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1.
Scand J Caring Sci ; 38(1): 200-209, 2024 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-37655653

RESUMEN

BACKGROUND AND AIM: The aim of the present article was to elaborate on a research approach and method called 'lifeworld hermeneutics'. Significant to lifeworld hermeneutics is that interpretation is the main methodological instrument for explaining and understanding existential research questions and lived experiences. From a caring science perspective, this often refers to research that aims to gain a deeper understanding of existential phenomena and issues, such as existential meaning of health, well-being, homelessness, lostness, suffering and ageing, as well as what it means to experience unhealthiness and illness, the need for care, and caring that responds to such needs. DESIGN: Theoretical paper. RESULT: The article briefly covers ontology and epistemology that clarifies the meaning and importance of a lifeworld hermeneutic attitude. This is followed by suggestions for how to perform a lifeworld hermeneutic study, expressed in relation to methodological principles for the interpretation, validation and structuring of interpretations. Thereafter, follow reflections on how to use theoretical or philosophical support to develop and deepen existential interpretations. The findings of lifeworld hermeneutic research consist of existential interpretations where the researcher, with an open and pliable attitude towards the phenomenon and the aim of the study, clarifies, explains and suggests new ways of understanding participants' lived experiences; the researcher should maintain such an attitude towards their understanding of the phenomenon as well. CONCLUSION: The lifeworld hermeneutical approach and method described in this article makes it possible to further deepen the understanding and knowledge about existential issues that is relevant for caring and caring science.


Asunto(s)
Existencialismo , Humanos , Hermenéutica
2.
Eur J Pediatr ; 182(10): 4707-4721, 2023 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-37566281

RESUMEN

Children continue to experience harm when undergoing clinical procedures despite increased evidence of the need to improve the provision of child-centred care. The international ISupport collaboration aimed to develop standards to outline and explain good procedural practice and the rights of children within the context of a clinical procedure. The rights-based standards for children undergoing tests, treatments, investigations, examinations and interventions were developed using an iterative, multi-phased, multi-method and multi-stakeholder consensus building approach. This consensus approach used a range of online and face to face methods across three phases to ensure ongoing engagement with multiple stakeholders. The views and perspectives of 203 children and young people, 78 parents and 418 multi-disciplinary professionals gathered over a two year period (2020-2022) informed the development of international rights-based standards for the care of children having tests, treatments, examinations and interventions. The standards are the first to reach international multi-stakeholder consensus on definitions of supportive and restraining holds.    Conclusion: This is the first study of its kind which outlines international rights-based procedural care standards from multi-stakeholder perspectives. The standards offer health professionals and educators clear evidence-based tools to support discussions and practice changes to challenge prevailing assumptions about holding or restraining children and instead encourage a focus on the interests and rights of the child. What is Known: • Children continue to experience short and long-term harm when undergoing clinical procedures despite increased evidence of the need to improve the provision of child-centred care. • Professionals report uncertainty and tensions in applying evidence-based practice to children's procedural care. What is New: • This is the first study of its kind which has developed international rights-based procedural care standards from multi-stakeholder perspectives. • The standards are the first to reach international multi-stakeholder consensus on definitions of supportive and restraining holds.


Asunto(s)
Consenso , Técnicas y Procedimientos Diagnósticos , Pediatría , Adolescente , Humanos , Técnicas y Procedimientos Diagnósticos/ética , Técnicas y Procedimientos Diagnósticos/normas , Niño , Pediatría/ética , Pediatría/normas
3.
J Pediatr Nurs ; 65: e28-e34, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35184937

RESUMEN

PURPOSE: This study describes the lived experiences of nurse-led consultations in pediatric emergency departments from the perspective of pediatric nurses. DESIGN AND METHODS: A descriptive qualitative study with a reflective lifeworld research approach was used to explore nurses' experiences of nurse-led consultations. The study was conducted through meaning-oriented individual interviews with ten pediatric nurses. RESULTS: The results are grouped into four themes: (a) embracing the encounter and being touched by it; (b) having time to be present and committed; (c) having the ability and trusting in one's intuition; and (d) negotiating between families' wishes and the organization's guidelines. CONCLUSIONS: Our study shows that nurse-led consultations conducted in separate nurse-led reception areas promote a positive experience of the consultations from the perspective of pediatric nurses. In a nurse-led consultation, a nurse's confidence in their ability to provide care is connected to time, broad skills and knowledge, and a supportive organization. PRACTICE IMPLICATIONS: As the rising global population increases the demand for healthcare services, pediatric emergency departments must streamline their services to provide patient-safe, high-quality health care. Nurse-led consultations are an effective means of meeting these growing demands. This study contributes to an understanding of pediatric nurses' experiences at both the individual level and a more structured level, namely that families' wishes and an organization's guidelines do not always coincide.


