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1.
BMC Med Ethics ; 25(1): 20, 2024 02 19.
Artículo en Inglés | MEDLINE | ID: mdl-38374022

RESUMEN

BACKGROUND: There is considerable variation in the functionality of bioethical services in different institutions and countries for children in hospital, despite new challenges due to increasing technology supports for children with serious illness and medical complexity. We aimed to understand how bioethics services address bioethical concerns that are increasingly encountered in paediatric intensive care. METHODS: A qualitative descriptive design was used to describe clinician's perspectives on the functionality of clinical bioethics services for paediatric intensive care units. Clinicians who were members of formal or informal clinical bioethics groups, or who were closely involved with the process of working through ethically challenging decisions, were interviewed. Interviews took place online. Resulting transcripts were analysed using thematic analysis. RESULTS: From 33 interviews, we identified four themes that described the functionality of bioethics services when a child requires technology to sustain life: striving for consensus; the importance of guidelines; a structure that facilitates a time-sensitive and relevant response; and strong leadership and teamwork. CONCLUSIONS: Clinical bioethics services have the potential to expand their role due to the challenges brought by advancing medical technology and the increasing options it brings for treatment. Further work is needed to identify where and how bioethics services can evolve and adapt to fully address the needs of the decision-makers in PICU.


Asunto(s)
Bioética , Niño , Humanos , Investigación Cualitativa , Unidades de Cuidado Intensivo Pediátrico , Toma de Decisiones , Consenso
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.
Health Expect ; 2023 Nov 20.
Artículo en Inglés | MEDLINE | ID: mdl-37984806

RESUMEN

INTRODUCTION: Adolescents with Type 1 diabetes are a cohort whose self-management of their diabetes care often declines during adolescence which can lead to adverse health outcomes. Research indicates that providers find it challenging to engage adolescents in communication exchanges during triadic encounters in diabetes clinics. Our study aimed to explore adolescents, parents, and providers' experiences of clinic encounters. METHODS: A qualitative study was conducted with a convenience sample of 13 adolescents with Type 1 diabetes (aged 11-17), 14 parents, and seven providers. Participants were recruited from two outpatient diabetes clinics in two urban children's hospitals, Ireland. Data were obtained using a combination of interviews and focus groups. Data were analysed thematically. RESULTS: Adolescents and their parents appeared to hold both positive and negative experiences of diabetes clinic encounters. Providers reported challenges associated with engaging adolescents in communication exchanges. The structure, focus and style of clinic encounters created barriers that potentially led to suboptimal adolescent participation and impaired provider-adolescent communication during clinic visits. CONCLUSIONS: The findings provide insights into the challenges associated with adolescents' engagement in communication encounters in diabetes clinics. Healthcare providers could encourage adolescents to be more actively involved in their diabetes management, by taking an adolescent-centred approach and creating a nonjudgemental milieu. Focusing on adolescent's agenda could lead to more meaningful and relevant discussions between providers and adolescents and ensure more tailored education in the time available. Adolescence is a risky period for nonadherence and adverse health complications; therefore, it is critical that providers make every contact count in diabetes clinic encounters. PATIENT OR PUBLIC INVOLVEMENT: The study's design and delivery were guided by two advisory groups, comprising (1) five adolescents living with Type 1 diabetes (T1D) and (2) five parents of an adolescent with T1D.

4.
J Psychosoc Oncol ; 39(4): 571-585, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-34039248

RESUMEN

PURPOSE: This paper explores parents' experiences of breaking news and communicating to the child with cancer and their siblings, and identifies the supports parents request to help them in this role. This paper represents one component of a wider action research study which employed mixed methods to explore supports needed by parents of children with a cancer diagnosis in the Republic of Ireland. RESEARCH DESIGN: This paper reports on the survey phase of the study, which involved the distribution of a postal survey to 550 families of children in cancer treatment and remission. This survey included four open-ended questions exploring parents' experiences of breaking news and communicating about the illness to the ill child and his/her siblings. Descriptive statistics on the profile of the parents were generated with computer software package SPSS and qualitative responses were analyzed using the survey questions as the initial framework. FINDINGS: Parents identified four interventions that helped ease the distress of these difficult conversations: coaching, resources, team engagement, and play therapy. Parents expressed concern for siblings, describing them as "suffering" and "forgotten". Parents requested four sibling-specific interventions: the creation of resources for siblings, therapeutic support, coaching for parent-sibling conversations, standardize a family meeting with the multi-disciplinary team that includes siblings. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS: This paper demonstrates how the practical supports requested by parents which are consistent with the principles embedded within the internationally defined psychosocial standards of care could be translated into practice when supporting parents to communicate with children in the context of pediatric cancer.


