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1.
Psychooncology ; 33(7): e6374, 2024 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-38977423

RESUMEN

OBJECTIVE: To deliver and evaluate an educational intervention to equip health and social care professionals (professionals) on how best to support parents at end of life with cancer concerning their dependent children (<18). METHODS: An evidence-based and theory-driven face-to-face educational intervention was developed and evaluated using three levels of Kirkpatrick's Model of Evaluation. Pre-test, post-test surveys were completed immediately before-and-after the intervention using a validated self-efficacy scale and single-item questions evaluating perceived usefulness and relevance (levels one/two). Qualitative interviews ≥ 3-months post-intervention explored if, and how the intervention impacted professionals' practice (level three). Fourteen sessions were delivered at oncology settings to 347 professionals between 2021 and 2023. Two hundred seventy four professionals completed the pre-test survey, with 239 completing the post-test survey. Fourteen professionals were interviewed between three-and 19-months post-intervention. RESULTS: Quantitative findings demonstrated a statistically significant improvement in self-efficacy post-educational intervention (p < 0.001). Qualitative data highlighted professionals gained new approaches to progress end of life conversations with parents, despite some familial resistance to sharing the reality of the situation with children. Positive intervention content shaping clinical practice included the bereaved parent's lived experience, communication framework and roleplay videos. Some professionals considered a booster session and opportunities to practice conversations necessary to further consolidate learning into practice. CONCLUSIONS: Evidence and theory-driven education can positively impact professionals' provision of family-centred cancer care. Future studies should explore the impact of this educational intervention on familial outcomes. Alongside a sustainable delivery of this intervention, advanced communication skills programmes should incorporate parent-child end of life conversations.


Asunto(s)
Personal de Salud , Neoplasias , Padres , Cuidado Terminal , Humanos , Neoplasias/psicología , Neoplasias/terapia , Personal de Salud/educación , Personal de Salud/psicología , Padres/psicología , Padres/educación , Cuidado Terminal/psicología , Masculino , Femenino , Niño , Adulto , Autoeficacia , Investigación Cualitativa , Encuestas y Cuestionarios , Comunicación , Relaciones Profesional-Familia
2.
BMC Psychiatry ; 23(1): 78, 2023 01 27.
Artículo en Inglés | MEDLINE | ID: mdl-36707793

RESUMEN

BACKGROUND: Given that common mental disorders are one of the leading causes of disease burden worldwide, it is likely that many children are growing up with a parent or other adult within their family who has anxiety or depression. Parents with a mental illness may not consider it appropriate to discuss their illness with their child, and consequently an absence of communication may lead to stigmatization, shame, misunderstanding their parents' symptoms, and even blaming themselves. There is a scarcity of research exploring the experiences and perceptions of healthcare professionals about communication with children of parents with mental illness in low-resource and African contexts. METHODS: A qualitative study using semi-structured interviews with healthcare professionals (n = 15) was conducted within the Bushbuckridge sub-district of Mpumalanga Province, South Africa. Data were analysed using Thematic Analysis. RESULTS: Four themes were identified relating to the obstacles around communication with children. These included: (1) finding an appropriate language to describe mental illness, as well as the prevailing cultural explanations of mental illness (2) the stigma associated with mental illness (3) the perceived role of children in society and (4) mental health services and staff skills. Two themes that addressed facilitators of communication about parental mental illness were identified: (1) the potential to increase mental health awareness amongst the broader community through social media, the internet, and general psychoeducation (2) healthcare professionals' concerns for the wellbeing and future mental health of patients' children, as well as their hopes for increased mental health awareness amongst future generations. CONCLUSIONS: This study provides insight into healthcare professionals' attitudes and perceptions about talking to patients and families within their community about mental illness. The results provide recommendations about possible ways to promote sharing information about a parent's mental illness with children at an individual and community level. Future research should focus on the collaborative creation of culturally sensitive psychoeducational resources and evidence-based guidelines. This must be supported by systemic and organisational change in order for professionals to successfully facilitate conversations with patients who are parents, and their children.