Asunto(s)
Rol de la Enfermera , Enfermeras Pediátricas , Niño , Humanos , Investigación Cualitativa , Derivación y Consulta , Suecia
4.
Scand J Caring Sci ; 35(2): 530-537, 2021 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-32363693

RESUMEN

BACKGROUND: Children often report both fear and pain in conjunction with clinical care and treatment. Interventions developed in the field have still not been sufficient to prevent and relieve children's fear and pain. More knowledge, from children's own perspectives, is needed about how they deal with their experiences. AIM: To explore child-identified strategies that children use to manage fear and pain during needle-related medical procedures in hospital. METHODS: Interviews with children, age 4-12 years, with experience of hospital care were analysed qualitatively using content analysis. RESULTS: Children have self-identified strategies for dealing with fear and pain during hospital care and treatment. The strategies vary depending on examination or treatment and on how the child felt at that particular day. Children describe what they can do themselves, how adults can empower them and support from surroundings as strategies that give them a choice and a voice. Children wished to have influence, decide when and how information should be given, scream out loud or squeeze something hard, to deal with fear and pain. The results also show that children tried to be brave, gain control and think positively. Something nice to look at and opportunities to play with others also contributed. CONCLUSIONS: Strategies vary between children and are used differently on different occasions. Healthcare professionals pose a threat to the child's needs and ability to use their strategies due to lack of knowledge of the child's chosen strategies.


Asunto(s)
Miedo , Dolor , Adulto , Niño , Preescolar , Familia , Hospitales , Humanos
5.
Health Expect ; 23(4): 860-869, 2020 08.
Artículo en Inglés | MEDLINE | ID: mdl-32319716

RESUMEN

BACKGROUND: In 2020, the United Nations Convention on the Rights of the Child (UNCRC) became law in Sweden. This puts extra demands on Swedish health care for children in need. This study aimed to investigate children's experiences and paediatric nurses' experiences of caring in accordance with the UNCRC. METHODS: Interviews were conducted in 2019 with 10 children and 13 nurses at a paediatric clinic in western Sweden. Child and nurse data were analysed separately with qualitative content analysis. The results are presented as a synthesis of the combined analysis of both data sets. RESULTS: Children did not always meet health-care professionals with the necessary competence to care for them, and they were not always cared for in a child-friendly environment. Even though nurses in paediatric care had the competence necessary to meet children's rights in health care, organizational issues made it challenging. Providing health care in accordance with the UNCRC principles required time and competence. Sufficient time to help children participate in their care and ensure that they feel secure was considered necessary-regardless of the health-care context. CONCLUSION: Health-care encounters without the necessary time or competence can affect children and future encounters negatively. Instruments to safeguard children's rights in health care need to be developed and implemented, such as a documentation system to make children's rights visible and/or UNCRC certification. Implementation of UNCRC principles in all health-care situations for children as standardized care requires competence, involvement, strong leadership and economic support. Children's voices in research can assist in guiding care.


Asunto(s)
Atención a la Salud , Familia , Instituciones de Atención Ambulatoria , Humanos , Suecia
6.
Paediatr Anaesth ; 30(9): 998-1005, 2020 09.
Artículo en Inglés | MEDLINE | ID: mdl-32463955

