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1.
Sleep Breath ; 2024 May 14.
Artigo em Inglês | MEDLINE | ID: mdl-38740633

RESUMO

PURPOSE: The aim of this study was to validate the Ethos Brief Index (EBI) in patients with Restless Legs Syndrome (RLS). METHODS: A cross-sectional design, including 788 subjects with RLS (65% women, 70.8 years, SD 11.3) from the Swedish RLS Association, was used. A postal survey was sent out to collect data regarding socio demographics, comorbidities, and RLS-related treatment data. Questionnaires included were EBI, the Restless Legs Syndrome-6 Scale (RLS-6), Restless Legs Syndrome-Quality of Life questionnaire (RLSQoL), the Insomnia Severity Index (ISI), and the Epworth Sleepiness Scale (ESS). The validity and reliability of the EBI were investigated using Rasch and confirmatory factor analysis (CFA) models. Measurement invariance, unidimensionality, and differential item functioning (DIF) across age and gender groups, as well as insomnia, daytime sleepiness, RLS-related QoL and RLS severity were assessed. RESULTS: The results supported the unidimensionality of the EBI in the CFA (i.e., explaining 61.5% of the variance) and the Rasch model. The reliability of the EBI was confirmed using composite reliability and Cronbach's alpha. No DIF was identified for gender, age, insomnia, daytime sleepiness, RLS severity or RLS-related QoL. CONCLUSION: The EBI showed good validity and reliability and operated equivalently for male and female patients with RLS. Accordingly, healthcare professionals can use the EBI as a psychometrically sound tool to explore and identify patient-centered problems related to the whole life situation.

2.
Scand J Caring Sci ; 38(1): 47-56, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37350361

RESUMO

BACKGROUND: In today's complex healthcare organisations there is an increasing recognition of the need to enhance care quality and patient safety. Nurses' competence in demonstrating caring behaviour during patient encounters affects how patients experience and participate in their care. Nurse educators are faced with the challenge of balancing the demand for increasingly complex knowledge and skills with facilitating students' abilities essential to becoming compassionate and caring nurses. AIM: The aim was to describe undergraduate nursing students' development of caring behaviour while participating in a caring behaviour course. METHOD: This pilot study used a quantitative observational design. At a university in Sweden, video-recorded observational data from twenty-five students were collected in the first and last weeks of a full-time five-week Caring Behaviour Course (the CBC). In total, 56-min video-recorded simulation interactions between a student and a standardised patient were coded by a credentialed coder using a timed-event sequential continuous coding method based on the Caring Behaviour Coding Scheme (the CBCS). The CBCS maps the five conceptual domains described in Swanson's Theory of Caring with related sub-domains that align with Swanson's qualities of the Compassionate Healer and the Competent Practitioner. The CBCS contains seventeen verbal and eight non-verbal behavioural codes, categorised as caring or non-caring. RESULTS: Between the two simulations, most verbal caring behaviours increased, and most non-verbal caring behaviours decreased. Statistically significant differences between the simulations occurred in the sub-domains Avoiding assumptions and Performing competently/skilfully in the quality of the Competent Practitioner. Most observed caring behaviours aligned with the Compassionate Healer. CONCLUSION: Generally, the students' development of caring behaviours increased while participating in the CBC. Using a structured observational behavioural coding scheme can assist educators in assessing caring behaviour both in education and in practice, supporting caring as the universal foundation of nursing and a key to patient safety.


Assuntos
Bacharelado em Enfermagem , Estudantes de Enfermagem , Humanos , Bacharelado em Enfermagem/métodos , Projetos Piloto , Empatia , Relações Enfermeiro-Paciente
3.
J Sleep Res ; : e14071, 2023 Nov 01.
Artigo em Inglês | MEDLINE | ID: mdl-37909257

