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1.
Death Stud ; : 1-11, 2024 May 31.
Artículo en Inglés | MEDLINE | ID: mdl-38822452

RESUMEN

While grandparents are often a valuable resource in home-based pediatric end-of-life care, they may also experience psychological consequences when faced with their grandchild's illness and death. In this qualitative study, we performed semi-structured interviews with seven bereaved grandparents of four children with cancer who received home-based end-of-life care and died at home at age <18. Through qualitative content analysis we identified the overarching theme: "Navigating complex and unclear roles to support the family" and five themes: (1) Providing comfort and support; (2) Balancing and adapting involvement; (3) Worrying silently; (4) Managing difficult emotions; and (5) Calling for support and understanding. The findings underline the often conflicting roles that grandparents undertake of providing support while respecting parents' autonomy and putting aside their own emotional reactions. Involving grandparents in pediatric end-of-life care may enhance family resources, but should also consider grandparents' perspectives and need for support.

2.
BMC Health Serv Res ; 23(1): 664, 2023 Jun 20.
Artículo en Inglés | MEDLINE | ID: mdl-37340397

RESUMEN

BACKGROUND: Families of children and adolescents with cancer strive to maintain routines and normalcy during the child's treatment trajectory that requires frequent hospital visits. Intravenous chemotherapy at home can reduce time spent on the frequent hospital visits and mitigate disruption in daily life. Studies on home chemotherapy for children and adolescents with cancer are limited, as is knowledge of family and health care professionals' needs, and knowledge required to inform adaptation or replication of interventions in other settings. The aim of this study was to develop and describe an evidence-based home chemotherapy intervention that is feasible and safe for children and adolescents and suitable for future feasibility testing. METHODS: The Medical Research Council's guidance for developing complex interventions in health care and the framework of action developed by O'Cathain et al. was used as theoretical frameworks to structure the development process. A literature search, an ethnographic study, and interviews with clinical nurse specialists from adult cancer departments formed the evidence base. Educational learning theory to support and understand the intervention was identified. Stakeholder perspectives were explored in workshops with health care professionals and parent-adolescent interviews. Reporting was qualified using the GUIDED checklist. RESULTS: A stepwise educational program to teach parents how to administer low-dose chemotherapy (Ara-C) to their child at home and a simple and safe administration procedure were developed. Key uncertainties were identified, including barriers and facilitators impacting future testing, evaluation, and implementation. Causal assumptions and reasoning for how the intervention leads to short-term outcomes and long-term impact were clarified in a logic model. CONCLUSIONS: The iterative and flexible framework allowed for integration of existing evidence and new data and was successfully applied to the development process. The detailed report on the development process of the home chemotherapy intervention can enhance adaptation or replication of the intervention to other settings and thereby mitigate family disruption and stress of frequent hospital visits for these treatments. The study has informed the next phase of the research project that aims to test the home chemotherapy intervention in a prospective single-arm feasibility study. TRIAL REGISTRATION: ClinicalTrials.gov ID: NCT05372536.


Asunto(s)
Neoplasias , Padres , Adulto , Niño , Humanos , Adolescente , Estudios Prospectivos , Personal de Salud/educación , Aprendizaje , Neoplasias/tratamiento farmacológico
3.
Front Rehabil Sci ; 4: 1099516, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37180572