RESUMEN

INTRODUCTION: Children experience anesthetization as stressful, and many preoperative measures have been tested for reducing their anxiety. There is, however, little research about children's own experiences and thoughts about being anesthetized. AIMS: The aim of the present study was thus to explain and understand the meaning of being anesthetized as experienced by children. METHODS: A qualitative lifeworld hermeneutic approach was used. Data were collected through nonparticipant video observations, field notes, and interviews. The participants were children (n = 28) aged 4-13 years who required general elective minor surgery performed in four Swedish hospitals. RESULTS: The four interpreted themes describe the children's experiences of being anesthetized: Being powerless, Striving for control, Experiencing an ambiguous comprehensibility, and Seeking security. The children struggled with anxiety as a result of their inability to protect themselves from perceived external threats while being anesthetized. In order to meet their needs, it would be beneficial for them to receive appropriate information in a calm, supportive, and protective environment. CONCLUSION: The reasons for children experiencing anxiety when being anesthetized are multifaceted, and this study highlights the importance of listening to each child's own voice and striving to create an individually adapted caring and safe environment with as much protection as possible.


Asunto(s)
Ansiedad , Miedo , Niño , Emociones , Humanos
7.
J Pediatr Nurs ; 31(6): 667-677, 2016.
Artículo en Inglés | MEDLINE | ID: mdl-27426015

RESUMEN

Needle-related medical procedures (NRMPs) are something that all young children need to undergo at some point. These procedures may involve feelings of fear, pain and anxiety, which can cause problems later in life either when seeking healthcare in general or when seeking care specifically involving needles. More knowledge is needed about supporting children during these procedures. AIM: This study aims to explain and understand the meaning of the research phenomenon: support during NRMPs. The lived experiences of the phenomenon are interpreted from the perspective of younger children. METHOD: The analysis uses a lifeworld hermeneutic approach based on participant observations and interviews with children between 3 and 7years of age who have experienced NRMPs. RESULTS: The research phenomenon, support for younger children during NRMPs, is understood through the following themes: being the centre of attention, getting help with distractions, being pampered, becoming involved, entrusting oneself to the safety of adults and being rewarded. A comprehensive understanding is presented wherein younger children experience support from adults during NRMPs in order to establish resources and/or strengthen existing resources. CONCLUSIONS: The manner in which the child will be guided through the procedure is developed based on the child's reactions. This approach demonstrates that children are actively participating during NRMPs. Supporting younger children during NRMPs consists of guiding them through a shared situation that is mutually beneficial to the child, the parent and the nurse. Play during NRMP is an important tool that enables the support to be perceived as positive.


Asunto(s)
Ansiedad/prevención & control , Pruebas Diagnósticas de Rutina/psicología , Inyecciones/psicología , Agujas/efectos adversos , Dolor/prevención & control , Estrés Psicológico/prevención & control , Ansiedad/psicología , Niño , Preescolar , Pruebas Diagnósticas de Rutina/métodos , Miedo , Femenino , Hermenéutica , Humanos , Masculino , Dolor/psicología , Estrés Psicológico/psicología
8.
J Pediatr Nurs ; 31(2): e109-18, 2016.
Artículo en Inglés | MEDLINE | ID: mdl-26603292

RESUMEN

UNLABELLED: Needle-related medical procedures (NRMPs) are often frightening and cause children anxiety and pain. Only a few studies have examined the perspectives of younger children. More knowledge is needed about younger children's experiences in caring situations such as NRMPs. AIM: The aim of this study was to explain and understand the consequences related to NRMPs from younger children's perspectives. METHODS: Participant observations and interviews with younger children who had experienced NRMPs were analysed using a lifeworld hermeneutic approach. RESULTS: Experiencing fear is central for younger children during an NRMP and interpretation of its consequences formed the basis for the following themes: seeking security, realizing the adult's power, struggling for control, feeling ashamed, and surrendering. A comprehensive understanding is presented wherein younger children's experiences of NRMPs vary across time and space related to weakening and strengthening their feelings of fear. CONCLUSIONS: Awareness is needed that adults' power becomes more obvious for children during an NRMP. Children's surrender does not necessarily imply acceptance of the procedure. Providing children with opportunities to control elements of the procedure creates a foundation for active participation, and vice versa.