RESUMO

Restless legs syndrome (RLS) is a common neurological disorder characterised by an urge to move arms and legs, usually associated with discomfort, pain, motor restlessness, and sleep disturbance. An individually adapted treatment is needed but difficult to optimise, which makes shared decision-making (SDM) important. However, brief validated instruments on how patients with RLS perceive their involvement in treatment decisions are lacking. Therefore, the aim was to validate two instruments, SURE (Sure of myself, Understand information, Risk-benefit ratio, Encouragement, i.e., to assess decisional conflict) and CollaboRATE (brief patient survey focused on SDM, i.e., to assess SDM), in patients with RLS. A cross-sectional design, including 788 participants with RLS (65% females, mean [SD] age 70.8 [11.4] years) from a national patient organisation for RLS, was used. A postal survey was sent out to collect data regarding weight, height, comorbidities, demographics, and RLS-related treatment data. The following instruments were included: the SURE, CollaboRATE, Restless Legs Syndrome-6 Scale, and eHealth Literacy Scale. Confirmatory factor analysis and Rasch models were used to assess the validity and reliability of the SURE and CollaboRATE. Measurement invariance, unidimensionality, and differential item functioning (DIF) across age, gender, and medication groups were assessed. The SURE and CollaboRATE were both identified as unidimensional instruments with satisfactory internal consistency. No DIF across age and gender was identified, while significant DIF was observed for both the SURE and CollaboRATE regarding medication use categories. However, both the SURE and CollaboRATE are potential instruments to be used in research, but also as reflection tools by healthcare professionals, patients, and students to explore and assess SDM, and support its development in clinical care.

4.
Scand J Caring Sci ; 37(1): 271-281, 2023 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-35348240

RESUMO

RATIONALE: Undergraduate nursing students' learning opportunities to practice caring behaviours to assure compassionate and competent nursing practice with standardised patients are few. Earlier studies primarily focused on practicing communication skills in relation to mental health or developing psychomotor skills while caring for a patient with a specific diagnosis. AIM: The study aim was to describe undergraduate nursing students' experiences of practicing caring behaviours with a standardised patient. METHOD: A sample of forty-eight undergraduate nursing students in semester four at a school of nursing in southern Sweden, enrolled in a full-time, 5-week, on-campus elective caring behaviour course, were at the first and last week individually video-recorded during two caring behaviour simulations encountering a standardised patient. After observing each of their video-recordings, students completed written reflections focusing on their own compassionate and competent verbal and nonverbal caring behaviour. In total, 96 individual written reflections were analysed using qualitative content analysis to describe the experience. RESULTS: One main theme emerged: The challenge of being mindfully present in patient encounters. Four themes further described the experience: A challenging but realistic learning experience, learning the impact of nonverbal behaviour, recognising the complexity of verbal behaviour, and learning to be with the patient instead of only doing for the patient. CONCLUSION: When caring is intertwined with visible and realistic nursing practice in simulations using standardised patients it facilitates undergraduate nursing students learning compassionate and competent caring behaviour. The learning experience opened the students' eyes to the impact of practicing caring, recognising that being with is not the same as doing for the patient, and thus, how challenging it is to be mindfully present in patient encounters. Designing caring behaviour simulations with standardised patients is a feasible and efficacious educational learning didactic to facilitate students' learning caring behaviour and enhancing patients' experiences.


Assuntos
Bacharelado em Enfermagem , Estudantes de Enfermagem , Humanos , Estudantes de Enfermagem/psicologia , Aprendizagem , Empatia , Escolaridade
5.
Scand J Caring Sci ; 37(4): 917-926, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-35072276

RESUMO

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.


Assuntos
Serviços de Assistência Domiciliar , Neoplasias , Assistência Terminal , Criança , Humanos , Pais , Neoplasias/terapia , Morte
6.
J Sch Nurs ; 39(5): 406-414, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-34369177

RESUMO

Students have the right to receive education about sexual and reproductive health and rights (SRHR). The United Nations Agenda 2030 for sustainable development includes goals regarding SRHR, including the right to universal access to sexual and reproductive health care services and gender equality. The study used a qualitative design with an inductive approach. Data were collected through semistructured interviews. The results are presented in three categories and nine subcategories. The categories were "having an open attitude," "organizational prerequisites," and "challenging tasks." An open attitude was required to create confidence for both school nurses and students in SRHR conversations. Organizational prerequisites, such as planning SRHR education with others, were successful. Multicultural meetings and conversations regarding gender identity and sexual orientation were challenging tasks. Increased knowledge of SRHR and national standardized guidelines are suggested to achieve Agenda 2030 SRHR goals and to ensure equity in school health care.


