is necessary to properly prepare nurses to care for a dying patient. This study aimed to assess the professional competence of nurses in caring for a dying patient and the factors that affect this preparation. This study involved 223 nurses during master's degree in nursing at the Medical University of Warsaw, receiving either full-time education (group I, N = 121) or hybrid education (group II, N = 102). The study used the FATCOD-BP ((Frommelt Attitudes Toward the Care Of the Dying scale Form B, Polish version)) questionnaire (Cronbach's alpha 0.75), an original questionnaire containing questions about feelings experienced during the SARS-CoV-2 virus pandemic and sociodemographic questions. FATCOD-BP for all groups was below average regarding caring for a dying patient (M = 109, SD = 11.68). Nurses pursuing full-time education were better prepared to care for a dying patient than were nurses pursuing hybrid education. Nurses who exhibited fear of their own deaths had a lower subjective level of preparation for caring for a dying patient. (1) Nurses are not sufficiently prepared to care for a dying patient. (2) The training of nurses should be provided in the form of in-patient education, and the methods of training should be modified by increasing the number of hours of practical and theoretical instruction in palliative care for a dying patient.

'I am still valuable' - A qualitative study of incurable cancer patients coping in hospice care.

BACKGROUND: Knowledge of the experiences of coping in patients with incurable cancer is essential for high-quality palliative and end-of-life care. AIM AND OBJECTIVE: To describe the coping experiences of patients with incurable cancer in hospice care to better develop patient-centred care. METHODS: The data for this qualitative study were collected through semi structured interviews, with patients with incurable cancer in hospice care (N = 20) and analysed with inductive content analysis. Ethical and organisational approvals were obtained, and the participants received both verbal and written information before consenting to participate. RESULTS: The patients' coping was enhanced with their involvement in treatment-related decisions. Valuing day-to-day living and coping with emotional stressors helped them accept their own life situations. Accepting their increasing fragility was enhanced by their self-reappraisal. The patients found security in the possibility of receiving support when they needed it. Although the ordinariness of dying in hospice care settings was sometimes too much to bear, they understood dying to be a part of the natural cycle of life. They questioned the responsiveness of healthcare services because they felt that they were not always heard. STUDY LIMITATIONS: Because this study was limited to a specific population of cancer patients in hospice care, the results might not be generalised to other patient groups with chronic diseases or other palliative care settings. CONCLUSIONS: The experiences of patients in hospice care of coping with incurable cancer were reminiscent of the common coping process descriptions. Surprisingly, even though participants voiced that they had accepted their situation, dying itself was something they did not find crucial to discuss. The crucial aspects - without being in denial - dealt more with focusing on positive thinking and facing life.

Spiritual Care Needs of Terminal Ill Cancer Patients.

OBJECTIVE: Terminal ill cancer patients experience spiritual distress and need spiritual care. They are in need of palliative care in the long term to alleviate suffering. The aim of the study was to investigate spiritual needs of terminal ill cancer patients. METHODS: This study is a cross-sectional study. The participants were Thai terminal ill cancer patients from seven hospitals in northern, northeast, central, and southern regions of Thailand. Three-hundred-and-twenty-two participants were purposively selected. The instrument used in this study was a spiritual needs scale, consisting of 41 items with 4-point rating scale. Statistical analysis was F-test for one-way analysis of variance. RESULTS: The majority of terminal ill cancer patients aged fifty-one years old. Most of them were females with end stage cancer status that did not respond to treatment. The overall spiritual needs of terminal ill cancer patients were at the moderate level (M = 18.21, SD = 2.56). The highest mean was found in the 'prepare for death' dimension, followed by the 'have meaning, values, and life purposes' and the 'have opportunity to pursue most important things in life' dimensions respectively and had different spiritual needs among status (F(3,318) = 3.66, p < 0.05), number of family members (F(8,313) = 5.07,  p < 0.05), living with family (F(2,319) = 3.91, p < 0.05), and spiritual anchor (F(2,319) = 4.13, p < 0.05). CONCLUSION: The study results provide insight into spiritual needs of terminal ill cancer patients which assists in improving the provision of holistic care to let the patients be happy at end-of-life phase.

Female healthcare workers and the Covid-19 pandemic in Brazil: a sociological analysis of healthcare work. / Trabalhadoras da saúde face à pandemia: por uma análise sociológica do trabalho de cuidado.