RESUMEN

Background: Studies report that it can be challenging to assess and treat side-effects and symptoms among children who have impairments and difficulties in expressing their needs. Children with Down syndrome have an increased vulnerability and an increased risk for contracting leukaemia. There is sparse knowledge about the parental experience of how treatment and side-effects affect children with Down syndrome with leukaemia, as well as the role of participation during treatment. Purpose: This study aimed to explore the perceptions of parents of children with Down syndrome and leukaemia regarding their child's treatment, side effects and participation during hospital care. Methods: A qualitative study design was used, and interviews were conducted with a semi-structured interview-guide. Fourteen parents of 10 children with Down syndrome and acute lymphoblastic leukaemia from Sweden and Denmark, 1-18 years of age, participated. All children had completed therapy or had a few months left before the end of treatment. Data was analysed according to qualitative content analysis. Results: Four sub-themes were identified: (1) Continuously dealing with the child's potential susceptibility; (2) Confidence and worries regarding decisions related to treatment regulation; (3) Challenges in communication, interpretation, and participation; and (4) Facilitating participation by adapting to the child's behavioural and cognitive needs. The sub-themes were bound together in an overarching theme, which expressed the core perception "Being the child's spokesperson to facilitate the child's participation during treatment". The parents expressed this role as self-evident to facilitate communication regarding the needs of the child, but also regarding how the cytotoxic treatment affected the vulnerable child. Parents conveyed the struggle to ensure the child's right to receive optimal treatment. Conclusion: The study results highlight parental challenges regarding childhood disabilities and severe health conditions, as well as communication and ethical aspects regarding to act in the best interests of the child. Parents played a vital role in interpreting their child with Down syndrome. Involving parents during treatment enables a more accurate interpretation of symptoms and eases communication and participation. Still, the results raise questions regarding issues related to building trust in healthcare professionals in a context where medical, psychosocial and ethical dilemmas are present.

4.
JMIR Nurs ; 6: e46673, 2023 May 18.
Artículo en Inglés | MEDLINE | ID: mdl-37200076

RESUMEN

BACKGROUND: Person-centered care responsive to individual preferences, needs, and values is recognized as an important aspect of high-quality health care, and patient empowerment is increasingly viewed as a central core value of person-centered care. Web-based interventions aimed at empowerment report a beneficial effect on patient empowerment and physical activity; however, there is limited information available on barriers, facilitators, and user experiences. A recent review of the effect of digital self-management support tools suggests a beneficial effect on the quality of life in patients with cancer. On the basis of an overall philosophy of empowerment, guided self-determination is a person-centered intervention that uses preparatory reflection sheets to help achieve focused communication between patients and nurses. The intervention was adapted into a digital version called digitally assisted guided self-determination (DA-GSD) hosted by the Sundhed DK website that can be delivered face-to-face, via video, or by the combination of the 2 methods. OBJECTIVE: We aimed to investigate the experiences of nurses, nurse managers, and patients of using DA-GSD in 2 oncology departments and 1 gynecology department over a 5-year implementation period from 2018 to 2022. METHODS: This qualitative study was inspired by action research comprising the responses of 17 patients to an open-ended question on their experience of specific aspects of DA-GSD in a web questionnaire, 14 qualitative semistructured interviews with nurses and patients who initially completed the web questionnaire, and transcripts of meetings held between the researchers and nurses during the implementation of the intervention. The thematic analysis of all data was done using NVivo (QSR International). RESULTS: The analysis generated 2 main themes and 7 subthemes that reflect conflicting perspectives and greater acceptability of the intervention among the nurses over time owing to better familiarity with the increasingly mature technology. The first theme was the different experiences and perspectives of nurses and patients concerning barriers to using DA-GSD and comprised 4 subthemes: conflicting perspectives on the ability of patients to engage with DA-GSD and how to provide it, conflicting perspectives on DA-GSD as a threat to the nurse-patient relationship, functionality of DA-GSD and available technical equipment, and data security. The other theme was what influenced the increased acceptability of DA-GSD among the nurses over time and comprised 3 subthemes: a re-evaluation of the nurse-patient relationship; improved functionality of DA-GSD; and supervision, experience, patient feedback, and a global pandemic. CONCLUSIONS: The nurses experienced more barriers to DA-GSD than the patients did. Acceptance of the intervention increased over time among the nurses in keeping with the intervention's improved functionality, additional guidance, and positive experiences, combined with patients finding it useful. Our findings emphasize the importance of supporting and training nurses if new technologies are to be implemented successfully.

