VigiPallia : Résultats

Recherches dans le fonds documentaire/
Toutes les bibliographies thématiques/
R/
Rapports de l'ONFV

##titre_notice##

##grp1_nom##

- ##grp2_nom## : ##grp2_synthese_detail##

##reservable_synthese##

##detail_synthese##

JEUNE ADULTE

0 sélectionnée(s) / 186 réponse(s)

(1) 2 3 4 ... 10 > »

Men on losing a male to suicide - a gender analysis

OLIFFE, John L. ; BROOM, Alex ; KELLY, Mary T. ; BOTTORFF, Joan L. ; CREIGHTON, Genevieve M. ; FERLATTE, Olivier
Qualitative health research, 2018, vol.28, n°9, p. 1383-1394

Document en ligne

Thème : Deuil et travail du deuil.

SUICIDE ; HOMME ; HOMOSEXUALITE ; JEUNE ADULTE ; DEUIL ; CANADA ; PHOTOGRAPHIE ; RECHERCHE QUALITATIVE ; PREVENTION

Although male suicide has received research attention, the gendered experiences of men bereaved by male suicide are poorly understood. Addressing this knowledge gap, we share findings drawn from a photovoice study of Canadian-based men who had lost a male friend, partner, or family member to suicide. Two categories depicting the men's overall account of the suicide were inductively derived: (a) unforeseen suicide and (b) rationalized suicide. The "unforeseen suicides" referred to deaths that occurred without warning wherein participants spoke to tensions between having no idea that the deceased was at risk while reflecting on what they might have done to prevent the suicide. In contrast, "rationalized suicides" detailed an array of preexisting risk factors including mental illness and/or substance overuse to discuss cause-effect scenarios. Commonalities in unforeseen and rationalized suicides are discussed in the overarching theme, "managing emotions" whereby participants distanced themselves, but also drew meaning from the suicide.

Origine : PubMed

Models of non-hospice palliative care - a review

BEASLEY, Amy ; BAKITAS, Marie A. ; EDWARDS, Rebecca ; KAVALIERATOS, Dio
Annals of palliative medicine, 02/2019, vol.8, n°Suppl 1, p. S15-S21

Document en ligne

Thème : Soins. Cote : eD02.00

DEMARCHE PALLIATIVE ; ESSAI CONTROLE RANDOMISE ; UNITE SOINS PALLIATIFS ; ADOLESCENT ; JEUNE ADULTE ; ADULTE ; HOSPITALISATION ; SERVICE URGENCES ; HOSPITALISATION JOUR

Palliative care offers patients with a serious illness and their families access to services that can improve quality of life, mood, and symptoms. However, the term palliative care is often confused with end of life or hospice services limiting its application to persons with chronic illnesses who might benefit. Non-hospice palliative care is a term that is emerging to more accurately reflect the broader care model that palliative care represents. The aim of this review was to identify the characteristics of published nonhospice palliative care interventions. We derived our sample predominantly from a recently published systematic review and meta-analysis and selected studies published since the review. Inclusion criteria were: self-described palliative care intervention studies using randomized designs for participants with lifelimiting illnesses aged 18 years or older. These 38 studies fell into 3 broad categories: primary, specialty, and hybrid models. Common challenges among these models include limited education of generalists, limited reimbursement, and limited access in certain areas. However, increasing palliative care usage has also been associated with increased hospice use and appropriate timing of referrals.

Origine : PubMed

Patterns and outcomes of care in children with advanced heart disease receiving palliative care consultation

MARCUS, Katherine L. ; BALKIN, Emily M. ; AL-SAYEGH, Hasan ; GUSLITS, Elyssa ; BLUME, Elizabeth D. ; MA, Clement ; WOLFE, Joanne
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, 02/2018, vol.55, n°2, p. 351-358

Document en ligne

Thème : Age de la vie, situations spécifiques liées à la fin de vie. Cote : eD05.01.00

DEMARCHE PALLIATIVE ; PHASE TERMINALE ; ADOLESCENT ; EQUIPE SOIGNANTE ; ETUDE RETROSPECTIVE ; FAMILLE ; ENFANT ; NOURRISSON ; NOUVEAU NE ; JEUNE ADULTE ; PEDIATRIE ; MALADIE CARDIOVASCULAIRE ; FIN VIE ; SOIN