Asunto(s)
Neoplasias , Hermanos , Niño , Comunicación , Familia , Femenino , Humanos , Masculino , Neoplasias/terapia , Padres
5.
J Psychosoc Oncol ; 38(6): 761-781, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-32419648

RESUMEN

PROBLEM IDENTIFICATION: This systematic review will examine the social support needs of bereaved parents in the specific context of pediatric cancer by synthesizing the qualitative evidence. Social support encompasses emotional, practical, informational, and meaning-making support needs. LITERATURE SEARCH: The Joanna Briggs Institute procedures for conducting qualitative systematic reviews guided every stage of this review. Four databases (PsychInfo, CINAHL, Pubmed, and ASSIA) were systematically searched, in addition to the gray literature and scoping review. Through a five-step critical appraisal process 11 out of 668 potential articles were identified as meeting the inclusion criteria. DATA EVALUATION/SYNTHESIS: Relevant findings were synthesized with a thematic-synthesis approach. Findings, which follow the journey of bereaved parents integrated under the core-category "Needs." This encompasses of four higher-level categories: Last days: Parent needs when caring for their dying child Rest in peace: Parent needs during the child's death Feeling abandoned: Parent needs for contact after the child's death Searching for Meaning: Parents needs when making sense of loss. CONCLUSION: Informational support needs is largely unexplored in academic literature. Staff in the treating-hospital are central in offering bereavement-support to parents, who may otherwise feel that they have lost their second home (hospital) and second family (staff).


Asunto(s)
Aflicción , Evaluación de Necesidades , Neoplasias/mortalidad , Relaciones Padres-Hijo , Padres/psicología , Humanos , Investigación Cualitativa
6.
J Wound Ostomy Continence Nurs ; 47(4): 329-335, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-33290010

RESUMEN

PURPOSE: To describe relationships between subepidermal moisture (SEM) and visual skin assessment of pressure injury (PI) in children. DESIGN: Prospective descriptive study. SUBJECTS AND SETTING: Twenty-four participants aged 8 to 16 years recruited from a pediatric orthopedic unit in a children's hospital in Ireland. METHODS: Subepidermal moisture measured with the SEM scanner (Bruin Biometrics, Los Angeles, California) ranged from 0 to 7 picoFarads [pF], and visual observation of trunk and heels occurred daily for 3 days after admission to the unit and/or after surgery. Skin was assessed for discoloration categorized as blanchable erythema, stage 1 PI, or deep tissue injury (DTI). Any open wound PI was classified as stage 2, 3, 4, or unstageable. Demographic, medical, and pain data were collected. Chi-square test, t tests, analysis of variance, and regression were used to describe data and examine relationships. RESULTS: Participants were pediatric patients; 100% (n = 24) were white, 62% (n = 15) were female, 8 to 16 years of age (mean = 12.5 ± 2.5 years), and 29% (n = 7) had fractures and 71% (n = 17) surgery diagnoses. Blanchable erythema incidence was 21% (n = 5) and stage 1 PI incidence was 42% (n = 10); nearly all at heels. Deep tissue injury incidence was 4% (one sacral DTI). Stage 2 or greater PI incidence was 4% (one heel stage 2 PI). For skin that was assessed as normal in this pediatric population, SEM for trunk was 2.65 to 2.76 pF and for heels 2.37 to 2.41 pF. Subepidermal moisture for blanchable erythema and stage 1 PI was higher (range, 3.2-3.7 pF) and significant at trochanters and heels (left trochanter: P = .003; right trochanter: P = .02; right and left heels: P = .000). Nominal regression, controlling for participant and assessment day, showed SEM a predictor of erythema and stage 1 PI at heels. We also found that SEM was higher with pain (significant at sacrum and heels). CONCLUSIONS: In this pediatric population, SEM values over skin assessed as normal are lower than SEM values reported for normal skin in adults, 2.37 to 2.76 pF. Subepidermal moisture was significantly higher for blanchable erythema and stage 1 PI at trochanters and heels, and with the presence of pain at sacrum and heels. We recommend that SEM should be examined for detecting PIs in pediatric populations; SEM and pain should be explored in larger pediatric and adult populations.