5.
J Pediatr Hematol Oncol Nurs ; 40(2): 100-110, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-36628410

RESUMEN

Background: Over the past three decades, complex care and treatment have increasingly become the responsibility of parents as home-based care providers, yet little is known about parents' caregiving experiences when considering the variety of care tasks. It is imperative to gain insight into the challenges parents face when managing treatment and care of their child with cancer to ensure optimal parental support and prior to further expansion of home-based parent caregiving. This study aimed to explore the experiences of children and adolescents with cancer, who had received treatment through a portable infusion pump, and their parents in managing different care tasks. It is the first study and forms the basis of the research project INTACTatHome, that develops and tests interventions of home-based intravenous anti-cancer treatment. Methods: Ethnographic fieldwork comprising participant observation and semi-structured interviewing analyzed using qualitative thematic analysis. Thirteen families participated in the study. Results: Three main themes were identified: (1) being a "mini-nurse"; (2) dividing care; and (3) managing anxiety and fear, each based on separate sub-themes. These themes were bound together by an overarching theme: "Ambiguous expectations of parent caregiving." Discussion: This study contributes to a deeper understanding of the varying experiences of children and adolescents and their parents in managing different care tasks for a child or adolescent with cancer. It underscores the need to establish clear expectations of parents as caregivers throughout the cancer treatment trajectory. This perspective is crucial when developing and implementing future home-based care services.


Asunto(s)
Servicios de Atención de Salud a Domicilio , Neoplasias , Humanos , Niño , Adolescente , Motivación , Padres , Cuidadores , Hospitales , Neoplasias/terapia
6.
Palliat Med ; 37(1): 149-162, 2023 01.
Artículo en Inglés | MEDLINE | ID: mdl-36397271

RESUMEN

BACKGROUND: Many children and adolescents with incurable cancer and their families prefer to receive end-of-life care and to die at home. This implies a transition of care from hospital to home and presupposes the establishment of a well-functioning collaboration between the family and professionals across health care sectors. AIM: To identify and explore key elements of home-based end-of-life care collaboration for children with cancer, as experienced by their parents and grandparents and the hospital- and community-based professionals involved. DESIGN: Descriptive qualitative multiple-case study. Data were collected by semi-structured interviews and written responses to open-ended questions, and analyzed inductively across cases using qualitative content analysis. SETTING/PARTICIPANTS: Cases comprised a criterion sample of five children (aged <18 years), who died of cancer at home. Cases were represented by the children's bereaved parents (n = 8) and grandparents (n = 7), and community-based professionals (n = 16). Also, hospital-based professionals (n = 10) were interviewed about the children's end-of-life care through group interviews. RESULTS: We identified five main themes, describing key elements of the end-of-life collaboration: Establishing the collaboration, Bolstering family life, Elucidating organization and integration, Managing challenges, and Closing the collaboration. These themes all came under the overarching theme: A mutual trust-based collaboration. On this basis, we developed the "Home-Based Pediatric End-of-Life Care Model for Children with Cancer." CONCLUSIONS: By highlighting key elements in the family-centered, intersectoral and interprofessional end-of-life care collaboration, our "Home-Based Pediatric End-of-Life Care Model for Children with Cancer" offers a framework for further optimization of home-based end-of-life care services for children with cancer and their families.


Asunto(s)
Servicios de Atención de Salud a Domicilio , Neoplasias , Cuidado Terminal , Adolescente , Niño , Humanos , Colaboración Intersectorial , Padres , Investigación Cualitativa , Neoplasias/terapia , Muerte , Cuidados Paliativos
7.
Scand J Caring Sci ; 37(4): 917-926, 2023 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-35072276