Assuntos
Serviços de Saúde Reprodutiva , Saúde Reprodutiva , Humanos , Feminino , Masculino , Identidade de Gênero , Comportamento Sexual , Direitos Sexuais e Reprodutivos
7.
Eur J Oral Sci ; 130(3): e12859, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-35218581

RESUMO

A visit to the dental clinic may be challenging for a child with Down syndrome due to medical and oral health problems as well as communication problems. The aim of the present study was to explore how parents of children with Down syndrome describe their child's needs in the dental health care setting. In a survey concerning parental experiences with dental health care in Sweden, free comments were analysed with content analysis and resulted in five categories: "Need for continuity of care in dental health care"; "Need for dental health care professionals to have knowledge and expertise in caring for children with Down syndrome and other disabilities"; "Need for dental health care professionals to use a caring approach with children with Down syndrome"; "Need for the child with Down syndrome to be prepared to participate in their dental health care visit" and "Need for the child with Down syndrome to be given the same rights as typically developing children". To support children with Down syndrome in an optimal way, dental health care needs to be tailored to meet the child's unique needs. In addition, dental health care professionals need knowledge of and expertise in the care of children with Down syndrome.


Assuntos
Síndrome de Down , Criança , Atenção à Saúde , Síndrome de Down/terapia , Humanos , Pais , Inquéritos e Questionários , Suécia
8.
Scand J Caring Sci ; 35(4): 1123-1133, 2021 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-33124708

RESUMO

RATIONALE: To maintain patients' dignity and well-being and alleviate suffering, it is essential that healthcare providers engage in caring behaviours. Yet, every year patient boards receive an increasing number of complaints from patients and significant others regarding healthcare providers' non-caring behaviours. Defining and measuring both verbal and nonverbal caring and non-caring behaviour in healthcare delivery is vital to address such complaints. However, no studies were found that incorporated a comprehensive theory of caring to code encounters between healthcare providers and patients. AIM: The aim was to develop and test a Caring Behavior Coding Scheme based on Swanson's Theory of Caring. METHOD: An instrument development process was used for behavioural coding including observational data from thirty-eight video recordings collected in an undergraduate nursing course at a Swedish University. The observational data involved interactions between undergraduate nursing students and a standardised patient. RESULT: The Caring Behavior Coding Scheme (the CBCS), contains seventeen verbal and eight nonverbal behavioural codes, categorised as caring and non-caring in accordance with Swanson's Theory of Caring. Content and face validity were assessed. Timed-event sequential continuous coding was performed in INTERACT software. The coder achieved excellent agreement with the developed gold standard (k = 0.87) and excellent mean inter-rater reliability (k = 0.82). All domains in Swanson's Theory of Caring were observed and coded in the interaction. DISCUSSION/CONCLUSION: The CBCS is a theory-based instrument that contributes to research on healthcare providers' behavioural encounters. It uses verbal and nonverbal caring and non-caring behavioural codes to assess the alignment of both the theory and practice of caring. The CBCS can contribute to both development and measurement of interventions focused on improving healthcare providers' caring behaviour with the intended outcome of patient well-being.


Assuntos
Bacharelado em Enfermagem , Estudantes de Enfermagem , Empatia , Humanos , Reprodutibilidade dos Testes
9.
Child Care Health Dev ; 46(4): 445-456, 2020 07.
Artigo em Inglês | MEDLINE | ID: mdl-31944353

RESUMO

BACKGROUND: Young children's experiences of everyday life with cancer are vital in guiding care. The universal and interdisciplinary language of the International Classification of Functioning (ICF) and the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) has wide reaching effects for the care of young children in need. The aim of this study was to select and validate the content of a clinical assessment tool (CAT) for health and everyday functioning in young children with cancer. METHODS: A comprehensive set of ICF-CY codes (n = 70) mapping everyday function and health was previously identified from the transcripts of 12 interviews with young children with cancer and their parents at a paediatric oncology centre in the west of Sweden. Three transcripts were from data collected shortly after diagnosis, three transcripts from 6 months after diagnosis, three transcripts from 12 months after diagnosis, and three transcripts from 18 months after diagnosis. The present study involved the development of items based on the ICF-CY codes. RESULTS: The CAT consists of 52 items grouped in four dimensions: "the child herself/himself," "the child's everyday life," "the child's need for support," and "the child's contacts with health care." CONCLUSION: The questions correlate well with known research results and highlight areas that are important for health and everyday life for young children with cancer. This tool, based on children's experiences, can be used by both parents and health care personnel such as nurses to highlight aspects of health and function in everyday life for the young child with cancer that otherwise might be missed. This novel approach using the ICF-CY could be used to guide the delivery of care towards living an everyday life with a long-term illness.