Asunto(s)
Pruebas Diagnósticas de Rutina/psicología , Hermenéutica , Agujas/efectos adversos , Factores de Edad , Ansiedad/etiología , Ansiedad/fisiopatología , Ansiedad/psicología , Niño , Preescolar , Pruebas Diagnósticas de Rutina/métodos , Femenino , Humanos , Entrevistas como Asunto , Masculino , Dolor/etiología , Dolor/fisiopatología , Dolor/psicología , Medición de Riesgo , Factores Sexuales , Estrés Psicológico/prevención & control , Suecia , Poblaciones Vulnerables
9.
BMC Infect Dis ; 15: 175, 2015 Apr 08.
Artículo en Inglés | MEDLINE | ID: mdl-25886277

RESUMEN

BACKGROUND: In the Mitra plus study of prevention of mother-to-child transmission of HIV-1, which included 501 women in Dar es Salaam, Tanzania, triple antiretroviral therapy (ART) was given from late pregnancy throughout breastfeeding up to 6 months postnatally. Here we report findings in a sub-cohort of women with ≤200 CD4cells/µL at enrolment who were continued on ART for life and followed up during 24 months after delivery to determine virologic and immunologic responses, drug resistance and mortality. METHODS: Blood samples for viral load and CD4 counts testing were collected at enrolment and at 3, 6, 12 and 24 months postpartum. HIV drug resistance testing was performed at 12 months. Data analysis included descriptive statistics and multivariate analysis using Generalized Estimated Equations of 73 women with at least two postpartum assessments. The mortality analysis included 84 women who had delivered. RESULTS: The proportion of women with a viral load≥400 copies/mL was 97% (71/73) at enrolment, 16% (11/67), 22% (15/69), 61% (36/59) and 86% (48/56) at 3, 6, 12 and 24 months postpartum, respectively. The proportion of women with immunologic failure was 12% (8/69), 25% (15/60) and 41% (24/58) at 6, 12 and 24 months, respectively. At 12 months, drug resistance was demonstrated in 34% (20/59), including 12 with dual-class resistance. Self-report on drug adherence was 95% (64/68), 85% (56/66), 74% (39/53) and 65% (30/46) at 3, 6, 12 and 24 months, respectively. The mortality rate was 5.9% (95% CI 2.5-13.7%) at 24 months. The probability of virologic and immunologic failure was significantly higher among women who reported non-perfect adherence to ART at month 24 postpartum. CONCLUSIONS: Following an initial decline of viral load, virologic failure was common at 12 and 24 months postpartum among women initiated on ART for life during pregnancy because of low CD4 cell counts. A high proportion of viremic mothers also had resistance mutations. However, at 24 months follow-up, the mortality rate was still fairly low. Continuous adherence counseling and affordable means of monitoring of the virologic response are crucial for successful implementation of the WHO Option B+ guidelines to start all HIV-infected pregnant women on ART for life.


Asunto(s)
Farmacorresistencia Viral Múltiple , Infecciones por VIH/tratamiento farmacológico , ARN Viral/sangre , Inhibidores de la Transcriptasa Inversa/uso terapéutico , Viremia/sangre , Adulto , Terapia Antirretroviral Altamente Activa , Lactancia Materna , Recuento de Linfocito CD4 , Estudios de Cohortes , Farmacorresistencia Viral , Femenino , Infecciones por VIH/inmunología , Infecciones por VIH/mortalidad , VIH-1/genética , Humanos , Transmisión Vertical de Enfermedad Infecciosa/prevención & control , Cumplimiento de la Medicación , Periodo Posparto , Embarazo , Estudios Prospectivos , Tanzanía , Insuficiencia del Tratamiento , Carga Viral , Adulto Joven
10.
Support Care Cancer ; 23(10): 2965-72, 2015 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-25744286

RESUMEN

PURPOSE: The purpose was to compare progression/regression of arm lymphoedema, health-related quality of life and medical background data among women who discontinued their treatment (non-continued treatment group, NCTG) with these factors among women who continued treatment (continued treatment group, CTG). METHODS: Seventy-two women were included in the NCTG and 58 women in the CTG. Women in the NCTG were invited to an examination and measurement of affected arm volume at the clinic in 2008. Medical background data and arm volume values, measured using the water displacement method, were collected from patient records and the Breast Cancer Quality Register of the Uppsala Örebro Region. The functional assessment of cancer therapy for breast cancer (FACT-B) was used to assess health-related quality of life in both groups. RESULTS: There were no differences with regard to progression/regression of arm lymphoedema or health-related quality of life. The CTG had experienced more advanced disease and received more extensive surgical and oncological treatment. The CTG had significantly larger arm volume due to lymphoedema at diagnosis (mean 422 ml) compared to the NCTG (mean 283 ml; p < 0.001), and at the last visit at the clinic (CTG mean 414 ml versus NCTG mean 239 ml; p < 0.001). CONCLUSIONS: The results indicate that there might be a spontaneous regression of lymphoedemas in the NCTG but there is a need for more research to make it possible to draw firm conclusions regarding this.