RESUMEN

BACKGROUND: There is insufficient knowledge available about the impact of paediatric palliative care at home on meeting family needs and ensuring the highest quality of care for the dying child. The aim of this study was to elucidate parents' experiences of how and why home-based paediatric palliative care impacted the entire family during their child's final phase of life. METHODS: The study used a qualitative design. Semi-structured interviews were conducted with the bereaved parents of children who had received palliative care at home from a paediatric cancer hospital department programme that was based on collaboration with community nurses and the paediatric palliative care service. The interviews were transcribed verbatim, and qualitative content analysis was applied. The Ecocultural theory was used to explain the findings. RESULTS: Three main themes emerged: (1) involvement enabling a sense of control and coping, (2) sustaining participation in everyday family life routines and (3) making room for presence and comfort during and after the end-of-life trajectory. CONCLUSION: End-of-life palliative care at home can enable parents and other family members to maintain a sense of control, presence and semblance of everyday life. It contributes to managing and alleviating the burden and distress during the last phase of the child's life and during bereavement. We suggest that healthcare professionals support family members in participation and daily life routines and activities during a child's EOL care, as it affects the well-being of the entire family.


Asunto(s)
Servicios de Atención de Salud a Domicilio , Neoplasias , Cuidado Terminal , Niño , Humanos , Padres , Neoplasias/terapia , Muerte
8.
J Adv Nurs ; 78(3): 858-868, 2022 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-34636441

RESUMEN

AIMS: The purpose of this secondary analysis was to explore how young cancer survivors and their parents experience and manage treatment-related late effects in daily life post-treatment. DESIGN: A phenomenological-hermeneutic explorative study. METHODS: Using purposive sampling, we included 15 childhood cancer survivors (aged 11-18 years) and their parents who participated in semi-structured interviews from September 2019 through May 2020. We analysed the interviews paired using a thematic approach focused on meaning. RESULTS: The central theme, 'Negotiation daily life', emerged as well as three interrelated sub-themes, that is 'A changed everyday life', 'Physical activity as a tool' and 'Friends as a tool'. The childhood cancer survivors and their parents experienced, understood and interpreted the late effects differently. The difference between the survivors' perceptions and those of their parents in managing treatment-related late effects in everyday life resulted in a continuous negotiation process between the parties. Parents highlighted the negative impact of late effects on their child's daily life in relation to physical activity, school and socialization while the survivors wished to leave the cancer experience behind and 'move on' with their friends. As a result, most of the survivors developed strategies to manage their social activities while their parents felt that the survivors neglected the late effects. CONCLUSION: The ongoing negotiation process between the childhood cancer survivors and their parents show the complexity of the new family dynamics on returning to everyday life post-treatment. For clinical nurses, that means that there should be focus on family dynamics and how the childhood cancer survivors and parents, respectively, manage the childhood cancer survivors' late effects. IMPACT: Healthcare providers should distinguish between the needs of the survivors and those of their parents as they transition from treatment to everyday life, and especially in the management of late effects caused by the treatment.


Asunto(s)
Supervivientes de Cáncer , Neoplasias , Adolescente , Niño , Humanos , Neoplasias/terapia , Padres , Investigación Cualitativa , Sobrevivientes
9.
J Environ Manage ; 287: 112313, 2021 Jun 01.
Artículo en Inglés | MEDLINE | ID: mdl-33714041

RESUMEN

The purpose of this paper is to adjust the measure of eco-efficiency to account for specific sustainability targets at farm level. We assess eco-efficiency and adjust the scores according to a target of absolute levels of greenhouse gas (GHG) emissions, using Data Envelopment Analysis (DEA) and data from Swedish dairy farms as an illustrative example. In particular, the Swedish target of net-zero emissions in 2045 and vision of a fossil free economy are used to specify the GHG emission target used for assessing the adjusted eco-efficiency scores. We test for possible factors associated with the adjusted and unadjusted eco-efficiency using OLS-regression analysis. The study is based on data from the farm accounting data network (FADN) in year 2016 and considers the environmental pressures nutrients and contribution to global warming. Adjusted as well as unadjusted eco-efficiency scores suggest that Swedish dairy farms are highly inefficient, and that economic value added could increase by 64% (adj) or 67% (unadj) for conventional farms and by 42% (adj) or 41% (unadj) for organic farms at the same level of environmental pressure. Findings further suggest that adjusting the scores towards absolute levels of GHG emissions increases industry average efficiency. Comparing the unadjusted and adjusted efficiency scores using Spearman rank correlation indicates similar efficiency rankings between the unadjusted and adjusted scores. However, findings also indicate that adjusted and unadjusted eco-efficiency scores are associated with different influencing factors, which lends empirical support to the idea that the two types of efficiency scores are conceptually different. Policy recommendations can be made based on insights from the second stage analysis of possible influencing factors. In particular, adjusted eco-efficiency is associated with higher intensity of farming defined as output per livestock unit. Further, adjusted eco-efficiency is associated with a higher number of livestock units in conventional farms and with lower levels of labour per livestock unit in organic farms.