Asunto(s)
Trastornos Mentales , Padres , Adulto , Humanos , Niño , Sudáfrica , Padres/psicología , Trastornos Mentales/psicología , Salud Mental , Comunicación , Investigación Cualitativa
3.
BMC Palliat Care ; 22(1): 85, 2023 Jul 01.
Artículo en Inglés | MEDLINE | ID: mdl-37393250

RESUMEN

BACKGROUND: Clinical trial participation for patients with non-curative cancer is unlikely to present personal clinical benefit, which raises the bar for informed consent. Previous work demonstrates that decisions by patients in this setting are made within a 'trusting relationship' with healthcare professionals. The current study aimed to further illuminate the nuances of this relationship from both the patients' and healthcare professionals' perspectives. METHODS: Face-to-face interviews using a grounded theory approach were conducted at a regional Cancer Centre in the United Kingdom. Interviews were performed with 34 participants (patients with non-curative cancer, number (n) = 16; healthcare professionals involved in the consent process, n = 18). Data analysis was performed after each interview using open, selective, and theoretical coding. RESULTS: The 'Trusting relationship' with healthcare professionals underpinned patient motivation to participate, with many patients 'feeling lucky' and articulating an unrealistic hope that a clinical trial could provide a cure. Patients adopted the attitude of 'What the doctor thinks is best' and placed significant trust in healthcare professionals, focusing on mainly positive aspects of the information provided. Healthcare professionals recognised that trial information was not received neutrally by patients, with some expressing concerns that patients would consent to 'please' them. This raises the question: Within the trusting relationship between patients and healthcare professionals, 'Is it possible to provide balanced information?'. The theoretical model identified in this study is central to understanding how the trusting professional-patient relationship influences the decision-making process. CONCLUSION: The significant trust placed on healthcare professionals by patients presented an obstacle to delivering balanced trial information, with patients sometimes participating to please the 'experts'. In this high-stakes scenario, it may be pertinent to consider strategies, such as separation of the clinician-researcher roles and enabling patients to articulate their care priorities and preferences within the informed consent process. Further research is needed to expand on these ethical conundrums and ensure patient choice and autonomy in trial participation are prioritised, particularly when the patient's life is limited.


Asunto(s)
Neoplasias , Confianza , Humanos , Teoría Fundamentada , Personal de Salud , Consentimiento Informado , Relaciones Profesional-Paciente , Ensayos Clínicos como Asunto
4.
Psychooncology ; 31(10): 1651-1659, 2022 10.
Artículo en Inglés | MEDLINE | ID: mdl-35949162

RESUMEN

OBJECTIVE: It is not clear how the bereaved parent navigates life with the children after a co-parent has died. The objective of this study is to explore bereaved parents' experience of managing life when a co-parent of dependent children has died with cancer. METHODS: Twenty-one in-depth interviews were conducted with bereaved parents when a co-parent died with cancer. Data were analysed thematically. RESULTS: Bereaved parents highlighted how their children was their key focus after the death of a co-parent with cancer, as they effortfully strived to be a 'perfect parent'. While some bereaved parents struggled to adapt to the role as a sole parent, others described the importance of maximising social networks to help with the practical aspects of parenting. However, most bereaved parents described intense feelings of loneliness as they navigated parenting alone. To help navigate this post-bereavement period, parents considered it important for their children to openly talk about the deceased parent. Also, meeting others who have experienced similar situations was helpful for the bereaved parent and children, providing hope for the future. Results are discussed under two themes: (1) adapting to life without the parent, and (2) a desire to keep the memory alive of the parent that died with cancer. CONCLUSIONS: Bereaved parents should be encouraged to practice self-care when a co-parent has died from cancer so they can appropriately meet the needs of their children. Bereaved parents should be reassured that showing emotion in front of the children is helpful and could facilitate better grief experiences for the whole family.