Asunto(s)
Neoplasias de la Mama/terapia , Linfedema/terapia , Anciano , Neoplasias de la Mama/mortalidad , Femenino , Estudios de Seguimiento , Humanos , Linfedema/mortalidad , Calidad de Vida , Estudios Retrospectivos , Sobrevivientes
11.
Scand J Caring Sci ; 29(1): 110-7, 2015 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-24712541

RESUMEN

Lymphoedema after breast cancer surgery is a chronic condition. Lymphoedema treatment consists of information/advice, compression, physical exercise, skin care, and manual lymph drainage. Little is known about how patients experience, adapt, and respond to lymphoedema treatment. Thus, the purpose of the study was to investigate and describe women's perceptions of lymphoedema treatment after breast cancer surgery. Sixteen women with breast-cancer-related lymphoedema, recruited from four hospitals and two rehabilitation clinics, participated in the study. Semi-structured interviews were conducted and analysed using a phenomenographic method. Five qualitatively different categories of description could be identified: uncertainty, disappointment, guilt and shame, safety, and autonomy. The categories could be described based on a two-dimensional structure: the patients role (internal vs. external locus of control) and an understanding of lymphoedema as a chronic disease or a burden. The study has provided a deeper understanding of different ways in which patients perceive and respond to lymphoedema treatment. The present findings enable the lymphoedema therapist to individualise treatment and counselling based on each patient's approach to the patient role, ability to take responsibility for treatment, and acceptance of lymphoedema as a chronic disease.


Asunto(s)
Neoplasias de la Mama/complicaciones , Linfedema/psicología , Adulto , Anciano , Femenino , Humanos , Linfedema/complicaciones , Linfedema/terapia , Persona de Mediana Edad , Suecia
12.
Oncol Nurs Forum ; 50(6): 783-815, 2023 Oct 19.
Artículo en Inglés | MEDLINE | ID: mdl-37874760

RESUMEN

PROBLEM IDENTIFICATION: This scoping review aimed to explore symptom clusters (SCs) in patients with lung cancer and how included symptoms and symptom dimensions are measured. LITERATURE SEARCH: PubMed®, CINAHL®, Scopus®, and Cochrane Library were searched for studies published until December 31, 2021. Fifty-three articles were included. DATA EVALUATION: Data extracted included descriptive items and SC constellations. Patient-reported outcome instruments and measured symptom dimensions were described according to the middle-range theory of unpleasant symptoms. SYNTHESIS: 13 articles investigated SCs a priori and 40 de novo. Thirty-six instruments were used, mostly measuring intensity alone or in combination with timing. Qualitative articles (n = 6) provided rich descriptions within the distress, timing, and quality dimensions. IMPLICATIONS FOR RESEARCH: Fatigue was the symptom found to most frequently co-occur with other symptoms in SCs. Fatigue, psychological symptoms, and nutritional aspects are emphasized as important areas for oncology nursing practice and further research to improve SC management for patients with lung cancer.


Asunto(s)
Neoplasias Pulmonares , Humanos , Neoplasias Pulmonares/complicaciones , Síndrome , Fatiga/etiología , Enfermería Oncológica
13.
Paediatr Neonatal Pain ; 5(1): 23-30, 2023 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-36911787

RESUMEN

To examine whether children experience less fear or pain using a child-centered intervention and if there were differences between the intervention group and the control group regarding heart rate, time required for the procedure, success rate for the cannula insertion, and patient satisfaction. A controlled single-center case study of observational design, with one control and one intervention group. Child self-reported fear or pain levels did not reveal any differences for those receiving the intervention compared with controls. However, according to a behavioral observation measure with the Procedure Behavior Check List, effects of the intervention were lower distress in relation to fear and pain during the cannula insertion. The time it took to perform the cannula insertion also decreased significantly in the intervention group. More children in the intervention group reported that they were satisfied with the needle procedure compared with the children in the control group. The child-centered intervention provides reduced observed distress related to fear and pain in children undergoing a cannula insertion and reduced total time by more than 50%. This study found that child involvement in care strengthen their ability to manage a needle procedure.