Asunto(s)
Industria Lechera , Gases de Efecto Invernadero , Animales , Granjas , Leche , Suecia
10.
Scand J Caring Sci ; 33(4): 824-832, 2019 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-30865330

RESUMEN

BACKGROUND: Home care service (HCS) for sick children is a complex healthcare service, which can be organised in various models. Despite the possibility to support family everyday life, the accessibility and utilisation may still be limited. The aim of this study was to (i) determine characteristics in referrals to county-based HCS, (ii) determine characteristics of referred children and (iii) assess acceptability of parents and children in county-based HCS. METHODS: Data on characteristics of referrals and referred children were collected from medical records of children 0-17 years of age, referred to eight HCS units during 2015-2018. Data on parental and child overall experience, satisfaction of, safety with, and preference for care, were collected from parents by a questionnaire. Descriptive and comparative statistics were used to analyse the data. RESULTS: Three hundred and fifty-five referrals led to one or more periods of HCS for 171 children in various ages with a wide range of illnesses. Children with cancer (30%) composed the largest group and administration of intravenous antibiotics accounted for 56% of the care tasks. Seven per cent of the referrals were to palliative home care. Thirty-eight referrals of 34 children were refused. There was an uneven distribution of the indication for referral, acceptance rate and diagnoses of children among HCS units. Parents reported their and their child's experience with the HCS visit as highly positive and preferred home care to hospital care in over 96% of the HCS in 212 visits. CONCLUSION: County-based HCS constitutes a supplement to hospital care for sick children with various illnesses through different stages of acute and long-term illness and at end of life, with high levels of acceptability. Few referrals and variation in referral characteristics and acceptance rate of referrals between HCS units led to unequal and inequitable accessibility and utilisation of HCS.


Asunto(s)
Servicios de Atención de Salud a Domicilio/organización & administración , Aceptación de la Atención de Salud , Adolescente , Niño , Preescolar , Femenino , Humanos , Lactante , Recién Nacido , Masculino , Derivación y Consulta , Suecia
11.
Health Soc Care Community ; 26(2): 224-231, 2018 03.
Artículo en Inglés | MEDLINE | ID: mdl-29094475

RESUMEN

Families often prefer home care to hospital care, and home-care services for ill children are increasing worldwide with limited knowledge of families' needs during curative and palliative home care. The aim of this study was to elucidate family members' lived experience when a sick child received home care from county-based primary healthcare services. A descriptive qualitative design was chosen and 12 families including sick children receiving home care and their mothers, fathers and siblings in the south of Sweden were interviewed between December 2015 and January 2017. The transcribed interviews were analysed using a hermeneutic phenomenological approach. The family members' lived experience was described in three essential themes: "Strengthening family life" relates to how home care induced freedom and luxury in a strained period of life and supported the families' everyday life. Usual social activities and relations were maintained as time and energy was saved when receiving home care. "Promoting health" relates to how the family members' burden of illness decreased as the child's signs of illness alleviated and the well-being of the whole family increased when the child received care in the home. This provided a peaceful respite for family members' psychosocial recovery. The third theme, "Creating alliances," relates to the importance of creating trustful alliances for communicating participation in care. If trustful alliances were not created, parents felt an overwhelming responsibility and family members became anxious. The findings suggest that care in the family's home is a useful complement to hospital care. Home care should be given with close attention to family members' needs and conditions, as positive effects of home care might be jeopardised when expectations and possibilities are not successfully shared.