Context: Although access to subspecialty pediatric palliative care (PPC) is increasing, little is known about the role of PPC for children with advanced heart disease (AHD).
Objectives: The objective of this study was to examine features of subspecialty PPC involvement for children with AHD.
Methods: This is a retrospective single-institution medical record review of patients with a primary diagnosis of AHD for whom the PPC team was initially consulted between 2011 and 2016.
Results: Among 201 patients, 87% had congenital/structural heart disease, the remainder having acquired/nonstructural heart disease. Median age at initial PPC consultation was 7.7 months (range 1 day-28.8 years). Of the 92 patients who were alive at data collection, 73% had received initial consultation over one year before. Most common indications for consultation were goals of care (80%) and psychosocial support (54%). At initial consultation, most families (67%) expressed that their primary goal was for their child to live as long and as comfortably as possible. Among deceased patients (n = 109), median time from initial consultation to death was 33 days (range 1 day-3.6 years), and children whose families expressed that their primary goal was for their child to live as comfortably as possible were less likely to die in the intensive care unit (P = 0.03) and more likely to die in the setting of comfort care or withdrawal of life-sustaining interventions (P = 0.008).
Conclusion: PPC involvement for children with AHD focuses on goals of care and psychosocial support. Findings suggest that PPC involvement at end of life supports goal-concordant care. Further research is needed to clarify the impact of PPC on patient outcomes.

Origine : PubMed

Unique grief experiences - the needs of emerging adults facing the death of a parent

PORTER, Natalie ; CLARIDGE, Amy M.
DEATH STUDIES, 13/06/2019, p. 1-11

Document en ligne

Thème : Deuil et travail du deuil.

MORT ; ENFANT ; PERSONNE ENDEUILLEE ; PARENT ; SOUTIEN DEUIL ; JEUNE ADULTE

Enduring the death of a family member during emerging adulthood is associated with intense grief. In total, 15 adults between the ages of 18–32 were interviewed about their experiences. Results indicated emerging adults experience a range of mixed emotions after losing a parent, face unique challenges related to their developmental stage, and tend to be resilient moving forward. Emerging adults need opportunities to engage with others experiencing grief related to parental death and may benefit from specialized support groups that address the developmental challenges inherent among this population.

Origine : Taylor and Francis+NEJM

Continuing bonds with children and bereaved young people - a narrative review

CLABBURN, Oliver ; KNIGHTING, Katherine ; JACK, Barbara A. ; O'BRIEN, Mary R.
OMEGA JOURNAL OF DEATH AND DYING, 05/06/2019, Pagination inconnue

Document en ligne

Thème : Deuil et travail du deuil.

ATTACHEMENT ; PERSONNE ENDEUILLEE ; ENFANT ; JEUNE ADULTE ; DEUIL ; REVUE LITTERATURE ; SOUVENIR

BACKGROUND: Finding alternative ways to reconnect with the deceased is a common feature of bereavement. However, it is currently unclear how bereaved children or young people establish and develop a "continuing bond" with deceased family members.
AIM: To investigate how bereaved young people continue bonds with deceased family members.
DESIGN: A systematically conducted narrative review was conducted using six electronic databases: CINAHL, Medline, EMBASE, PsycINFO, PubMed, and BNI. Limiters were applied to peer-reviewed articles published in English. Studies were assessed for methodological quality using the Joanna Briggs Institute Critical Appraisal Tools.
RESULTS: Twenty articles were included in the review. Three overarching themes were generated: unintended connections, intended connections, and internalized connections.
CONCLUSION: Bereaved young people establish a sense of connection with deceased family members through various means (e.g., unprovoked or spontaneous reminders, physical mementos, internalized memories). Some connections are unintended and occur spontaneously. However, other young people will specifically seek ways to remember the deceased to provide a sense of enduring connection.

Origine : PubMed

Interdisciplinary communication - documentation of advance care planning and end-of-life care in adolescents and young adults with cancer

WATSON, Anne ; WEAVER, Meaghann ; JACOB, Shana ; LYON, Maureen
JOURNAL OF HOSPICE AND PALLIATIVE NURSING, 01/06/2019, vol.21, n°3, p. 215-222

Document en ligne

Thème : Age de la vie, situations spécifiques liées à la fin de vie.