14.
Lymphat Res Biol ; 20(3): 325-334, 2022 06.
Artículo en Inglés | MEDLINE | ID: mdl-34551275

RESUMEN

Background: Most commonly, volume measurements are used to evaluate the effect of lymphedema treatment, but as the accumulation of lymph fluid can be local, this method may not always be the best. Tissue dielectric constant (TDC) can be applied to identify local lymphedema changes, but has not been used before when evaluating treatment in mild arm lymphedema. Thus, the overall aim of this study was to examine if TDC and water displacement method (WDM) can measure changes in mild breast cancer-related lymphedema during the 6-month standard treatment. More specifically, we examined changes within and between three defined groups based on lymphedema thresholds of TDC and WDM at start of treatment, as well as changes of the highest TDC ratio and site. Methods and Results: Forty-six women with mild arm lymphedema, received treatment with compression sleeves, mostly ccl 1, and instructions about self-care. Local tissue water was measured by TDC at six defined sites and lymphedema relative volume (LRV) by WDM before treatment and at first, second, third, and sixth month. There was a significant decrease in the site with the highest TDC ratio, as well as LRV at all follow-up visits. At 6 months, TDC ratio had decreased mean 0.26 (p < 0.001) and LRV mean - 3.3% (p < 0.001). There was a significant difference between the groups in change of TDC ratio, but not in LRV. Sixty percent changed the overall highest TDC ratio to another site during 6 months. Conclusion: Both TDC and WDM could detect changes in mild arm lymphedema but should be interpreted separately.


Asunto(s)
Linfedema del Cáncer de Mama , Neoplasias de la Mama , Linfedema , Brazo , Agua Corporal , Linfedema del Cáncer de Mama/diagnóstico , Linfedema del Cáncer de Mama/etiología , Linfedema del Cáncer de Mama/terapia , Neoplasias de la Mama/complicaciones , Femenino , Humanos , Linfedema/diagnóstico , Linfedema/etiología , Agua
15.
Patient Educ Couns ; 105(6): 1518-1523, 2022 06.
Artículo en Inglés | MEDLINE | ID: mdl-34625321

RESUMEN

OBJECTIVE: This study explores children's expressions of emotional cues and concerns during needle procedures, nurses' responses and findings in relation to children's age and sex. METHODS: Twenty-six children aged 6-12 years were video recorded during a preoperative needle procedure. Emotional communication was analyzed using Verona Coding Definitions of Emotional Sequences. RESULTS: A total of 111 cues or concerns were identified in the observed needle procedures, with a distribution of 77 cues and 34 concerns. A majority of children (85%) expressed emotional cues through non-verbal communication. No differences between child age or sex related to expressed emotion were found. The child elicited the communicated emotion in 98% of sequences. Nurses' responses were coded as not providing space for communication in 75% of sequences. CONCLUSION: Children are capable of expressing their emotional distress, primarily non-verbally, during needle procedures. A child showing less overt expressions during a needle procedure does not necessarily experience less fear or pain. The nurses' communication focused on practical information during the needle procedure, with less attention to the child's distress. PRACTICE IMPLICATIONS: Nurses need to develop strategies to be aware of emotions the child communicates before, during and after a needle procedure.


Asunto(s)
Comunicación , Señales (Psicología) , Niño , Emociones , Familia , Miedo , Humanos
16.
JMIR Pediatr Parent ; 5(1): e30364, 2022 Mar 08.
Artículo en Inglés | MEDLINE | ID: mdl-35258466