Asunto(s)
Servicios de Salud del Niño/organización & administración , Familia/psicología , Servicios de Atención de Salud a Domicilio/organización & administración , Calidad de la Atención de Salud/normas , Adulto , Niño , Preescolar , Enfermedad Crítica/psicología , Femenino , Humanos , Lactante , Masculino , Persona de Mediana Edad , Cuidados Paliativos/organización & administración , Padres/psicología , Suecia
12.
Health Informatics J ; 24(4): 419-431, 2018 12.
Artículo en Inglés | MEDLINE | ID: mdl-27895100

RESUMEN

Bringing virtual environments into cancer support may offer a particular potential to engage patients and increase adherence to treatment. Developing and pilot-testing an online real-time multi-user three-dimensional platform, this study tested the use of an early prototype of the platform among adolescent and young adult cancer patients. Data were collected with an online questionnaire and using ethnographic methods of participant observation. The adolescent and young adult patients tested basic features of the virtual environment and some conducted brief in-world interactions with fellow patients during hospitalization. They had no reservations about using the technology and shared their ideas about its use. Our pilot test pointed to a number of areas of development for virtual environment applications as potential platforms for medical or behavioral interventions in cancer care. Overall, the results demonstrate the need for high user involvement in the development of such interventions and early testing of intervention designs.


Asunto(s)
Internet , Neoplasias/psicología , Grupos de Autoayuda , Interfaz Usuario-Computador , Terapia de Exposición Mediante Realidad Virtual , Adolescente , Antropología Cultural , Femenino , Humanos , Masculino , Proyectos Piloto , Desarrollo de Programa , Encuestas y Cuestionarios , Adulto Joven
13.
Support Care Cancer ; 26(4): 1143-1150, 2018 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-29058130

RESUMEN

PURPOSE: Unrecognised psychological distress among cancer survivors may be identified using short screening tools. We validated the accuracy of the distress thermometer (DT) to detect psychological distress on the Hospital Anxiety and Depression Scale (HADS) among early stage gynaecological cancer survivors and whether the women's DT and HADS scores were associated with the need of an individualised supportive intervention. METHODS: One hundred sixty-five gynaecological cancer survivors answered DT and HADS before randomisation in a trial testing a nurse-led, person-centred intervention using supportive conversations. The number of conversations was decided in the woman-nurse dyad based on the woman's perceived need. Nurses were unaware of the women's DT and HADS scores. We validated DT's accuracy for screening using HADS as gold standard and receiver operating characteristic curves. Associations between DT and HADS scores and the number of conversations received were investigated. RESULTS: For screening of distress (HADS ≥ 15), a DT score ≥ 2, had a sensitivity of 93% (95% CI 82-98%), a specificity of 40% (32-49%), and positive and negative predictive values of 36% (28-45%), and 94% (84-98%), respectively; area under curve was 0.73 (0.64-0.81). Higher DT and HADS scores were associated with more interventional conversations. CONCLUSIONS: In gynaecological cancer survivors, DT may perform fairly well as a first stage screening tool for distress, but a second stage is likely needed due to a high number of false positives. DT and HADS scores may predict the number of supportive conversations needed in an individualised intervention in gynaecological cancer survivors.