Asunto(s)
Eritema/etiología , Úlcera por Presión/etiología , Piel/metabolismo , Adolescente , Niño , Eritema/prevención & control , Femenino , Humanos , Irlanda , Masculino , Pediatría , Úlcera por Presión/patología , Úlcera por Presión/prevención & control , Estudios Prospectivos , Piel/patología , Cuidados de la Piel
7.
Eur J Pediatr ; 177(11): 1641-1652, 2018 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-30091109

RESUMEN

Complex care in the arena of child health is a growing phenomenon. Although considerable research is taking place, there remains limited understanding and agreement on the concept of complex care needs (CCNs), with potential for ambiguity. We conducted a systematic concept analysis of the attributes, antecedents, and consequences of children's CCNs from a multidisciplinary perspective. Our data sources included PubMed, Cumulative Index to Nursing and Allied Health Literature, and PsycINFO. Inclusion criteria included publications in peer-reviewed journals between January 1990 and December 2017, written in the English language. One hundred and forty articles were included. We found that children's CCNs refer to multidimensional health and social care needs, in the presence of a recognized medical condition or where there is no unifying diagnosis.Conclusion: Children's CCNs are individual and contextualized, are continuing and dynamic, and are present across a range of settings, impacted by family and healthcare structures. There remain extensive challenges to caring for these children and their families, precluding the possibility that any one profession can possess the requisite knowledge or scope to singularly provide high-quality competent care. What is Known: • Complex care is a growing phenomenon and population prevalence figures show that there is an increasing number of children with complex care needs (CCNs). However, the concept has not been systematically analyzed before, leaving it generally ill-defined and at times confusing. What is New: • This is the first time this concept has been systematically analyzed and this analysis provides a much-needed theoretical framework for understanding the multidimensional nature of CCNs in children. • Children's CCNs refer to multidimensional health and social care needs in the presence of a recognized medical condition or where there is no unifying diagnosis. They are individual and contextualized, are continuing and dynamic, and are present across a range of settings, impacted by family and healthcare structures. It is clear that the very nature of CCNs precludes the possibility that any one profession or discipline can possess the requisite knowledge or scope for high-quality competent care for this population.


Asunto(s)
Servicios de Salud del Niño , Atención a la Salud/métodos , Necesidades y Demandas de Servicios de Salud , Cuidados a Largo Plazo/métodos , Niño , Preescolar , Enfermedad Crónica/terapia , Familia , Humanos , Lenguaje , Calidad de la Atención de Salud
8.
J Clin Nurs ; 25(1-2): 186-93, 2016 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-26769206

RESUMEN

AIMS AND OBJECTIVES: To explore nurses' experiences of being involved in a clinically based randomised-controlled trial in a children's hospital. BACKGROUND: Numerous studies have explored the barriers to research utilisation by nurses. However, there is little information available on the methodological challenges and practical implementation of a study in a busy clinical setting. DESIGN: A qualitative exploratory descriptive design using semi-structured interviews was adopted. METHODS: A purposeful sample of eight nurses responsible for implementing the research protocols, the consent process and data collection for the randomised-controlled trial were interviewed between March-June 2013. Data were analysed using a thematic network analysis framework. RESULTS: The analysis of the data yielded the global theme of 'Expectations vs. Reality' as participants discussed their experience of being part of a nurse-led randomised-controlled trial in a busy children's burns service. This global theme arose from three organising themes: developing nursing practice; enhanced research knowledge and time to engage. CONCLUSIONS: The findings from this study suggest that nurses in a busy tertiary children's hospital were generally very positive about being part of a nurse-led randomised-controlled trial. Although the benefits outweighed the challenges of engaging in research for the nurses in this study, this level of commitment and motivation can be difficult to maintain. Collaboration with nurses in clinical practice and the development of support structures can help to promote sustainable engagement in research. RELEVANCE TO CLINICAL PRACTICE: The findings highlight the importance of developing robust structures which support nurses at clinical level to engage in research without feeling they must choose between competing priorities of patient care and research activity.