Asunto(s)
Aflicción , Neoplasias , Niño , Pesar , Humanos , Padres/psicología
5.
Palliat Med ; 36(10): 1483-1492, 2022 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-36081273

RESUMEN

BACKGROUND: Loneliness is a prevalent societal issue and can impact on a person's physical and mental health. It is unclear how loneliness impacts on end of life experiences or how such feelings can be alleviated. AIM: To explore the perceived prevalence, impact and possible solutions to loneliness among people who are terminally ill and their carers in Northern Ireland through the lens of health and social care professionals. DESIGN: An explanatory multi-method study. SETTING/PARTICIPANTS: An online survey (n = 68, response rate 30%) followed by three online focus groups with palliative and end of life care health and social care professionals (n = 14). Data were analysed using descriptive statistics and thematic analysis. RESULTS: Loneliness was perceived by professionals as highly prevalent for people with a terminal illness (92.6%) and their carers (86.8%). Loneliness was considered a taboo subject and impacts on symptoms including pain and breathlessness and overall wellbeing at end of life. Social support was viewed as central towards alleviating feelings of loneliness and promoting connectedness at end of life. Four themes were identified: (1) the stigma of loneliness, (2) COVID-19: The loneliness pandemic (3) impact of loneliness across physical and mental health domains and (4) the power of social networks. CONCLUSION: There is a need for greater investment for social support initiatives to tackle experiences of loneliness at end of life. These services must be co-produced with people impacted by terminal illness to ensure they meet the needs of this population.


Asunto(s)
COVID-19 , Cuidado Terminal , Humanos , Soledad/psicología , Enfermo Terminal , Cuidado Terminal/psicología , Muerte
6.
BMC Public Health ; 22(1): 523, 2022 03 17.
Artículo en Inglés | MEDLINE | ID: mdl-35300654

RESUMEN

Young parents (aged 16-24 years) in the perinatal period are at an increased risk of poor mental health especially during the COVID-19 pandemic, due to multiple risk factors including social and economic instability. COVID-19 related restrictions had profound implications for the delivery of perinatal care services and other support structures for young parents. Investigating young parents' experiences during the pandemic, including their perceived challenges and needs, is important to inform good practice and provide appropriate support for young parents.Qualitative interviews were conducted with young parents (n = 21) during the COVID-19 pandemic in the United Kingdom from February - May 2021. Data were analysed using thematic analysis.Three key themes were identified to describe parents' experiences during the COVID-19 pandemic. Parents reported specific COVID-19 related anxieties and stressors, including worries around contracting the virus and increased feelings of distress due to uncertainty created by the implications of the pandemic. Parents described feeling alone both at home and during antenatal appointments and highlighted the absence of social support as a major area of concern. Parents also felt their perinatal care had been disrupted by the pandemic and experienced difficulties accessing care online or over the phone.This study highlights the potential impact of the COVID-19 pandemic on young parents, including their mental wellbeing and the perinatal support they were able to access. Insights from this study can inform the support and services offered to families going forward. Specifically, the findings emphasise the importance of (a) supporting both parents during perinatal appointments, (b) providing parents with mental health support early on and (c) finding ways to facilitate communication pathways between professionals and parents.


Asunto(s)
COVID-19 , Adolescente , Adulto , COVID-19/epidemiología , Femenino , Humanos , Pandemias , Responsabilidad Parental , Padres/psicología , Embarazo , Reino Unido/epidemiología , Adulto Joven
7.
BMC Health Serv Res ; 22(1): 1026, 2022 Aug 12.
Artículo en Inglés | MEDLINE | ID: mdl-35962401

RESUMEN

BACKGROUND: Perinatal healthcare professionals (PHCPs) provide essential support to all parents in the perinatal period, including young parents aged 16-24, who are at an increased risk of morbidity and mortality. Little is known about the impact of COVID-19 restrictions on the provision of perinatal services, and on perinatal healthcare professionals, caring for young parents in the UK. METHODS: A UK based qualitative study using semi-structured interviews with perinatal healthcare professionals (n = 17). Data were analysed using thematic analysis. RESULTS: Two themes were identified describing perinatal healthcare professionals' perceptions of providing care to young parents during the pandemic. Perinatal healthcare professionals perceived that young parents' needs were amplified by the pandemic and that pandemic-related changes to the service, such as the use of telemedicine to replace face-to-face interactions, did not manage to successfully mitigate the increased feelings of anxiety and isolation experienced by young parents. Concerns were raised by perinatal healthcare professionals that these changes reduced young parent's access to vital support for themselves and their child and may contribute to exacerbating pre-existing inequalities. CONCLUSIONS: This study provides insight into the impact of the COVID-19 pandemic on the provision of perinatal care to young parents. Perinatal mental health professionals felt these negative impacts could be overcome by using a blended approach of technology and face-to-face interactions allowing regular contact with young parents and facilitating the exchange of vital information, while maintaining access to opportunities for social interactions with other parents. Findings from this study could be used to future-proof services against further COVID-19 restrictions.