Asunto(s)
Ansiedad/diagnóstico , Detección Precoz del Cáncer/métodos , Neoplasias de los Genitales Femeninos/psicología , Tamizaje Masivo/métodos , Estrés Psicológico/diagnóstico , Adulto , Supervivientes de Cáncer , Femenino , Neoplasias de los Genitales Femeninos/patología , Humanos , Masculino , Persona de Mediana Edad
14.
J Cancer Surviv ; 10(5): 832-41, 2016 10.
Artículo en Inglés | MEDLINE | ID: mdl-26902366

RESUMEN

PURPOSE: We investigated the effect of a person-centered intervention consisting of two to four nurse-led conversations using guided self-determination tailored to gynecologic cancer (GSD-GYN-C) on gynecological cancer survivors' quality of life (QOL), impact of cancer, distress, anxiety, depression, self-esteem, and self-reported ability to monitor and respond to symptoms of recurrence. METHODS: We randomly assigned 165 gynecological cancer survivors to usual care (UC) plus GSD-GYN-C or UC alone. Self-reported QOL-cancer survivor (QOL-CS) total score and subscale scores on physical, psychological, social, and spiritual well-being were assessed before randomization and at 3 and 9 months after randomization using t tests. Bonferroni and Pipper corrections were applied for multiple testing adjustments. RESULTS: At 9 months, the GSD-GYN-C plus UC group scored significantly higher on the QOL-CS total scale (P = 0.02) and on the QOL-CS physical well-being subscale (P = 0.01), compared to women receiving UC alone. After adjusting for baseline scores, only the difference in the physical well-being subscale was statistically significant. No other measured outcomes differed between the intervention and control groups after baseline adjustment. CONCLUSION: We observed higher physical well-being 9 months after randomization in the GSD-GYN-C group, as compared to women receiving usual care. IMPLICATIONS FOR CANCER SURVIVORS: The results suggest that the person-centered intervention GSD-GYN-C may improve physical well-being in gynecological cancer survivors. However, further testing is needed.


Asunto(s)
Intervención Educativa Precoz , Neoplasias de los Genitales Femeninos/psicología , Neoplasias de los Genitales Femeninos/rehabilitación , Atención Dirigida al Paciente/métodos , Calidad de Vida , Sobrevivientes/psicología , Adulto , Ansiedad/prevención & control , Estudios de Casos y Controles , Depresión/prevención & control , Femenino , Necesidades y Demandas de Servicios de Salud , Humanos , Trastornos Mentales/prevención & control , Persona de Mediana Edad , Recurrencia Local de Neoplasia/prevención & control , Autoimagen
15.
Eur J Oncol Nurs ; 19(4): 349-58, 2015 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-25697547

RESUMEN

PURPOSE: To develop and pilot test an intervention targeting the women's psychosocial needs during the follow-up period after surgical treatment for gynaecological cancer. METHODS: The project consisted of four phases. Phase 1 involved development of an intervention on the basis of meetings with key healthcare professionals, a literature review and six semi-structured interviews with women who attended the existing follow-up program. The Guided Self-Determination (GSD) method developed in diabetes care was identified as an appropriate framework for the intervention. GSD consists of reflection sheets for patients and advanced professional communication skills. The GSD method was adapted to women in a follow-up program after gynaecologic cancer treatment (GSD-GYN-C). Phase 2 involved primary pilot testing of the intervention and the findings were used to modify the intervention in phase 3. This modification involved the development of additional reflection sheets and a fidelity assessment tool. A systematic training program was arranged for the GSD-GYN-C-nurses. Phase 4 involved secondary pilot testing where nurses and women confirmed the applicability of GSD-GYN-C and final adjustments were made. Selected measurements were tested for sensitivity during pilot testing. Data from phase 2 and 4 were also used to select the primary outcome and calculate power for a future randomized clinical trial (RCT). RESULTS: Pilot testing supported our hypothesis that GSD-GYN-C may be transferable and useful to survivors of gynaecological cancer. CONCLUSION: GSD-GYN-C was developed and validated and is now ready for evaluation in an RCT.