Asunto(s)
Actitud del Personal de Salud , Rol de la Enfermera , Enfermería Pediátrica , Ensayos Clínicos Controlados Aleatorios como Asunto , Adulto , Niño , Femenino , Hospitales Pediátricos , Humanos , Entrevistas como Asunto , Masculino
9.
J Pediatr Nurs ; 29(4): 301-8, 2014.
Artículo en Inglés | MEDLINE | ID: mdl-24486031

RESUMEN

This paper is a report of a study which identified research priorities for children's nursing in an acute care setting in Ireland. A limited number of studies have examined research priorities for children's nursing. This study was undertaken against the backdrop of significant proposed changes to the delivery of children's healthcare. A three round Delphi survey design was used to identify and rate the importance of research priorities for children's nursing. In round I participants were asked to identify five of the most important research priorities for children's nursing. Participants in round II were asked to rate the importance of each research priority on a 7-point Likert scale. In round III participants were presented with the mean score of each research priority from the second questionnaire, and again asked to consider the importance of each topic on a 7-point Likert scale. The aim was to reach consensus on the priorities. The top three priorities identified were recognition and care of the deteriorating child, safe transfer of the critically ill child between acute health care facilities, and the child and family's perceptions of care at end-of life. The wide variation of priorities reflects the scope of care delivery of children's nurses and mirrors many global care concerns in caring for children.


Asunto(s)
Prioridades en Salud , Investigación en Enfermería/normas , Enfermería Pediátrica/normas , Adulto , Técnica Delphi , Humanos , Irlanda , Persona de Mediana Edad , Investigación en Enfermería/tendencias , Enfermería Pediátrica/tendencias , Competencia Profesional , Encuestas y Cuestionarios , Adulto Joven
10.
Diabetes Res Clin Pract ; 190: 109985, 2022 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-35809690

RESUMEN

AIMS: To investigate adolescents' communication with healthcare providers (HCPs) and co- design a question prompt list as one part of an intervention to increase patient participation and communication at diabetes clinic visits. METHODS: Using an adolescent-led co-design approach we conducted interviews and focus groups with adolescents, parents, and healthcare providers (HCPs) and held workshops with both a Youth Advisory Group (YAG) and a Parent Advisory Group (PAG). RESULTS: Adolescents and parents identified challenges categorised into four themes: negative experience communicating with HCPs, lacking patient education leading to disinterest, low self-confidence out of fear of being wrong and forgetting to ask question(s). Adolescents identified that a Question Prompt List (QPL) could help them to ask questions, be more confident and participate more. The design process was an iterative development that engaged all stakeholders. Parents and HCPs assumed adolescents had greater knowledge about diabetes than they had in reality. CONCLUSIONS: Divergence in perceptions between adults and adolescents regarding patient knowledge of diabetes care demonstrates the importance of encouraging adolescents to ask the questions that matter to them. The QPL could be a useful means of supporting adolescents to actively participate in clinic encounters with healthcare providers.


Asunto(s)
Comunicación , Diabetes Mellitus , Adolescente , Adulto , Atención Ambulatoria , Instituciones de Atención Ambulatoria , Niño , Humanos , Padres , Participación del Paciente
11.
Nurse Educ Today ; 119: 105569, 2022 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-36155211

RESUMEN

BACKGROUND: Children with life-limiting conditions are a unique population with multiple health and social care needs. Key literature indicates the need for education to support registered nurses providing care, including palliative care, to these children. In response to the COVID-19 pandemic, a palliative care programme was converted to an online programme, adopting a blended approach between national and regional facilitators. OBJECTIVES: To assess nurses' satisfaction with a re-designed palliative care programme centred around the care of children with life-limiting conditions, including their perceptions of the online format. DESIGN AND METHODS: A descriptive correlational design and online survey was used to explore the participants' perception of the content and online delivery of the Care of the Child with a Life-Limiting Condition programme. Nine sessions, comprised of five national and four regional webinars, were delivered. RESULTS: Attendees registered (n = 169) from throughout the Republic of Ireland, with 130 attending all webinars. Attendees stated online delivery of education increased their accessibility to highly qualified experts. The short, concise nature of sessions was well received. Online delivery and recorded sessions contributed to convenience with the ability to access and process information in attendees' own time being welcomed. However, the negative impact of losing face-to-face interactions was noted, including the opportunity to build relationships with colleagues caring for children with life-limiting conditions. CONCLUSIONS: Results suggest that the redesigned online programme contributed to participants' knowledge, encouraged participation and increased accessibility. An e-Learning model enables specialised education to be more equitable and accessible, ensuring regional areas are not disadvantaged due to geographical remoteness from tertiary educational centres. However, the lack of face-to-face contact was acknowledged as a hindrance to socialisation and networking. When developing future programmes, focus should be put on creating opportunities for networking and social development to compensate for the lack of face-to-face contact.