RESUMEN

BACKGROUND: Children with long-term illnesses frequently experience symptoms that could negatively affect their daily lives. These symptoms are often underreported in health care. Despite a large number of mobile health (mHealth) tools, few are based on a theoretical framework or supported by scientific knowledge. Incorporating universal design when developing a product can promote accessibility and facilitate person-centered communication. OBJECTIVE: The aim of this study is to identify the symptom-reporting needs of children with cancer and congenital heart defects that could be satisfied by using a mobile app. Another aim is to evaluate how the child might interact with the app by considering universal design principles and to identify parents' views and health care professionals' expectations and requirements for an mHealth tool. METHODS: User-centered design is an iterative process that focuses on an understanding of the users. The adapted user-centered design process includes 2 phases with 4 stages. Phase 1 involved interviews with 7 children with long-term illnesses, 8 parents, and 19 health care professionals to determine their needs and wishes for support; a workshop with 19 researchers to deepen our understanding of the needs; and a workshop with developers to establish a preliminary tool to further investigate needs and behaviors. Phase 2 involved interviews with 10 children with long-term illnesses, 9 parents, and 21 health care professionals to evaluate the mock-up (prototype) of the mHealth tool. Data were synthesized using the interpretive description technique. RESULTS: A total of 4 aspects of needs emerged from the synthesis of the data, as follows: different perspectives on provided and perceived support; the need for an easy-to-use, non-clinic-based tool to self-report symptoms and to facilitate communication; the need for safety by being in control and reaching the child's voice; and a way of mapping the illness journey to facilitate recall and improve diagnostics. The children with long-term illnesses expressed a need to not only communicate about pain but also communicate about anxiety, fatigue, fear, and nausea. CONCLUSIONS: The findings of this study indicated that the PicPecc (Pictorial Support in Person-Centered Care for Children) app is a potential solution for providing communicative support to children with long-term illnesses dealing with multiple symptoms and conditions. The interview data also highlighted symptoms that are at risk of being overlooked if they are not included in the mobile app. Further studies are needed to include usability testing and evaluation in hospitals and home care settings.

17.
J Spec Pediatr Nurs ; 26(4): e12334, 2021 10.
Artículo en Inglés | MEDLINE | ID: mdl-33821544

RESUMEN

PURPOSE: For many children, needle procedures are fearful events that are often painful. The first step in symptom management is to assess the child's pain and fear, and the next step is to use coping strategies to provide symptom relief for children who experience or feel pain and fear during procedures. The Children's Action-Reaction Assessment Tool (CARAT) is built on action-reaction strategies. This study aimed to determine the inter-rater reliability of the CARAT when used during needle procedures with 3- to 7-year-old children. DESIGN AND METHODS: We used a quantitative approach in which 21 children were observed by two independent observers during needle procedures to evaluate the inter-rater reliability of the CARAT. Data were analysed with descriptive statistics, and the observation scores were calculated with an intraclass correlation coefficient (ICC) test on SPSS for Windows, version 25. RESULTS: The completed CARAT indicated the use of action-reaction strategies. Neither action nor reaction strategies were frequently used. The parents were seldom involved in the procedure. The inter-rater reliability showed a sufficient correlation between the observers. PRACTICE IMPLICATIONS: This study showed promising results for the inter-rater reliability of the CARAT, which can be used to facilitate care for children. The observational tool can be used to assess the use of action-reaction strategies in conjunction with needle procedures in children aged 3-7 years.


Asunto(s)
Dolor , Padres , Niño , Preescolar , Humanos , Dimensión del Dolor , Reproducibilidad de los Resultados , Encuestas y Cuestionarios
18.
Artículo en Inglés | MEDLINE | ID: mdl-33669455

RESUMEN

Anxiety has been identified as one of the most severe and long-lasting symptoms experienced by hospitalized children with cancer. Self-reports are especially important for documenting emotional and abstract concepts, such as anxiety. Children may not always be able to communicate their symptoms due to language difficulties, a lack of developmental language skills, or the severity of their illness. Instruments with sufficient psychometric quality and pictorial support may address this communication challenge. The purpose of this review was to systematically search the published literature and identify validated and reliable self-report instruments available for children aged 5-18 years to use in the assessment of their anxiety to ensure they receive appropriate anxiety-relief intervention in hospital. What validated self-report instruments can children with cancer use to self-report anxiety in the hospital setting? Which of these instruments offer pictorial support? Eight instruments were identified, but most of the instruments lacked pictorial support. The Visual Analogue Scale (VAS) and Pediatric Quality of Life (PedsQL™) 3.0 Brain Tumor Module and Cancer Module proved to be useful in hospitalized children with cancer, as they provide pictorial support. It is recommended that faces or symbols be used along with the VAS, as pictures are easily understood by younger children. Future studies could include the adaptation of existing instruments in digital e-health tools.