Asunto(s)
COVID-19 , Personal de Salud , Atención Perinatal , COVID-19/epidemiología , Atención a la Salud , Femenino , Personal de Salud/psicología , Humanos , Pandemias , Embarazo , Investigación Cualitativa
8.
Death Stud ; 46(4): 969-978, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-32678718

RESUMEN

When a parent of dependent children dies, families are often unsure if and how children could be part of the immediate bereavement period. Children excluded can be more susceptive to negative outcomes. In-depth interviews explored funeral directors' (N = 23) experiences of providing a service to families in the immediate bereavement period, when a parent dies from cancer. Findings highlighted funeral directors can have an important role in guiding families through the distressing immediate bereavement period. Recommendations are discussed surrounding a pastoral role of the funeral director in the immediate bereavement period.


Asunto(s)
Aflicción , Neoplasias , Niño , Muerte , Ritos Fúnebres , Pesar , Humanos , Padres
9.
Psychooncology ; 30(3): 331-339, 2021 03.
Artículo en Inglés | MEDLINE | ID: mdl-33091180

RESUMEN

OBJECTIVE: Parents often feel ill-equipped to prepare their dependent children (<18 years old) for the death of a parent, necessitating support from professionals. The aim of this study is to explore health and social care professionals' (HSCPs) experiences and perceptions of providing supportive care to parents regarding their children, when a parent is dying from cancer. METHODS: Semi-structured qualitative interviews were conducted with 32 HSCPs, including nurses, allied health professionals, social workers and doctors from specialist or generalist roles, across acute or community sectors. RESULTS: HSCPs' perceptions of the challenges faced by many families when a parent is dying from cancer included: parental uncertainties surrounding if, when and how to tell the children that their parent was dying, the demands of managing everyday life, and preparing the children for the actual death of their parent. Many HSCPs felt ill-equipped to provide care to parents at end of life concerning their children. The results are discussed under two themes: (1) hurdles to overcome when providing psychological support to parents at end of life and (2) support needs of families for the challenging journey ahead. CONCLUSIONS: There appears to be a disparity between HSCPs' awareness of the needs of families when a parent is dying and what is provided in practice. HSCPs can have a supportive role and help equip parents, as they prepare their children for the death of their parent. Appropriate training and guideline provision could promote this important aspect of end of life care into practice.


Asunto(s)
Hijo de Padres Discapacitados/psicología , Neoplasias/psicología , Padres/psicología , Sistemas de Apoyo Psicosocial , Cuidado Terminal/psicología , Adolescente , Adulto , Niño , Femenino , Personal de Salud/psicología , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Neoplasias/mortalidad , Percepción , Investigación Cualitativa , Apoyo Social
10.
Support Care Cancer ; 29(12): 7695-7702, 2021 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-34143326

RESUMEN

PURPOSE: Preparation for end of life is one of the greatest challenges faced by parents with cancer who have dependent children (< 18 years old), with requirement for support from professionals. The aim of this study is to explore how parents can be best supported in relation to their children, when a parent is at end of life from cancer. METHODS: This is an interpretive qualitative study, using 79 semi-structured interviews with parents at end of life (n3), bereaved parents (n21), health and social care professionals (HSCPs) (n32) and funeral directors (n23). Data were analysed thematically and triangulated. RESULTS: Parents are central to preparing their children for the death of a parent. Striving for everyday ordinariness, maximising social networks, maintaining hope and making preparations for the future are helpful for families when a parent is at end of life. Most HSCPs were unaware of the challenges faced by parents at end of life, and psychosocial support was often left outside the caring realm. As a result, funeral directors noted complexities faced by the families after the death. Results are discussed under four themes: (1) communication with the children as a process, (2) coping throughout the unfolding end of life experience, (3) tension and complexities at end of life and (4) preparing for the future. CONCLUSIONS: Parents should be reassured that by involving the children early in the end of life experience when the ill-parent is 'well enough' to parent enables them to be actively involved in supporting their child through one of the greatest life changing event. A number of recommendations are discussed for professionals.