INTERDISCIPLINARITE ; COMMUNICATION ; PLANIFICATION ; ANTICIPATION ; SOIN ; FIN VIE ; ADOLESCENT ; JEUNE ADULTE ; CANCER ; FIN VIE

Advance care planning is being increasingly recognized as a component of quality in end-of-life care, but standardized documentation in the electronic health record has not yet been achieved, undermining interdisciplinary communication about care needs and limiting research opportunities. We examined the electronic health records of nine adolescent and young adults with cancer who died after participation in an advance care planning clinical trial (N = 30). In this secondary analysis of this subgroup, disease trajectory and end-of-life information were abstracted from the electronic health record, and treatment preferences from the original study were obtained. All deceased participants older than 18 years had a surrogate decision maker identified in the electronic health record, and all deceased participants had limitations placed on their care, varying from 1.5 hours up to 2 months before death. However, assessment of relations between treatment preferences and end-of-life care was difficult and revealed the presence of circumstances that advance care planning is designed to avoid, such as family conflict. Lack of an integrated health care record regarding advance care planning and end-of-life care makes both care coordination and examination of the association between planning and goal concordant care more difficult.

The perceived impact of suicide bereavement on specific interpersonal relationships - a qualitative study of survey data

AZORINA, Valeriya ; MORANT, Nicola ; NESSE, Hedvig ; STEVENSON, Fiona ; OSBORN, David ; KING, Michael ; PITMAN, Alexandra
International journal of environmental research and public health, 21/05/2019, vol.16, n°10, p. 1-15

Document en ligne

Thème : Deuil et travail du deuil. Cote : eD10.01

DEUIL ; SUICIDE ; RELATION INTERPERSONNELLE ; RECHERCHE QUALITATIVE ; RISQUE ; PERSONNE ENDEUILLEE ; JEUNE ADULTE ; ROYAUME UNI ; SOUTIEN DEUIL

People bereaved by suicide have an increased risk of suicide and suicide attempt, yet report receiving less support than people bereaved by other sudden deaths. Reductions in support may contribute to suicide risk, yet their nature is unclear. We explored the impact of suicide bereavement on the interpersonal relationships of young adults in the UK using an online survey to collect qualitative data. We conducted thematic analysis of free-text responses from 499 adults to questions capturing the impact of bereavement on relationships with partners, close friends, close family, extended family, and other contacts. We identified four main themes describing the changes in relationships following the suicide: (1) Social discomfort over the death (stigma and taboo; painfulness for self or others to discuss; socially prescribed grief reactions); (2) social withdrawal (loss of social confidence; withdrawal as a coping mechanism); (3) shared bereavement experience creating closeness and avoidance; (4) attachments influenced by fear of further losses (overprotectiveness towards others; avoiding attachments as protective). These findings contribute to understanding deficits in support and pathways to suicidality after suicide bereavement. Such disrupted attachments add to the burden of grief and could be addressed by public education on how to support those bereaved by suicide.

Origine : PubMed

Preferences regarding end-of-life care among adolescents and young adults with cancer - results from a comprehensive multicenter survey in Japan

HIRANO, Hidekazu ; SHIMIZU, Chikako ; KAWACHI, Asuka ; OZAWA, Miwa ; HIGUCHI, Akiko ; YOSHIDA, Saran ; SHIMIZU, Ken ; TATARA, Ryohei ; HORIBE, Keizo
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, 08/05/2019, Pagination inconnue

Document en ligne

Thème : Soins.