Asunto(s)
Niño Hospitalizado , Neoplasias , Adolescente , Ansiedad/diagnóstico , Ansiedad/epidemiología , Niño , Preescolar , Humanos , Calidad de Vida , Autoinforme
19.
BMJ Open ; 11(5): e042726, 2021 05 04.
Artículo en Inglés | MEDLINE | ID: mdl-33947726

RESUMEN

INTRODUCTION: This study protocol outlines the evaluation of the pictorial support in person-centred care for children (PicPecc). PicPecc is a digital tool used by children aged 5-17 years to self-report symptoms of acute lymphoblastic leukaemia, who undergo high-dose methotrexate treatments. The design of the digital platform follows the principles of universal design using pictorial support to provide accessibility for all children regardless of communication or language challenges and thus facilitating international comparison. METHODS AND ANALYSIS: Both effect and process evaluations will be conducted. A crossover design will be used to measure the effect/outcome, and a mixed-methods design will be used to measure the process/implementation. The primary outcome in the effect evaluation will be self-reported distress. Secondary outcomes will be stress levels monitored via neuropeptides, neurosteroids and peripheral steroids indicated in plasma blood samples; frequency of in-app estimation of high levels of distress by the children; children's use of analgesic medicine and person centeredness evaluated via the questionnaire Visual CARE Measure. For the process evaluation, qualitative interviews will be carried out with children with cancer, their legal guardians and case-related healthcare professionals. These interviews will address experiences with PicPecc in terms of feasibility and frequency of use from the child's perspective and value to the caseworker. Interview transcripts will be analysed using an interpretive description methodology. ETHICS AND DISSEMINATION: Ethical approval was obtained from the Swedish Ethical Review Authority (reference 2019-02392; 2020-02601; 2020-06226). Children, legal guardians, healthcare professionals, policymaking and research stakeholders will be involved in all stages of the research process according to Medical Research Council's guidelines. Research findings will be presented at international cancer and paediatric conferences and published in scientific journals. TRIAL REGISTRATION: ClinicalTrials.gov; NCT04433650.


Asunto(s)
Comunicación , Atención Dirigida al Paciente , Niño , Estudios Cruzados , Humanos , Autoinforme , Suecia
20.
Lymphat Res Biol ; 18(3): 219-225, 2020 06.
Artículo en Inglés | MEDLINE | ID: mdl-31596662

RESUMEN

Background: Early diagnosis of mild lymphedema and treatment are important to prevent its progress. The tissue dielectric constant (TDC), measuring local tissue water in the skin and upper subcutis, has neither been related to the water displacement method (WDM) nor been used to diagnose mild arm lymphedema in patients at risk. Our aims were to evaluate TDC and WDM in combination with palpation, examine the association between TDC and WDM measurements, and compare lymphedema-related factors. Methods and Results: Seventy-two women treated for breast cancer were diagnosed with mild arm lymphedema using skin palpation in combination with TDC from fixed measurement sites (threshold ratio for upper arm ≥1.45 and forearm ≥1.3) and/or WDM (lymphedema relative volume [LRV]: ≥5% to ≤8%). Results revealed that 32 (45%) women were diagnosed by TDC only, 19 (26%) by WDM only, and 21 (29%) by both TDC and WDM. TDC ratios exceeding the threshold were most frequently identified on the medial site of the arm, proximal and distal to the antecubital fossa. TDC and WDM were negatively associated; LRV (r = -0.545, p < 0.001). The women diagnosed by TDC only were diagnosed earlier after surgery (p = 0.003) and had a lower LRV (1.3%) than those diagnosed by WDM only (6.3%) or both TDC and WDM (6.2%; p < 0.001). Conclusions: TDC and WDM can be used together for early diagnosis of arm lymphedema, but TDC is the most valid method, determining the diagnosis earlier after surgery and at a lower arm volume than WDM.


Asunto(s)
Linfedema del Cáncer de Mama/diagnóstico , Neoplasias de la Mama , Palpación , Brazo , Agua Corporal , Femenino , Humanos
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