Assuntos
Atividades Cotidianas , Indicadores Básicos de Saúde , Avaliação das Necessidades , Neoplasias/fisiopatologia , Neoplasias/psicologia , Qualidade de Vida , Fatores Etários , Pré-Escolar , Feminino , Humanos , Masculino , Neoplasias/complicações , Inquéritos e Questionários , Suécia
10.
Eat Weight Disord ; 25(6): 1583-1592, 2020 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-31673986

RESUMO

PURPOSE: To examine whether weight-related self-stigma (aka weight bias internalization) and insomnia are potential predictors of psychological distress and quality of life (QoL) among Iranian adolescents with overweight (OW)/obesity (OB). To examine whether weight-related self-stigma and insomnia are potential mediators in the relationship between excess weight and health outcomes of distress and QoL. METHODS: All participants (n = 934; 444 males; mean age = 15.7 ± 1.2 years; zBMI = 2.8 ± 1.0) completed questionnaires on weight-related self-stigma and insomnia at baseline. Six months later, they completed questionnaires on psychological distress and QoL to assess health outcomes. Relationships among variables were tested using mediation analyses with bootstrapping method. RESULTS: Weight-related self-stigma significantly mediated the effects of zBMI on psychological distress (effect = 0.22; bootstrapping SE = 0.09; 95% CI = 0.08, 0.45), psychosocial QoL (effect = - 0.64; bootstrapping SE = 0.19; 95% CI = - 1.10, - 0.32), and physical QoL (effect = - 1.35; bootstrapping SE = 0.54; 95% CI = - 2.43, - 0.26). Insomnia also significantly mediated the effects of zBMI on psychological distress (effect = 2.18; bootstrapping SE = 0.31; 95% CI = 1.61, 2.81), psychosocial QoL (effect = - 0.89; bootstrapping SE = 0.33; 95% CI = - 1.60, - 0.28), and physical QoL (effect = - 0.83; bootstrapping SE = 0.42; 95% CI = - 1.69, - 0.02). Full mediations were found in psychosocial QoL; partial mediations were found in psychological distress and physical QoL. CONCLUSIONS: Weight-related self-stigma and insomnia were significant mediators in the effects of excess weight on health outcomes. Therefore, it is important to identify and treat weight-related self-stigma and insomnia for adolescents with OW/OB. LEVEL OF EVIDENCE: Level V, cross-sectional descriptive study.


Assuntos
Angústia Psicológica , Distúrbios do Início e da Manutenção do Sono , Adolescente , Estudos Transversais , Humanos , Irã (Geográfico) , Masculino , Obesidade/complicações , Sobrepeso , Qualidade de Vida
11.
Child Care Health Dev ; 45(5): 644-653, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-30995346

RESUMO

INTRODUCTION: Adolescents need support from family, friends, and teachers to increase their involvement in everyday life. Their environment and their own characteristics also influence their ability to participate in an everyday supportive environment. AIM: The aim of the study was to investigate patterns of support from parents, teachers, and very important persons such as peers to the ability of adolescents to participate in everyday life, as well as the importance of interpersonal relations as experienced by the adolescents. METHOD: The study has a cross-sectional design. The data compiled and analysed in this study are part of a longitudinal study of adolescents and their development into adults-LoRDIA (Longitudinal Research on Development In Adolescence). A combination of person- and variable-oriented design was used to capture patterns of support. RESULTS: Adolescents with a complicated home situation and low economic prerequisites who received little support from parents and friends participated to a lower degree in home activities. A substantial number of these adolescents had self-reported neurodevelopmental disorders and, as a group, were more often exposed to harassment. However, these adolescents participated to a higher extent in school activities, although they received little support from the teachers. The adolescents who received most support from parents and teachers were those with a country of origin other than Sweden and those who lived with both of their parents and had more siblings than average. However, this did not mean that they participated to a higher extent in home and school activities.