PREFERENCE ; FIN VIE ; ADOLESCENT ; JEUNE ADULTE ; CANCER ; JAPON ; PATIENT ; CHIMIOTHERAPIE

CONTEXT: Patient preferences influence end-of-life (EOL) care which patients receive. However, preferences regarding EOL care among adolescent and young adult (AYA) cancer population remain unclear.
OBJECTIVES: The objective of the study was to evaluate preferences regarding EOL care among AYA cancer population.
METHODS: We evaluated preferences regarding EOL care as a part of a comprehensive multicenter questionnaire study investigating the experience and needs of Japanese AYA cancer population.
RESULTS: A total of 349 AYA cancer population (213 AYA cancer patients and 136 AYA cancer survivors) were evaluated. Eighteen six percent (296/344), 53% (180/338), 88% (301/341) and 61% (207/342) of participants with valid response preferred to have prognostic disclosure, receive palliative chemotherapy for incurable cancer with limited efficacy at the expense of considerable toxicity, actively use palliative care and stay home at EOL, respectively. In multivariate analysis, the preference regarding prognostic disclosure was associated positively with no child status (OR = 3.05, p = 0.003) and negatively with history of chemotherapy (OR = 0.23, p = 0.009), the preference regarding palliative chemotherapy for incurable cancer with limited efficacy at the expense of considerable toxicity was associated positively with status under active cancer treatment (OR = 1.74, p = 0.03) and the preference of staying home at EOL was positively associated with anxiety (OR = 1.72, p = 0.04).
CONCLUSION: This study elucidated preferences regarding EOL care among Japanese AYA cancer population. These findings may help health care practitioners to have better understanding of preferences regarding EOL care among this population.

Origine : PubMed

Use of continuous dexmedetomidine at home for nearly three years in a young woman with end-stage cyanotic congenital heart disease and cyclic vomiting

THIENPRAYOON, Rachel ; MEYER, Mark ; FLINT, Hilary ; WEIDNER, Norbert ; HIRSCH, Russel
JOURNAL OF PALLIATIVE MEDICINE, 06/05/2019, Pagination inconnue

Document en ligne

Thème : Médicaments - Pharmacie.

THERAPEUTIQUE MEDICAMENTEUSE ; JEUNE ADULTE ; MALADIE CARDIOVASCULAIRE ; VOMISSEMENT ; FIN VIE ; UNITE SOINS PALLIATIFS ; PEDIATRIE ; HOSPITALISATION DOMICILE SOINS PALLIATIFS

A 14-year-old girl with a history of complex congenital heart disease in end-stage heart failure and with cyclic vomiting was admitted to our hospice program in 2012. Before hospice enrollment, she had required intermittent infusions of dexmedetomidine to abort cyclic vomiting episodes after cardiac catheterization procedures. Following a hospital admission in November 2013, she was discharged home in the care of our hospice on a continuous dexmedetomidine infusion. She remained on this infusion at varying doses (range of 0.1-0.38 mcg/kg/hour) for nearly three years, until her death in September 2016. This report describes the palliative use of dexmedetomidine in this patient and difficulties related to the use of this medication during the course of her care.

Origine : PubMed

Are youth suicide memorial sites on Facebook different from those for other sudden deaths?

SCOURFIELD, Jonathan ; EVANS, Rhiannon ; COLOMBO, Gualtiero ; BURROWS, Daniel ; JACOB, Nina ; WILLIAMS, Matthew ; BURNAP, Pete
DEATH STUDIES, 16/05/2019, p. 1-9

Document en ligne

Thème : Deuil et travail du deuil. Cote : e00.07DEA

SOUVENIR ; SUICIDE ; JEUNE ADULTE ; RESEAU SOCIAL ; MORT SUBITE

To explore possible distinctive features of online memorials for youth suicides, amid concerns about glorification, we compared public Facebook memorials for suicides and road traffic accident deaths, using Linguistic Inquiry and Word Count software. People who posted on memorial sites wrote at greater length about suicides, using longer words and more quotation marks. Words suggesting causation and achievement were more prevalent in suicide memorials. Thematic content for the two types of death was more similar than different. Suicide memorial posts had more tentative words, non-fluencies, and question marks, suggesting that people were struggling to make sense of these deaths.

Origine : Taylor and Francis+NEJM

Location of death and end-of-life characteristics of young adults with cancer treated at a pediatric hospital

SAN JULIAN MARK, Melissa ; YANG, Gang ; DING, Lili ; NORRIS, Robin E. ; THIENPRAYOON, Rachel
Journal of adolescent and young adult oncology, 23/04/2019, 6 p.