Asunto(s)
Neoplasias de los Genitales Femeninos/psicología , Necesidades y Demandas de Servicios de Salud , Sobrevivientes/psicología , Consejo , Femenino , Neoplasias de los Genitales Femeninos/terapia , Humanos , Entrevistas como Asunto , Proyectos Piloto , Poder Psicológico , Desarrollo de Programa , Proyectos de Investigación , Autocuidado , Apoyo Social , Encuestas y Cuestionarios
16.
Pediatr Blood Cancer ; 60(5): 865-72, 2013 May.
Artículo en Inglés | MEDLINE | ID: mdl-23335455

RESUMEN

BACKGROUND: To assess the feasibility and psychosocial impact of a hospital-based home care (HBHC) program for children with cancer. PROCEDURE: A HBHC program was carried out with 51 children (0-18 years) with cancer to assess its feasibility in terms of satisfaction, care preferences, safety, and cost. A controlled trial was conducted to assess children's health-related quality of life (HRQOL) using the parent-reported and self-reported PedsQL generic core scale and PedsQL cancer module, and the psychosocial impact on the family by PedsQL family impact module comprising a subsample of 28 children and 43 parents in the home care group, and 47 children and 66 parents receiving standard hospital care. RESULTS: All parents in the HBHC program were satisfied and preferred home care. There were no serious adverse events associated with HBHC, and costs did not increase. When adjusting for age, gender, diagnosis and time since diagnosis, we found significant higher HRQOL scores in parent-reported physical health (P = 0.04; 95% confidence interval (CI): -0.2-19.5) and worry (P = 0.04; 95% CI: -0.4-20.6) in the home-care group indicating better physical health and less worry for children in the home-care group. No significant difference was found in the Family Impact Module. CONCLUSION: This study indicates that HBHC is a feasible alternative to hospital care for children with cancer, and is greatly preferred by parents. Specific aspects of children's HRQOL may be improved with HBHC and the psychosocial burden on the family does not increase.


Asunto(s)
Servicios de Atención a Domicilio Provisto por Hospital/economía , Neoplasias/enfermería , Calidad de Vida , Adolescente , Niño , Protección a la Infancia , Preescolar , Familia/psicología , Estudios de Factibilidad , Femenino , Humanos , Lactante , Recién Nacido , Masculino , Padres/psicología , Psicometría
17.
Pediatr Blood Cancer ; 57(3): 369-77, 2011 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-21594980

RESUMEN

Hospital-based home care (HBHC) is widely applied in Pediatric Oncology. We reviewed the potential effect of HBHC on children's physical health and risk of adverse events, parental and child satisfaction, quality of life of children and their parents, and costs. A search of PubMed, CINAHL, and EMBASE led to identification of five studies that met the inclusion criteria. All sample sizes were small, and both the interventions and the outcome measures were diverse. Although burdened by these limitations, the studies indicate that HBHC is feasible and carries no crucial negative effects for children with cancer.


Asunto(s)
Servicios de Atención a Domicilio Provisto por Hospital/normas , Neoplasias/terapia , Niño , Protección a la Infancia , Familia , Humanos , Neoplasias/psicología , Satisfacción del Paciente , Calidad de Vida
18.
J Sep Sci ; 33(1): 112-9, 2010 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-20024928

RESUMEN

The extraction characteristics of a dynamic hollow-fibre liquid phase microextraction system were investigated by studying the mass transfer and diffusion rates of dinitrophenols from plasma samples over the liquid membrane (dihexylether). The measured diffusion coefficients were compared with theoretical values calculated from Stokes diameters. The diffusion mechanism was simulated by computer and the most polar compounds, 2,4-dinitrophenol and 4,6-o-dinitrocresol, had associated diffusion coefficients that were close to the calculated theoretical values. 2-sec-Butyl-4,6 dinitrophenol and 2-tert-butyl-4,6-dinitrophenol, the compounds with the highest log P values, were retained by the polypropylene membrane, which reduced the experimentally observed diffusion rates to about half of the theoretical values. The retention was most likely due to dispersive forces interacting with the pore inner walls. Extraction was linearly correlated with time for all compounds and the repeatability was high (RSDs 7-11%), even for the shortest extraction times. Method LOD as the amount injected ranged between 0.3 and 3.1 ng for an extraction cycle of 213 s.

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