Assuntos
Pessoas com Deficiência/reabilitação , Relações Interpessoais , Transtornos do Neurodesenvolvimento/reabilitação , Apoio Social , Adolescente , Criança , Estudos Transversais , Saúde da Família , Feminino , Humanos , Masculino , Transtornos do Neurodesenvolvimento/psicologia , Poder Familiar , Pais/psicologia , Professores Escolares/psicologia , Assédio Sexual , Fatores Socioeconômicos , Suécia
12.
J Pediatr Nurs ; 42: e97-e102, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-29627285

RESUMO

The Pediatric Inventory for Parents (PIP) measures parental stress related to caring for a child with an illness. However, no Swedish translation is available. PURPOSE: This study reports a Swedish translation of the PIP and psychometric properties of the instrument. DESIGN AND METHODS: This is a descriptive/methodological paper. The PIP was translated and culturally adapted to Swedish, and comprehensibility was tested. Data were collected twice from 48 parents of children with different illnesses, and initial psychometric properties of the instrument were examined. The IES-R (Impact of Event Scale-Revised) was used for concurrent validity. RESULTS: The Swedish version of the PIP demonstrated good correlations with the IES-R, and temporal changes were similar. Endorsement frequencies and test-retest were also satisfactory. When comparing groups of parents, the parents of children with cancer were statistically significantly more distressed, both on total score and for emotional distress and role function. Discriminative validity was demonstrated by comparing parents of children with cancer with parents of children with other diseases. CONCLUSIONS: The Swedish version of the PIP seems to be a valid and reliable instrument. However, as we used relatively small sample, for the future, we suggest further testing with larger samples. PRACTICE IMPLICATIONS: Clinicians and researchers seeking to measure parental distress in chronic illness could use the Swedish version of the PIP.


Assuntos
Doença Crônica/enfermagem , Estresse Psicológico/diagnóstico , Inquéritos e Questionários/normas , Adulto , Criança , Pré-Escolar , Análise Fatorial , Feminino , Humanos , Masculino , Psicometria , Reprodutibilidade dos Testes , Suécia , Traduções
13.
J Pediatr Nurs ; 30(4): 550-9, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-25448474

RESUMO

The purpose of this manuscript is to analyze researchers' suggestions for clinical implications of their findings as stated in recent published articles on nursing and psychosocial research within the setting of Swedish pediatric oncology. Identified categories included staff awareness of the effects of child illness on families; systems for care improvement; provision of quality of care, education and support; and empowerment of children and families. In order to be able to realize these clinical suggestions, expanded research is needed as well as continued education and support for staff.


Assuntos
Pesquisa em Enfermagem , Enfermagem Oncológica , Enfermagem Pediátrica , Criança , Enfermagem Baseada em Evidências , Humanos , Relações Enfermeiro-Paciente , Poder Psicológico , Melhoria de Qualidade , Qualidade da Assistência à Saúde , Apoio Social , Suécia
14.
BMC Nurs ; 14: 69, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-26770070

RESUMO

BACKGROUND: Parents of children with cancer experience a demanding situation and often suffer from psychological problems such as stress. Trying to coping with the complex body of information about their child's disease is one factor that contributes to this stress. The aim of this study is to evaluate an intervention for person-centred information to parents of children with cancer that consists of four sessions with children's nurses trained in the intervention method. METHODS/DESIGN: This is a multi-centre RCT with two parallel arms and a 1:1 allocation ratio. The primary outcome is illness-related parental stress. Secondary outcomes are post-traumatic stress symptoms, anxiety, depression, satisfaction with information, expected and received knowledge, and experiences with health care providers. A process evaluation is performed to describe experiences and contextual factors. Data are collected using web questionnaires or paper forms according to the parents' preference, audio recording of the intervention sessions, and qualitative interviews with parents and the intervention nurses. DISCUSSION: Few studies have evaluated information interventions for parents of children with cancer using large multi-centre RCTs. This intervention is designed to be performed by regular staff children's nurses, which will facilitate implementation if the intervention proves to be effective. TRIAL REGISTRATION: Clinical trials NCT02332226 (December 11, 2014).