Document en ligne

Thème : Age de la vie, situations spécifiques liées à la fin de vie. Cote : eD05.03

DEMARCHE PALLIATIVE ; CANCER ; UNITE SOINS PALLIATIFS ; FIN VIE ; SOIN ; JEUNE ADULTE ; PEDIATRIE ; ETUDE COHORTE ; ETATS-UNIS

Background: Location of death (LOD) is an important aspect of end-of-life (EOL) care. Adolescents and young adults (YAs) with pediatric malignancies are increasingly treated in pediatric institutions. YAs, generally defined as 18-39 years old, deserve specific attention because adults have unique developmental and social considerations compared with younger patients.
Objective: The goal of this retrospective cohort study was to understand the effect of treatment by a pediatric oncology program on EOL experiences for YAs. Specifically, we examined LOD, hospice, and palliative care (PC) involvement in a cohort of YAs who died of cancer in a large, quaternary care pediatric hospital.
Methods: This was a retrospective cohort study of patients >= 18 years of age, who died of cancer between January 1, 2010, and December 31, 2017. Standardized data were abstracted from the institutional cancer registry and the electronic medical record.
Results: YAs in this cohort more commonly died in the hospital (54.9%). Lack of hospice involvement and the presence of a documented do-not-resuscitate (DNR) order were significantly associated with inpatient death. The majority of patients had long-standing PC involvement (95.8%, median 318 days), a DNR order (78.9%), and had enrolled in hospice care (60.6%) before death.
Conclusions: These results suggest that a significant proportion of YAs with cancer remain inpatient for EOL care. Pediatric oncologists and PC teams may benefit from additional training in the unique psychosocial needs of YAs to optimize EOL care for these older patients.

Origine : PubMed

"TOGETHER WE ARE UNBEATABLE" - young sisters' narration of a sibling's cancer in personal blogs on the internet

SILVEN HAGSTROM, Anneli ; TOFT, Teolinda
International journal of qualitative studies on health and well-being, 12/2019, vol.14, n°1, 14 p.

Document en ligne

Thème : Age de la vie, situations spécifiques liées à la fin de vie. Cote : eD05.02

COPING ; TRAUMATISME ; INTERNET ; IDENTITE ; JEUNE ADULTE ; ENFANT ; CANCER ; FRATRIE ; RECIT VIE ; SOEUR

PURPOSE: Siblings of children and young people diagnosed with cancer are commonly reluctant to talk about their experiences due to the circumstances of the illness situation. This article aims to bring voice to experience and inform practice by investigating what and how three young sisters narrate about their illness experiences in personal blogs on the Internet.
METHODS: A narrative methodology for the analysis of life storytelling was applied primarily to investigate the sister's coping strategies and support needs.
RESULTS: The results show how the sisters constructed their own space for narration, with the main aims of expressing their feelings about the illness and seeking social support. The telling of their experiences along with encouraging comments from a supportive audience enabled a change in position from feeling neglected and silenced to being a recognized agent and caring sister. In addition, through their narrative coping the sisters went from powerless to powerful in their position in relation to cancer.
CONCLUSION: The results highlight the need for siblings to be able to narrate experience in a supportive context, where the processing of their relationship with the ill sister/brother should be understood as an important element of their coping with cancer and death.

Origine : PubMed

Psychosocial experiences of young adults diagnosed with acute leukemia during hospitalization for induction chemotherapy treatment

ALBRECHT, Tara A. ; KEIM-MALPASS, Jessica ; BOYIADZIS, Michael ; ROSENZWEIG, Margaret
JOURNAL OF HOSPICE AND PALLIATIVE NURSING, 04/2019, vol.21, n°2, p. 167-173