Asunto(s)
Neoplasias , Padres , Adolescente , Niño , Muerte , Humanos , Sistemas de Apoyo Psicosocial , Investigación Cualitativa
11.
Palliat Med ; 35(5): 933-942, 2021 05.
Artículo en Inglés | MEDLINE | ID: mdl-33765868

RESUMEN

BACKGROUND: When a parent of dependent children (<18 years old) is at end of life from cancer, this has a profound impact on the family. Children less prepared for the death of a parent are more susceptive to poorer psychosocial adjustment in later life. There is a lack of understanding from the literature surrounding what support parents require, and how they navigate this end of life experience. AIM: To explore bereaved parents' experience and needs for families when a parent is at end of life from cancer with dependent children. DESIGN: In-depth, semi-structured qualitative interviews were conducted with 21 bereaved mothers and fathers, identified from the general public, a family support service and hospice. Data were analysed thematically. RESULTS: Parents often live in 'parallel worlds' throughout the end of life period. In one world, 'living in the moment', cherishing the ordinariness of family life, remaining hopeful treatment will prolong life, whilst adapting as the illness unfolds. The other world presents as 'intermitted glimpses that death is approaching', shadowed with painful emotional concerns surrounding their children and the future. At the end, death rapidly approaches, characterised as suddenly 'falling off the cliff'; placing significant demands on the well-parent. CONCLUSIONS: Amidst challenges, clinicians should provide parents with clear information surrounding a poor prognosis, so families can plan and prepare for parental death. There is a need for healthcare professionals to engage, encourage and equip parents, as they prepare their children throughout the end of life experience for the inevitable death of a parent.


Asunto(s)
Neoplasias , Padres , Adolescente , Niño , Muerte , Humanos , Relaciones Profesional-Familia , Investigación Cualitativa
12.
Palliat Med ; 35(5): 843-851, 2021 05.
Artículo en Inglés | MEDLINE | ID: mdl-33784908

RESUMEN

BACKGROUND: Meeting the needs of relatives when a family member is dying can help facilitate better psychological adjustment in their grief. However, end of life experiences for families are likely to have been deleteriously impacted by the COVID-19 crisis. Understanding how families' needs can be met during a global pandemic will have current/future relevance for clinical practice and policy. AIM: To explore relatives' experiences and needs when a family member was dying during the COVID-19 pandemic. DESIGN: Interpretative qualitative study using semi-structured interviews. Data were analysed thematically. SETTING/PARTICIPANTS: A total of 19 relatives whose family member died during the COVID-19 pandemic in the United Kingdom. RESULTS: In the absence of direct physical contact, it was important for families to have a clear understanding of their family member's condition and declining health, stay connected with them in the final weeks/days of life and have the opportunity for a final contact before they died. Health and social care professionals were instrumental to providing these aspects of care, but faced practical challenges in achieving these. Results are presented within three themes: (1) entering into the final weeks and days of life during a pandemic, (2) navigating the final weeks of life during a pandemic and (3) the importance of 'saying goodbye' in a pandemic. CONCLUSIONS: Health and social care professionals can have an important role in mitigating the absence of relatives' visits at end of life during a pandemic. Strategies include prioritising virtual connectedness and creating alternative opportunities for relatives to 'say goodbye'.