15.
J Sch Nurs ; 30(5): 358-65, 2014 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-24051582

RESUMO

In Sweden, school nurses are part of the School Health Service with the main objective of health promotion to support students' health and attainment of educational goals. The aim in this phenomenological study was to illuminate the experiences of school nurses in promoting the health and well-being of adolescent girls. Seventeen school nurses were interviewed, both in groups and individually, to facilitate personal disclosure and expressions from their lived experiences. To achieve their goal of improving the health of adolescent girls, school nurses require flexibility in their approach and in endeavoring to make a positive difference they experience many challenges. This study concluded that school nurses can tactfully provide adolescent girls with knowledge and health guidance adjusted to individual needs and empowering the individual girl to participate in her own health process.


Assuntos
Adaptação Psicológica , Promoção da Saúde/métodos , Papel do Profissional de Enfermagem , Serviços de Saúde Escolar/organização & administração , Serviços de Enfermagem Escolar/organização & administração , Estresse Psicológico , Estudantes/psicologia , Adolescente , Feminino , Humanos , Suécia
16.
Front Pain Res (Lausanne) ; 5: 1372167, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38665784

RESUMO

Introduction: Early recognition of pain in children is crucial, and their self-report is the primary source of information. However, communication about pain in healthcare settings can be challenging. For non-verbal communication regarding different symptoms, children prefer digital tools. The electronic Faces Thermometer Scale (eFTS) utilizes a universal design with colors, face emojis, and numbers on an 11-point scale (0-10) for pain assessment. The aim of this study was to establish content validity of the eFTS for pain assessments in children. Methods: A mixed methods design was used. The study took place at a university hospital in eastern Sweden, involving 102 children aged 8-17 years who visited outpatient clinics. Participants were presented with 17 pictures representing varying pain levels and asked to assess hypothetical pain using the eFTS. A think-aloud approach was employed, prompting children to verbalize their thoughts about assessments and the eFTS. Quantitative data were analyzed using descriptive and comparative statistics, together with a qualitative approach for analysis of think-aloud conversations. Results: A total of 1,734 assessments of hypothetical pain using the eFTS were conducted. The eFTS differentiated between no pain (level 0-1) and pain (level 2-10). However, no clear agreement was found in the differentiation between hypothetical pain intensity levels (level 2-10). The analysis revealed that children utilized the entire scale, ranging from no pain to high pain, incorporating numbers, colors, and face emojis in their assessments. Discussion: The variability in assessments was influenced by prior experiences, which had an impact on the statistical outcome in our study. However, employing the think-aloud method enhances our understanding of how children utilize the scale and perceive its design, including the incorporation of emotion-laden anchors. Children express a preference for using the eFTS to assess their pain during hospital visits.

17.
J Fam Nurs ; 19(1): 29-52, 2013 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-23076622

RESUMO

The aim of this study was to describe discursively constructed interactions between parents and health care professionals (HCPs) in a pediatric oncology ward. Field notes from 70 focused participant observations and 16 informal interviews with 25 HCPs interacting with 25 parents of children with cancer were analyzed using discursive psychology. Six dominant interpretative repertoires (flexible parts of discourses used in everyday interaction) were found. Repertoires used by the HCPs were child, parent, or family oriented, mirroring the primary focus of the interaction. Parents used a spokesperson repertoire to use their own expertise to talk on behalf of the child; an observer repertoire, in which they kept in the background and interfered only when needed; or a family member repertoire to position themselves on a level equal to the ill child. The results are discussed in relation to philosophies influencing pediatric nursing, such as family-centered nursing and child-centered nursing.