Document en ligne

Thème : Médecine. Cote : 00.07JHP

JEUNE ADULTE ; RESSENTI ; PSYCHOSOCIOLOGIE ; CANCER HEMATOLOGIQUE ; HOSPITALISATION ; CHIMIOTHERAPIE ; ETATS-UNIS

The diagnosis of cancer for anyone is a time of fear and uncertainty. For young adults (YAs) diagnosed with acute leukemia (AL), there are the additional challenges related to lengthy aggressive in-hospital treatment, multiple concurrent symptoms, and decreased well-being. The purpose of this study was to explore the experiences of YAs with AL undergoing induction chemotherapy. This study used a nested qualitative longitudinal design with a convenience sample. Qualitative data were collected using semistructured interviews, and participants were invited to maintain journals. The semistructured interviews were audiotaped, transcribed, and loaded into Atlas.ti for analysis. Common themes and categories were verified and used to disseminate the findings. Seven YAs, mean age 32 (SD, 4) years, participated in this study. Three thematic classifications emerged: getting through, supported yet isolated, and information exchange preferences, which detail how these YAs processed and coped during treatment. The findings from this study provide important insights for nurses regarding coping mechanisms that YAs apply, which included relying on technology and social media platforms. Additionally, the YAs in this study discussed their need for information. The findings from this study may provide insights for clinicians currently caring for YAs with AL, while also directing future palliative care research endeavors.

Origine : journals.lww.com

Associations between dimensions of religiousness and psychosocial functioning among bereaved youth

ROONEY, Evan E. ; OOSTERHOFF, Benjamin ; KAPLOW, Julie B.
DEATH STUDIES, 23/03/2019, p. 1-10

Document en ligne

Thème : Deuil et travail du deuil.

PERSONNE ENDEUILLEE ; JEUNE ADULTE ; RELIGION ; TOXICOMANIE ; MILIEU SCOLAIRE ; IMPACT PSYCHOLOGIQUE

Using a sample of recently bereaved youth (N = 2,425; Mage = 15.31, SD = 1.50), this study examined associations between dimensions of religiousness and current functioning. Youth reported on their religious service attendance, religious coping, and the importance of religious beliefs and substance use, academic achievement, depressive symptoms, and self-esteem. Greater religious service attendance was associated with lower substance use and the greater importance of religious beliefs was associated with lower substance use and greater self-esteem. Greater religious coping was associated with greater academic achievement. Findings suggest distinct dimensions of religiousness may have differential implications for adolescent functioning after experiencing loss.

Origine : Taylor and Francis+NEJM

Psychosocial experiences of young adults diagnosed with acute leukemia during hospitalization for induction chemotherapy treatment

ALBRECHT, Tara ; KEIM-MALPASS, Jessica ; BOYIADZIS, Michael ; ROSENZWEIG, Margaret
JOURNAL OF HOSPICE AND PALLIATIVE NURSING, 04/2019, vol.21, n°2, p. 167-173

Thème : Psychologie, psychanalyse. Cote : 00.07JHP

JEUNE ADULTE ; CANCER HEMATOLOGIQUE ; CHIMIOTHERAPIE ; BESOIN FONDAMENTAL ; INFORMATION MALADE ; COPING

La place du psychologue dans la décision médicale partagée en soins palliatifs

VAN LANDER, Axelle
SOINS LA REVUE DE REFERENCE INFIRMIERE, 03/2019, vol.64, n°833, p. 46-48

Document en ligne

Thème : Ethique et déontologie.

ROLE ; PSYCHOLOGUE ; DEMARCHE PALLIATIVE ; DECISION MEDICALE ; ACTEUR SOIN ; ETHIQUE SOIN ; ETUDE CAS ; JEUNE ADULTE

Le concept de décision médicale partagée est particulièrement adapté aux soins palliatifs. Dans les équipes, le rôle des psychologues s’articule au quotidien avec celui des médecins et des soignants pour prendre en considération le sujet dans sa globalité et sa singularité. L’accompagnement d’une patiente âgée de 29 ans illustre les enjeux de cette prise de décision.

Considerations for the cross-cultural adaptation of an advance care planning guide for youth with cancer

DE ARRUDA-COLLI, Marina Noronha Ferraz ; SANSOM-DALY, Ursula ; DOS SANTOS, Manoel Antônio ; WIENER, Lori
Clinical practice in pediatric psychology, 12/2018, vol.6, n°4, p. 341-354

Document en ligne

Thème : Recherche - Evaluation - Méthodologie.