The article aims to discuss the care provided by female healthcare workers in Brazil during the Covid-19 pandemic, based on a sociological analysis by authors who discuss such care as devalued and poorly paid work performed to a large extent by low-income women. The work involves social constructions of emotions and has used the body as a work instrument in care for others. In addition, the increasingly precarious nature of health work in Brazilian society, aggravated in recent decades, with an increase in temporary contracts, loss of labor rights, overload of tasks, and adverse work conditions, among others, adds to the increase in medical and hospital care in the Covid-19 pandemic. In this context, female healthcare workers experience lack of personal protective equipment, fear of coronavirus infection, concerns with their children and other family members, and illness and death of coworkers and themselves. The article highlights the need for government attention and management of healthcare work and professional societies, analyzing the work conditions female healthcare workers are experiencing in confronting the pandemic.

Este texto tem como finalidade discutir o cuidado de trabalhadoras da área da saúde em face da Covid-19, sob a análise sociológica de autoras que o vêm discutindo enquanto um trabalho que é desempenhado, na sua maioria, pelas mulheres das classes populares, é desvalorizado e sofre baixa remuneração. É uma atividade que envolve as construções sociais das emoções e tem utilizado o corpo como um instrumento de trabalho no cuidado com o outro. Além disso, a precarização do trabalho em saúde na sociedade brasileira acirrada nas últimas décadas, como o aumento de contratos temporários, perdas de direitos trabalhistas, a sobrecarga das atividades, condições de trabalho precárias, dentre outros, soma-se com o aumento dos atendimentos médico-hospitalares diante da pandemia da Covid-19. Neste contexto, as trabalhadoras em saúde vivenciam as ausências de equipamentos de proteção individual, medo de contaminação pelo vírus, preocupações com filhos e familiares, vivências diante da morte e do adoecimento de si e de colegas de profissão. Este texto aponta para a necessidade de atenção governamental, bem como para a gestão do trabalho em saúde e dos órgãos de classe profissional, analisando as condições de trabalho que as trabalhadoras em saúde estão vivendo no enfrentamento da pandemia.

Assessment of the Reliability of the Polish Language Version of the FATCOD-B Scale Among Nursing Students.

Providing care for dying patients and their families is an important skill for the nursing profession. The attitude of persons working with a dying person plays an important role in the quality of care provided. In this context, comprehensive preparation of medical staff for care giving to dying patient is very important. No scientific research based on the Frommelt Attitudes Toward Care of the Dying Scale form B has been done in Poland. The study aimed at translations, assessments of credibility, and reliability of psychometric properties of the Polish version of the questionnaire of Frommelt Attitudes Toward Care of the Dying Scale form B (FATCOD-BP). The study included 107 students of the Nursing Department at Medical University of Warsaw. The validation was performed with the use of Cronbach's alpha coefficient, Horn's parallel analysis, Kaiser-Meyer-Olkin index, and Bartlett's sphericity test. The result of Cronbach's alpha for FATCOD-BP was a = 0.725. Kaiser-Meyer-Olkin index equaled 0.696. Bartlett's sphericity test was p < 0.001. The FATCOD-BP scale is characterized by a high index of reliability. Reciprocal correlations occur between variables introduced into the model. The FATCOD-BP scale is an appropriate research tool for conducting further studies in nurses in Poland.

A systematic review of older adults' request for or attitude toward euthanasia or assisted-suicide.

OBJECTIVES: Prevalence rates of death by euthanasia (EUT) and physician-assisted suicide (PAS) have increased among older adults, and public debates on these practices are still taking place. In this context, it seemed important to conduct a systematic review of the predictors (demographic, physical health, psychological, social, quality of life, religious, or existential) associated with attitudes toward, wishes and requests for, as well as death by EUT/PAS among individuals aged 60 years and over. METHOD: The search for quantitative studies in PsycINFO and MEDLINE databases was conducted three times from February 2016 until April 2018. Articles of probable relevance (n = 327) were assessed for eligibility. Studies that only presented descriptive data (n = 306) were excluded. RESULTS: This review identified 21 studies with predictive analyses, but in only 4 did older adults face actual end-of-life decisions. Most studies (17) investigated attitudes toward EUT/PAS (9 through hypothetical scenarios). Younger age, lower religiosity, higher education, and higher socio-economic status were the most consistent predictors of endorsement of EUT/PAS. Findings were heterogeneous with regard to physical health, psychological, and social factors. Findings were difficult to compare across studies because of the variety of sample characteristics and outcomes measures. CONCLUSION: Future studies should adopt common and explicit definitions of EUT/PAS, as well as research designs (e.g. mixed longitudinal) that allow for better consideration of personal, social, and cultural factors, and their interplay, on EUT/PAS decisions.