Assuntos
Enfermagem Familiar/psicologia , Conhecimentos, Atitudes e Prática em Saúde , Pessoal de Saúde/psicologia , Neoplasias/enfermagem , Pais/psicologia , Relações Profissional-Família , Relações Profissional-Paciente , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Pessoa de Meia-Idade , Enfermagem Pediátrica , Inquéritos e Questionários , Suécia , Adulto Jovem
18.
J Pediatr Hematol Oncol Nurs ; 40(6): 400-410, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36731493

RESUMO

Background: Conveying information to parents is a core part of pediatric oncology nursing; however, most published interventions do not tailor information to individual parental needs. Objective: To evaluate the effect on parental illness-related stress of person-centered information provided to parents of children with cancer. Methods: A multicenter, unblinded randomized controlled trial with two parallel arms recruiting parents of children diagnosed within the past two months from two tertiary children's cancer centers in Sweden. Parents were randomized using sealed envelopes prepared and opened by an independent person. Parents in the intervention arm met four times with experienced nurses trained in the intervention, whereas controls received standard care. The effect of the intervention was measured five times regarding parents' illness-related stress. Secondary outcomes were psychosocial states, experiences with healthcare providers, and received information. Further, we collected process data on the intervention's content and fidelity. Results: Of the 32 parents included and analyzed in the study, 16 were randomized to the intervention, which addressed a broad variety of topics. The intervention increased parents' knowledge about the biophysiological and functional aspects of their child's illness, but it had no measurable effect on their distress. Discussion: Although fidelity to the intervention protocol was sufficient, the study was flawed by recruitment difficulties, primarily due to organizational factors, which may have prevented us from observing any possible effects on psychosocial distress. Having a person-centered perspective could be promising for future studies aimed at parents of children with cancer. (Registered at Clinicaltrials.gov, number NCT02332226.).


Assuntos
Neoplasias , Pais , Humanos , Criança , Pais/psicologia , Neoplasias/terapia , Oncologia , Suécia , Enfermagem Oncológica
19.
Compr Child Adolesc Nurs ; 46(2): 114-125, 2023 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-36811905

RESUMO

Acquiring information about one's child's cancer diagnosis is a complex and ever-changing process, and parents' needs change over time. As yet, we know little about what information parents require at different stages of their child's illness. This paper is part of a larger randomized control trial studying the parent-centered information given to mothers and fathers. The aim of this paper was to describe the topics addressed in person-centered meetings between nurses and parents of children with cancer and how those changed over time. Using qualitative content analysis, we analyzed nurses' written summaries of 56 meetings with 16 parents and then computed for each topic the percentage of parents who brought it up at any time during the intervention. The main categories were Child's disease and treatment (addressed by 100% of parents), Consequences of treatment (88%), Emotional management for the child (75%), Emotional management for the parent (100%), Social life of the child (63%), and Social life of the parent (100%). Different topics were addressed at different points in time, and fathers raised more concerns about the child's emotional management and the consequences of treatment than mothers. This paper suggests that parental information demands change over time and differ between fathers and mothers, implying that information should be person-centered. Registered at Clinicaltrials.gov (NCT02332226).


Assuntos
Mães , Neoplasias , Feminino , Criança , Humanos , Mães/psicologia , Pais/psicologia , Emoções , Neoplasias/psicologia
20.
J Pediatr Hematol Oncol Nurs ; 40(2): 91-99, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36718504

RESUMO

Background: Nausea is a problematic side effect of childhood cancer treatment. However, it is not clear what interventions and assessments pediatric oncology nurses make when caring for a child with nausea. A person-centered approach can illuminate nausea management in pediatric care. The aim was to investigate how pediatric nurses retrieve the patient's narrative, establish partnership, and document nausea in hospitalized children with cancer. Methods: Individual interviews with nurses were conducted and analyzed using deductive content analysis with the framework of person-centered care. Results: The pediatric nurses described retrieving the patient's narrative regarding their nausea by listening to and observing the child. The pediatric nurses tried to establish a partnership with the child by allowing previous knowledge and the child's own preferences guide the interventions that focus on decreasing the child's nausea. The pediatric nurses also documented the effect of the given interventions and described the child's nausea using subjective words. When planning for the child's care it was rare for the nurses to have a documented care plan, but they did review documentation of previously administered interventions to plan for future care. Discussion: The results highlight the pediatric nurses' willingness to listen to the child, but also emphasize the need to further include the child and the parents in the partnership and documentation of nausea management. Collaboration with the child and the parents contributes to higher quality care and a partnership with trust.


Assuntos
Neoplasias , Enfermeiros Pediátricos , Cuidados de Enfermagem , Humanos , Criança , Pais , Neoplasias/complicações , Criança Hospitalizada
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