PLANIFICATION ; ANTICIPATION ; SOIN ; CANCER ; JEUNE ADULTE ; ADOLESCENT ; CULTURE ; AUSTRALIE ; BRESIL ; OUTIL ; COMMUNICATION

Objective: Adolescent and young adults' (AYAs) involvement in advance care planning and end-of-life discussions may enhance the decision-making process, reduce stress and improve the patient's quality of life. Given the importance of establishing adequate communication and having culturally-appropriate tools to introduce advance care planning, our paper will describe the cross-cultural adaptation of the advance care planning guide, Voicing My CHOiCES™ in Australia and in Brazil.
Methods: In Brazil, the process involved initially translating the document to Portuguese followed by evaluation by a group of providers and patients (aged 18-39) undergoing cancer treatment. The document was revised based on the feedback received, then back-translated to English and discussed with Voicing My CHOiCES™ 'authors to refine the final version in Portuguese. In Australia, a multi-perspective interview-based study was undertaken with AYA cancer patients/survivors (aged 15-25), siblings, parents, and a range of healthcare providers from the oncology setting, to determine the perceived acceptability of the tool within the Australian clinical context.
Results: These interviews pointed to a variety of recommended adaptations ranging from the aesthetic and linguistic, through to the re-structuring of content within the tool. Adaptations for the Australian setting were then revised in an iterative capacity within several focus groups of AYA participants and healthcare providers.
Conclusions: The processes used in both countries highlight ways to engage youth living with a life-limiting illness in conversations about advance care planning and how to develop culturally-appropriate clinical tools.

Origine : PubMed

Qualitative situational analysis of palliative care for adolescents with cancer and HIV in South Africa - healthcare worker perceptions

NGWENYA, Nothando ; AMBLER, Julia ; ARCHARY, Moherndran
BMJ Open, 25/01/2019, vol.9, n°1, p. 1-7

Document en ligne

Thème : Age de la vie, situations spécifiques liées à la fin de vie. Cote : eD05

RECHERCHE QUALITATIVE ; DEMARCHE PALLIATIVE ; ADOLESCENT ; CANCER ; INFECTION VIH ; AFRIQUE DU SUD ; ADOLESCENT ; JEUNE ADULTE

OBJECTIVES: The unmet palliative care need is intensified in resource-limited countries where there is inequitable access to healthcare and adolescents and young adults (AYA) fall between the cracks of paediatric and adult services. We aimed to examine palliative care for AYA with cancer and/or HIV in South Africa.
DESIGN: Individual and small group interviews using process mapping.
SETTING: Data were collected between November 2016 and March 2017 with staff from government hospitals, hospices and clinics from three provinces of South Africa.
PARTICIPANTS: Health and social care professionals (n=30) (eg, physicians, nurses, social workers, psychologists) from KwaZulu-Natal, Western Cape and Gauteng provinces.
METHODS: In this qualitative situational analysis study, participants were recruited to interviews and process mapping used to try and identify palliative care pathways of AYA with palliative care needs. We developed a thematic framework using a deductive approach to analyse the interview data.
RESULTS: Palliative care pathways were not easily identifiable, ambiguous and varied and participants reported on their experiences and perceptions of service provision. Participants expressed that resource challenges limited the service provision. A need for nurse prescribing of pain relief at community level was mentioned as AYA are reluctant to use hospitals and clinics. Lack of (1) palliative care education among professionals, (2) public awareness and (3) adolescent-specific care posed a challenge to service provision.
CONCLUSIONS: The changing burden of HIV and increase in cancer prevalence calls for integration of palliative care in mainstream health services. Despite good policies, the pragmatic aspect of training professionals will influence a change in practice. The main task will be to absorb palliative care philosophy and practice at all levels of care to avoid overburdening the care system and to integrate it in community care programmes.

Origine : PubMed

A nationwide study of young adults' perspectives on participation in bereavement research

UDO, Camilla ; LÖVGREN, Malin ; SVEEN, Josefin ; BYLUND-GRENKLO, Tove ; ALVARIZA, Anette ; KREICBERGS, Ulrika
JOURNAL OF PALLIATIVE MEDICINE, 20/03/2019, Pagination inconnue

Document en ligne

Thème : Recherche - Evaluation - Méthodologie.