Aspectos bioéticos dos cuidados em saúde às pessoas idosas ao fim da vida / Bioethical aspects of health care provided to older adults at the end of their lives / Aspectos bioéticos de los cuidados de salud a adultos mayores en el final de la vida

Objetivo: analisar a produção científica nacional e internacional, buscando as interfaces existentes entre os princípios bioéticos e os cuidados em saúde prestados ao fim da vida às pessoas idosas. Método: revisão integrativa, cuja busca ocorreu entre outubro e novembro de 2019 nas bases de dados Medline via Pubmed, Lilacs e Scopus com os descritores: "Palliative Care", "Aged" e "Bioethics" de 2014-2019. Resultados: a partir dos artigos selecionados, emergiram as seguintes categorias: condutas terapêuticas frente aos cuidados ao fim da vida; tomada de decisão nos cuidados ao fim da vida; e desafios nos cuidados ao fim da vida. Conclusão: destaca-se a relevância dos profissionais manterem o compromisso com a pessoa idosa e sua família de forma a considerar suas subjetividades e preferências e os instrumentalizar para que os cuidados sejam pautados em princípios bioéticos, para assim proporcionar um processo de morte e de morrer com dignidade.

Objective: to examine the Brazilian and international scientific production for connections between bioethical principles and the health care provided to older adults at the end of their lives. Method: between October and November 2019 this integrative review searched the Medline (Pubmed), Lilacs, and Scopus databases using the descriptors: "Palliative Care", "Aged", and "Bioethics" for the period 2014-2019. Results: the following categories emerged from the selected articles: therapeutic conducted with regard to end-of-life care; decision making on end-of-life care; and challenges in end-of-life care. Conclusion: of particular importance is for health professionals to uphold their commitment to older adults and their families, consider their subjectivities and preferences, and empower and equip them so that care is guided by bioethical principles in order to assure a dignified process of dying and death.

Objetivo: examinar la producción científica brasileña e internacional en busca de conexiones entre los principios bioéticos y la atención médica brindada a los adultos mayores al final de sus vidas. Método: entre octubre y noviembre de 2019, esta revisión integradora buscó en las bases de datos Medline (Pubmed), Lilacs y Scopus utilizando los descriptores: "Cuidados paliativos", "Envejecido" y "Bioética" para el período 2014-2019. Resultados: las siguientes categorías surgieron de los artículos seleccionados: terapéutico realizado con respecto a la atención al final de la vida; toma de decisiones sobre la atención al final de la vida; y desafíos en la atención al final de la vida. Conclusión: es de particular importancia que los profesionales de la salud mantengan su compromiso con los adultos mayores y sus familias, consideren sus subjetividades y preferencias, y los empoderen y equipen para que la atención se guíe por principios bioéticos para asegurar un proceso digno de muerte y muerte.

Palliative and end-of-life care in COVID-19 management in sub-Saharan Africa: a matter of concern.

The COVID-19 pandemic has strained health care systems beyond capacity resulting in many people not having access to life-sustaining measures even in well-resourced countries. Palliative and end-of-life care are therefore essential to alleviate suffering and ensure a continuum of care for patients unlikely to survive. This is challenging in sub-Saharan Africa where lack of trained teams on basic palliative care and reduced access to opioids limit implementation of palliative and end-of-life care. At the same time, health care providers have to cope with local cultural conceptions of death and absence of advance care directives.

Perceived Impediments to Completed Brain Autopsies Among Diverse Older Adults Who Have Signed a Uniform Anatomical Gift Act for Brain Donation for Clinical Research.

Background: A small number of older adults in the United States who agree to brain donation for clinical research belong to diverse racial, ethnic, and economic groups. Those who agree, however, are less likely to have completed brain autopsies compared with older non-Latino Whites of higher socioeconomic status. As such, our understanding of Alzheimer's disease and related dementias remains limited in these underrepresented and understudied populations. Here, we examine perceived impediments to completed brain autopsies among diverse older adults who have agreed to brain donation for clinical research. Methods: Participants (N=22) were older adults (mean age=77 years) who self-identified as African American (n=8), Latino (n=6), or White of lower income (n=8). All participants had previously agreed to brain donation via the Uniform Anatomical Gift Act. Each participant took part in a one-time, semi-structured focus group. Data were analyzed using a Grounded Theory Approach with both Open Coding and Constant Comparative Coding. Results: Perceived impediments to completed brain autopsies varied by group. Older African Americans and older Latinos expressed concern about a lack of follow-through by family members regarding their brain donation wishes. Older Whites of lower income indicated that their own uncertainty surrounding the processes of brain donation and brain autopsy might serve as an impediment. Discussion: Diverse older adults expressed different perceived impediments to having brain autopsies completed upon their death. Continuous education for diverse older adults and their family members regarding brain donation for clinical research, including clear guidelines and processes, may facilitate completed brain autopsies among diverse older adults.