Asunto(s)
COVID-19 , Pandemias , Muerte , Familia , Humanos , Cuidados Paliativos , Investigación Cualitativa , SARS-CoV-2 , Reino Unido
13.
Palliat Med ; 35(7): 1249-1257, 2021 07.
Artículo en Inglés | MEDLINE | ID: mdl-34006159

RESUMEN

BACKGROUND: Health and social care professionals' ability to address the needs of patients and their relatives at end of life is likely to have been impacted by the COVID-19 pandemic. AIM: To explore health and social care professionals' experiences of providing end of life care during the COVID-19 pandemic to help inform current/future clinical practice and policy. DESIGN: A qualitative interview study. Data were analysed using thematic analysis. SETTING/PARTICIPANTS: Sixteen health and social care professionals working across a range of clinical settings in supporting dying patients during the first wave (March-June 2020) of the COVID-19 pandemic in the United Kingdom. RESULTS: Participants reported emotional and practical challenges to providing end of life care during the pandemic, including increases in patient numbers, reduced staffing levels and relying on virtual platforms for sensitive, emotive conversations with relatives. Participants were central to promoting connections between patients and their families at end of life and creating opportunities for a final contact before the death. However, the provision of support varied as a consequence of the pressures of the pandemic. Results are discussed under two themes: (1) challenges and facilitators to providing end of life care, and (2) support needs of relatives when a family member was dying during the COVID-19 pandemic. CONCLUSION: There is a need for flexible visiting arrangements at end of life during a pandemic. A systems-level approach is necessary to promote the wellbeing of health and social care professionals providing end of life care during and after a pandemic.


Asunto(s)
COVID-19 , Cuidado Terminal , Personal de Salud , Humanos , Pandemias , Investigación Cualitativa , SARS-CoV-2 , Apoyo Social , Reino Unido
14.
Palliat Med ; 33(8): 1017-1044, 2019 09.
Artículo en Inglés | MEDLINE | ID: mdl-31244381

RESUMEN

BACKGROUND: Preparing children for the death of a parent is challenging. Parents are often uncertain if and how to communicate and support their children. Many parents feel it is protecting their children by not telling them about the prognosis. Children less prepared for parental death from a terminal illness are more susceptive to later adversities. To facilitate coping and moderate for such adversities, there is a need to gain insight and understand the experience and challenges confronted by families. AIM: This review synthesised evidence on the experiences of parents and children when a parent is at end of life to discern their challenges, support needs and factors that facilitated good practice. DESIGN: Mixed-methods systematic review. DATA SOURCES: Four electronic databases (CINAHL, PubMed, PsycINFO and Ovid MEDLINE) using MeSH terms and word searches in October 2018. Studies were not limited by year of publication, language or country. Grey literature searches were also completed on Google Scholar and OpenGrey. RESULTS: In all, 7829 records were identified; 27 qualitative and 0 quantitative studies met the inclusion criteria. Eight descriptive themes were identified, further categorised into two broad themes: (1) barriers and facilitators in sharing the news that a parent is dying and (2) strategies to manage the changing situation. CONCLUSION: Lack of understanding in relation to the parent's prognosis, denial and feeling ill-equipped were suggested as barriers for parents to share the news with their children. Engagement with social networks, including extended family relatives and peers, and maintaining routines such as attending school were suggested supportive by parents and children. Findings are limited primarily to White, middle-class two-parent families. A number of areas for future research are identified.


Asunto(s)
Hijo de Padres Discapacitados/psicología , Relaciones Padres-Hijo , Sistemas de Apoyo Psicosocial , Cuidado Terminal/psicología , Adolescente , Adulto , Niño , Femenino , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/patología , Padres , Adulto Joven
15.
Semin Oncol Nurs ; 39(5): 151474, 2023 10.
Artículo en Inglés | MEDLINE | ID: mdl-37481410

RESUMEN

OBJECTIVES: This systematic review aimed to determine the content, mode of delivery, assessment, and outcomes of educational interventions to equip health and social care professionals when delivering end of life supportive care for parents dying with cancer who have dependent children. DATA SOURCES: A mixed-methods systematic review was undertaken. Six electronic database were searched from their inception until September 2023 (Medline OVID, CINAHL, EMBASE, PsycINFO, Web of Science, and ERIC), supplemented by citation chaining, grey literature searches using Google Advanced Search and relevant professional bodies. Quality assessment was conducted independently by two researchers on the included studies. A convergent integrated approach was utilised for data synthesis. CONCLUSION: The review identified two educational interventions; highlighting a dearth of training opportunities to equip health and social care professionals to provide supportive care to families when a parent is at end of life with cancer. Despite health and social care professionals reported need and desire for upskilling in this area of clinical practice, there is a severe lack of evidence-based educational interventions. It is imperative that effective educational interventions are made accessible to professionals. IMPLICATIONS FOR NURSING PRACTICE: There is an imminent need for robust educational interventions to be developed, as health and social care professionals often lack the knowledge, skills and confidence on how best to support families when a parent of dependent children is at end of life. Health and social care professionals engagement with high-quality, evidence-based and theory-driven educational interventions has the potential to impact professionals' provision of family-centred cancer care at end of life. This could lead to better mental and physical outcomes for the whole family at end of life and in bereavement.