JEUNE ADULTE ; RECHERCHE ; DEUIL ; PARTICIPATION ; SUEDE ; RECHERCHE QUALITATIVE ; PERSONNE ENDEUILLEE ; CANCER ; ANALYSE COMPARATIVE

BACKGROUND: Young adults represent a minority in research; they are often considered too young or too old for participation. There is sparse information, especially in bereavement research, regarding how this age group perceives research participation and what they consider beneficial or harmful.
AIM: To explore how parentally bereaved and nonbereaved young adults perceive research participation.
DESIGN: Qualitative analysis of free-text comments collected in a Swedish nation-wide survey.
SETTING/PARTICIPANTS: Parentally cancer-bereaved and nonbereaved young adults between 18 and 25 years old living in Sweden.
RESULTS: Five categories were identified from the free-text comments, three among the cancer-bereaved: (1) therapeutic to remember the deceased, (2) valuable to help others and improve care, and (3) short-term distressful-long-term beneficial, and two among the nonbereaved: (1) increased reflection and awareness about life, and (2) an opportunity to help others.
CONCLUSIONS: It is important to invite young adults to participate in bereavement research. The results suggest that potential harm is minimal and that participating in bereavement research can have a beneficial effect on young adults.

Origine : PubMed

Understanding care when cure is not likely for young adults who face cancer - a realist analysis of data from patients, families and healthcare professionals

KENTEN, Charlotte ; NGWENYA, Nothando ; GIBSON, Faith ; FLATLEY, Mary ; JONES, Louise ; PEARCE, Susie ; WONG, Geoff ; BLACK, Kath M. ; HAIG, Sue ; HOUGH, Rachael ; HURLOW, Adam ; STIRLING, L. Caroline ; TAYLOR, Rachel M. ; TOOKMAN, Adrian J. ; WHELAN, Jeremy
BMJ Open, 28/01/2019, vol.9, n°1, p. 1-14

Document en ligne

Thème : Soins. Cote : eD02.03.00

JEUNE ADULTE ; CANCER ; PHASE PALLIATIVE ; ANGLETERRE ; RECHERCHE QUALITATIVE

OBJECTIVES: To understand the experiences of young adults with cancer for whom cure is not likely, in particular what may be specific for people aged 16-40 years and how this might affect care.
DESIGN: We used data from multiple sources (semi-structured interviews with people with cancer, nominated family members and healthcare professionals, and workshops) informed by a preliminary programme theory: realist analysis of data within these themes enabled revision of our theory. A realist logic of analysis explored contexts and mechanisms affecting outcomes of care.
SETTING: Three cancer centres and associated palliative care services across England.
PARTICIPANTS: We aimed for a purposive sample of 45 people with cancer from two groups: those aged 16-24 years for whom there may be specialist cancer centres and those 16-40 years cared for through general adult services; each could nominate for interview one family member and one healthcare professional. We interviewed three people aged 16-24 years and 30 people 25-40 years diagnosed with cancer (carcinomas; blood cancers; sarcoma; central nervous system tumours) with a clinician-estimated prognosis of <12 months along with nominated family carers and healthcare professionals. 19 bereaved family members and 47 healthcare professionals participated in workshops.
RESULTS: Data were available from 69 interviews (33 people with cancer, 14 family carers, 22 healthcare professionals) and six workshops. Qualitative analysis revealed seven key themes: loss of control; maintenance of normal life; continuity of care; support for professionals; support for families; importance of language chosen by professionals; and financial concerns.
CONCLUSIONS: Current care towards end of life for young adults with cancer and their families does not meet needs and expectations. We identified challenges specific to those aged 16-40 years. The burden that care delivery imposes on healthcare professionals must be recognised. These findings can inform recommendations for measures to be incorporated into services.

Origine : PubMed

(1) 2 3 4 ... 10 > »

Confirmer la suppression du commentaire

Actions

Voir la sélection

Déplier les références

Replier les références

Envoyer par Mail

Imprimer la sélection

Imprimer les premières

Sauvegarder les premières

Envoyer les premières par mail

Affiner votre recherche

ADOLESCENT ADULTE CANCER DEMARCHE PALLIATIVE DEUIL ENFANT FIN VIE JEUNE ADULTE MORT PARENT PEDIATRIE PERSONNE ENDEUILLEE RECHERCHE QUALITATIVE SOIN SUICIDE

Type de document

Article

147

Brochure

Congrès

Contribution congrès

Extrait ouvrage

Mémoire ou Thèse

Monographie

N special periodique

Rapport

Vidéo