Relationship between psychological pain and death anxiety with comprehensive geriatric assessment in older adults.

AIM: Psychological pain refers to the torment that results from adverse experiences, such as loneliness, guilt, frustration, hopelessness or loss. Psychological pain may impair physical and psychosocial functioning of older adults. Death anxiety is associated with cognitive function deterioration, change to social environment and increased risk of depression. This study investigated associations among components of comprehensive geriatric assessment (CGA), death anxiety and psychological pain. METHODS: In total, 100 patients aged ≥65 years were included in this study. Demographic characteristics and CGA test scores were examined. The Templer scale was used to evaluate death anxiety; the Psychache scale was used to evaluate psychological pain. Multivariate logistic regression analysis was performed to identify parameters independently associated with poor cognitive performance and death anxiety. RESULTS: The patients' median age was 73 (65-92) years. Death anxiety was detected in 34% of patients. Psychological pain and death anxiety levels were significantly associated with Mini-Mental State Examination, clock drawing test, Geriatric Depression Scale-15 and Instrumental Activities of Daily Living (IADL) scores. Psychological pain levels were independently associated with cognitive performance. Finally, psychological pain and IADL scores were independently associated with death anxiety. CONCLUSIONS: During a CGA, practitioners should note that psychological pain and death anxiety may negatively affect cognitive function and IADL scores. Patients should be re-evaluated, following suitable psychotherapeutic interventions. Geriatr Gerontol Int 2020; 20: 1056-1060..

The relationship between death obsession and religiosity in non-demented Muslim residents of a nursing home in TunisiaDeath obsession and religiosity.

BACKGROUND: Death distress is a significant problem in the older population and may be more pronounced in certain vulnerable older people, including those living in nursing home facilities. We aimed to assess death obsession (DO) in elderly people without dementia living in nursing homes, and to examine the association between DO and religiosity. METHODS: We carried out a cross-sectional survey involving 42 elderly subjects living in a nursing home in Manouba, Tunisia. The "Mini-Mental State Examination", "Geriatric Depression Scale", "Activity of Daily Living", "Cumulative Illness Rating Scale-Geriatric", "Death Obsession Scale", "Brief Religious Coping Scale" and "Arabic Religiosity Scale" were used to assess cognitive functions, depression, level of dependency, comorbidities, death obsession, religious coping, and religiosity, respectively. RESULTS: We found relatively high death obsession scores, with no gender differences (mean scores = 33.1 ± 18.1). Death obsession was significantly and positively associated with comorbidity scores (p = 0.04). No significant correlation was found between death obsession scores and religiosity and religious coping scores based on the bivariate analysis. Similarly, multiple hierarchical regression revealed that religious variables (overall religiosity and religious coping) did not significantly contribute to variance in death obsession. CONCLUSION: Older people living in nursing homes have specific psychosocial and spiritual needs which health care providers should recognise, assess and treat appropriately, at an early stage.

Deceased Organ Donation in Syria: Challenges and Solutions.

The first living-donor kidney transplant in Syria was performed 41 years ago; by 2019, 5407 renal transplants had been performed there. Three heart transplants from deceased donors were performed in the late 1980s; cardiac transplant activities have since discontinued. In 2003, a new, national Syrian legislation was enacted authorizing the use of organs from living unrelated donors and from deceased donors. This important law was preceded by another big stride in this regard: the acceptance by the higher Islamic religious authorities in Syria in 2001 of the principle of procurement of organs from deceased donors, provided that consent is given by a first- or second-degree relative. After the enactment of this law, kidney transplant rates increased from 7 per million population in 2002 to 17 per million population in 2007. Kidney transplants performed abroad for Syrian patients declined from 25% in 2002 to < 2% in 2007. Kidney transplants continued at comparable rates until 2010, before the beginning of the political crisis in 2011. Four decades after the first successful kidney transplant in Syria, however, patients needing an organ transplant must rely on living donors only. Moreover, 17 years after the law authorizing use of organs from deceased donors, a program is still not in place in Syria, and additional improvement of the legal framework is needed. The war, limited resources, and lack of public awareness about the importance of organ donation and transplant appear to be major factors inhibiting initiation of a deceased-donor program in Syria. A concerted and ongoing education campaign is needed to increase awareness of organ donation, change negative public attitudes, and gain societal acceptance. Every effort must be made to initiate a deceased-donor program to lessen the burden on living donors and to enable national self-sufficiency in organs for transplant.

Deceased-Donor Organ Transplantation in India: Current Status, Challenges, and Solutions.