Asunto(s)
Neoplasias , Cuidado Terminal , Humanos , Niño , Padres , Apoyo Social , Muerte , Neoplasias/terapia
16.
J Cancer Surviv ; 2023 Mar 25.
Artículo en Inglés | MEDLINE | ID: mdl-36964295

RESUMEN

PURPOSE: This systematic review investigated qualitative and quantitative studies exploring patients and healthcare professionals' (HCP) experience of nutrition care throughout the cancer journey. METHODS: Five databases were systematically searched for studies reporting on patient and healthcare professionals' experience of nutrition advice. RESULTS: Fifteen studies including 374 patients and 471 healthcare professionals were included. Findings indicate that patients desire more specific nutrition advice supported by members of the multidisciplinary team and delivered in appropriate and understandable language. Healthcare professionals have highlighted a lack of time, funding, dietetic roles, and knowledge as barriers to integrating nutrition as a standard part of cancer care. Five themes were identified (current provision of nutrition advice, optimal provision of nutrition advice, tension between patient values and nutritional or HCP priorities, providing evidence-based nutrition care, and practical barriers to nutrition advice provision). CONCLUSIONS: Further work is essential to better understand and address identified barriers and improve the provision of nutrition advice to this population. IMPLICATIONS FOR CANCER SURVIVORS: Findings from this review will guide the delivery of nutrition advice for cancer survivors.

17.
BMJ Open ; 13(1): e064741, 2023 01 27.
Artículo en Inglés | MEDLINE | ID: mdl-36707115

RESUMEN

OBJECTIVES: This study aimed to explore how published communication frameworks could be amended to ensure applicability and cultural appropriateness for professionals to support family-centred conversations by investigating' healthcare professionals' (1) experiences of providing support to families when a caregiver or a dependent child (<18 years old) has a life-threatening condition, (2) perceived challenges for caregivers and healthcare professionals in communicating with children about illness, (3) perceptions of how clinicians could be equipped to facilitate conversations between caregivers and children about an adult or the child's own life-threatening condition and (4) suggestions for amendments to previously published guidelines to ensure cultural relevance in South Africa and Uganda. DESIGN: A qualitative study involving two 2-day workshops with embedded focus group discussions, break out rooms and consensus discussions. SETTING: Health and social care and third sector organisations in South Africa and Uganda. PARTICIPANTS: Thirty-two professionals providing care to families affected by life-threatening conditions in South Africa or Uganda who were aged 18 years or older and able to converse in English. RESULTS: Participants identified obstacles to having conversations with caregivers about children and to telling children about serious illness during consultations. These included patients' beliefs about illness, medicine and death, language barriers between families and the healthcare team, and emotional and practical challenges for professionals in having these conversations. Culturally appropriate adaptations were made to previously published communication frameworks for professionals to support family-centred conversations. CONCLUSIONS: Culturally sensitive communication frameworks could help healthcare professionals to talk with families about what children need to know when they or a caregiver have a serious illness. More broadly, effective communication could be facilitated by promoting healthcare professionals' and communities' understanding of the benefits of telling children about illness within the family. Together these strategies may mitigate the psychological impact of global disease on children and their families.