Asunto(s)
COVID-19 , Educación en Enfermería , Enfermería de Cuidados Paliativos al Final de la Vida , Niño , Humanos , Actitud del Personal de Salud , COVID-19/epidemiología , COVID-19/prevención & control , Educación a Distancia , Educación en Enfermería/organización & administración , Enfermería de Cuidados Paliativos al Final de la Vida/educación , Investigación en Educación de Enfermería , Investigación en Evaluación de Enfermería , Pandemias , Satisfacción Personal , Enfermeras y Enfermeros/psicología , Irlanda/epidemiología
12.
Patient Educ Couns ; 104(9): 2170-2176, 2021 09.
Artículo en Inglés | MEDLINE | ID: mdl-33640232

RESUMEN

BACKGROUND: Research on long-term health conditions indicates that adolescents are not actively involved during their medical visits. Active involvement is essential because this can help adolescents learn how to self-manage their treatment plan. OBJECTIVE: To co-design a video intervention to improve youth question-asking and provider education during paediatric diabetes visits. PATIENT INVOLVEMENT: A participatory-led approach was used to co-design the video, through a combination of interviews/ focus groups and the establishment of a Youth Advisory Group. METHODS: First, focus groups and one-to-one interviews were held with adolescents, parents and healthcare providers. Second, two workshops were held with the Youth Advisory Group, Parent Advisory Group and stakeholders on script design. Finally, an iterative development of the video took place between the research team, videographer, both advisory groups and the steering committee. There were three rounds of feedback before the video was finalised. RESULTS: Adolescents' content preferences included: 1) message of empowerment; 2) managing your diabetes so you can get on with the fun stuff in life; 3) Promoting independence; 4) Reasons for not speaking at clinic visits and reassurance; 5) Becoming comfortable to speak and ask questions at clinic visits; 6) Practical advice on how to ask questions. Formatting preferences included that the video should be short, divided into segments, with adolescents with diabetes acting in it, and speaking directly to the camera. DISCUSSION: Identifying and reflecting adolescents' needs and preferences for engagement with healthcare providers was critical in the development process. Adolescents' participation in the co-design process was pivotal to the acceptability of the intervention for adolescents with diabetes. PRACTICAL VALUE: The intervention may increase adolescents' participation in communication and interactions with healthcare providers, which may help them to be more active in the self-management of their condition.


Asunto(s)
Comunicación , Diabetes Mellitus Tipo 1 , Adolescente , Atención Ambulatoria , Niño , Diabetes Mellitus Tipo 1/terapia , Humanos , Padres , Participación del Paciente
13.
J Clin Nurs ; 19(19-20): 2907-15, 2010 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-20597999

RESUMEN

AIMS AND OBJECTIVES: The aim of this phenomenological study was to explore the emotions experienced by children's nurses when caring for children with burns, in addition to ascertaining how the nurses dealt with these emotions. BACKGROUND: The nature of nursing practice is such that it inevitably generates some form of emotional response in nurses. The literature reveals that the manner nurses deal with their emotional experiences can impact on their nursing care. DESIGN: The study used Husserlian phenomenology to explore the emotional experiences of eight purposively selected children's nurses who have worked on the burns unit of an Irish paediatric hospital. METHODS: Data were collected using in-depth, unstructured interviews and analysed using Colaizzi's seven stage framework. RESULTS: The phenomenon of participants' emotional experiences is captured in four themes: (1) caring for children with burns, (2) supporting parents, (3) sustaining nurses' emotional well-being, and (4) learning to be a burns nurse. Nursing children with burns generated a myriad of emotions for participants. Burns dressing-changes, managing burn-related pain, supporting parents and the impact of busy workloads on the emotional care of children and their parents emerged as the most emotionally challenging aspects of participants' role. Participants recognised the need to manage their emotional responses and spoke of the benefits of a supportive nursing team. CONCLUSIONS: The findings offer insights into both the rewarding and challenging aspects of nursing children with burns. Nurses in this environment must be supported to recognise and manage their emotional responses to their work. RELEVANCE TO CLINICAL PRACTICE: Helping nurses to manage the emotional consequences of their work will help to sustain their emotional well-being, enhance the care received by children and also enable nurses to support parents in their role as partners in care.