Tamil Nadu, Gujarat, Telangana, Maharashtra, Kerala, Chandigarh, Karnataka, National Capital Territory of Delhi, and Rajasthan are states and union territories having active deceased-donor organ transplant programs in India. Transplant data (2013-2018) have been collected by the National Organ and Tissue Transplant Organization from all states and union territories of India and submitted to the Global Observatory on Donation and Transplantation. From 2013 to 2018, 49155 transplants were reported in India, including 39000 living-donor organ recipients and 10 155 deceased-donor organ recipients. These transplants were for kidney (living donor = 32584, deceased donor = 5748), liver (living donor = 6416, deceased donor = 2967), heart (deceased donor = 895), lung (deceased donor = 459), pancreas (deceased donor = 78), and small bowel (deceased donor = 8). According to 2018 data, India was the second largest transplanting country in the world in terms of the absolute number of transplants. Here, we discuss the status, progress, challenges, and solutions for deceaseddonor organ transplantation. The plan to increase rates of organ donation in India include the following points: teamwork and focus by intensive care unit doctors; public education on organ donation using social media; professional education and family donation conversation programs for brain death declaration and donor management; organ procurement organizations; international collaboration and regular meetings and updates for organizations working in the field of organ transplantation; grief counseling and reporting of potential donation for families of recently deceased people; nonfinancial incentivization to families of potential organ donors; expert committees and standard operating protocols for use of marginal donor organs, donation after circulatory death programs, and machine perfusion; maintenance of transparency and ethics in organ donation, allocation, and transplantation as directed by governmental, nongovernmental, and intergovernmental entities; and regular audit of progress and registry data.

Respect, Interaction, and Immediacy: Addressing the Challenges Associated With the Different Religious and Cultural Approaches to Organ Donation in Australia.

Australia is a multicultural society of just over 25 million people, with approximately 310 different ancestries, 300 languages, and 150 religions. This diversity suggests that Australia's people might hold a multiplicity of beliefs regarding organ donation. Research shows that most people in Australia have a strong, positive perception of organ donation; they believe that organ donation helps others and benefits society. However, the current rate of 21.6 donors per million population is below expectations and below the demand for organs needed for transplantation. This has led us to ask whether donation consent rates are differentiated by religious and cultural affiliation. We present a case study of New South Wales, Australia, to address this issue. New South Wales is the most populous state in Australia and is also religiously and culturally diverse. Donation consent data (2016-2019) by ethnicity and by religion show that donation consent rates have improved but not across all groups. Initiatives to increase awareness and support for organ and tissue donation among culturally and linguistically diverse and Aboriginal and Torres Strait Islander communities are discussed. Research is also presented that investigates whether registration rates on the Australian Organ Donor Register can be increased and the implications of this for increasing consent for donation. This research underscores the importance of respecting the diversity of beliefs held regarding organ donation, both positive and negative; offering all people a face-to-face interaction opportunity to consider their beliefs about organ donation, ask questions, and raise concerns without judgment; and providing people with an immediate opportunity to register their donation decision on the Australian Organ Donor Register. The challenges associated with adopting these initiatives are considered along with the role of religious and cultural leaders within the context of organ donation and registration; the unspoken concerns of cultural and religious groups are also addressed. In conclusion, we propose that the rich diversity of Australian society is more of a backdrop than a barrier to organ donation.

Needs analysis of parents following sudden cardiac death in the young.

OBJECTIVE: The sudden cardiac death (SCD) of a young person is a devastating event for any parent. Inherited heart disease is often either identified or assumed to be the cause. Few studies have explored the psychosocial impact to the surviving at-risk family members. We sought to investigate the needs of parents who have experienced the SCD of their child (≤45 years). METHODS: A quantitative needs analysis questionnaire was developed based on semistructured interviews, including one focus group and a review of relevant literature. Eligible participants were invited to participate in this cross-sectional survey study. RESULTS: There were 38 parents who completed a quantitative survey. Parents' perceived needs for information and support spanned medical, psychosocial, spiritual and financial domains. Of the support and information needs assessed, medical needs were identified as the most important domain, followed by psychosocial, spiritual and financial. Importantly, psychosocial information and support needs were reported as the most unmet need, endorsed by 54% of parents. Medical information and support needs were reported as unmet by almost one third of parents. The two most endorsed needs were 'To have the option of whether or not you would pursue genetic testing for yourself or family members' and 'To understand what happened'. CONCLUSIONS: This work demonstrates for the first time, the multifactorial needs of parents after SCD in the young. With the greatest unmet need reported as psychosocial needs, there is clear necessity to find ways of integrating psychological support in to the care of families after SCD in the young.