Asunto(s)
Comunicación , Personal de Salud , Adulto , Humanos , Niño , Adolescente , Sudáfrica , Uganda , Personal de Salud/psicología , Investigación Cualitativa , Atención a la Salud
18.
PLoS One ; 17(11): e0278124, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-36441706

RESUMEN

This study explored healthcare professionals' perceived role in talking to adult patients about sharing their diagnosis with children. Semi-structured interviews were conducted to explore healthcare professionals' beliefs about how families could and should be supported when a parent has a serious illness. Participants were 24 healthcare professionals working in primary, secondary and tertiary NHS services in the UK with adult patients diagnosed with a serious illness. Data were analysed thematically. Many healthcare professionals reported systems to identify patients' family relationships, but this information was rarely used to initiate conversations on what and how to talk to children. It was frequently assumed that someone else in the healthcare system was supporting patients with family communication. Others reported there were more urgent priorities for the consultation or considered that talking to children was a private family matter. However, several professionals did undertake these conversations, viewing this as a central part of their role. Some healthcare professionals felt they had inadequate skills or confidence to raise talking to children with their patients and indicated a need for specific training to address this. The results highlight the importance of systematically documenting patients' relationships with children so that this information can be used to inform ongoing discussions with the healthcare team about what children have been told. Patients consistently report wanting support about how to talk to children and the benefits of effective communication are well documented. Dissemination of this evidence could encourage professionals across all specialities to include family-centred communication in routine patient care. Training resources are needed so that staff feel empowered and equipped to raise these sensitive subjects with their patients.


Asunto(s)
Comunicación , Padres , Adulto , Niño , Humanos , Investigación Cualitativa , Personal de Salud , Atención a la Salud
19.
Patient Educ Couns ; 105(3): 775-780, 2022 03.
Artículo en Inglés | MEDLINE | ID: mdl-34294491

RESUMEN

OBJECTIVE: Parents with incurable cancer are often uncertain how, what and when is best to tell their children about their poor prognosis and prepare them for the actual death. Despite parents' desire and need for support from health and social care professionals (HSCPs), this is often lacking. HSCPs feel ill-equipped, identifying a need for an evidence-based communication framework for professionals to use in practice, promoting parent-child communication at end of life. METHODS: A systematic process, involving a systematic review and data from 76 semi-structured, face-to-face qualitative interviews from three participant populations, including HSCPs (n = 32), bereaved parents (n = 21) and funeral directors (n = 23) were triangulated. This informed the development of the 'Talking, Telling and Sharing': End of life framework (6 W Grid), guided by an expert group. RESULTS: An evidence-based, theory-driven communication framework has been developed. This provides a mechanism for HSCPs to proactively and directly engage with patients, addressing their parent-child communication concerns. CONCLUSION: Clear, evidence-based communication frameworks can enhance patient-provider communication in practice, particularly around sensitive and complex issue. PRACTICE IMPLICATIONS: There is a need for HSCPs to encourage parents to start these difficult conversations soon after receiving the poor prognosis, to avoid crisis management when the ill-parent is actively dying or throughout the immediate bereavement period.


Asunto(s)
Aflicción , Neoplasias , Comunicación , Humanos , Neoplasias/terapia , Relaciones Padres-Hijo , Padres
20.
Am J Hosp Palliat Care ; 39(7): 806-811, 2022 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-34538106

RESUMEN

PURPOSE: Health and social care professionals report it challenging to have conversations with families when an important adult in the life of a child is at end of life, often feeling this aspect of care is the responsibility of other colleagues. This study aimed to understand professionals' perceived role in family-centered conversations as part of routine care at end of life, and how to promote this element of care in clinical practice. METHODS: An audit was completed with 116 professionals who work in palliative care including doctors and nurses that attended a 2-day virtual congress. RESULTS: Professionals (73.2%) felt confident about starting a conversation with adult patients at end of life about important children. However, enquiring about relationships with children was largely dependent on the age of the patient. 64.7% of respondents reported signposting families to websites and services that provide family support. Most professionals (76.7%) wanted training to equip them with the skills and confidence to having family-centered conversations at end of life, with videos demonstrating how to provide these elements of care the most preferred option. CONCLUSIONS: Short training resources should be developed to equip professionals with the necessary skills toward having conversations about children with patients and relatives in clinical appointments. There is a need for professionals to ask every patient about important relationships with children.


Asunto(s)
Comunicación , Cuidado Terminal , Adulto , Niño , Muerte , Familia , Humanos , Cuidados Paliativos/métodos , Investigación Cualitativa , Apoyo Social , Cuidado Terminal/métodos
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