Asunto(s)
Quemaduras/enfermería , Emociones , Enfermeras y Enfermeros/psicología , Adolescente , Niño , Preescolar , Humanos , Lactante , Irlanda
14.
Lancet Child Adolesc Health ; 2(11): 832-838, 2018 11.
Artículo en Inglés | MEDLINE | ID: mdl-30336897

RESUMEN

This Viewpoint presents and discusses the development of the first core principles and standards for effective, personalised care of children living with complex care needs in Europe. These principles and standards emerged from an analysis of data gathered on several areas, including the integration of care for the child at the acute-community interface, the referral-discharge interface, the social care interface, nursing preparedness for practice, and experiences of the child and family. The three main principles, underpinned by a child-centric approach, are access to care, co-creation of care, and effective integrated governance. Collectively, the principles and standards offer a means to benchmark existing services for children living with complex care needs, to influence policy in relation to service delivery for these children, and to provide a suite of indicators with which to assess future service developments in this area.


Asunto(s)
Servicios de Salud del Niño , Enfermedad Crónica/terapia , Prestación Integrada de Atención de Salud , Necesidades y Demandas de Servicios de Salud , Atención Primaria de Salud , Niño , Servicios de Salud del Niño/normas , Prestación Integrada de Atención de Salud/normas , Europa (Continente) , Humanos , Atención Primaria de Salud/normas , Relaciones Profesional-Familia , Garantía de la Calidad de Atención de Salud , Apoyo Social
15.
Compr Child Adolesc Nurs ; 40(4): 285-293, 2017 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-29058506

RESUMEN

Parents of children with complex care needs are generally willing to participate in research studies about their experiences; however, they are often challenged in their capacity to participate as they struggle to find time for family life. In our research with parents to explore their experience of transitioning to home, we deliberately sought an approach that would reduce the imposition on parents, while gaining insightful interpretations of their experiences. This article reflects on our experience of the process of discovering, analyzing, and interpreting parents' perspectives of their journey to home, when interviewed by telephone. Applying the voice-centered relational method of qualitative analysis, accounts from parents were explored by the research team using 4 perspectives: the plot and evaluator responses to the narrative; the voice of the "I"; relationships; and placing people within cultural contexts and social structures. Parents interviewed were very receptive to being interviewed by phone. We found that this enhanced their trust in the interview process and subsequently led to our ability to gather rich data. The use of multiple lenses of analysis gave insightful interpretations of their journey to home.


Asunto(s)
Padres/psicología , Percepción , Estrés Psicológico/psicología , Cuidado de Transición , Adulto , Niño , Preescolar , Femenino , Humanos , Lactante , Entrevistas como Asunto , Tiempo de Internación , Masculino , Estrés Psicológico/complicaciones
16.
J Pediatr Oncol Nurs ; 34(2): 122-129, 2017.
Artículo en Inglés | MEDLINE | ID: mdl-27170679

RESUMEN

OBJECTIVES: Caring for a child with cancer can disrupt family life and financial stability, in addition to affecting the child's social, emotional, and educational development. Health care providers must consider ways to minimize the negative impact of illness and hospitalization on the child and family. This study evaluates a nationwide initiative to educate and support parents to administer chemotherapy to their child in their home. METHOD: A questionnaire was circulated to parents participating in a home chemotherapy program from 2009 to 2014 (n = 140), seeking their perspective on the education program, and the benefits and concerns associated with administering home chemotherapy. Data analysis was conducted using a combination of descriptive statistics and content analysis. RESULTS: Questionnaires were received from 108 parents (response rate = 77%). Overall, the program was positively evaluated with 100% of parents (n = 108) reporting that the training met their needs. More than one-third of parents (41%, n = 44) initially felt nervous about home chemotherapy but reported that the education program helped assuage their concerns. Benefits included reduced financial costs, reduced travel time to hospital, less disruption to family life, and less stress for the child and family. No medication errors were reported during the evaluation period. CONCLUSION: An important feature of the program is the partnership approach, which ensures that parents' decision to enter the program is informed, appropriate for their situation, and centered on the needs of the child.


Asunto(s)
Antineoplásicos/administración & dosificación , Terapia de Infusión a Domicilio/métodos , Terapia de Infusión a Domicilio/psicología , Atención Domiciliaria de Salud/métodos , Neoplasias/enfermería , Padres/psicología , Adulto , Niño , Preescolar , Femenino , Personal de Salud , Humanos , Masculino , Neoplasias/psicología , Relaciones Padres-Hijo , Encuestas y Cuestionarios
17.
Int J Integr Care ; 15: e035, 2015.
Artículo en Inglés | MEDLINE | ID: mdl-26528098

RESUMEN

INTRODUCTION: There is an increasing number of children with complex care needs, however, there is limited evidence of the experience of families during the process of transitioning to becoming their child's primary care giver. The aim of this study was to explore parents' perspectives of the transition to home of a child with complex respiratory health care needs. METHODS: Parents of children with a tracheostomy with or without other methods of respiratory assistance, who had transitioned to home from a large children's hospital in the last 5 years, were invited to participate in the interviews. Voice-centred relational method of qualitative analysis was used to analyse parent responses. RESULTS: Four key themes emerged from the interviews including "stepping stones: negotiating the move to home", "fighting and frustration", "questioning competence" and "coping into the future". DISCUSSION: There is a need for clear and equitable assessments and shared policies and protocols for the discharge of children with complex care needs. Direction and support are required at the level of health service policy and planning to redress these problems. This study provides evidence that the transition of children with complex care needs from hospital to home is a challenging dynamic in need of further improvement and greater negotiation between the parent and health service provider. There are tangible issues that could be addressed including the introduction of a standardised approach to assessment of the needs of the child and family in preparation for discharge and for clear timelines and criteria for reassessment of needs once at home.

18.
J Burn Care Res ; 36(1): 159-66, 2015.
Artículo en Inglés | MEDLINE | ID: mdl-25185932

RESUMEN

Skin grafts are used to treat many types of skin defects in children, including burns, traumatic wounds, and revision of scars. The objective of this prospective randomized controlled trial was to compare the effectiveness of three dressing types for pediatric donor sites: foam, hydrofiber, and calcium alginate. Children attending a pediatric Burns & Plastics Service from October 2010 to March 2013, who required a split-skin graft, were recruited to the trial. Patients were randomly assigned to the two experimental groups, foam or hydrofiber, and to the control group, calcium alginate. Data were gathered on the management of exudate, assessment of pain, time to healing, and infection. Fifty-seven children aged 1 to 16 years (mean = 4.9 years) were recruited to the trial. Fifty-six patients had evaluable data and one participant from the control group was lost to follow-up. Most children required skin grafting for a burn injury (78%). The median size of the donor site was 63.50 cm (8-600 cm). There was a statistically significant difference in time to healing across the three dressing groups (x [2, n = 56] = 6.59, P = .037). The calcium alginate group recorded a lower median value of days to healing (median = 7.5 days) compared to the other two groups, which recorded median values of 8 days (hydrofiber) and 9.5 days (foam). The greatest leakage of exudate, regardless of dressing type, occurred on day 2 after grafting. No statistically significant difference was found in leakage of exudate, pain scores, or infection rates across the three groups. Calcium alginate emerged as the optimum dressing for pediatric donor site healing in this trial.


Asunto(s)
Alginatos/uso terapéutico , Carboximetilcelulosa de Sodio/uso terapéutico , Poliuretanos/uso terapéutico , Trasplante de Piel , Sitio Donante de Trasplante , Heridas y Lesiones/terapia , Adolescente , Vendajes , Materiales Biocompatibles , Niño , Preescolar , Femenino , Ácido Glucurónico/uso terapéutico , Hemostáticos/uso terapéutico , Ácidos Hexurónicos/uso terapéutico , Humanos , Lactante , Masculino , Estudios Prospectivos , Cicatrización de Heridas , Heridas y Lesiones/etiología , Heridas y Lesiones/patología
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